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STACY BLYTHE - YOUTUBE RECORDING

Stacy Blythe – Understanding and loving complicated children: the impact of trauma and prenatal substance exposure on children exposure on children.

Stacy Blythe is an Associate Professor in the School of Nursing and Midwifery at the Western Sydney University, and the Deputy Director of the Translational Research and Social Innovation group at the Ingham Institute for Applied Medical Research. Her research focuses on the health and well-being of children in out-of-home care and their families (both birth and foster families). As a lecturer in Infant Mental Health, she is particularly interested in infants who are prenatally exposed to harmful substances (e.g., illicit drugs). In addition to her nursing, teaching and research qualifications, Stacy has post graduate certification in Developmental Trauma. Stacy has also been an authorised foster carer for 18+ years. Drawing on her skills as a nurse, knowledge as a researcher and experience as a carer, Stacy provides training to health care workers, social service providers, educators, and foster/kinship carers in relation to working with children who have prenatal substance exposure and/or have experienced trauma.

Stacy has experience with both qualitative and quantitative methodologies and literature reviews. She provides research supervision to undergraduate honours and higher degree research students.

Research interests include infant mental health, substance exposed infants, foster care, foster carers, the foster care family.

DR ALBERTO VELOSO - YOUTUBE RECORDING

Dr Alberto Veloso who is a psychiatrist, paediatrician and Dyadic Developmental Psychotherapist has worked extensively in the foster care system and with children with ADHD or ASD or mental health needs. He wants you to know the importance of regulating your own brain and the need to take care of yourself first so that burnout and blocked care in your brain doesnt damage your child. It can truly lead to relationship breakdowns with your child.

So what can you do instead? Consider really understanding Dan Hughes and Jon Baylin's brain based parenting summary on how to strengthen your parenting systems. Use the power of a yarn and gathering all the people in your child's life to nut through issues as they arise. If you don't get a hospital admission after waiting hours at an emergency crisis centre, it may actually be for the best. Hospital admissions aren't always the safest spaces for children with a trauma background. Time spent co regulating in your relationship is actually doing the work. Some constructive advice to really help realise the power of co regulation and self care and why both are so, so important to make time for.

00:00 - Start 00:56 - Welcome 01:29 - Care is a team effort as its relationships that heal and often services are limited 03:03 - ADHD and ASD can be difficult to identify in children from a trauma background so focus on therapeutic care as the starting point 05:05 - Therapeutic care affordability and access challenges mean you need to be flexible. Caring for a carers brain is critical just like caring for your childs brain. You want to avoid blocked care or burnout which can lead to relationship breakdowns. If a child's brain is rigid or emotionally driven, chances are yours might be too. 11:50 - As an industry we need to acknowledge and put parents and carers first to avoid relationship breakdowns 13:11 - Solve problems with a yarn and group conversations 18:50 - Start talking about and actioning the 5 stages of how to strengthen parent child relationships from Dan Hughes and Jon Baylin released last year here (https://www.fcawa.com.au/wp-content/u...) 20:17 - Crisis management and in patient admission is not always the goal for children from trauma - use the time to self regulate your child. If they are self harming remind them you dont blame them and that you will work together to keep them safe. Always.

DR ALBERTO VELOSO - TRANSCRIPT

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice evidence based learning that assist kinship, permanent and adoptive parents/carers in supporting young people.

PCA Families has a zero tolerance of child abuse and follows child safe standards.

I would like to acknowledge the traditional custodians of the land and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are speaking with Dr Alberto Veloso who is a psychiatrist, paediatrician and practices in Dyadic Developmental Psychotherapy, a form of refletive therapy, based on Dr Daniel Hughes model, where the child, therapist and family work together exploring different understandings in a current safe relationship. Dr Alberto has worked extensively in the foster care system and with children with ADHD or ASD, and has supervised teams working with children’s mental health needs at Headspace.

00:56 Welcome Dr Alberto. Is there anything else you would like to share about yourself?

Thank you so much Sonia. I just want to say it has been wonderful to discover and be involved with PCA Families and the work you do because it really aligns with what we do to support parents and kids to look after their kids. So it’s a pleasure to be here.

01:29 I understand your focus is on the family, as distinct from individual therapy and counselling. Can you tell us about that?

One of the drivers for creating our service Relational Minds and the work that I focus on now is that I used to practice a lot as an individual practitioner, as a psychiatrist, and also my colleagues and psychologists and therapists. You would always have this problem where in treating the kid on their own you wouldn’t get much traction and you always get frustrated because you wished someone worked in the family. In all of our training in the psychiatry industry people always say it’s the relationship that heals. It’s always one of these phases. It doesn’t matter whatever therapy you use. So why don’t we work on relationships then. And there is third aspect which is the lack of access to services and therapy. So we said, what if we work with the parents and carers who are with these kids all day every day. What if we work with them to provide them with therapeutic experiences so it will be so much more effective than once a week with a therapist.

03:03 I understand that you see a lot of families struggling with children with ADHD or ASD in out of home care. How do you support those families?

As we know ADHD and ASD have become really prominent in our community and in our community conversations and the awareness of the symptoms and problems around ADHD and ASD. It has really increased over the last decade. Those carers in out of home care have been seeing this all the time. So now they are looking at maybe this is what we call ADHD or ASD. Its really tricky in the out of home care space because we know that the children have experienced trauma that affects their emotional development. So it becomes really tricky to identify is this part of ADHD or ASD or is this part of their trauma. What we say is this is really difficult. Its impossible to categorise the trauma as different from the genetics and typical neurodevelopment. So how we support families is that regardless of what the ending diagnosis is we create a therapeutic environment. Once we get though that we can create a therapeutic environment and then work through the usual ways of managing ADHD or ASD or supporting young people. We can still get benefits with their symptoms but do it in the context of their trauma and do it in the context of this difficult out of home care system they are in.

05:05 You have developed a therapeutic model that seems affordable and works, particularly when you are operating in remote areas or are managing burn out and blocked care. Can you tell us more about that?

Affordability is such a challenge. For me there is a bit of a double layer. Just to access any services is tricky. Being able to access NDIS funding which relies on specific diagnoses and of course many in out of home care wont qualify for a diagnoses of ADHD or disability funding. So affordability becomes really tricky. One of the ways we try to manage that is to create a team because the second problem is how do you get access to a child psychiatrist or a paediatrician.

So I work in a regional town of Mildura with Headspace and Relational Minds. The problem there is to get into a GP can take weeks and to get into a Paediatrician can take 6 to 12 months and then there are costs involved. So we have tried to get inventive and weve tried to hold a policy that finance should not be a reason why a family can’t get care. Then we need to go and find our brokerage partners or talk to other people to find a way to get help. There are so many ways so that you can get help but you need to be flexible to get help.

Why is flexibility important? We talked about burnout and blocked care. One of the things I have been trying to promote understanding of recently is about caring for a carers brain. We talk about the child’s brain being emotionally driven and there are logical systems that don’t function for that child. Guess what parents have the same nomallian brain too. So just like the childs brain when responding to trauma will work much more emotionally and rigidly if the carer has experienced blocked trauma from the child. Guess what happens to the carers brain. The same thing happens.

For example, a parents brain normally wants to be near their child. There is something about that relationship that brings you joy and you want to be in their proximity. If you have had difficult experiences for long enough that part of your brain will shut down. I want listeners to think about times where for some strange reason you don’t want to be near your child anymore. Or if you don’t feel happy or feel joy in the presence of your child. Your brain then automatically starts to think negative things about your child. I have met carers that say when a child walks into the room they have to stand up because they are defensive just in case something happens. They love their child but there is something happening in the parents brain that they cant help. We need to acknowledge this more. The parent and carer feel like they have to keep going to find support and services and feed their child and manage all the other things.

One of the last things to fall apart for a parent or carer is their executive functioning system. How many parents or carers feel like they now have ADHD. I can’t remember things anymore. I can’t seem to get myself organised when I used to be able to do that. This is back to that ADHD question. Certain things that those children have gone through and that have impacted their brain have affected the parent or carer. So its really really crucial that we make things affordable and provide support for the carers so we take the weight off their shoulders so that they can focus on the relationship and building connection with their child. I think that’s the challenge for the industry. For so long families have had to do everything. Sometimes as soon as child protection closes, suddenly you are out on the open water, sometimes without a raft. The stress that comes with that. So we need to acknowledge that a parent or carers brain can react in a traumatised way and it then may lead to blocked care and the answer to it is self care and support. Just like we say to parents and carers, you build connection with the child so that those logical brain systems will repair and kick in to rebuild the brain, parents and carers have to do the same for yourself. But my experience is that parents and carers are not as good at putting themselves first. They get told a hundred times to put themselves first and even that is not enough.

11:50 Its almost offensive to be told put yourself first?

In the event what we want to do is prevent burnout and ruptures that are terminal for the parent child relationship or arrangement. Its something that we really need to acknowledge. As I mentioned before I’ve seen parents that have had kids for 15 years and then that relationship breaks down and ends. That is so tragic for the carer and the child. If we had acknowledged that caring for parents and carers is just as important as caring for the child, I would hope we would prevent things like that. Of course there are other things like funding and services to support that. We are trying to solve as much as we can in our little drop of the ocean.

13:11 When we talked you mentioned a 15 year old that was self harming and the importance of getting everyone together to talk it through and tell some stories to get perspective.

I think that’s a really good point. What do we do when we are trying to solve a problem with anything in our lives? What does our brain need? Translating the science. Again sometimes the brain can access a quick solution but other times it doesnt. Sometimes we really cant solve a problem. Whether it’s a finance problem that we have or some other problem. Sometimes just sitting down having a conversation with someone and nutting it out. I work a lot with the Indigenous community. The yarning process with Aboriginal people is one of the most helpful ways to solve a problem.

What does that actually mean? Yarning about the problem means sitting down, trying not to find a solution for the problem, just talking it through and looking at all the different angles. Of course someone needs to guide that and come up with an action plan as otherwise you can yarn for years. Sometimes you just need someone to coordinate the conversation. Often this is our biggest role. If a parent comes to us with a problem, whether its self harm or something else, we might say lets sit down and have a yarn with all the parties and see what comes up. After that there will usually be, almost without fail, one step that leads to the next step. It might not be a clear solution. For example, when we talk about issues with school such as the problem or frustration that our school system doesn’t take into account how difficult our children’s brains are and there are not enough teachers or supports around. Brainstorming. We often forget to brainstorm. Its difficult because it takes a level of openness. We need to encourage openness to say everyone is doing their best here. As a carer we need to go into the school without all guns blazing saying hey you aren’t doing a good enough job. That teacher who also has another 25 kids will also get defensive. Its also important for the teacher not to blame the parent as well. We have to know we are all doing our best. Can we get together and what else can we try. Let’s get together and talk about how we survive.

17:00 That process of yarning and understanding the problem does so many things. It creates solutions, it helps carers feel supported, it is one of the forms of self care, it can address the issue of blocked care. It can help the child realise they are being thought of and that there are a group of healthy minds thinking about them. There are so many benefits to putting minds together. Again it is relationships that leads to the solutions.

17:50 The other thing you mentioned is that by having that yarn you are learning more about the background to the parent or carer as well as the child.

Its important to have a focus. Each of these yarns has a focus. When I’m leading these yarns I always set the tone by saying a couple of things. The child is doing their best. The parent or carer is doing their best. We are doing our best to support the carer. Let’s start with that assumption that everyone is doing their best and start with that assumption and lets see if we can get somewhere.

18:50 Are there any resources that may be helpful for families that you would like to reference?

The Australian Childhood Foundation have been really prominent in propagating their understanding of Childhood Trauma. Dan Hughes and Jon Baylin released a document last year. Start to think about openly. What if my brain is actually doing things that I cant help. Just like all of my support team are saying the remember your child is doing their best I need someone to do that for me. That’s a good read and these podcasts and others like it. Even though you may have heard it before.

20:17 Anything else you want to mention today?

Managing the crises and the roles of hospitals and things like that. I think its important to know that there is always a crisis service out there for you. It may be frustrating when you go to hospital with a self harming or suicidal child and you get told its ok you can take them home. This is where that openness and yarns are really helpful. Help me understand why this is happening. It’s really hard to do that in the moment because you are really worried about your child but its really important to know that there are systems out there. One of the things I often get asked about is the hospitals and in patient admission. I work in hospitals a lot and it’s really something that we would like to provide to families as a respite or as a break. But there are other things that come with that. Because of resources and the way things are working, sometimes it’s actually not the safest place. I’ve seen lots of children go in and come out in a worse condition. Or find that transition from that environment to home really difficult. One of things is I advise all the families I work with to always maintain safety. Its always ok to go to hospital and sit there for 7 hours if its needed to regulate your child. Id rather do that than put your kid in hospital. Despite the impact on work and sleep and all the other things. Id much rather do that more times and do that repeatedly than have them admitted in as a patient. Children that have been traumatised really struggle in that environment. The nuances they have to manage with other people that are really unwell in there. Its hard enough to manage their relationships at school. Imagine in an intense cage with really unwell people. Sometimes its ok to be in that sense. But the purpose is to change the environment so that your child’s regulatory system comes back online. That’s probably one of the important messages from a doctor and hospital perspective that you often wont hear about. If there are opportunities for conversations about this we can be more open to it.

Again it is about the relationship and everything seems to come back to the relationship. Again the message is I don’t blame you for wanting to cut yourself or wanting to die. This is what parents brains might really struggle with. That’s the message. I don’t blame you for this but we are going to do whatever it takes to keep you safe. If I have to sit with you here for 5 hours that is exactly what Im going to do Yes the other health practitioners and services might have other suggestions and other things to say. But you and I together are going to keep you safe.

It takes a lot of self regulating though to get to that point. That’s where its not easy to do on your own and you may need to involve other people. You can see the layers.

Thankyou for the advice and your time today.

OTHER RESOURCES

Relational Minds

Dan Hughes and Jon Baylin ACF 5 Parenting Systems

MELANIE MCGRICE - YOUTUBE RECORDING

Melanie McGrice is an Advanced Accredited Practising Dietitian with a Masters in Dietetics. She specialises in Early Life Nutrition, also known as the 1st 1000 days, from preconception to toddlerhood, when a child's brain, body and immune system grows the fastest to set the foundations for a child's future. She is also a Permanent Care. When Melanie began fostering and later a permanent care Mum she did the research that planted a seed. So many children in foster care /permanent care were born to parents who had alcohol during pregnancy or who had a drug addiction. So Melanie used her training and knowledge in nutrition to do some further research into FASD (Fetal Alcohol Spectrum Disorder). What did Melanie find? Nutrients that were deficient because of alcohol or FASD. Nutrients that could slow the impact of FASD. Nutrients that were in smaller volumes in children from FASD. Impacts after puberty. Melanie wants us to do a blood screen of nutrient markers so that you can treat the deficiencies ASAP. Makes sense. That combined with a nutrition assessment might do wonders for our community of children. Find out more about her research here. 00:00 - Start 01:08 - Fostering and permanent care led to a focus on the first 1,000 days with nutrition 04:25 - Links between FASD and nutrition: alcohol impacts nutrition by impacting appetite and absorption 08:06 - Research tells us that particular nutrients are impacted by alcohol during pregnancy, that particular nutrients are low in these children, that particular nutrients can slow or reduce the severity of FASD and that kids who had FASD have less intake of Vit D, fat and calcium 11:16 - Key messages: get a blood test on your child's nutrient markers and a nutrition assessment through a dietician with pregnancy or paediatrics expertise ASAP. Consider choline as the best research at the moment shows that babies dont have enough choline, which is an important nutrient for brain development. 14:11 - Supplement through food if you can and supplements where its not possible 17:30 - Research suggests these children have impaired satiety so they snack more. Also suggests they are more active and eat more. Ensure others know this and dont assume when they leave the table they aren't hungry. It may be they need more occasions to eat as they cant sit still to eat. they have a higher risk of disordered eating and constipation is common. 21:26 - Fussy eaters? Play games and use strategies to keep them at the table. If you change something, go very very slowly. 25:00 - For older children: post puberty girls can put on too much weight so be aware of this impact. 26:50 - Safe Spaces?

MELANIE MCGRICE - TRANSCRIPT

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice evidence based learning that assist kinship, permanent and adoptive parents/carers in supporting young people.

PCA Families has a zero tolerance of child abuse and follows child safe standards.

I would like to acknowledge the traditional custodians of the land and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are speaking with Melanie McGrice about nutrition and how you can help your child in the first 1000 days of a child’s life.

Melanie is an Advanced Accredited Practising Dietitian with a Masters in Dietetics.  She specialises in Early Life Nutrition, also known as the 1st 1000 days, from preconception to toddlerhood, when a child's brain, body and immune system grows the fastest to set the foundations for a child's future.  She runs a global business, training other dietitians in this speciality as well as running a specialist clinic in Melbourne.  She's also a Permanent Care Mum. 

Welcome Melanie

01:08 Can you tell us about how you came to specialise in Early Life Nutrition?

Quite a long complicated story. I think for many reasons I was driven to this area. Ive done fostering for about a decade and just had in my heart to take on a little one. As most of the audience would know you need to commit to a longer period of time. I was a bit of a workaholic. How will I manage that. I did and then they said to me this little one might go into permanent care would you consider that. I was a bit shell shocked but said yes. She ended up going back to her birth mum. That planted a seed for me so after that I looked for opportunities to take a little one through permanent care. With all of that the fostering and the little ones that I took in and then finally getting my permanent care daughter you get so much experience that you don’t get from anywhere else. That in conjunction with my nutrition background and research meant that I just learnt there is so much opportunity in the first 1,000 days for these little ones. I feel so frustrated that I learnt so much that I wish I had of known that earlier. We want to give every family an opportunity. There are some kids that are highly likely to end up in permanent care and have been born addicted to drugs and whose parents have had alcohol throughout the pregnancy. Having read the research there is so much you can be doing in the first 1,000 days while their brains are still developing and which can minimise problems down the track. I would like to see the systems and the processes change so that these little ones getting more attention now rather than years and years down the track.

04:25 You've been reviewing the evidence on nutrition and connecting that with FASD. Can you tell us more about that?

There is a lot. The best place to start is to help people understand why nutrition is so important for Mums who drink during the pregnancy.

Firstly alcohol has a really big impact on the birth Mums nutrition and therefore the growing fetus’ nutrition in 2 key ways. The alcohol itself is high in kilojoules. Putting that into context, sugar or carbohydrates provide around 16 kj per gram. Alcohol provides about 29kj per gram. So it’s really high in calories. Often for that reason, depending on how much someone is drinking it decreases appetite and impacts their ability to organise their meals and so forth. The drinking in of itself can cause malnutrition for the Mums. Obviously if the birth Mum is providing that nutrition through to the fetus, if Mum is malnourished then baby is malnourished. Secondly, Mums can end up with secondary malnutrition by not absorbing the nutrients properly. With alcohol in particular it can cause malabsorption. So people who don’t know this term of the first 1,000 days it is a really important period of time. It is when a babies brain grows the fastest it will grow in its life. Its when the genetic programming happens for our immune system and our learning ability and all those kinds of things. So the key messages are is if mum is drinking or doing drugs and not eating properly during pregnancy, then that is having a massive impact on the brain and immune system and everything else. But it doesn’t end there. There is so much brain development and opportunity in those first few years for the healing to be done or risks and harm to be reduced. There is a really great quote from a research paper “ Although abstinence from alcohol is the only way to prevent FASD,  it is possible to reduce its affects through dietary therapy.” That was a wow why aren’t people doing more moment?

08:06 So, can you take us through some of your findings and the minerals and supplements?

There are 5 messages I would talk through.

1.    Research papers have found there are particular nutrients that are often impacted by alcohol intake during pregnancy. Particularly B vitamin, Vitamin A, magnesium and iron.

2.    There are other research studies that have found particular nutrients are found to be low in offspring of children who have been drinking during pregnancy. Those in particular are studies on zinc, magnesium and choline.

3.    Nutrients that have been identified that can potentially slow the development of FASD or reduce its severity. This is what most people want to know. There are 4 categories.

a.    Vit D a brain hormone.

b.    Neuron development in the brain: Vit A, zinc, folate and choline.

c.     Third is antioxiadants. Vit E, folate and selenium.

d.    Fourth is the research around iron and Mums not having adequate iron in pregnancy.

4.    Kids who had FASD and their dietary intakes compared to the general population. Those general studies found kids with FASD has less intake of Vit D, fat and calcium.

11:16 Key Messages

Key messages are that first of all if you have a child with FASD or Mum has been drinking or doing drugs during pregnancy, my personal belief is that whatever age you are getting them, when they are having a blood test do a blood screen of those nutrient markers. Things like iron, folate, B12 and B1 needs to be checked. Any doctor should have a good idea of key nutrients to check in a blood test. Vit D I would add as well.

The second thing is people should be having at least one nutrition assessment through a dietician with some expertise in pregnancy or paediatrics. Hopefully people can get that funded through Medicare or NDIS early intervention. I think that would be a great idea.

The third thing is the best research at the moment is around choline. Its really important for brain development. The research shows that most babies don’t have enough choline, particularly for these babies at the risk of FASD. The research isn’t strong enough for the authorities to say everyone should be on choline. Its not professional of me to say that but I think everyone should be getting advice on that. It’s a really important question to be asking. The other one would be Omega 3. I would also ask if they should be supplemented.

14:11 When you talk about supplementing do you mean food or supplements?

As a dietician I tend to be very much food first but when I talk about choline and Omega 3 its really supplements. Although you can get both those nutrients from food, the amount these little ones would benefit from is higher than what you would get through food. They have a lot to make up for. And if you take too much of some nutrients it can have additional affects. For example if you take too much iron you can end up with constipation. With choline and Omega 3 you don’t want to be taking tablespoons of it but taking a good quality supplement of those 2 nutrients is generally going to be beneficial for most of these kids.

Choline I bought as a powder, which is quite hard to find as it normally comes in a capsule, and mixed it into my daughters milk. Omega 3 you can get in a liquid form and you can mix it into something or put it on a teaspoon like a medicine or in a syringe. Be aware when you buy supplements that you are getting the right ones. I’ve seen Omega 3 gummies on the market but its more lolly than it is supplement. So I believe its worth getting proper advice and speak to somebody who can give you proper advice. I can’t mention brands on social media. Also doses change depending on kids age and other things as well.

16:50 Where is the best spot to look for a dietician or nutritionist?

GP referral. Dieticians Association (https://dietitiansaustralia.org.au/) and look in there. Although you could see any dietician someone who specialises in pregnancy or paediatrics.

17:30 Helping children understand when they are hungry, full or satisfied can be a part of our world. Do you have any tips?

This is something that I really noticed in my daughter so I had a lot of massive aha moments when I looked at the research. The research offers a few key messages.

One is that these children seem to have impaired satiety so they tend to snack a lot more than other kids. The research doesn’t explain why but I would put two and two together to show that these kids are generally more active than the general population. One study found that kids with FASD eat the equivalent of one more meal per day compared to other kids. So quite an additional amount of calories. There is also a higher risk of them being underweight, whether due to picky eating or hyperactivity or the fact that they need these extra kj’s, we don’t know yet. Again its about knowing your child and knowing what their growth charts look like and knowing that they might be a bit more hungry than usual. One of the things I have really noticed is that if they go off to daycare or what have you, as soon as they leave the table, other people assume that they have had enough to eat. Kids with FASD find it hard to sit still for long enough. So its really important to ensure that they are getting adequate food. It might be about having more eating occasions.

Higher risk of disordered eating.

Constipation is more common, which could be due to them not having as much to eat. Not getting enough fibre or getting dehydrated due to more physical activity or not having enough to drink.

Personalised advice is important to understand what is going on for your child, but its interesting to know what are the common things.

21:26 You mention extreme pickiness and one of the questions we often hear from families is how to help with extreme pickiness or sensory issues. Do you have any tips here?

Playing food games all the time. So we are cooking. Even if we cook and she doesn’t eat it. Picking foods from the garden and growing your own food. Picking something from community gardens. Going to the supermarket and taste testing. Or playing games like pasta games where you thread the pasta. Or food in sensory play for little ones. It might be messy like a container or mashed pumpkin. Trying to use food as a sensory play tool is great.

When kids are picky you usually have to go very very slowly. It may be they only eat chicken mcnuggets from Mcdonalds and plain pasta. So if that is the case its about going very slowly. It may be about trialling the chicken mcnuggets from somewhere else or just having them out of the packet because they normally have them in the packet. Sometimes its tiny changes to get them to progress and expand their horizons. It really depends on how extreme the child is.

25:00 What about older children?

Never too late and you should never give up. Part of the reason why Im passionate is because anything you can do in those early years will have a multiplied affect later on. Babies being born where they know Mum was drinking during pregnancy, straight away put them onto Choline at the same time and get these things started right from the word go.

For older kids I would still do all of the things I have discussed. A blood test for nutritional deficiencies. Personalised assessment. Tracking their growth.

One thing with growth is that post puberty girls can go to the other extreme and put on too much weight. Tracking caloric intake and trying to have a variety of nutritious foods. Not too late but not as great.

26:50 What are some things you would have done to create a safe space at mealtimes for the children in your life?

One of the things that is frustrating for me is trying to get my daughter to stay at the table at meal times. Accepting the fact that that’s not going to happen. If she gets up its more about getting her back again. I have a sensory cushion for her to sit on. Rather than going ok that’s the end of the meal. I do things at the table like I’ll read to her to keep her entertained. I found one thing that is not dietetically correct but it works really well. Telling them not to eat healthy foods. Playing it up “Your not allowed to eat that salmon…..that will make you too smart”. “No more carrots for you… you will be able to spot everything before I can spot it”.

Trying to make things fun and knowing your child. It can become stressful particularly when you know how much good these foods are doing for your child. They can pick up on your angst so easily. The more fun we can make things the better.

29:33 Do you have any recommendations for resources for parents and carers?

Not really on nutrition and FASD yet. I would like to make some in the future.

I have a youtube channel and a website.

My youtube is “Nourish with Mealanie” (https://www.youtube.com/c/NourishwithMelanie) that has videos about nutrition generally. Like I have one on iron rich foods. Im fairly easy to track down. I hope to put some resources together by then.

Website is www.nutritionplus.com.au

Just that you guys are doing an amazing job. All the other adoptive parents and carers I have met are incredible. Its not about a perfect diet but just adding little things.

Thankyou Melanie.

OTHER RESOURCES

www.nutritionplus.com.au

www.youtube.com/c/NourishwithMelanie

Dieticians Australia

ROBYN PAPWORTH EXERCISE PHYSIOLOGIST - YOUTUBE RECORDING

Robyn Papworth is a paediatric exercise physiologist, developmental educator and trainer who is passionate about helping children’s body and brain to be ready for kindergarten and school through movement and play strategies.

Robyn reminds us that movement development can be fun and there are critical milestones that are part of a progression, not a race to deliver at a point in time. She share exercises we can do to help with visual tracking, core strength, crossing the midline, spatial awareness and shoulder stabilisation, all key elements to sit in a classroom and learn. She reminds us to connect feelings and visuals with letters, not to teach the ABCs. We need to meet the child with where they are at. If they need to throw toys off a table and see how it moves through gravity, offer them more of that in a fun playful way. Stack up cups and bowl them over or roll and tumble over some teddy bears. Setup play spaces that match your child's needs. Observe your child's sensory needs and match it. Is it light or darkness, noise or quiet or other things they need. Not every child needs a weighted blanket. And the best exercises for children with a trauma experience is exercises for the vagus nerve. They help when we have that sick feeling in the top of our chest. Simply blowing bubbles, singing and humming help. Its important to stimulate our 8 senses, yes not just 5, including propreoception (pressure), vestibular (balance) and interoception (inside sensations). Just spinning on a chair can help or playing with frozen toys or even just pushing a heavy basket of washing across the floor. Find out why by listening to the recording!

00:00 - Start 01:33 - Robyn's passion comes from personal trauma 03:18 - Milestones are a checklist of progress not a race to get to. Three things are critical to work on: visual tracking, tummy time and crawling. Looking at a board and then down at your page involves visual tracking and you need strength in your body to sit and just holding your head up is an action that works against gravity. Visual tracking, tummy time and crawling develop these critical skills 11:55 - Early intervention is critical but you can also do a lot from home to help the brain develop and start working on the top part of the brain, the pre frontal cortex. Fight or flight keeps us in the bottom part of the brain but the brain is plastic and can develop! 14:43 - School readiness involves learning 5 skills: visual tracking, core strength, crossing the midline, spatial awareness and shoulder stabilisation. 22:26 - Learning ABCs is not the focus. Learning about objects and where they are placed or what does a letter feel or look like is the concept they need to learn. 26:45 - Self regulation needs practice and includes three components: impulse control, movement control and emotional regulation. It doesn't come naturally to those from trauma. And for those kids that just want to throw blocks off the table, offer them more of it in a fun playful way. Tap into where they are at and provide what their body and emotions need. 31:31 - Play spaces need light and dark spaces so divide up spaces with low furniture. Observe your child's sensory needs and adapt the space to them. Not every child needs a weighted blanket. 34:52 - The best exercise when there is a trauma experience is working on the vagus nerve, running from the back of our cheek to the gut. It explains why we have that sick feeling at times. Things like blowing bubbles, blowing through a straw, singing, humming or buzzing help create vibrations in our mouth or throat that helps us settle. Hugging a ball helps our chest and monkey bars and tunnel ball are even better as we get stimulated by going upside down. 39:06 - The three senses we need to know about are those focussed on pressure (propreoception or where you give yourself a hug), vestibular (balance and car sickness) and interoception (inside sensations). Some important exercises include pushing a heavy basket across the floor when arriving home from school, spinning on a chair or playing with frozen toys. 46:26 - Exercise physiology is about coordinating movement and the motor cortex. Its right next to the sensory cortex. We may need help when bumping into friends or getting a mug to our mouth. 49:10 - Get outdoors to connect with visuals and smells and emotions and to different play spaces every day to challenge your body movement so it continues to learn and develop 51:27 - Remember where your child at now is where you need to start.

ROBYN PAPWORTH EXERCISE PHYSIOLOGIST - TRANSCRIPT

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice evidence based learning that assist kinship, permanent and adoptive parents/carers in supporting young people.

PCA Families has a zero tolerance of child abuse and follows child safe standards.

I would like to acknowledge the traditional custodians of the land and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are speaking with Robyn Papworth about movement and play.

Robyn Papworth is a paediatric exercise physiologist, developmental educator and trainer who is passionate about helping children’s body and brain to be ready for kindergarten and school through movement and play strategies.

Robyn has had her own experience of early childhood trauma and has lived experience of parenting a child with dyspraxia, a planning and movement disorder which makes skills such as catching a ball, getting dressed, holding a pencil more challenging to learn and master.

Robyn can help with what to do when you have questions like these that are often overwhelming for parents and carers:

  • What to do next if my infant isn’t walking by 24 months?
  • If my child is tripping over frequently or is clumsy with their movement
  • If my child is finding it difficult to focus and regulate their body and emotions at kinder
  • How to support my primary school aged child in learning to read

01:33 Welcome Robyn. So where does your passion for the work you do come from?

It’s come from my own history and my son. I used to work in aged care as an exercise physiologist with people with Parkinsons, Stroke and Dementia. And when my son was born and he has been delayed with all of his motor skills up until this point so I helped my son. Through helping my son I have then helped children all around the world.

With regards to the trauma space I just get it. I remember being recruited by DHS years ago and in this report it said this little fellow they may struggle to connect with you. For this little fellow we just connected. I wasn’t afraid of him and so he wasn’t afraid of me. He could see the crazy clothes I wear.  So that’s what I am passionate about.

No judgement. If a strategy works it works. If it doesn’t work reach out and we can try and find something different. Every child is different. I’m different. Its a completely open space where we can chat about movement and play without judgement.

03:18 How do parents and carers know what milestones to look for in their children in the early years (from 0-5)? Can we discuss the important ones?

The Maternal Health Checks are important not to miss. Please I encourage every family. If you miss it just catch it up. Know that this checklist is just a guide. My son and daughter were born one minute apart as twins but he was sometimes 18 months behind on the checklist in some areas. Does that make him any different or any less than his sister. Absolutely not.  It just shows us on the checklist there are certain areas that are important to progress through. Its not a race to get to each checklist.

You see it in categories 0-3 months and 3-6 months. Please know it is a pattern. If your child has not reached it by that 3 month mark, its ok we just need to work through that pattern.

Visual tracking is number one. When a baby is born it will ideally look up at you and goo and gaa and be all cute and look around the room to see what is happening around the room. Visual tracking for children from trauma is even more important. For my situation I came from neglect so I wasn’t getting that visual tracking. I don’t know why I wear glasses now but in my profession I attribute some of it to the early period. I didn’t have that environment that encouraged me to look up at to look around my space for my family members and caregivers. Just like everything else visual tracking is a movement we need to practice.

If you have a child in your care and you are noticing that they are not looking up and not connecting, don’t make them connect with intense eye contact. Setup a lot of fun visual tracking activities. I would put pictures on the wall and get the children to swat the pictures with a fly swat or throw some socks at the pictures on the wall. We make sure some of the pictures are above and below our head so we are looking all around the room.

Visual tracking is a skill that kids with autism sometimes lack. Eye contact and looking up at our caregiver may have been missed. That really important looking up phase. So what that looks like in school is they are not able to look up at the board and look back at their paper easily. Visual tracking is number one.

If you are looking for any of these words too and you think that’s exactly what I need, go to my facebook page “Play, move, improve” and type in “visual tracking” and I’m always sharing free ideas and activities.

The other key milestone is tummy time and laying on the tummy. Children like my child who has dyspraxia or children who are born through c section or children who were sitting up in strollers for a long time and not getting that movement can be quite floppy in their body. Its not their fault that we carry. My son struggles with these skills but that’s not my fault. Sometimes we are reluctant to help because we take that blame on ourselves. Please don’t take on the blame. Please just know the brain is an amazing organ that can always improve. We just need more tummy time activities. You can lie on the floor and roll a ball back and forth. You can do that straight away even as a newborn. With a newborn they need to hold their head up so they don’t get smothered and I never put a blanket down beneath them. For newborns you can also do it with them lying down on you as you lye down on your back. This is also relevant to teenagers. We don’t do silly little games with our teens. For them we might use their screen time. We don’t take away their screens as that can be disastrous but we get them to do a short period of time on their tummy while they are talking to their friends.

Crawling is really important too.  Before we worry about sitting or walking, we really want crawling to be in here. Its really around 12-18 months for crawling as it is a really challenging motor skill to learn. They have to hold their head up and work against gravity. So its quite a complex process. 

I was born C section as well and some c section babies have this problem. Also culturally if you are carried around a lot.  Also the oldest child might be carried around a lot.  The youngest child can sometimes be more independent with their movement.

So start with those three visual tracking, tummy time and crawling.

11:55 We all know that early intervention therapy, services and strategies are critical to the best outcomes. Should our expectations differ for children who have come from a disrupted or traumatic childhood?

If anything I would encourage more of these things. The system is hard and waiting lists are hard so Im really passionate about giving these quick tips and strategies.

If you think of the developing brain we develop our brain from the brain stem, from the  bottom up. Even me Im still working on it I have my own therapy team working on the pre frontal cortex area. With trauma with neglect and survival we sit in the bottom part of our brain so we need strategies and therapy to build up the top part of our brain in the pre frontal cortex. The part that has impulse control and self regulation and expressing our emotions. So I encourage all children from trauma to be involved in early intervention.

There are so many therapists around. We are all an allied health team. If you have trouble with your speech pathologist they might say for this are of development we go to an exercise physiologist or an occupational therapist. The earlier the better when the brain is growing and developing and is more plastic. We can leave it to later on too. In my generation when I became a troubled teen people started to do something.

Its great how everyone can share and direct to the right resources. Allied health people are not scary. We are finding the gaps.

14:43 Talking about school readiness, can you tell us about the 5 skills you mention that you need for school?

Visual tracking again. To be able to read we have to be able to move our eyes. If we have poor attachment or poor connection we may want to shut out sometimes. So we may not be able to track and look around our environment.

Core strength is the other one and that’s why tummy time is so important as a baby and an infant. When I am sitting at a table I need to be able to sit like this. If I don’t have the core strength to sit up at the table everything becomes exhausting.  Even if I’m sitting at mat time, if I can’t sit up the day then becomes very fatiguing. Good news is our school work can be done on the ground or in a swing. It doesn’t have to be done at the table.

Crossing the midline is another skill. There is a part of our brain called the corpus collosum. It’s the bridge that brings the right and left brain together. It allows me to brush my teeth on the opposite side of my body.  It allows me to write my name on the top left side of the page. It allows me to put my jumper on. It allows our left and right sides of the body to work together. What we see with children of today is we aren’t as active as we were a few years ago so we aren’t doing as much climbing, crawling, rolling around outside. Screen time is very much in the middle of our body using one hand. This skill requires using both hands. I bring my right hand up and tap my left knee and vica versa. When a baby calls they reach with their left hand forward and their right knee come up. That is why karate, dance and gymbaroo are important.  Access activities like that which are beneficial for the body.

Spatial awareness or relationships is another skill that develops after the age of 2. I have two objects here and I want children to tell me the distance between each other, close and far away, because when we are out in the yard we want children to learn oh you are really close to your friend can you move a bit further away. They learn concepts in play first. They then learn maths concepts like on top of, underneath, in front of, behind .and next to. These concepts are really important for maths. If you imagine the number 2 in front of the number 5. Or fractions we need the number 1 above the number 2. So if we don’t have these concepts then we get to these words coming at us at school and we don’t know what they mean. So with objects we just play games like that. I want you to put the teddy bear on top of the table. The teddy bear goes underneath the table. Those concepts in play makes it less stressful. Also out in the yard I want you to wait in front of Harry for example. I want Sally to wait next to Harry – different concept. So that is where we see some of the challenges in school because we are confused by these really simple space concepts. 

Having twins we are still working on those concepts for one of our 10yo.

Shoulder stabilisation is the last one. So being able to keep the shoulders strong without flopping. It’s a fine motor skill activity like hand writing, doing up buttons, opening up a snack box etc. Anything where we take our body weight through our arms. Climbing a pole or ladder, crawling, rolling all builds up shoulder stabilisation. We do these skills before holding a pencil or using scissors. If the main part of our body isn’t strong enough we cant hold a pencil and do all those other things. So slides and climbing frames are important.

22:26 Many parents and carers can become preoccupied with teaching the ABCs thinking that it helps with reading. I know you are passionate about motor skill development for reading. Can you tell us more about that?

I think its cultural and it can show the success of a parent or teacher.

I hear families asking me what reading level is your child at. I think don’t worry about it. It’s all about progression. Reading level is exactly like those checklists. It doesn’t matter if they walked by 13 months, or crawled by 11 months, we sometimes get stuck in the months of the reading level. Its about progression. Are they better6 weeks past. Are they better this time compared to last time and is the brain learning and progressing. That’s what we are trying to encourage in the education system. The education system pushes curriculum. Sometimes a parent will go for a school that has better data. But that does that mean that our child is going to be well rounded in the future. Who knows.

I do a system where it is a tick a dot and a star.  We have achieved the goal tick, I couldn’t do it yet a dot, the star is where I need a bit of help. In 6 weeks they may not be able to crawl but they might be able to do it with less help. So with reading, are they are to do more identifying letters or more letter sounds than 6 weeks ago.

With reading, the concepts of putting an object one in front of the other is important. I often do b, d, p and q and that drives children crazy.  If I flip a b in front of a mirror it’s a d. If I flip it upside down it’s a p. When I turn this pen upside down and round and round its still a pen. But when I move these 4 cheeky letters, they change their name and their sound. So what I do is Id rather they know what their body feels like than what the letter looks like. I go ok the letter has a big long stick and a big fat tummy and the tummy is on the right. We start with those concepts. Which side is right. Which side is top and which side is bottom. We start with those concepts and have fun. Even those games on the wall with a fly swat, rolled up socks, having fun, rather than lets read this boring book over and over again. Its special awareness and visual tracking for sure.

26:45 A child’s social and emotional development can be improved through play. However, self regulation can be challenging for our families. Can you help us understand how we can help with self regulation?

Self regulation is a skill we need to practice just like crawling or throwing a ball. Some 44 year olds struggle with that. So we need to practice and master. Play gives them that opportunity to practice and master.

There are three components. Impulse control, movement control and emotional regulation.

Impulse control: Can I stop myself from not wanting to crash that tower or take that donut off the bench.

Movement control: Can I coordinate how rough or how gentle my movement is.

Emotional Regulation: When I’m frustrated can I identify it, manage it and go along with it. When you come from trauma it does not come naturally. You need to practice it. I have to do beautiful vagus nerve activities. Not vegas as in las vegas. It settles the nervous system down so we can self regulate. A lot of our little ones are in fight or flight all day. Even myself. There are zones of regulation where you colour your arousal or energy levels. I don’t think Im ever in calm or in the green zone. So we have to learn this skill and it takes practice and time. In play we do a lot of turn taking. So I play a game where we stack a tower with blocks and I take my time with putting a block on and they need to wait. We work on it slowly and we talk through it  “I can see that your hands are getting tight” and “I can see that you are getting frustrated”. We also talk about the beautiful part of teaching your brain to wait. At school we need to wait sometimes in the line.

Some children will be stuck in the play where they just want to throw the toys off the table and see how it moves through gravity. That’s different to impulse control. For children that like to swipe things off a table or watch things crash. for those children I provide more of that. The play and rough and tumble. So I set up stacks of plastic cups for them to roll down. Or stacks of teddy bears and we roll our body through the teddy bears and crush or throw the teddy bears out the way. So we give it to them in a playful way.  When we find out where they are at, tap into what they need and what their body and emotions need you get a different outcome compared to trying to battle it.

31:31 I understand you help with practical ways to setup a play space. Can you teach us?

Again what I do with a child is I see what they need. What their body and their brain need. We observe their play to do that.

A child may come in with a hoodie over their head and they want sunglasses and they want everything dark. That’s me. I turn the light on for the camera but otherwise I live in darkness. We have to make sure there is a space for that. So a fort or a tent for that. A pocket of space where they can climb under a table or find a dark space and be comforted.

With multiple children in a space you of course may have another child that needs bright lights and everything bright and sensory. So we have another zone for that.

I like to divide rooms with an ottoman or a small low shelf. We can still see over and see they are safe and observe the children but the children cant see over that because they are smaller. They will feel like it is separate and cosy.

Resources need to match the child. Ive just done my interior design course because Pinterest and others are showing all these spaces and designs. But does my child need that. Just because your cousin has a weighted blanket, does your child. We always have to adapt the environment to your child. Sit back and watch your child with their sensory hat on. Are they avoiding brightness or big loud sounds or are they seeking brightness or rough and tumble and throwing things up in the air. Adapt the space to them so it suits them as much as it possibly can.

Darkness might even be wearing a hat inside. Leaving the light off when you walk in a room.

34:52 What are some of the best exercises you think every parent or carer should offer their child?

Knowing what you do I am going to give you very specific vagus nerve exercises for those children in fight or flight. If you were a kindergarten teacher I would give you another set of examples.

The vagus nerve goes from behind the back of the cheeks (cranial nerves) all the way from the back of your face to your gut. When we feel sick that we can’t eat, that’s the vagus nerve not happy. The sympathetic parasympathetic nervous system isn’t happy. The nervous system is the fight or flight. For me I’m very vocal when under attack. I was in fight a lot of the time. Hence the troubled teen because I was very vocal as a troubled teen. A lot of other children will flee or hide in flight. Its important to bring in this vagus nerve parasympathetic nervous system. Its our rest and settling nervous system to turn that fight or flight off.

You start at the top of the vagus nerve at the top of our face and play fun games like blowing bubbles. Then a child will start to settle. They are creating pressure in their mouth and stimulating the vagus nerve. Blowing through a straw and blowing a pom pom across the table, is pressure in the mouth stimulating the vagus nerve.  For children that get dropped off at kinder or school in fight or flight. Give them very cold icy water through a straw as it stimulates the vagus nerve when we give it really cold temperature. That’s why you see women with ice blocks as it settles down the nervous system. Really icy cold water through a straw. It doesn’t sound like movement but we want to help our children settle first.

Another thing we like to do is sing or hum as it creates vibration in our throat. That’s why yelling feels good but we need to do something more appropriate like singing, humming or buzzing. That all creates vibration in our throat and stimulates the vagus nerve.

If I cuddle myself or a ball we move down to the chest area.  Even better when we go upside down. So playing things like tunnel ball we get stimulated going upside down. Monkey bars and rolling down the hill stimulates the vagus nerve. Just do one of these every day to settle the vagus nerve.

39:06 There are more sense than the ones we know about (smell, sound touch, sight, taste). Can you tell us about the other three systems and why they are important?

Propreoception- that was when I gave myself a hug. Think of it as pressure. It’s the feeling of going into the fetal position or throwing things across the room. What we need to do is provide it in an appropriate way. Sometimes they are great at school but when they come home things go astray. Have a washing basket at the front door with heavy books in the bottom and get them to push it as far as they can through the house. We get a few things. Propreoception with pressure to push something heavy along the hallway. We also get vagus nerve because we are tipping our body forward. That simple thing of I need your help I cant get the washing basket to where it needs to go. It may not take away all of it but it might be enough to reset.

The vestibular system is about our inner ear that causes vertigo for some of us as we get older, or car sickness or boat sickness. When it works well it allows me to move my head left and right, Im adapting my shoulders so I don’t fall over. When I put my head forward I don’t fall over. For our children who spend a lot of time on screens. Again big word search it in my facebook site for exercises – lots of free ones.

Lots of rolling for the vestibular system as he goes in a 360 degree movement. He didn’t like it at the start and saw it as punishment. Even on a desk chair spinning around where my eyes have to adjust so I don’t fall off the chair. Even after screen time its time to roll or does these activities. My son has two or three of these activities a day working on their goals. My oldest daughter she is more of an introvert so we do meditation as part of our normal routine to help her settle and refuel herself after the busy school environment.

The eighth sensation is interoception. That is the ability to understand what is happening inside our bodies. An internal sensation. It tells us when we are hungry or thirsty or need to go to the toilet or are hot or cold. If my heart rate feels an increase it’s a warning sign that I need something. Its very difficult for children from trauma because they have often turned off and disconnected from their body for survival. So we need to teach how to reconnect with our body.  Some simple tips is playing with different resources, one being icy cold. You can even put their toys in the freezer. Pencils and icy blocks. Which one is warm or cold. What does it feel like when it is cold. Yuk, nice, hot. Given them language to connect with it. Get them to use a word or something to connect with it. Similar to when we bake in the kitchen. Which one feels slimy which one feels warm which one feels cold. Hot is too dangerous with children. I use cold and warm as its safer. As they get older we can provide them with a nice cup of decaf tea and ask them how it feels. But I don’t test that with children.

Other things we do when its hot. With some children they will wear a jumper at summer time. Or they can be in a singlet and shorts in winter. We want to talk about describing words. I can see that your cheeks are really rosy. I can see that your lips have gone blue. We hold them to a mirror so they can connect with that and see that.

46:26 What is some of the science sitting behind spatial awareness, balance and motor skills or exercise physiology in general?

Exercise physiology works the motor cortex. Its the side that coordinates our movement. How to pickup my mug and get it to my mouth. How do I craft my hand to hold the sand. Right next door to the sensory cortex. They sit right next to each other. Its how we know ouch I’ve touched the stove and pulled my hand away. Or Ive bumped into my friend. Sorry recorrect my balance and I wont bump into my friend anymore. Its all about getting the information from our play space and how our movement coordinates with that. Sometimes its confusing who sits where. Exercise physiology is is all about providing you with the exercises to do. Physiotherapy and chiropractic are a bit more hands on. Its all about self management with exercise physiology. We are more about what to do with your own body. Occupational therapy is more about the environment and providing the right resources. We blend a lot. Find the allied health person that best suits your child or the person you are caring for. Im very neuro based about the brain but other exercise physiologists are all about the muscles and ligaments and heart and diabetes. Every exercise physiologist will not be the same. So always when I make a call to an allied health professional I ask what is your specialty or who are the parents you help. We all have a specialty and we cant know everything. And don’t feel afraid to say no to one professional over another.

49:10 I know you are also passionate about outdoor, nature and sensory play. Can you tell us why?

If we aren’t giving our body sensation, then we can’t have coordinated movement. I know this as I used to work in an area of Melbourne where everything was urban, concreted and flat. I was noticing differences in balance to where I live now in the Yarra Valley where its very hilly and mountainous. Very different children’s balance skills just from environment. In a flat environment we don’t need to challenge how we move and coordinate our body. WE don’t have potholes to navigate or big hilly driveways to walk down or up. That’s why I love these programs that are out there now like bush kinder. You can be in an urban kindergarten but you go out and have these bush experiences. I encourage play in nature after school, on a weekend. Just plan out a different play area or beach and get them to explore all different environments in nature. What I like about nature as well is, especially for those that have come from trauma, is that it helps us to reconnect in. If I stay in this calm space that’s where my brain will stay. But if I get out and feel the breeze and the sun and smell the flowers and the ocean, I feel more connected with me. Its very important for movement and for self regulation and for emotional regulation. You don’t want to push a child to meltdown but its very dangerous to always stay in our comfort zone.

51:27 Is there anything else you wish to comment on today?

I apologise for throwing a lot at you. Where you child is at now is where we need to start. Don’t worry about where they need to be. As you know my 3 children are all at different stages, strengths and all have different challenges. We don’t compare them with each other but we just have goals every day based on where they are at.

Reach out and feedback if something works or doesn’t. That’s what I love.

Thanks Robyn.

OTHER RESOURCES

Play Move Improve Facebook Link - (20+) Play Move Improve | Facebook

Skills for School Readiness - What motor skills do children need for school? – Play Move Improve

NDIS Funded funded (capacity building) custom home exercise physiology programs -  NDIS Custom Home Exercise Physiology Program – Play Move Improve

Child Development Podcast - Podcast – Play Move Improve

Self Regulation through Movement and Play - Self-regulation through movement and play online training document – Play Move Improve

Robyns video on why she is passionate about exercise physiology -  

 

SMOOTHER TRANSITIONS WHEN LEAVING CARE - JENNA BOLLINGER YOUTUBE RECORDING

Jenna Bollinger is a trauma informed psychologist who has worked with young people who have experienced early childhood trauma.

Jenna recently shared some insights in an article with Philiip Mendes from Monash Lens on how to create smoother transitions when young people leave care and the importance of offering extended support beyond 18 or 21.

Jenna helps us understand more about those insights.

00:00 - Start 02:26 - Focus on Accommodation First: studies showing up to 50% of young people leaving care have experienced homelessness over the past 12 months 04:18 - Skill Development: Living skills comes from home learning not skills development programs 13:09 - Recap on Skill Development: Skill development comes from repetition with support and by people they trust and who can explain things to them in ways that they can hear it and make sense of it. They also need someone who can answer questions when they forget or make mistakes. 05:12 - Engagement and Connection with Old: Young people want ongoing connection and love. They want those relationships to continue for life. They want meaningful connection like being picked up and being brought to family dinners or birthdays or significant events. 09:34 - Engagement and Connection with New: Young people need helping building formal and informal networks. They need help with transitions. They need slow, gradual and relational based transitions, similar to school orientation programs. 15:50 - Outcomes: International young people in care do worse than their peers. They have experienced high trauma. There are fundamental differences in whether their families can get it together enough for them to return home or not. 19:06 - Accommodation Stability: There is insufficient housing, insufficient support for paying rent and if you have to leave at 18, what do you do? 20:28 - The markers show a little worse across the board 20:50 - Employment, education and training: Trauma impacts capacity to learn in a structured environment meaning education is more difficult and schools are not equipped to deal with it. Often it may be that young person isn't ready for education until they are older, and then the financial support may not be available. 22:35 - Relationships and Support Networks: Young people need to be independent but more importantly they need to be interdependent. We need to be independent and know how to do the washing or care for a pet, but more importantly, we need to have a relationship with a caring, supportive significant person that we can call for informal support when we need it. We need structured support to teach us that. 25:50 - Outcomes: For every $1 spent on extended care, $2 is saved. Investing time and money beyond 18 or 21 is important! 27:50 - Resources: We need caseworkers to advocate for young peoples entitlements (for example TILA or the Better Futures and Home Stretch Program). And we need to ask young people what they want to do with a pool of money eg driving lessons, university fees or otherwise.

SMOOTHER TRANSITIONS WHEN LEAVING CARE - JENNA BOLLINGER TRANSCRIPT

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice evidence based learning that assist kinship, permanent and adoptive parents/carers in supporting young people.

PCA Families has a zero tolerance of child abuse and follows child safe standards.

I would like to acknowledge the traditional custodians of the land and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are speaking about transitions, such as leaving home or leaving care with Jenna Bollinger.

Jenna Bollinger completed her PhD in the Department of Social Work at Monash University and is a psychologist in private practice. Jenna has worked in out of home care in different capacities and is the Director of Psychology and Clinical Services for Knightlamp, offering trauma informed approaches to high risk behaviour and to young people who have experienced early childhood trauma.

Welcome Jenna

00:58 You recently shared some insights into the ways to create smoother transitions for care leavers in an article you published with Philip Mendes through Monash Lens. While those insights were framed around residential out of home care, I imagine there are many parallels for our families. Can you tell us a little more about the background to your article?

Absolutely. Philip and I put that article and another article together that was examining and forming an argument for why we need to ensure that extended care is here. It has happily been accepted by all the States now but at the time of the article NSW had not jumped on the bandwagon. Essentially extended care has been brought in but it largely excludes residential care. So the articles were forming an argument for why extended care was important and why it needs to include residential care (This is about extending support to 18 to 21 year olds)

2:10 I understand there are some important aspects to consider that offer care leavers the best outcome. Can we talk about those aspects and look at them one by one?

  • 02:26 Accommodation

A no brainer really isn’t it. If we don’t have somewhere safe and secure to live our basic needs cannot be met. For a lot of kids leaving care it’s a really sudden transition. Telling a child the day they turn 18 is the day they have to live independently is a real challenge. Not many 18yos are equipped to work and look after a home and take care of all the tasks associated with living. But if they haven’t got somewhere safe and secure to live then they haven’t even got a shot to do all those things. So making sure that we have accommodation for young people as they transition from care is important.. Some of the studies were saying up to 50% of the young people that have left care over the past 12 months have experienced homelessness. So it is a huge problem for a lot of young people leaving care. So it needs to form one of those integral things that we work towards for young people as they look towards leaving care. It’s a frightening experience. You don’t know what you know until you are out there and experiencing the reality of it.

  • 04:18 Skill development

It’s a really interesting one. We need to be able to do things in order to live independently. We need to be able to work the washing machine. We need to be able to budget money. We need to be able to get ourselves meals. We need to be able to (depending on where you live) drive. We need to be able to do those things. That being said, I was just in a meeting a couple of days ago where one of the things that was raised in a meeting the other day was that living skills programs don’t contribute to outcomes. I wondered if that was related to the check box nature of a lot of living skills programs.

  • 05:12 Engagement and connection with old groups (contact with old carers, inclusion in activities)

In terms of maintaining older connections, that was a really interesting. This was one of the only points of difference in the interviews and the young people raised the importance of ongoing contact with staff. This would also relate to foster and adoptive parents about the need to maintain contact after care. They were talking about the need to maintain contact once they have left care. But what they were talking about was there was a need for that contact to continue, to stay in touch, to call when there was a problem. In an ongoing way the young people wanted to feel a connection to the people that cared for them. For most of us we have those relationshps for life and for those young people those relationships need to continue as well. Maybe its not possible for life but it should certainly be possible for an extended period of time. One of the young people I spoke to and it was quoted in the article from Philip and Katherine, by this young man who was fabulous, was  “We felt like all these blokes they still speak to you today, they have met my kids, they offer hands when you need it, they lend a hand and they are part of my family”. He said he felt loved by the carers. I said you feel like they really cared for you. He said no I felt loved.

07:42 What did those carers do? Someone else I spoke to in the adoption community, the research was saying really connect in and be a real grandparent at the time the adopted child has their own child. They were saying to really checking in. I wonder if there are some similarities there?

The Lens article says the staff need to do that. Go and pick them up and bring them back to family dinners for birthdays and significant events and be supported to do that. Not just off the clock. Once you are for a young person and build a relationship that carries on until the young person doesn’t need you anymore. Just like a child that you birth or adopt. That ongoing contact means those relationships are not superficial or time limited or only when they are being paid. Those relationships continue to exist and be meaningful beyond the period of care. Knowing that you have someone you can call is important. It sounds like real inclusion and activities and events to engage with.

09:34 Engagement and connection with new (supports, peers, other)

One of the things that seems to come about, because of the limits of residential care, is that young people can’t have friends over in the same way that other foster, adopted, biological or other kids do. That limits the capacity to build relationships in safe and healthy ways. For kids to spend time with their friends they are having to abscond from placements. They have to come home instead of having sleepover instead of having normative experiences. What we want to do is help young people build those informal supports as well as formal supports going forward. Once they have left the home, they need support networks available to them.

One of the proposals, particularly for residential care, is to put together something for them like the Staying Close program in the UK. I have my issues with that program but that’s neither here nor there. What it is talking about is that the support workers are familiar to them before they leave care. Once they turn 18 and they move onto their new placement or support, that’s not a whole new set of people that they have never seen before. Those people have built relationships with them since they were 16 or 17, whenever the program develops, that the people are known to them. The people that they will be living with in their accommodation are known to them. Those transitions are slow, gradual and relational. So when we move onto our next home we know who we will be living with. If we think about starting school, often schools run transitional programs. The kids get taken to the schools a couple of times to get to know the teacher and the other kids. Presumably the same happens in Year 7 where they get school tours and meet the teachers and other kids. So when they transition in it is not a complete culture shock. They have someone they can sit with. They know where you have to go on day 1. We want to do the same here. They know who can help them if the plumbing is not working. They know who they will be sharing the kitchen with.  We want to make that more gradual, more relational, so its not the same kind of culture shock. Not moving in cold turkey into shared accommodation.

13:09 Recap on skill development

I think when it comes to skill development we want to ensure that is done relationally. We are not checking boxes on a book to say yes Ive shown you how to put a roast in the oven. That that is done together. Come and help me do the washing. Here is how to not get the colours to run if you don’t separate them.. Here is how you change the filter in the dryer or washing machine. Through relationships we learn how to do those things. We do them with the people that we feel safe and connected to and we do them repetitively. Its part of life. Part of growing up. Part of growing up and getting older and having chores. I will show you again and next time you may be able to do it by yourself. As we are building skills we are doing it together. Does doing a course work? Probably to a degree. When you go off and do a course it may work, but how much do you take in when you listen to someone tell you one time. How much do you take in just one time. What we need is to learn how to drive safely with people that we trust. People that explain it to us in ways that we can hear it and that make sense to us over and over again. When you don’t remember how many minutes to hard boil or soft boil an egg you need someone you can call and say hey I’ve forgotten how many minutes for a boiled egg.

15:50 What are the likely outcomes for young people leaving care?

Not great is the take away message. Internationally kids who leave care do worse in general.  There are a million reasons for that. It would be virtually impossible to nut out what is different. But children in care have experienced huge trauma. They are at risk of significant harm if we do not intervene. Those people leaving care are doing so because their families could not get it together. So there are fundamental differences between families that can get it together and where they return home. We start off with different pre care experiences. For some young people, kids go exactly as they should. They are part of that family and they go home to Mum and Dad whenever they need to. That is not always the case. When we look at residential care we are looking at a different cohort again. Youth in residential care have higher rates of drug and alcohol use. At baseline they are not the same group. When we look at the leaving care literature, it looks like they do a little worse, but its also a different baseline. But what we know is that young people leaving care do worse than they peers.

  • 19:06 Accommodation stability: About 50% will experience homelessness in the first few years after they have left care. So we know that we are not doing a great job. There is insufficient housing. There is insufficient support for housing. Everyone knows how expensive housing is and how difficult it is to find a rental. How are you paying that? Who is paying that? How do you find that? If you are home with Mum and Dad you can stay until you find a rental, but if you kick them out at 18, what do they do. So we need more supported funded accommodation.
  • 20:28 Wellbeing: They do a little worse across the board in those markers as well, although not too differently over time.
  • 20:50 Employment, education and training: The impact of trauma impacts on capacity to learn in a structured environment. Education is generally more difficult. Schools are not always equipped to manage trauma. We need to create more trauma informed schooling and support. Most financial support is gone by 25, but it might take them until 25 before they engage with education. How do they pay for that then. Without any education, the minimum wage is around $700pw so how do they pay for $500pw for housing. Schools will continue to get a bit better at it. We need to create more.
  • 22:35 Relationships and support networks and Independent living: We need to be independent but what we need more than that is to be interdependent. We need to cook dinner, keep on top of the washing, if we have pets they are well looked after and all that sort of business. But what we need most of all is to do that with someone that cares for us and that we feel safe to call. If we have made a mistake we need someone to call and say I made a mistake I don’t know what to do. Or call and say I forgot to put petrol in the care and now I cant get to work can you help me? We need people to call to help us with those things. So we need to build up support networks available to us. We need young people to have informal and formal support. We need people to call. Its their job and they will be there, so we don’t have to wait for someone tomorrow in business hours. We also need someone to call when we hear a funny noise and we are scared. We need someone to call at 10pm at night and say I don’t feel good right now can we chat a little bit. The formal and informal supports are so important and that connection with old and new. The fact is that we feel safe with and grown up with aren’t done with us because we are 18 or 21. We continue to matter and we matter not just when we are being paid. And we need a structured support to teach us

25:50 Do those outcomes improve significantly with the right supports in place?

It looks like yes. International research that is all fairly new does appear to show benefits for extended care and ongoing support. For every dollar spent we make $2 in savings. Which is one of the arguments we have made in the articles, that while residential care is hugely expensive, but if we invest in ensuring our children do well we will save money later in the criminal justice system, in the mental health systems, and if they don’t need any of those support services then that’s better. The cost is not a good enough reason not to do. So putting the right supports in place is important. When we don’t know who we will live with or who we can call or what is going to happen tomorrow, how are we going to feel good? It takes time and we need good relationships to do that.

27:50 Are there other resources or factors families could be referred to?

We need caseworkers to let us know what young people are entitled to like the TILA allowance. Whatever it is we need our caseworks to advocate for our young people’s entitlements.  Some services can pay for therapy or driving lessons, so we need to make sure young people are getting them.

We need caseworkers to advocate for young people. But also what is fundamentally important is that we need to talk to other young people and find out what they want and let them have agency. When they are 15, 16, 17 they know what they want from their life. It shouldn’t be the grownup saying this is what you are going to have. It should involve asking what sort of life do you want to live. Not many can voice it but if they can we can say we have this pool of money, and we can put it to driving lessons, university or whatever. How do you think this can be best spent for your life? And taking that into account.

Thankyou.

OTHER RESOURCES

//lens.monash.edu/@politics-society/2021/02/01/1382756/advancing-smoother-transitions-for-those-leaving-residential-out-of-home-care">Article on Smoother transitions when leaving care by Jenna Bollinger and Philip Mendes

//lens.monash.edu/@politics-society/2021/02/01/1382756/advancing-smoother-transitions-for-those-leaving-residential-out-of-home-care">https://lens.monash.edu/@politics-society/2021/02/01/1382756/advancing-smoother-transitions-for-those-leaving-residential-out-of-home-care

Knightlamp Psychology - https://togetherthevoice.org/presenter/jenna-bollinger/

 

PETER SIMMONS YOUTUBE RECORDING

Peter is a permanent carer to his grandson. After 71 court cases and almost 5 years of court appearances Peter knows how onerous the process of caring for a child can be. So what was his biggest learning during that process?

This is where PCA Families has been a key partner in his and his grandsons life. PCA Families has offered support and funding for selecting a school that has strong pastoral support and teachers that take a close personal interest in his grandson. This has been the game changer in his grandsons life. PCA Families have provided support and funding for extracurricular activities where his grandson is mentored, not just in the sport but also on getting the right mindset and keeping fit, or even to get him thinking about what he needs to do to be successful so that he might become a champion. And his grandson has been very successful, both in school amongst his peers and in sporting events beyond school. Peter reminds us its important to look at how you progress your child in relation to you and the larger family. He suggests holding back contentious issues until your child is developmentally ready to hear them and to work with the extended family and the court around disputes with compassion. He reminds us that its the child that will lose out if you don't. Peter also reminds us that the process is long so be sure to find people that can support you.

00:00 - Start 02:25 - Court order variations can take time 03:24 - The legal system is complicated and time consuming 04:23 - DFFH was a big support 05:20 - DFFH supervised family contact and now a close family friend is responsible 06:40 - School selection is so important. It has completely shaped our grandson 07:50 - Extra curricular support has allowed his talents and confidence to shine 09:18 - Being mentored by sports coaches on discipline and mindsets has been the icing on the cake 10:23 - What are some of the wins along the way 11:30 - Travelling to Myanmar and seeing an orphanage and those who are financially disadvantaged has had a positive impact too 12:17 - Funding education and extra curricular activities is key. 13:29 - Other lessons 14:50 - Outcomes arent always what you expect 16:36 - Find people that can support you through the long court processes and beyond

PETER SIMMONS YOUTUBE TRANSCRIPT

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice evidence based learning that assist kinship, permanent and adoptive parents/carers in supporting young people.

PCA Families has a zero tolerance of child abuse and follows child safe standards.

I would like to acknowledge the traditional custodians of the land and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are speaking with Peter Simmons about how the support from PCA Families has made a difference to his family, and in particular to his Grandson.

Peter and his wife are now permanent carers of their grandson. Peter’s grandson (GS) is his son’s child. His son has an acquired brain injury (ABI) and after a brief relationship, his GS was born. His GS and the mother remained in hospital for several months after his birth. The mother also had serious mental issues and Peter and his wife were refused access to their GS during that time.  DFFH intervened and after 71 court cases, Peter and his wife now have the role of mother and father in his GSs life. 

Welcome Peter.

01:00 What were some of the challenges along the way and what can we learn about that and from you. I imagine the biggest challenge for you was the 71 court and roundtable appearances in under 5 years. Can you tell us more about that?

Initially we did not know what the process was and had no clarity around what it would look like or indeed that it would take nearly 5 years. That was the biggest challenge. Just after we started DHS said we will make you party to the proceedings so that meant I sat at the table with their barrister, and I was able to have some input.

02:25 What were some of the variations to orders and complexities?

That’s probably the contention above all else. The system allows variations to orders but a lot of them were frivolous. Each time they were made, and the were made mainly by the grandson’s maternal grandmother, we would still have to go to court. They would generally be over in about 5 minutes. About one third were variations to the order and not one of them was successful

03:24 What was the learning

From a legal perspective, how complicated the legal system is. Certainly not a friendly system for people that don’t have a legal background. I have a part legal background in work that I have done. So for me I understood what was happening but the process was onerous. That was the issue that went on and on. I believe the process has been changed in Victoria now and the process has been streamlined. The nearly 5 years wouldn’t happen now due to some legislative changes.

04:23 Who was the biggest support during that process?

DHS were my biggest friend in that process. The contention they had is that the process of reunification with the child and the mother, because of issues with the mother was very difficult. So they were opening the door for us to have him more often than not. The mother eventually made the decision for us to have him more than herself. It was a process of elimination and a timing issue but onerous all the same.

05:20 In terms of family contact there was the mother and her parents and your grandson also. Can you tell us more about that?

DFFH offered supervised access only to the mother. We were not involved. DFFH would pickup our grandson and take him to the DFFH office to meet our grandson. Over a period of years the order changed and the mother in law went out of the picture and his Mum was able to see him under supervision with us. We had a family member that looked after that visit about every 6 months. A good arrangement.

06:40 It sounds like you have a very compassionate young grandson and you have also been selective about school selection.

This is where PCA Families come very much into the picture.

We were able to fund the first few years of his schooling at a private school with about an 80% discount from the school. The school were struggling to cover what we couldn’t and then we got introduced to PCA Families. Its PCA Families that has allowed him to continue at that school, now in Year 7. It’s the school that has shaped him. Strong pastoral care around the kids. The teachers took a close personal interest in him. It is wonderful.

07:50 You also have a number of extra curricular activities along the way also. Can you tell us about them.

He is just a really talented young boy in a number of different areas. Mainly sport where we had extra funding but also funding around tuition in mathematics. In his sporting space he excelled in swimming funded by PCA Families. He won a significant event in swimming last year. More recently he clearly has some extraordinary talent in clay shooting. Recently he won the first competition he ever went in against A grade clay shooters. At 12yo they are earmarking him saying he has the potential to be something really significant in that space. Its early days though but he is extraordinary. Again funded by PCA Families.

09:18 Is the unexpected outcomes of being mentored the secret ingredient?

He does circuit training and running again funded by PCA Families.

The mentoring side and who is having influence in his life and indeed all young people is relevant. His running coach was a Commonwealth games runner. His clay shooting coach was third in the World a few years ago. They spend time with him about discipline and getting your mind right and keeping fit. It’s not just showing up and doing the session and they go. They have taken quite a bit of time mentoring him, especially where he is excelling in something like clay shooting. Building relationships.

10:23 What are some of the other wins you have had along the way?

His other wins are really around sport as the catalyst as his school is with peers.

It’s the confidence that he has gained by having people around him through these funded activities that have encouraged him and have gone beyond just the learning of school and life and identified what he needs to do to be successful. They have talked to him a lot about how to become a champion.

He was in a speech competition where they had to get up and do a talk. For his whole year level, he won first prize, sponsored by the Lions Club in our area. That was very significant.

11:30 You have also travelled and exposed him to other environments?

I founded an organisation that works in the humanitarian space in Myanmar. He has been over there with us and has spent time over there in an orphanage and with people in the poor areas if you like. That impacted him in a really positive way.

Then we were able to take him to Europe last year so he has been to Paris, Germany and Italy and is quite well rounded.

12:17 If PCA Families were going to help others, what would you say is important?

Funding of his education is key. If PCA Families were not able to do that I’m not sure where he would be right now. He would probably be at another school and not receive what he has had and not be able to be who he is now.

Other points of success are the sporting ones. That looks like now that if he keeps going on the trajectory he is, the funding has been absolutely critical for him to get where he is, but its another to get to a level now where other people now look like they will sponsor him. So that’s fantastic.

13:29 Any other lessons today?

It is important for people who are in the process, who may or may not be supported by PCA Families. It is the issue of how you then progress our grandsons development in relation to who he is. In relation to who his Mum and Dad were or are. We have encouraged him that while his Mum and Dad can’t be who they should be as far as being his Mum and Dad go, he has access to them and he understands what the process is that has caused him to be with us. He has open access to everyone to ask questions.

14:50 The outcomes are not always what you expect so don’t carry expectations with you.

In the court processes. Ours went on and on and on. Its very important to realise that while you may think that your case has every merit, and you have expectations as to outcomes, it’s the magistrate that will make that decision and it may not go the way you think it would or should. People need support around that when you get to those points. Particularly where there are disputes around custodial issues between the parties. If that’s not dealt with effectively and with compassion, it is the children that will be affected by it. We have been able to keep our grandson away from that contention. He has grown up not knowing about that and we haven’t talked to him about that as it’s not necessary at this point in time. Maybe when he is older at 18 we can discuss that. Protecting him until he is developmentally ready for the information.

16:36 Any last comments to share today?

The key issue is not to give up because the process that they will go through in children’s court doesn’t always bring an atmosphere of encouragement that you are actually going to get a good result. Road blocks as we used to call them come up. Work out how to get around it and who can support you. That might be a suggestion where people like myself and others can support others going through the process. 

OTHER RESOURCES

Humanitarian Learnings www.graceworksmyanmar.org.au

SHANE BAUTISTA: REPAIRING CHILDHOOD TRAUMA - YOUTUBE RECORDING

From the age of 2, Shane didn’t have the normal upbringing. His mother left and he lived in kinship care with his Nan and Pop until his Nan dies when he is 5yo. He lives a haphazard life with many moves, including a breakdown in his permanent foster care family, and he is subjected to sexual abuse and unimaginable losses as people come and go in his life. He attempts to end his life once, suffers bulimia as a form of self punishment, struggles to fit in and feels broken and dead inside. Yet outside he appeared happy, confident and was able to achieve success in the creative arts (he joins Johnny Young Talent Team and stars alongside Colette Mann and works on Neighbours and other TV series). Eventually he finds his voice, comes out as gay in his 20s and finds success in nursing and education after reuniting with his foster family).

Shane wants others to learn from his experiences. He encourages parents and carers to validate children and to learn and educate themselves where they don't understand sexual identity or gender and to provide a safe space without judgement so that children may be an open book and share their feelings. He wants parents and carers to understand that sometimes that means Scouts or Sports are not enough and that encouraging children to have inner drive is important. He also recognises that if children are befriending the misfits, or older friends, it may be because they are being bullied or don't fit in, or it may even be that any attention, even sexual abuse, is better than no attention. Your child might just be looking for someone to befriend. Further to that Shane reminds us that sometimes children will attempt suicide, and live with an eating disorder or even reject parents and carers outright, just so those people they love the most don't have the opportunity to reject them. Belonging and identity are so interwoven.

He wants Government and support agencies to look for ways to support families to stay together with the right supports in place and for social workers to get some lived experience behind them so they can support children and know what questions to ask. Above all else Shane wants all children to feel safe, secure and to feel like they belong and to get psychological and other support and diagnoses early. Shane hopes that other children can learn from him rather than turning to drugs to run away from the inner turmoil. Shane leaves us with insights we can all learn from in raising our children.

00:00 - Start 01:53 - Who is Shane today? A 44yo mental health nurse. 02:47 - My Mum was young and damaged, suffered severe epilepsy and there were allegations of abuse by an older brother. My parents relationship was a violent one and my Mum had a temper. She would go from man to man looking for validation after my parents divorce. One of those men lost his temper and smothered my face with pillows. To this day I cant have anything on my face and am claustrophobic. 8:50 - Living with Nan and Pop offered structure, routines and family traditions. It was the happiest of times until Shanes Nan dies when he is 5yo. 11:52 - After Shanes Nan died his sister got pregnant and his Pop just didn't know how to care for him 13:20 - DHHS were involved as they realised Shane needed support. Instead of removal that could have been in home support. 14:52 - As a child you don't understand sexual abuse. You just like the attention. 15:53 - Shane's Grandfathers and Uncles feelings towards his Dad rubbed off on him. 17:10 - Shane's and his Dad never understood each other. A tale of two cultures. 18:40 - Shane's foster parents were supportive of contact with his Dad, but accepted in his teens that he had had enough 20:50 - Trying to help Shane make friends by joining sports or scouts made him feel more isolated. You need to do things that truly fit. 22:29 - Disconnection feels like an emptiness, not a sadness, a dead feeling inside. The mental health issues and attachment disorder amplify that. 29:34 - If you don't have friends, or you are bullied. you may be drawn to befriend the misfits 35:00 - Shane was afraid of rejection from the family, and ended up attempting suicide and resorted to bulimia before rejecting his foster family by ending the placement. He had to reject them so they couldn't reject him. Strange but true. 37:10 - Drugs offered the opportunity to run away from the inner turmoil and feelings and create a high 38:50 - The self loathing and not respecting or loving himself took 12 years of drug use before he moved on. 43:35 - Provide a safe, accepting, non-judgemental environment and educate yourself where you don't understand sexual or gender identity. Validate and learn. 46:20 - Don't let anything stop you in achieving things. Its drive that is important. 48:44 - Social workers need life experience and to learn from real lived experience

SHANE BAUTISTA: REPAIRING CHILDHOOD TRAUMA - TRANSCRIPT

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice evidence based learning that assist kinship, permanent and adoptive parents/carers in supporting young people.

PCA Families has a zero tolerance of child abuse and follows child safe standards.

I would like to acknowledge the traditional custodians of the land and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are speaking about foster care, kinship care, identity, being gay, abuse and more with Shane Bautista.

From the age of 2, Shane didn’t have the normal upbringing. His mother left and he lived in kinship care with his Nan and Pop until his Nan dies when he is 6yo.  He then lives a haphazard life with many moves, including a breakdown in his permanent foster care family, is subjected to sexual abuse and experiences unimaginable losses as people come and go in his life. He attempts suicide once and gets support the next time he feels suicidal. He struggles to fit in and feels broken and dead inside. Yet outside he appeared happy, confident and was able to achieve success in the creative arts (he joins Johnny Young Talent Team and stars alongside Colette Mann and works on Neighbours and other TV series). Eventually he finds his voice, comes out as gay in his 20s and finds success in education (supported by his foster family).

What can we learn from Shane about how we can offer safety, connection and peel back the layers to understand the child within?

Warning this story discusses care, sexual abuse, grief, mental health, suicide, addiction and more. Best suited to adult audiences. 

1:40 Welcome Shane and thankyou for joining us.

That was a long intro!

1:53 Thanks for joining us. Do you want to start off by telling us who you are today before we delve into that history?

I am 44yo and I work as a mental health nurse and alcohol and recovery. My main passion at the moment is my candle business (Impact Candles) via ecommerce and business to business also.

2:47 So you have experienced and done a lot in your life. Can you teel us a little bit about what you experienced in your Mum and Dads care before being cared for by extended family?

One of my sisters Julie who was adopted out and who I met at 18yo actually described Mum (from her adopted file) as when she was young as damaged: mentally, severe epilepsy, a bit of drugs and allegations of rape or abuse by an older brother. So it’s a bit of a family history there that could blow up if I stirred the pot

My Mum as far as I know had a temper and she would go from man to man for some type of validation. She met my father and he was Filipino and my Mum is English. The story goes that he was on a Filipino navy ship and he jumped ship so he could stay in Australia. What I can remember is that it was a pretty toxic relationship. At around 3yo I can remember Dad coming home and there was a fight and Mum throwing dishes at him. I would just hide under the bed. I’ve witnessed my Mum having an epileptic fit on the couch and in a toilet where we were locked in there for an hour or two. That was pretty heavy.

They divorced and separated and my Mum moved to her Mum (English grandparents) and my older sister Christine was in there as well. Mum had her when she was 15yo. It was a bit of a messy upbringing and my Mum was in and out of my life from then until about 5yo.

My Mum tried to take care of me and one of her boyfriends was living in a caravan park and I wanted my Humphrey B Bear light on and was having a bit of a temper about it. This angered this man and he tried to shut me up with pillows over my face. My Mum pulled him off and we took off and my Mums twin brother came and got us. He was a bit protective towards us. He would have wanted to flog this guy. To this day I can’t have anything on my face due to that time. I am claustrophobic also.  It used to come back in nightmares but not anymore.

When I was with my Auntie and Uncle I was having these nightmares but that has stopped now.

8:50 You ended up living with your Nan and Pop. They offered you safety, connection and love and encouraged you to be ambitious with skating and other creative pursuits. It sounds like you really thrived in that environment. Why was that?

With my Mum and my Uncle Stephen, they were twins and they were put through dancing lessons, tap and ballet and dancing. So that carried on with my older sister Christine going into figure ice skating as she was 10 years older. As a teenager she was pretty much skating full time. which she did very much full time before and after school. So when I got to 5yo my Nan put me in skating also. They dressed me up as the Easter Bunny once at the Easter show! Often Nan would put meals off or ask Steve to help pay some of the house bills so she could put us through these lessons. She really put us first before herself.

10:30 Did you thrive in that environment?

That was the happiest time in my life. The Sunday roasts and whoever from the family wanted to come on Sunday. I remember her with her baking and her cupcakes on Sundays. So she really took care of us and that was the most stable time for me for a few years. I was 5yo when she died and I was by her bedside and witnessed her gasping for breath as she had liver cancer. I still unfortunately have that last memory of my Nan but I try and remember the good things.

11:52 Your Pop found it hard to care for and be available to you after she died is that right?

Yes he didn’t know how to do anything. Wives did everything back then. He would forget to feed me. Often I would go to school in prep or grade 1 without underpants on. Nan had done all that stuff making sure I was dressed properly. I just was really left to my own devices.

My sister Christine had at the time moved out and she was across the road at her boyfriends place and she got pregnant at 17yo. I guess as he was getting older and didn’t know how to care for a young child.

13:20 Do you look back and think something different should have been done at that time?

Yes DHHS were involved in that way at the end of that because my Auntie and Uncle took me on and I lived with my cousins. No support for my Pop. Maybe some additional support for my Pop would have helped but maybe he was getting to old to care for a young person. I was 5yo running the streets, hanging out with teenagers and living beyond my years. After my Nan died sexual assaults were happening. There was a boy next door that would play with me and his older sister would babysit me at times. If I went over to their house or he came to mine he would do things to me. My sisters boyfriend his younger brother was doing the same thing too.

14:52 Is that something you are aware of at the time that it is happening to you and you should speak up?

As a child you don’t know that it’s wrong and you like the attention.  I was lonely and the friends I hung out with were older so I guess you don’t think at that age you just things its a game or something. As you get older it affects your behaviour and the way you do things in your adult life.

15:53 You ended up having more contact with your Dad Roy before a foster family was found for you?

Funny story my Grandfather and my Uncle hated my Dad so I guess that rubbed off onto me. I was told this story about when I climbed the house with a box of rotten tomatoes and when my Dad came I would throw them at him.  I idolised my Grandparents and my Pop was like my best friend so I guess he rubbed off on me as a young impressionable boy.

17:10 Can you differentiate that now in terms of your real feelings and how you were impacted by other people?

My Dad and I never got along or understood each other. I was brought up in Australian Culture. He was Filipino culture. He would say you are too Aussie. And he didn’t know how to be a father. He was never around so we never got that father son bond. It was not much of a relationship at all. Even when I was in foster care and he would have access, he wouldn’t spend one on one time with me, he would take me to friends parties, or take ladies shopping. It was never one on one father and son time. After a while I just said I don’t want to go there anymore.

18:40 You were living with Joan and Bryan, your foster family, at that time around 7yo. Could you talk to them about it? As a biological family member you would be encouraged to spend time there but he didn’t have the skills?

They were quite supportive and would always encourage me to give him a chance. There was a time when I was 8 or 9 and there was some reason why he couldn’t drive me home so I caught the bus by myself in Dandenong and got off in Hallam Road, at the paddocks where the bus stop was on the other side of the freeway. It was nighttime and I got off and walked across those paddocks to back home. When I opened the door Joan was in shock and wanted to know how I got home. I said I caught the bus and she was fuming at that.

From my childhood from 5 I guess I was the most streetwise kid so I could have easily caught the bus at 5. They always tried to encourage contact but they also supported my decision in my early teens when I said Id had enough.

20:50 You lived with Joan and Bryan, your foster family, and they enrolled you in sports but at times that made you feel more disconnected as your interests differed?

It was more scouts. Joan was trying to make me find friendships. So she enrolled me in Scouts. At times it was fun but I didn’t really fit in with the boys because I was obviously gay and didn’t want to do the boy boy stuff. They did support me in the creative arts and driving me to rehearsals at school and things like that and coming to the shows. But they never had an experience of a young child that liked girly things in those days.

22:29 You are obviously feeling disconnected. What does that feel like and do you feel it daily?

With my mental health issues, depression and anxiety, and attachment disorder, that probably still carries forward in my life in attaching to people. I have a small group of friends but I have a lot of acquaintances. At times I do feel a disconnect to the world and an emptiness. I don’t feel sad but sort of dead inside.  The weekend just gone I went away with my best friend Danny who I live with and a couple of girlfriends and that was such a recharge and I came back recharged and remotivated. But a couple of weeks ago I was feeling demotivated and there was nothing inside. So Im going to find a new psychiatrist and get a proper diagnosis. I think there is a bit of ADD (attention deficit disorder) as well. So I’m going to get a proper diagnoses. Back in my day there was no help it wasn’t spoken about.

Did Joan and Bryan want that for you?

Maybe they weren’t educated on mental health and the social workers I had seemed to be younger straight out of college with no experience.  On one hand you are not being offered help and on the other you have all that shame and you are burying it down. Joan would talk to me and try and encourage me to talk about my feelings, but because Im a people pleaser, I would want to share my feelings but the anxiety would take over and I couldn’t share my feelings. That must have been frustrating for Joan because I just couldn’t share due to the anxiety and it being undiagnosed. I guess if the social workers were trained more in mental health and adolescent mental health that would have gone a long way.  If someone had said we understand you are going to have these feelings. 

As an adolescent if you get asked to go see someone you would just say no I’m fine. I think you need to be forced! Even if it was just you know go and see a psychiatrist or psychologist and just give it a go. They may be able to help you. These days there is a lot of support and resources which wasn’t available in the 70s and 80s.

Even the book you have written about your life is helpful for others to see those feelings are normal. That was an incentive for me to express everything, which was quite healing. I wanted to help adolescents in care or not to go through their sexual orientation or identity, to see that there are other people out there experiencing what they may be experiencing and that they are not alone.

29:34 You talk about being bullied for being gay and then being tortured by your friendship group and then you hang out with the misfits because they became your friends.

In Year 9 in any teenagers life it is the hardest year because you are out of puberty, a little bit mature but also easily led by other kids, either the bully or the victim. The first half of Year 9 I was failing everything except drama.  I had the worst attitude at 14 going on 15. Everything I had pushed down started to surface. I was being bullied because I wasn’t good at sport or people called me a poof. I would hang out with the smokers that were older because I wasn’t getting along with my peers. I was getting attention that wasn’t the best.

It sounds like you were doing everything you could to keep hidden.

The funny thing was I went to Hampton Park Primary and Secondary. In the 70s and 80s it was quite an affluent suburb, very white, middle class, upper class. That school sucked. It wasn’t until I blew up my life with my foster family in Year 10 and moved to my cousin Tanias high school in Doveton, a rougher school, the second half of year 10 and Years 11 and 12, they were the best years of my life. For me middle, upper class kids could be awful and entitled. Anything else would be a chance to frown upon and be bullied. Found less judgement in that environment and safer to be myself, but still not coming out as gay. I didn’t come out until I was 23 with my foster family.

35:00 You were prepared to lose your foster family at that time to keep everything hidden and not affect them?

I was afraid of rejection from the family. When I tried to kill myself that didn’t work. I guess I was in the defensive and rejecting them before they could reject me which is just stupid. They kind of knew that I was gay but no one spoke up about it. I wish they had spoken up and forced the conversation. Joan and Bryan didn’t understand it due to age and culture. When they grew up there wasn’t much of that around so they weren’t equipped to deal with that fight against the sexual tension, the confusion and self loathing and I was self punishing with bulimia. In this day and age I would have been sent to hospital.

37:10 You ended up exploring with ecstasy and a whole lot of other drugs when you were 23 and came out?

The first guy I ended up with at 23yo was a drug dealer. Then I was obsessed with Italians and Greeks and “wog” boys. I had my first fill of ecstasy and it just started from there. You take one pill then you are taking two then you are trying speed, cocaine, amphetamine, GBH, Ketamine and because I have an addictive personality I would chase that high. It would be Thursday to Sunday chasing that high and then Monday I am supposed to try and work. Very wasted.

38:50 You talk about wanting to get away from that shame and find identity. What’s the turning point for that?

From 23 when I came out to about 35 I was a drug user. I was just running from myself and all the turmoil and feelings. Drugs did that for me. When you are out and take drugs with your friends and you meet more friends because everyone is on the “love” drug it’s a really good time. So I would be picking up a guy at the pub, going off and making out at the toilets. I started to get a name for myself as easy. It wasn’t until my 30s that I started to slow down. When I was 24 as a dancer I moved up to Sydney. That didn’t work out and I was working for Virgin records as a casual and then a manager. I wasn’t getting paid enough and when my dancing finished my housemate suggested I try escort work as I was already giving it away for free. So I did. For 6 months I was a male escort. What I realised is you don’t get to select your customers. Lots of older men, married men, straight men. Hardly ever gay men. Mainly closeted men.

One of the guys was smoking ice at the time and offered it to me so there we go again I was addicted to ice for 6 months. It really takes a hold of you that drug as it makes you feel invincible.  I guess the older, uglier men didn’t matter as I was drugged up and it was all about making money. On a weekend I could make $3,000. The self loathing part of me and not respecting and loving myself allowed me to do that.

43:35 As parents and carers we have an opportunity to learn from you as despite having people around you you didn’t aske for help. I don’t mean that negatively as how can you in that situation. So what do we do when there are kids feeling like they don’t belong or depressed. What do we do that could be different?

Provide a safe space to not feel judged and to be spared of rejection. We have a lot of kids identifying as non binary and using the pronouns correctly. So if they say I look at myself as non binary and I would like to be called they/them, try and embrace that as a carer even if you don’t understand it, educate yourself. There is a lot of support for children’s sexual identity so just try to understand where it is coming from and don’t call it a phase like I got. Provide a safe space without judgement. Fear of judgement is the biggest catalyst for teenagers behaviour and whether they shut down or open up. Even if you don’t understand it.

46:20 You really have made a difference in other people’s lives as a nurse and drug and alcohol counsellor. So what has given you that inner drive and how do we get others to tap into that?

One thing Joan would always drum into me as a teenager was that you can always achieve what you want to as long as you have the drive. Don’t let anything stop you achieving things. So having the confidence to allow myself to do that. I also didn’t want to be like my parents. There is something in me that wants to achieve things and life is short so make the most of it. I do still suffer from mental health but I have a lot of good family support now. Sometimes I wish I didn’t do 3 degrees and bought a house instead! That innate drive to want to be better.

48:44 Is there anything else to discuss today?

Something else to discuss is social workers coming out with degrees is to try and gain some more life experience and educate yourself in what kids go through today. Don’t just look at things from a text book. Get out there and look at life. Volunteer at different support groups and see how people live and the conversations they have. See it face to face. I guess they have placement and things like that which is good. I guess just educate yourself and live the life of other peoples shoes to gain that understanding.

To anyone making the time to listen to this recording, thankyou for giving up your valuable time for the benefit of the young people in your life.  Until next time have an amazing week

OTHER RESOURCES

Resilience by Shane Bautista – available here

Impact Candles – Shane’s business – see here

 

Choosing a Trauma Informed School with Chrissie Davies - Youtube Recording

Chrissie Davies has over 20 years experience working with children and families, as a teacher in the school classroom working with extreme behaviours, and as a mother of two young children, one through adoption and one through permanent care. Chrissie has had experience with navigating the school system due to trauma behaviours showing up unexpectedly. The beautiful child led systems in kinder and pre school were different to the teacher led expectations in school, and suddenly trauma behaviours showed up. Chrissie spent a year trying to work with the school on these trauma behaviours until she eventually decided to move everything to a location that would suit the families needs for the long term. That included finding a trauma sensitive school where teachers are Berry Street trained and behaviour is managed in a trauma sensitive way, embracing concepts like time in, calm spaces and sensory items. What happened? It was a great success. From daily worries about behaviours to not one phone call all term to report on unwanted behaviour in the classroom. Wow what a transformation. What changed? Not her son? The environment changed. So getting it right is invaluable. And what does her son think? He says the teachers at the new school support him. That's how every child should feel. Find out more about how to navigate schools and how to advocate for your child from Chrissie. She has some great tips.00:00 - Start 01:12 - Some schools will be lost in knowing how to understand, approach and work alongside kids with trauma behaviour. 03:30 - The right school that supports your child is critical. You school needs to explain how they would deal with tricky behaviours. 06:20 - Be upfront about your child's background as often children will fly under the radar until Grade 3 or 4 when there is a leap in expectations. Alternatively they may start to unravel as they move from kinder and preschool which is child led, to teacher led instruction. 09:25 - Find out if the school is trauma informed or willing to be trained by Berry Street to be trauma informed. Ask what happens if the wheels fall off because research tells us that trauma kids can unravel at any point. 12:46 - Arrange a non standard school tour so you can assess the day to day reality. Look at how the schools values permeate through the school and look at the behaviour management policy and how teachers relate to each other. Do they look happy to be there? 18:49 - Approach teachers as an ally: you have so much information about your child and trauma, so suggest to the teacher you would like to share what works and continue building a positive relationship with the teacher, yourself and your child. 21:27 - Advocate strongly: trauma is a disability and you are entitled to realistic modifications in the classroom. Focus on your child's strengths and interests in IPL or other meetings with school leaders. Remember the right approach from the teacher interacting with your child can make the difference: their tone, look or even a rejection can set off a child. Advocate for flexible seating and noise cancelling headphones and a calm space or sensory tools to help with children's nervous systems. 27:25 - School selection begins at 2 to 3 years old so that you can offer your child stability for the long term. If you are fighting to get what your child needs, or needing to involve the education department to get what you need, maybe its time to give up on that school. 30:26 - Make a long term lifestyle plan when selecting your school and be confident in your decision and work out how to sell a change of school to your children 38:39 - Schools don't work for all but they offer communities so don't give up on them

Choosing a Trauma Informed School with Chrissie Davies - Transcript

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice research-based learning that assist kinship, permanent and adoptive parents/carers in supporting young people. PCA Families has a zero tolerance of child abuse. I would like to acknowledge the traditional custodians of the land on which we meet and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are discussing choosing a trauma informed school with Chrissie Davies from Chaos to Calm.

Chrissie has over 20 years experience working with children and families, as a teacher in the school classroom working with extreme behaviours, and as a mother of two young children. Chrissie has a wealth of knowledge to share.

Welcome Chrissie.

01:12 Chrissie with your experience in schools and lived experience, you would understand the importance of choosing the right school for our children from an adopted, permanent care or kinship care family? Can you share with us a bit about your experience?

Boy do I ever. And Im so excited to do this topic because I feel like it is going to help so many families that come along after us. 

For those of you who don’t know about my work, I sit in this niche position as an educator for 15 years and now run my own consulting business and raising two neurodivergent children through adoption and permanent care.

Navigating the school system very sadly I found out first hand, particularly last year with my little guy starting school reminded me how far we have to go in school settings understanding developmental trauma and what that looks like in a busy classroom.

We plodded along ok with my daughter and she didn’t really have any behavioural challenges per se. As we know the kids that are the loudest get the most support.  She masked lots of her trauma behaviour which is a very real challenge that many families need to be aware of.  But boy did my little guy let the whole universe know how hard it was for him.  I am not exaggerating when I say, this particular school where we are at, and its not about shaming the school it’s about creating awareness, in our experience they were completely lost about how to understand, how to approach and how to work alongside us.  Unfortunately that educational setting did not work out for us and our family.

3:30 Why is finding the right school SO important for our kids?

School communities become a very important part of our family village. We cant survive without them. If you choose to send your child to a formal educational setting, the school leaders and in particular the school principal, the people who deal with the “tricky behaviours”. If you don’t get that right you live what we lived through of an incredibly challenging year. Are they ever going to get it? There is value in investing time to get it right. The happy ending is that it is very often not our kids but it is the environment.   My little behaviour kid who was getting sent home every second day is now thriving and we have not had one phone call all term. It has been transformational. I can tell you right now not much has changed about him. He is still his gorgeous rambunctious little self. But the approach the understanding the language the environment the support is a complete contrast. I said to the kids this morning I’m doing an interview today and my little guy, who is 6 and a half, said the teachers at this school never yell at me. They really care about kids and they support us better. unit.

06:20 Is it important to be upfront and honest about our child’s trauma background?

For sure. We were probably blindsided a little bit because our child had done really in the same child care setting and at stand alone kinder. But those settings are very child led. They follow their strengths and interests.  Once children hit more formal education it is really different and it is sadly not so much about the child anymore and it is very teacher focussed and teacher led. I think we are getting better at it but there is not a lot of room for individualisation. So when you have kids that don’t fit the mold, clearly my kids saying “Why do I have to sit on the mat. I want to move Mum”. I was like I know. There is a real shift from child to led to teacher led in education and this is where the wheels can really fall off in education. So being really honest and transparent with school leaders is really important because we might think our kids are doing ok in kinder. But the truth is that as our children’s brains grow and develop things more and more of those trauma behaviours or neurodivergence or others can start coming out at any point along that journey.

What we see generally in education is that kids can coast or fly under the radar until about Grade 3 when there is a huge leap in expectations and capability in what children are supposed to do. That is when we can see the gap widen if there are challenges or neurodivergence that goes hand in hand with our kids. So what becomes apparent in Grade 3 or 4 is that it becomes really apparent that the child is struggling or having some challenges. So that is important to keep in mind as well. Like I said you will get a really good indication from school leaders just by having that conversation about whether they are really invested. Schools are really good at saying the right things and their websites say the right thing but it’s not really until you are in the trenches or in the throws of suspensions and meltdowns at school that your really see how the school rise to the occasion or are a little bit overwhelmed in knowing what to do.

09:25 So how do you know as a parent if the school is using trauma informed practices?

You ask. And at a very bare minimum, the leadership are trained. The really great model in Australia is run by Berry Street in Trauma Informed Training run by Berry Street. This is the challenge we had. They just wouldn’t commit to any trauma informed training, or at least send my sons teacher. That’s what I mean about being invested – at least willing and open to learning. That is a question you could ask, what happens when the wheels fall off because research tells us that trauma kids can unravel at any point. They can be triggered by certain emotions or smells or memories. Have you dealt with these kinds of children before? There is a misconception that trauma doesn’t come from families like ours. There is a lack of understanding of the early brain development. We were told very early we wouldn’t get any help with education because our son comes from a good family. It has nothing to do with us as the adoptive parents. Its everything in utero. So get an understanding that if the wheels did fall off what are they willing to do. 

I want to also clarify that teachers are only as good as their leaders. There were many instances that teachers have been willing and wanting to do training but they are knocked back by leadership. Its important to remember teachers are the ones on the front line. They are the ones dealing with the challenging behaviour and disruptions in the classroom. Nine times out of ten teachers are amazing. Often teachers can’t do enough for you. But at some point their hands are tied in terms of access to training.

12:46 What are some of the questions or things we should look for when doing school tours?

I really want to iterate this, especially if you are doing a staged school tour. That school will sparkling like the Chrysler building in Annie. That school will spend weeks preparing, putting up displays and cleaning.  So you need to go into it with the knowledge it has been staged. So if you can get on a non staged tour you will get more of an indication about what is actually happening in the school. Lots of schools will do that if you call up and explain how you want to get the setting right and explain the situation. Most principals will be open to that.

One of the really important things for our kids is focussing on the school’s positive behaviour program that they use. Most schools will have a set of values that they follow. The model is meant to be ingrained and embedded throughout the entire school community. Teachers should be using that language. Awards given out at assembly should be linked to the school values. Many schools aren’t doing this. I nearly died when my daughter got an award for putting her hand up in Grade 2. I was pretty sure she had mastered that!

The biggest challenge we have with our kids is that there are a lot of schools that are empathetic and patient and understanding. But that doesn’t move our kids forward. Do you get what I mean? Because our kids need that little bit extra. Are they running social skills clubs. Are they running inside clubs for children having trouble on the playground. How are they communicating when kids are in trouble? What happens to them. Are they sent to outside the principals office on a cold concrete floor. Are they swept up into a beautiful Grade 3 class and nurtured and  involved with those older kids. There are so many ways in which schools view behaviour. Many still view it as discipline and conformity.

The Behaviour Management Policy should be on the website. You can get access to that as parents. But it’s usually a beautiful well written document.

The other thing I say is look at the teachers. Do they look happy? Do they look like they want to be there? The school we are at now, any interaction you have with any teacher at that school is so positive. You can just tell that they love working there. Teaching is a really hard job and at times a thankless job. If you see teachers and their relationships with each other and how they communicate with leadership at family events, that’s an insight into what is going on. If teachers are happy in their job you will know it.

Should you take the child with you on the school tour? I would say no. At the end of the day a 7 year old doesn’t really know what is best for them. Not every school environment is right for every child. Traditionally we went to our local school but now we are overwhelmed with choice, yet we are limited sometimes in terms of zoning. The reality is not every environment works for every child. I’m all about giving kids choices but I don’t think this is one they should make. Once the decision is made sure take them on a tour. That is then us being really confident in understanding and knowing, that as adults we understand trauma and adult relationships and we know what is best for you.

This is my daughters third school would you believe, where they had a beautiful cinema room. I can imagine kids  doing the tour going yes I want to go to that school because they have a movie room. Children are all about the sparkles, rainbows and unicorns. They don’t have the depth of understanding. They see it they want it.

18:49 How can we confidently advocate for our children’s needs in their classroom?

One of the biggest challenges we had was it became more about don’t tell us a how to do our job. We are experts when it comes to our kids. We know so much about trauma and we are always googling, learning from each other and watching podcasts like this so we have so much up to date information. Teachers are doing the same. But they aren’t experts in trauma. That is an important relationship where we need to come alongside teachers. And there is a huge disconnect in schools understanding that we are your ally. We have so much knowledge about this kid we can help you if you let us share what works. It also comes with an understanding that our child is not the only child in the classroom. So be mindful of hello here I am again. So once again doesn’t that come back to building relationships with people and having that relationship with teachers where teachers can share the good days as well as the tricky days. We get so much negativity and teachers are quick to tell us about the tricky day. I work with teachers around this – use the sandwich: come in with a positive, then come in with the negative and knock the parents out with a positive. This is so important. We know our kids have got challenges. Trust us we deal with it daily. First and foremost the relationship with the teacher is incredibly important.

21:27 How can we confidently advocate for our children’s needs across the school and families too?

I have been doing a lot of work around advocacy with families who want to feel more prepared when going in for ILP (individual learning plan) meetings and meetings with the leadership team. Understanding the language and using the right terminology around modifications. What is a realistic modification that you are within your rights to advocate for? You are not being annoying. Your child has a disability and they are entitled to realistic modifications in the classroom.

I’m just let it all out. We have so much radical acceptance and the more open and honest you are, and you don’t have to tell the whole life story. For example when we moved recently I said casually to one of our neighbours both of our kids have got ADHD and sometimes they struggle with emotional regulation so you may hear them from time to time. Sorry! Being open and honest with people is incredibly important because people still don’t understand what is going on. And isn’t that a good message for our kids. There is no shame in who you are. ADHD is just one part of who we are, just like you have blue eyes and blonde hair and like playing with sticks.  The more we do that the more they will do that.  My daughter actually came home from school telling her class that she was adopted. I was like great, that is radical acceptance. The more we can teach our children how to do that the more they will do that as well.

Most ILP meetings should focus on the strengths of the student. The things they do really well and things that they are interested in. That keeps our kids motivated. The second most important thing is language and approach. We know our children are very often functioning in a dysregulated state, most of the day, so even a teacher look or tone or rejection can set them off into meltdown. That can all be avoided with the right approach from the teacher interacting with the student. If they don’t understand rejection sensitive dysphoria, as a components of ADHD, or if they don’t understand hypervigilance or transitions. We talked about with our son even just someone new moving through the room. Even just the assistant principal turning up in the room makes his brain go danger, danger, high voltage. Its not always possible to avoid. But then understanding that if that child does have a meltdown or is triggered you know why.

The other thing that I would love to see is flexible seating options. It should just be a standard in any classroom. Gone are the days of whole body listening, throw all that garbage out the window please. Have any seating available for children, have noise cancelling headphones available in every classroom for all kids.  That sort of stuff can be implemented so easily in every classroom. Even just a calm space where kids can go to take a break so that they don’t reach meltdown point. There are so many simple things that can be implemented. We can advocate for our kids. Sensory tools. So many of our kids nervous systems are compromised. Those sorts of things should just be a standard in every classroom.

27:25 What happens if we get it wrong? How long should we hang in there hoping for change and the right support?

It’s a tricky one. Not everyone like us has the capacity to just pack up and move for a better school option. I know so many families that have moved or have left their house empty or are paying more rent or more to get into a school, which is so wrong on so many levels. But as families we really need to be thinking about this a lot earlier, when our kids are 2 or 3. Sending them to the local school may not be the best option.

In terms of hanging in there, we gave it a year and in the end we just felt like we weren’t moving the needle at all in terms of their willingness and understanding. At that point we had no choice but to move on. But where do you go? We looked around in our area and spoke to lots of schools that were very open and very understanding and willing to take us. But as a family we need stability. We deal with so much in our life in general above and beyond neurotypical families that having stability is important. We are safe and stable for the next 5 years. That weight is lifted off our shoulders in knowing that no matter what happens, even if the wheels fall of, we are in a great supportive environment that will support our family for a long time. That stability is so important to our family after having lived through all the ups and downs. So I think everybody has a different threshold. I like to think I’m pretty strong. So give it time but if you feel like you are just banging your head against the brick wall and you are at the point that you have had to get the education department involved like we did, you know that’s pretty bad.  You really shouldn’t have to advocate or fight that hard for your child to be understood.

30:26 What sort of things are important to consider if you need to transition to another school?  Are there things that helped your child with this?

Like I said for sure, with absolute resolution, knowing that the next move is the right move. We could have moved to any old school but there was a chance that it could happen again. So look at the big picture. Look bigger than that. Think about is it worth hanging in. Are you getting enough from the school that you think you can hang in another 4 or 5 or 6 years. That’s a long time. It’s a big part of your life that you go to every day. It is a really big part of our life, even more so for our kids. Because of their start in life and the losses our kids have already experienced, their disruption to identity and understanding who they are, I feel like getting the sense of community and belonging right for our kids is so important. I’m getting goosebumps saying that. Even though it might feel like our kids don’t want to go or don’t want to be there, they actually probably do. Its just everything else that is unravelling them. People used to say to me why doesn’t he want to go to school I would say he does want to go to school he loves being there. He would come home saying I had a great day today Mum and then I would get the call from school.

Coming back to what I said before about being confident in your decision. My daughter sobbed and sobbed I don’t want to move. She was on the transition of where her friends become more important. But I knew she would love it. But she couldn’t see the big picture.

But once we made the decision we were very strategic in how we conveyed the news to our children. Because my son has high anxiety we didn’t tell him until the end of school. We didn’t want him going to school saying we are leaving, this school is rubbish. We sat my daughter down first and said because you are older we wanted to tell you first. Her and I made a day of it and drove to the new house and picked up the keys and she is living the dream being near the beach. We knew it would be much more difficult for my son to transition. Also having really clear understanding that that yes stuff is going to get real for a few months. It’s been a hectic 4 months and we are coming out the other side now. School is amazing. It’s just the transitions. New house, new room, new school, new way of getting to school, new friends, new people. All those things that we know are really hard for our kids. But really drawing them into “it’s not just about you or her”, it’s about a lifestyle change. You don’t have to move to the coast to get that. But moving schools can be the life change for you as a family. When you sell it like that it’s about the betterment for everybody and the entire family will be happier if we don’t have this hanging over our head. Or if we are around people who get us and love us and accept us for who we are even on the hard days.

For myself personally I felt so let down by the education system. I had spent my entire career working in education and supporting other people’s children and then when it came time for my own child it failed and I was let down dismally. My heart broke for my son and for the system and for how hard it is for our kids and for all neurodivergent kids in this current system.

I just want to end of by saying really excitingly in education in Victoria there is a Statewide reform around trauma informed practices (the Statewide Trauma review – more here). It’s probably been pushed off the back of Covid because we are calling the Covid experience a traumatic experience. But what that means is excitingly that there is something like billions of dollars going towards this. That means that at a leadership level in every school there will be people working on and understanding trauma. That was one of the reasons why we moved because we are now in the region where it is all rolled out. The area that we were in in Melbourne will take another 3 years. Even if we can get schools to do the Berry Street training, it can take years for them to get their head around the philosophy and get up to speed and to embed this. We don’t have time. We have poured our whole life into these kids. We don’t have time to wait. It’s an exciting time in education. And something I have been talking about and advocating about for so long. The research shows and I am living proof of this, that all children respond to therapeutic approaches. It’s a no brainer. So what that means is that all of our kids hopefully are going to be understood and have teachers and educational leaders that really do have a good grip on trauma. That can be life changing for the families coming through.

38:39 Last thoughts?

As a passionate educator, a lot of people kept saying to me and I thought at some point that  I might end up home schooling my child. But my heart isn’t in it. I still believe in education and what school communities bring to our children. And don’t get me wrong I understand it doesn’t work for all kids. But I feel like that if we can get it right for our kids they can go on to thrive. They can be a part of school communities and also be around other children that understand them. That’s also why I like my kids to be empowered to understand who they are. So don’t give up completely on education. My heart took a little while to heal after what we experienced. I don’t want any other families to go through what we went through. Everyone said to me if anyone can change the system its you. I gave it a really good crack and we definitely did get some change in there but I wasn’t prepared to hand our kid over long term. So trust your gut parents.

Thankyou. To anyone making the time to listen to this recording, thankyou for giving up your valuable time for the benefit of the young people in your life. Until next time have an amazing week.

OTHER RESOURCES

Chrissie Davies – Chaos to Calm Consultancy

Matrescence with Melissa Christian 

Melissa Christian was an early childhood educator who became an intercountry adoptive parent of 3. Her journey to motherhood was long, 15 years in total, and there was time for lots of learning from Therapeutic Parenting to Circle of Security. However, something wasn't quite right post adoption. A type of post adoption depression called matrescence. While she now had the perfect family, internally something was not quite right. Melissa explains her experience, the feelings and why it is so important to be able to talk about it. Motherhood involves a change in economics, emotions, biology, physicality, culture, social and spiritual life. Ones self identity is forever changed. Add to that layers of perfectionism expected of adoptive parents and its a formula for disaster. Melissa encourages all parents, particularly adoptive, to seek help when you need it and talk openly about the adjustments and challenges to get the help you need. 00:00 - Start 00:50 - Melissa's journey to motherhood: 8 years fertility and 7 years before adoption 10:20 - What do adoptive mothers feel? Do all mothers feel the same? 13:57 - What is matrescence? 15:40 - So what did you do from there? What sort of things helped you? 18:23 - How do we help permanent carers, kinship carers and foster carers, who have similar experiences? 21:31 - You found post adoption services and other things that worked for you. What were they? 22:50 - What are some things that other expectant mothers (on paper), should plan for or expect that perhaps you didn’t? 24:13 - Were there some areas that you think we can better support pre or post adoption?

Matrescence with Melissa Christian – Transcript

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice evidence based learning that assist kinship, permanent and adoptive parents/carers in supporting young people.

PCA Families has a zero tolerance of child abuse and follows child safe standards.

I would like to acknowledge the traditional custodians of the land and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are speaking about Intercountry adoption and Matrescence with Melissa Christian. Melissa was an early childhood educator before becoming an intercountry adoptive parent of 3. Her journey to motherhood held a few surprises, one of which was a type of post adoption depression where expectations of a joyful motherhood and immediate connection were not the reality. Welcome Melissa.

00:50 Can you tell us a little more about your journey and the experience of becoming a mother?

Thankyou for this opportunity to share with you.

I am an adoptive mother of 3 and we adopted our first child after a 7 years wait in the adoption process itself.

We planned  to adopt from China but a lot of things happened and we ended up with a letter stating we had a 22 year wait. We didn’t want to be in our late 50s adopting.

So then we discovered the special needs China program where they allocated children to the world and chose children for families. Ass we started that journey we had to look at different special needs that we were willing to accept.  One of them was a condition with the heart.

We waited in this program and nothing seemed to be happening. China decided to upgrade their system and it was a month and another month and we were waiting to adopt for the past 7 years and prior to that in fertility prior to that for 8 years.

Then finally we had a phone call from our social worker about a little boy in Taiwan that had a heart condition. Thankfully we got accepted.

We had to madly get our paperwork together. It was about a 9 month “pregnancy” to apply to adopt and be accepted. That was all going smoothly and we got a phone call one day asking us to be in Taiwan by the weekend to attend court.

So we did this not having any idea about it. You do anything as you know this is your chance.

We met our beautiful son and spent 4-5 days with him and attended the court process and then we had to come home as the Australian Government doesn’t line up with the Taiwanese Government in being able to stay there and wait for the process of immigration to finish.

So we came home and with all of the waiting that was the hardest waiting that I have every done in my life. It was a very painful experience flying out of Taiwan and knowing that a piece of your heaert is being left behind.

It was really traumatising.

The 8 weeks was good in that we now knew our son, what clothing he needed and what his interests were. So we could prepare for him coming home. We knew it was roughly an 8 week wait and it was 8 weeks to the day. But during those 8 weeks I built up a little wall around myself to protect my heart. You are feeling very fragile and you are about to become a mother so a whole new world is opening up to you. So of course you protect yourself because you have had hurt and you protect yourself as much as you can with the slow adoption process.

This little wall I built up just made it a little bit harder to form attachment and bonding. I struggled before I met the birth family. I had all the care needs for my son down pat. The caring there was no issue with that I was all over a routine. But feeling like a Mum. How does all that feel. Am I meant to change overnight? I really struggled with that.

We met the birth family on the Friday and it was a hard morning for me to get myself there and and I just wanted to delay it as much as possible. Everything was signed off but there was that what if.

So I met the birth mother and she reached out to take our son to hold him and of course part of you goes oh that’s our child. He rejected her. That did not sit with me either. He had just rejected her in favour of us. It was an unsettling feeling. I felt really uncomfortable. This was her goodbye. I set up some toys on the floor and left for her to have some time together saying goodbye. I felt much more at ease after that. I feel so much better, he has claimed me as his mother and we can go forward now.

But I still struggled with this feeling of not feeling it. As time went by you sort of put yourself on this wheel of perfection. We are doing this and that and everything was all about the child.  You support the child because you are so in love with this child that you never had. But you are not realising how depleted you are becoming yourself.

I believe I got to a point that I wasn’t coping as a Mum. I remember thinking what a thankless task this is being a Mum. I had to ring my Mum up and thank her for everything she had done for me. It was an awakening of the woman that I was and now I am just nobody. I am giving to everybody and I have nothing for myself.

So it was a really hard time and we struggled a lot with that.

So we kept on going and we applied to adopt a second time. You get yourself to a place where you are ok, or you pretend to be ok, but you aren’t really meeting that inner need that unsettled feeling of there is something not right on the inside.

We applied to adopt and were allocated 2 girls and it felt so right and the process was really quick this time. From allocation we were in Taiwan less than 3 months later to attend court. It was incredible meeting these two little girls.  One was two years and 4 months and the other was nearly 12 months old. Now here we are a family of 3, more than we every dreamt of really. You pinch yourself going is this real. It was incredible.

We attended court again and came home. We had three weeks at home. Then we were asked to go back and pickup the girls. We were able to have time in Taiwan and share more of the culture with our son which was really good for him. Then we brought our girls home.

10:20 What do adoptive mothers feel? Do all mothers feel the same?

Just prior to bringing our girls home, our social worker put us in contact with a support worker from Relationships Australia. I had a great conversation with her but not one part of it did she recognise or understand what it was like to be an adoptive mothers. She understood child trauma, she understood additional needs and she understood all the psychiatric support needed for adoption. But she didn’t understand me and I was left with this empty feeling of but where is our support.

I started doing some research and got in touch with different support agencies, but we were living very remote and there was nothing available to us. So it did leave me feeling a little bit empty but of course we rushed into the next adoption. Of course my son struggled with having an additional 2 in the family. That was tough for him and we had some things going on in the family and we moved interstate.

The adoption was going smoothly. I did Therapeutic Parenting courses and Circle of Security courses. By chance I picked up a parenting wellbeing magazine and read this article about Matrescence. Oh my goodness. This was me. This was my lightbulb moment of realising everything I have been feeling as a mother. My economic lack. My emotions. So many parts of me all just came together in that moment. I got in touch with Amy Taylor-Kabbaz who does Mama Rising with the matrescence formula. I did do a podcast with her. Wow this is what we feel as adoptive parents, just like other parents do.  Just having that acceptance and recognition that this is what all mothers go through.  We are not taking away from the children at all. But all mothers feel the same things inside whether it’s all of the aspects of matrescence or one or two or whether it’s at the beginning of your experience or down the track some months later. In your spiritual being everything changes.

13:57 What is matrescence?

The physical change that mostly biological mothers will go through. But I was going through that too. Because my whole focus was on my child I stopped eating. So my physical did change in that aspect.  Maybe others would go the other way. Your hormones change With my second adoption I really felt that maternal pull. My emotions kicked into gear. Your emotional status, your world has turned upside down and your emotions are crazy. You suddenly have this beautiful child. Your social aspect. Suddenly your friends have disappeared. There is no one to talk to, nooone understands. Your cultural. Suddenly you are their mother in this world. Your economic so you don’t have the income or independence any more. Everything is gone. And of course the spiritual. Your life revolves around this child and you are giving it everything. Your self inner identity changes. So its bringing all those things to the forefront.

15:40 So what did you do from there? What sort of things helped you?

Amy Taylor-Kabbaz had a short workshop through Mama Rising so I knew I needed healing and needed to put the guilt and shame away. The feeling of less than as a mother. So I started working on myself first. I then realised after talking to other adoptive mums, who had been friends right from the first adoption, that they felt these things to. So I started to launch out and joined a group for foster and adoptive mothers and started sharing. And I heard back that others felt this too. There are lots of different adoption groups. Just reach out and make this a conversation that you can talk about in an open way.

So its like self care and self identity that you are making sense of. Whether you are biological or otherwise.  Where is that space for you so that you can give to everyone else in your environment, combined with the extra layer of perfectionism as the chosen adoptive parent.

Society puts us up there. You must be an amazing person because you are an adoptive parent. No I’m just a mother. This is how my family has come to me. But don’t make me feel that I am better than anyone else. I am just a mother struggling like everyone else is. Whether they came by adoption or kinship care or biologically.

18:23 How do we help permanent carers, kinship carers and foster carers, who have similar experiences?

Have an open conversation. It is ok not to be ok. We have to take that pressure off. In the adopted world especially you can’t fail as everyone is watching you. We need to take that pressure off. You are a mother. You know what is right for your children. You know what is best. There are failed families everywhere. It is ok to admit I am really struggling. Your children are not going to be taken away from you. There is no threat of you never being able to adopt again. We get it. Motherhood is hard. Today you are struggling, tomorrow we can go forward together. Kinship care, adoption and foster care organisations need to relax a little so that we can do this in a really productive way. Mothers will always make sure attachment and bonding are there. We feel it we know it. We need to be a little bit more open.

Maybe we need to look at a buddy system. I’m coming into adoption I’m not sure what the process is going to be. Here is a mother who has been through it lets buddy them up and let’s make a village. Our children miss out on the village. We ask they get back to it on their own. Lets get back to mothering and the village. I really love Eastern life and travel life which is about looking after the mother. The first 2 weeks, 60 or 90 days is feeding the mother healthy food and looking after the family and the mother to recover from the birth. Adoptive mothers feels that too just in a different way. If we can be there it can help them to understand we have got your back.

21:31 You found post adoption services and other things that worked for you. What were they?

Therapeutic parenting is great and gives you the tools you need to take a step back from perfectionism and to understand how to guide behaviour in the right way and to support children.

The Circle of Security is really important and about the attachment and bonding.

Relationships Australia has some great support workers who do get it in supporting foster and adoption networks. There are some great stories and there are some people that are definitely meant to be in the adoption networks. There are others that should find other employment. I am hearing some wonderful stories of supporting adoptive mothers.

22:50 What are some things that other expectant mothers (on paper), should plan for or expect that perhaps you didn’t?

Matrescence. Put it out there as a word. Be prepared for matrescence so that when they may experience it they know this is normal Im going to be ok. For myself the most I got was talking to other adoptive families.  Even in the workshops we attended pre adoption it was hearing the other adoptive families stories. I remember even after our first adoption remembering what we were told – ok that makes sense now. A lot of those things are really really helpful.

24:13 Were there some areas that you think we can better support pre or post adoption?

Just having open conversations that you are not up on a pedestal, you are not the perfect superheros of the world. Reality and a realism check. You are going into this and it is not a lot differening in your mothering and mothering experience to any other mother. Just bringing it back to a real normal feel.  Sameness. Im feeling it is the connection between the biological and adoptive foster mother is so similar. We do have some extra additional things there. But the actual mothering experience is not a lot of difference. So we need to break the barrier down.

25:30 Anything else?

I am a mama rising facilitator. I do run mother circles for foster and adoptive mothers. I do have a website if people want to find out more about my circle of grace. www.matrescencesupportsisters.com

For a book to read, Mama Rising by Amy Taylor-Kabbaz that helps explain a lot more than what I have mentioned today.

Thankyou.

To anyone making the time to listen to this recording, thankyou for giving up your valuable time for the benefit of the young people in your life.  Until next time have an amazing week

 

OTHER RESOURCES

Amy Taylor-Kabbaz – Book Mama Rising, including information about the Pillars of Matrescence (Physical, Hormonal, Emotional, Social, Cultural, Economic, Spiritual) which involves healing with Connection, Kindness, Strength, Trust, Value and Grace

Melissa Christian Matrescence Suppport Sisters – Adoptive, Foster and Biological Mothers Support Groups and Workshops

Fetal Alcohol Spectrum Disorder (FASD) with Vicki Skelley - Recording

00:00 - Start 01:20 - FASD is the no blame disorder 03:08 - Living with FASD is like groundhog day everyday 05:37 - FASD and school is challenging 12:15 - Montessori school worked well in primary school 17:02 - High school isn't safe so home schooling was the best choice for life skills development 20:06 - Therapy that helps 29:17 - Food additives 33:00 - Food choices and building life skills 36:44 - Medications need to be trialled at home 41:46 - Behaviour, self esteem and living life to the fullest 47:25 - Look at the disability and what causes the behaviour and modify your approach 50:30 - Diagnosis and testing process 59:25 - Advocating in schools and for NDIS 1:03:00 - Submit a carers impact statement from your worst day 1:04:25 - Resources to access

Fetal Alcohol Spectrum Disorder with Vicki Skelley - Transcript

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice research-based learning that assist kinship, permanent and adoptive parents/carers in supporting young people. PCA Families has a zero tolerance of child abuse. I would like to acknowledge the traditional custodians of the land on which we meet and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are discussing Fetal Alcohol Spectrum Disorder with Vicki Skelley. Vicki is a permanent carer who has 11 years lived experience of FASD with her granddaughter who will be turning 13 years old soon. 

Vicki’s granddaughter also has Autism Spectrum Disorder (ASD), Sensory Processing Disorder (SPD), Attention Deficit Hyperactivity Disorder, Specific Learning Disability (SLD), Development Coordination Disorder (DCD) and dyspraxia, dyslexia – all of which are hidden disabilities - she looks like any other child on the outside.

Vicki has embraced lots of therapists and other supports including psychologists, a speech therapist, occupational therapist, art therapist, music therapist and physiotherapist.

So she has lots of lived experience to share and some wisdom to impart.

01:20 What is FASD?

FASD is Fetal Alcohol Spectrum Disorder which is caused when the child is in the womb due to alcohol exposure – the mother drinking alcohol. The brain and the nervous system starts developing 3-6 weeks into the pregnancy. So it could be that the mother could drink then and it develops into FASD. So the mother may not necessarily drink the whole way through. 

It’s called the no blame disability because a lot of women could be drinking in the first 4 to 6 weeks and often you don’t find out you are pregnant until 6-8 weeks where the damage is already done.

03:08 What is it like for a child with FASD?

FASD is a full body disability. Not every child has the same damage done. It affects their daily life, their motor skills, their physical health, their learning memory, communication, emotional n regulation, social skills. Its brain damage and full body disability. Some children have facial features but that’s only about 6% of cases. The majority you wouldn’t know because they don’t have the facial features.  It can take a very long time to work it out. The simplest way to describe it is its like a lightbulb. Some days the lightbulb is shining bright and its ready to go. Other days its like a loose wire in the light flickering on and off. On other days its completely off. A bit like groundhog day because she doesn’t have a memory so its like resetting every day. You don’t know what you are going to get on any day.

05:37 What is your experience of school for a child with FASD? Mainstream school, private school and home schooling?

My granddaughter wasn’t diagnosed until she was 9 so she had already been through a fair bit of kinder and school. She had previously been diagnosed with ADHD and had learning disabilities identified at kinder, in addition to sensory and social matters. So by the time my granddaughter had already been to school, I didn’t have all the information about all these things and the schooling was really hard for her.

She was probably labelled as the child that was disruptive, not paying attention, trying to mask and go under the radar, socially immature as most with FASD are 5 years behind socially.

We did mainstream up until the end of Grade 4.  Once I got the diagnosis in Grade 4 I came armed with a lot of information to the school at the end of Grade 4. It was very much like the ASD diagnosis we had prior. Keep things the same, no change. Many of those suggestions were don’t make change. That would go out the window if there was an emergency teacher. She was in a low maths class so she saw a different teacher for maths. That maths teacher couldn’t get her head around the FASD concept and would come up to me and say what’s wrong with your GD today. She knew her timetable last week but today she doesn’t. Why is she lying to me? She couldn’t get her head around the FASD.  I would have to remind them to read her report and understand this is part of her disability. Groundhog day.

So we didn’t get a lot of support in mainstream schools. Also the Victorian education department don’t recognise FASD as a disability. Only the South Australian education department do – the other states and territories don’t. So it was a lot of effort on my part. Hopefully that will change soon. I don’t understand why one state has trained staff. So it was a lot of training on my behalf for mainstream school.

We had an Individual Learning Plan (ILP) that I would hold the school to.

You can contact your regional education department and they have a disability advocate that can talk with the school and attend meetings.

But really she needed an aide and she couldn’t get an aide provided by the school under FASD.

When it got to the teacher calling me and saying Im not going to be at school today you may be better off leaving her at home. That was lovely of her but not how things should work when my child is having meltdowns spending half the night awake because she hated school in the end and she had a lot of time off maybe attending 50%. That’s when I looked at what is my next option as I cant keep forcing my unhappy child into school. With FASD they do suffer with depression as well as they don’t fit in. As they get older they start to realise they are different and don’t fit in.

She doesn’t have an intellectual disability so that door was shut. You can’t attend a special ed school unless you score 69 or under with an intellectual disability.

12:15 Montessori worked well

So that was when I looked at the next option which was Montessori learning.  Monetssori is very visual and they cater for a lot of children that may be a little bit outside the square. Every child has an individual learning program for each child and they have an aide in each room. They have a wellbeing program. They look at the world and how everything is connected, gardens, chooks and very free based. Children got to choose how best they were feeling and when they would do their subjects. You may not feel like doing maths first thing in the morning. So that was Grade 5 when we started the Montessori journey. She was skipping into school and loving it and we had a teacher that had taught a FASD child before. But then lockdown started which was home learning.

While Montessori were absolutely fabulous during lockdown, it wasn’t the same as what we were hoping for. We went into Grade 6 at Montessori with a new teacher who was new to the school. They had never taught Montessori and they had only ever taught secondary college. I went armed with all my FASD information for her. She said she can get my child from a Grade 3 level of maths and English to a Grade 6 level by the end of the year. I thought this is fantastic. But I kept saying but you have read all the reports and you have been on the FASD website. But obviously that didn’t last long. She tried to make a lot of changes. My child was no longer allowed to wear no socks and shoes. She had to wear shoes all the time. She left it up to the children where they sat every day whereas my child would need the same spot. So there were a lot of meltdowns and it didn’t go well. Lots of meetings including our team of therapists involved in the school.

By then it was half way through the year and more lockdowns and I had to make decision about high school. Montessori offered another year but she didn’t want to do that because the other kids would know. But she just wanted to be normal.

17:02 Home schooling

I couldn’t access a high school to support her.  There was no way she could have a locker and go to multiple classrooms and deal with multiple teachers and have a good day. And then deal with peers where she would be an easy target and do whatever a friend asks her to do. She would be in danger and it wouldn’t end well. So that was when I decided that home schooling would be the way to go from a safety perspective.

We don’t do maths and English in the conventional way. We work on life skills to help her to be independent in the future. I don’t believe she will ever live on her own. But maybe in a group setting she may be able to. So we work on cooking, measurements, safety.

The program isn’t fixed. You can choose what you do its pretty flexible. I had to apply through the Education Department to home school. You have to be approved for it. It’s a pretty quick easy process. You write down what you think you will be dong, I put down life skills pretty much for everything. I got an exemption for language because she doesn’t understand English let alone another language. You connect in with the HEN (home education network) group. We do some of the social activities. They meet every Tuesday in our area locally so we can attend those.

I also moved all her therapists to during the day so that makes our home schooling easier with less driving after school or on weekends.

20:06 What do you do as a parent or carer to help a child with FASD? Therapy!

We have a lot of therapists.  Sometimes people think you can get therapied out. Maybe you can. But my team of therapists that I have surrounded around my granddaughter, we work as a team and we don’t have a set program. We work on what is happening today or how she is feeling today because the big thing is depression. So we work to her capabilities.

We have two psychologists that we see fortnightly alternately. We see one face to face with a therapy dog just to talk or to help with depression.  The other psychologist is the one that originally had her diagnosed and put her forward. She is in Shepparton unfortunately so we Zoom with her. We do speech fortnightly and she has been on board for 3 years in our team. She works on social interactions. We work through a series of books that she suggested on social skills. Reading between the lines because people say things but may have hidden meanings so reading peoples facial expressions may convey to you what people are thinking and that helps with how to respond to that. For example I’ve taught my granddaughter we don’t always have to tell the truth. Sometimes we need to fluff around the truth. Rather than telling someone they look terrible in a pair of jeans. For her she just says things as they are.

We have an OT that comes to the house as well.  She used to go to the Montessori school as well. She works on a battery and that gets colored in with different colours indicating where her energy is.  They may come across as lazy and lethargic and they are more than happy to sit on the couch all day. So its constant motivation. We are currently working on pairing up another child in our area. We have done one session with the two fo them together. We are going to alternate one week at her house one week at our house run by the OT to try and bring social connection.  Hopefully that will work out. My granddaughter was pretty closed shop to it as its easier for her to look for the negative rather than the positive.

She also has art therapy once a fortnight in the home working on emotions.   She loves getting messy and art. Sometimes Ill come in the study and there will be paint sprayed everywhere. She can just be free and express herself. Sometimes they work with clay. There are not rules around it its just letting yourself go.

We do music therapy which is singing lessons. Her singing teacher which she has had for about three years who we also met at Montessori also does meditation and yoga. So she teaches her breathing techniques. Instead of shallow breathing you breathe from the stomach deep down. Luckily my granddaughter can actually sing and she is an awesome singer actually but she just doesn’t want to sing in public. The singing teacher has just got a Diploma in Hypnotherapy for motivation so we may start that program with her as well. We do that weekly in the home each week.

We also go to physio weekly so that’s to help with her coordinations disorder and her core body strength because she is very tall as well. A bit like ASD they can have body movement problems.

We also have an assistance dog so we have dog training each week.

29:17 What about food and food additives?

Definitely removed some additives. My granddaughters first diagnosis was ADHD. Its quite well known that with ADHD certain food colorings like green, red or blue can often set them off to be a bit hyper.

Now that I have the FASD diagnosis I see the main focus as FASD as her main diagnosis and ASD, ADHD etc as secondary. Some of them cross over. Does she have ADHD? I don’t know? She has FASD which is a whole body disability. She definitely has a reaction to food colourings and high sugar items. There are definitely a lot of additives for children with ADHD that you should avoid. I read a lot of labels over the years. You get to know what affects your child. Usually that child will crave that food and wait 20 minutes or half an hour to see abusive, teary, smashing walls, being disruptive. Try removing that food for a few days to see if you still have the same reaction. It’s an elimination process. One day my granddaughter got picked up and taken to a party. They took her to McDonalds and gave her coke. She cant have coke syrup because it sets her off the plant and she was like that at the party and then after the up you get the meltdown. In those situations all I can do is give her lots of water to get it out of her system.

33:00 Choices

Now that she is getting older, if she does have something behind my back that she knows she shouldn’t have and she comes home and is crying and havin a meltdown then we will need to have that conversation again. Its really hard when other kids can have these things and they are fine. As she gets older you have to put the choices back in there so they can make the choices for themselves. I hate coke to be honest. I started buying bottles of it and allowed it. I thought there is a day that’s going to come for her to make the choice. She doesn’t have as bad a reaction to bottled coke as she does to coke syrup.  I would allow her to have a drink of coke in the middle of the day so then I’m teaching her to make those choices that yes not a good idea to have coke at nighttime at 8pm at night.  Otherwise you put it up there on a pedestal and they will run riot one day. They might get abusive and the police might come along and cart your child off. They might end up in a psyche ward.  I’m teaching her choices and they have to be hers. You know you are going to feel like this after you have a certain thing. Are you happy to get this knowing how you will feel. That’s much harder when they are younger and you try and remove as much of that as possible. This is all safety that I am working towards. Im not always going to be there walking behind her so she needs to learn to make some decisions about herself. She knows how bad she feels. She is managing coke quite well within the house.

36:44 What about medications?

Her first diagnosis was ADHD at 6 or 7 years old. Paeds put her on ritalin. It was meant to fix her at school. I wasn’t open to it but we did a trial once on the weekend. I wasn’t going to pop some pills and send her off to school. She popped some pills and it didn’t work. She was walking around me in circles going Nanny, Nanny, Nanny please help me I cant stop. Any medication you try you should always try in your own environment anyways as you don’t really know how your child is going to react. And the teacher has other things going on anyway. So that confirmed for me she has some aspects of ADHD but the ADHD medication doesn’t work for her so its not an exact fit. She takes Melatonin to help her sleep. We also have a sound machine. Sleep is a big problem for children with FASD. We have this sound machine which lasts 8 hours with about 18 different sounds like a fan, the ocean, rain and others. I bought it off a sensory disability website.  The best thing! That’s what you do. Trial and error.

I give her iron to help with brain function. That’s it for medications.

Otherwise we have relaxation sleep sprays for the pillow.

She used to listen to a meditation tape at night but now she prefers the sleep machine.

Paeds have wanted her to go onto anti depression medication. Im not willing to do that yet. Once I do that you cant come back from that. Its life long. So I am hanging off. Probably there will come a day that we will have to go onto anti-depressants. But I would like at as many feel good things until then.

41:46 How do you help their behaviour, self-esteem and enjoying life to the fullest?

I have always provided her with a calm environment. She has a four-poster bed with curtains around. We have fairy lights and different things that make patterns on the roof. So she has that calm, safe space for a meltdown. So I will say maybe you need to go spend some time in your room calming down and then we can talk about what’s going on. Sometimes its like dealing with a 3yo because they get themselves so worked up they don’t want to hear you and they aren’t in the right mindset anyway. Its better off for them to be in a sensory environment that calms them.

When she was smaller she had a tent with cushions and her favourite toys.

I keep her off certain foods or because she is good at stashing things, I did investigate locking things in cupboards and the fridge. But I haven’t gone down that pathway. At some point you have to allow them to be responsible for themselves. I’m working on daily teaching them to manage those decisions. I just remove the stashes every day. I keep her room clean. I clean her room once or twice a day because with FASD they only go forward they don’t go backwards.  So she has the draw open and she doesn’t have a sense of what is happening around her so she will trip over and smash her leg or knee or something. She will change her clothes multiple times a day. I hang them up because is she puts her things in the wash it will be all the clothes not just the dirty one. I see other parents punishing their children for these things. For myself you can’t punish the child because their mind is in disarray. Everything is in a mess in their mind. Its much easier for me to go in there everyday and that provides her with a space that isn’t in a mess. If I keep teaching her it will eventually happen. It might take 8 years. Now I write a list. You cant just say to a child with FASD go clean your room, put your shoes on, brush your teeth, brush your hair, go to the toilet, shut the bathroom door and take the dog out for a wee. You would be lucky to get one thing done. Now I write a daily list of what order it needs to be done in. Now I have her making her bed. It might not be the best but its made. She shuts her draw and cupboard. She puts on her shoes and now she can do up her shoelaces because that’s the coordination and thinking. Its very hard for a kid with FASD. Groundhog day and same thing every day until one little thing will happen and they know how to do what they need to do. It just becomes habit.

47:25 Look at the disability and what causes the behaviour

It doesn’t help with yelling at the child either. I look at the disability. What part of the disability has this behaviour come from. When you can shift your mindset you will be surprised what comes. The other thing is it’s a bit like ASD you try and keep everything the same. If there is going to be a change like moving house or going on holiday. You just need to put as much pre warning into it, even on the whiteboard crossing off the days, and talk every day about the preparation of what is going to happen. Take your comfort staff with you so you take some comforts from home with you. I also use a visual clock which has a timer on it. IF there is something I want her to do it shows you the red part going down and when the buzzer goes off this is what you need to do, whether its getting off the technology or something else. She has no concept of time or what day it is or what the weather is like. Every day is it hot or cold today? Is it still winter today? She doesn’t feel hot or cold so she could be walking around in shorts in winter and in trackies in summer. So if she isn’t in my care someone else needs to watch that so she doesn’t get dizzy or dehydrated.

50:30 Process of getting diagnosed and the testing required for FASD – the WISC V and reports?

When it does becomes quite noticeable that your child has some form of disability, usually someone would have said something to you or you would be noticing certain behaviours. I already knew my granddaughter had already come from early childhood trauma. It was easy to label it in one box. She was with me from 22 months so we just worked on the early childhood trauma which was psychologists obviously and then moved to some other diagnosis such as ADHD because of behaviours and ASD. I was lucky to get into a psychologist in Shepparton who was opening the first FASD clinic in Victoria out of the hospital. My granddaughter was the first one to go through that clinic. Prior to attending that appointment you need to fill in a heap of paperwork. We had to have some confirmation that her mother had drunk alcohol during pregnancy. I knew my granddaughter had been born drug and alcohol addicted. I knew that the mother had drunk nearly every day and  had taken ice and pills and whatever. You need to provide details of where the child was born so that the hospital can obtain records. 

The FASD clinic was a full day 9am to 3.30pm.

I’m not sure what the process is if you don’t know the child’s history or have access to the bio mum to admit that. There are a lot of other markers. It was a verbal from me and that was accepted. You don’t need a signed confession or anything.

We went along for the full day of testing but it was pretty good.

There is a whole team. The paeds flew in from Perth and Queensland because that’s where the FASD hubs were.  We saw the paeds and they did the measurements to see if there were any facial features. Basically dissected the body from head to toe. Checking over everything. Then she had an appointment with a psychologist and I saw a psychologist separately. Then we had speech. We stopped for lunch with a hospital lunch.  Then we did the full day of testing.

There was another team of about 20 people in another room.

They obviously did that right through lunchtime because in the afternoon we did some other things.

It took about a month where I then went back on my own to get the report.

I met with the paeds and a few other professionals. They had diagnosed my granddaughter with FASD. They went through the report in depth page by page and explained everything. It was extremely in depth.

You can take the report into the school environment. There was a lot of good stuff including the one line that is they will require the full support of NDIS.  That was when I applied for NDIS because I applied with ADHD and we never got there. I hadn’t thought about it before that.

The one thing that broke my heart in the report was reading it was highly unlikely she would make it to high school. I remember reading that thinking that’s not going to happen. I now understand why. Having the FASD diagnosis was like the missing piece of the puzzle. It all fitted once I started doing my research and making accommodations.

And yes you need the WISC V test which can be done through a psychologist because that gives them the testing that they need to do measures against the FASD. Most people if they have an ASD diagnosis they probably will have had a WISC V test done anyway.

59:25 How do you advocate for and what do you advocate for in schools for children with FASD with NDIS?

It is neurological. 80% of children diagnosed with FASD have been diagnosed with ADHD prior. That is perhaps professionals getting to terms with FASD. It is immediately covered with NDIS and you can apply straight away. The line from the FASD reports should be put in. The line that this they will require full support from NDIS, lifelong support, no medication that will fix it.  It’s a permanent disability. There will always be therapists. Its just teaching them to be independent.  You put in for everything because it is a full body disability.  They are trying to get rid of psychologists so don’t go with the depressions content go with the day to day needs. They do cover OT, speech, music therapy, art therapy.  Keep pushing for emotional regulation.  Also we get the physio covered because that is about poor body movement. 

1:03:00 Carers impact statement on worst day

I strongly suggest that anyone that applies needs to do a carers impact statement on your worst day with your child. We don’t want to think of their worst day but from an NDIS perspective you need more support and funding. If you are not happy with it just put in for a review. They aren’t going to take it off you. They will give you more. Don’t be scared of them. They are a Government department but don’t be scared of them as you are just fighting for what your child needs. Its not their fault. This service is there for that.

1:04:25 Any other things to discuss or resources to access?

Most children are in mainstream school so hold your school accountable if they are going to that school and being in their care all those hours. Most schools think it must be something happening at home. Go in armed and give them handouts. You are their advocate and you know them best and the school needs to accommodate that. Make sure you have regular meetings with the school and the principal, year in year out. Sometimes teachers go renegade. Make sure you have that individual learning program or behaviour support. Back it up with an email – as per….the school will do this. You need that to come back to when you check in in a months time. If you do get the disability worker involved from the education department make sure it  happens. Don’t be scared to home school if you feel that it is in your childs interest from a mental health perspective. If you are not happy with the professionals change. If it doesn’t feel right to you change. I have to refer back to an Speech Therapist she had a session with one time. The speech said she doesn’t need speech.  Well that’s not true. But how many carers would say ok this professional has told me she doesn’t need speech. So if you don’t think its right it probably isn’t right. It’s the same as when you look out for the safety of your young person. Well they touched me wrong or were saying something that is inappropriate. Don’t be scared to change or challenge therapists. If you feel your diagnosis doesn’t fit keep searching or asking. If you think your child has FASD, which is bigger than ASD, get on a wait list and get diagnosed.

Thankyou. To anyone making the time to listen to this recording, thankyou for giving up your valuable time for the benefit of the young people in your life. Until next time have an amazing week.

OTHER RESOURCES

NOFASD  - No FASD Australia

HEN – Home Education Network

VRQA – Victorian Registration & Qualifications Authority

Community Kinship Care - Recording 

Mitch and Rach spoke to us about the community kinship or village care model that they operate within to surround a young boy in care. They are the extended family to this boy who is in kinship care with another family. Mitch is the Director of Complex Behaviour Change at CBC Change in Melbourne and has 30 years clinical experience. Rache is the Director of Resources at CBS Change and has worked in supporting adoptive, permanent and kinship carers with strengths based culturally sensitive case management. Mitch and Rach have a wealth of experience to share. We learnt some really important lessons about what is important. Whether that is falling in love with the child or surrounding the child with real family experiences. Sharing dinners together as carers are simple things that can normalise relationships and keep everyone connected. Similarly talking through with openness how to parent and how to add value and enrich the child's life are equally important for the child to continue to repair and move forward. A really honest account of how we can all be making a difference in someone else's life.

00:00 - Start 00:53 - How Mitch and Rache got involved in village care 03:43 - How the village model works - a primary carer and flexible carers who talk and discuss things openly. 05:40 - The secret ingredient - falling in love with the child, becoming like a family 08:46 - Looking to add value at all times - dinners, broad social groups, culturally appropriate care and different skills in different homes. Its about more than just sharing clothes. 14:16 - Attunement and connection require you spend the time being available and that you eat together so the child sees people around them functioning in a relationship 19:39 - So much pleasure by contributing in this way and each person in the family has a different special relationship with the child 22:45 - If others want to get involved ask at your school who may need help or contact various agencies from foster care to permanent care 24:40 - Your job is to just listen and keep children safe, not to determine who is right or wrong. Be flexible and open and supportive of the team around the child, no matter your personal views 28:22 - Secure attachment involves "learning the child" and bring them into your rhythm and connect. When ruptures occur reconnect. Reconnect often. 34:02 - You need to hold in mind that the child has not had a secure start, so security in relationships is key. Attachment, connection and relationships that are rick and repair and heal are important. Use a strengths based approach. 40:46 - Child protection is a system and it will have flaws like any system but you can do something to change that.

Community Kinship Care - Transcript

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice research-based learning that assist kinship, permanent and adoptive parents/carers in supporting young people. PCA Families has a zero tolerance of child abuse. I would like to acknowledge the traditional custodians of the land on which we meet and pay respect to elders past and present and express our intention to move together to a place of justice and partnership. 

Today we are discussing kinship care with a village care approach and how to provide behaviour support.  

Mitch Bayliss is the Director of Complex Behaviour Change with over 30 years clinical experience as a  sociologist in Metropolitan Melbourne. 

Rache O’Dowd is the Director of Resources and Support at CBChange and previously headed up St Luke’s Anglicare in Bendigo, supporting adoptive, permanent and kinship carers with strengths based culturally sensitive case management. 

Mitch and Rach are also “village” respite carers to a young boy alongside the main kinship carer and other “village” respite carers. 

0:53 Welcome Mitch and Rach.  Would you like to tell us a little more about yourselves? 

Rache - I can tell you a little bit about how we got into this. We did kinship care for a number of kids in particular one where Mum had mental health and the father was deceased, We had this boy here on and off for 2.5 years. Prior to that we had a couple of children come and stay through my children’s friends. We connected with the children’s families, let them know we were here and they could come and visit anytime. We had no rules about that because they were adolescents. We were minding children rather than parenting these adolescents because they were older.  That was how we formed a relationship was to try and not be a parent.  Even though there were some times where you had to parent. There was one boy that stayed with us that smelt bad. He didn’t know how to wash. Mitch eventually had to show him how to wash. You need to have a shower and put new clothes on, not put the old clothes back on. 

So that led us to our children being very open who was here and how we did things. 

We were very clear with our children from day one that when a child walks in here they will try and stake out a place and that as a family we needed to stay firm, without being rude or anything.  Immediately as a child comes in they will try and stake out a place, so we had to stay united as a family and communicate with each other. 

We had my daughters, partners, sister come and live with us through the department, which was the worst experience. She came through the Department (kinship care), which was the worst experience we have had. She didn’t last long as she was extremely damaged, she was a runner and had no idea what family care was about. 

We got into this village care situation really because of Covid and no one wanting to take on children. A lady I worked with offered that if there were any babies that came up that she and her husband would be prepared to have a child. I wasn’t a friend with her she was just someone at work. They knew in this foster care system people just weren’t taking on children. At that time I was setting up the Section 18 at Mernda Aboriginal Corporation and I was aware of this young child. So that was sort of how it happened because there was this child that needed care and there was nowhere for this child to go. So that’s how this village model got setup. And this commitment around sharing support started there. We all committed wholeheartedly even before we met the baby. 

3:43 So you have this village model that sits around the child. Can you tell us about how that works day to day and how you share and navigate that. 

The primary carer is the primary carer. That is our friends now. Because I was extremely lucky to understand the field, we have been able to have conversations between all of us that can be tricky, but you have to remember at all times that the primary carer is the primary carer. It was being able to have those conversations and be very honest. We are very honest but at the end of the day that couple have full responsibility for the child and how they want to parent the child. 

They are very flexible though. They hate guns. We have toy guns here everywhere because we live with our 8yo grandson as well. Nerf guns. So that is challenging for her, but she accepts that she cant rule everything, so we talk about it and she accepts it. You have to be prepared to get upset and to sit on the sideline because that’s your job. The whole idea for this young man was to have respite care built in from the start so if there were any issues or anything happens there is support. He is extremely comfortable with the child. 

5:40 You need to fall in love with the child. 

Mitch - You have to fall in love with the child, so there is a process, and there is a certain point in the care at which that is very clear that you have fallen in love with the child and then you grieve and feel it when they don’t come one day. Because primary carers make decisions actually we are off to Melbourne this weekend. That also says to you it’s kind of working – we are attached and have formed a bond. Rache is the motivator and she has been very set on being able to do this.   

Rache - My next job is caring and I am devoted to it and I enjoy it. With all the experience I have I hope this will continue.  We have the time and space and our family is not perfect but we have raised socially conscious children.  Our family is not perfect, far from it.  You have to accept at times your children will get hurt because that has happened in the past. We can be way over the top. 

Often day to day we keep in contact all the time. If she needs an extra day she will call me. We have him overnight one night a month.  And we have him every Monday and sometimes on a Sunday. Its very flexible – if they need the whole weekend we do that. And he goes away too. Its very flexible. 

The other day I was talking about how we run into him in town now, and he used to be a bit confused about am I going with you or he would be a bit defensive “I don’t want to go”. Now he is hi and understands the transitioning and coming and going. We were very worried about what we were doing as well, because it’s a bit of a trial. Its no different to me living around the corner from her and doing all the things we did together. 

8.46 You also look for opportunities to impact his or his situation in other ways. What are some of those things that you do? 

I bought him some shoes or when she comes to pick him up I might have a platter ready for his dinner. She always feels guilty because I have younger children here than her and our house is very busy. I grew up with 8 brothers and sisters so this is not busy to me. This is just life. 

We are trying to mimic what would already be in his culture and have all eyes on and a community around him that are close to him so he can go to different people, a network of family, because we are becoming family for sure in the way we operate, even when we have a fight. It’s about trying to be very culturally connected in the right way. And doing things that are purposeful for him. 

We share clothes like you wouldn’t believe so sometimes I’ll run out of a jumper or socks because they are all at the carers house. We share the clothes and whatever else we have. People in the community were so good. We also had babies so we kept a lot of things from our grandson who is only 8. We got given a pram.  The carer has been given so much stuff also. People are willing to support and I think it’s the only way they know how in a whiter society. In another culture they may support in other ways. People are very curious but its so easy to step forward. 

The day when we realised what Looneys we were was when Mitch, I and the mother/carer (because she is the mother and I am happy to call her that as she acts very much like the psychological mother). We were on the couch and we were talking about how brilliant he was and how he was going to be the next Prime Minister because he is very advanced. We looked at each other and said we sound like those nutty parents. You know that that is there.  Once that is there, that love and connection, you know it. 

The other thing we do as a community is she looks at what we have and she trys to provide something different for her child at her house vs ours. Like we have a big trampoline so that is something special that he does with us. 

We have a few manly things like a punching bag and our grandson has been teaching him how to use it. The mother/carer would take him for a bushwalk and discover nuts. We would do that but we are into other things as well. We have a knife throwing range and we throw 12 inch nails. He is learning different skills in different families. 

14:16 He is getting connection and a variety of quality attuned carers. Can you tell me more about that and working out where they are at when they first come into the home? 

We are attuned in and know the background. It’s the standards as you have to learn how to connect and regulate. Picking up rocking patting good structure and routine, predictability, lots of engagement and fun and play. All the stuff you would normally do. That’s what we have been doing. Because we are so tuned in you watch and you know when to pickup, hold or explore. That dance that occurs is the key to it and you let the child grow and do what they need to do. He has been so easy, this little boy, and I think its because of our experience. Also having an 8yo who is a big soother, and is growing up like a brother, is really good for him. Our grandson is living with 5 adults so its good for him to share and play too as we all automatically give to him and share with him.  So these two are interesting to avoid the me me me. They are like mates now. 

I think children have lost the concept of imagination and play. We are very much outdoor people. But nowadays you are competing with machines that somehow seem more interesting than the world. With Atticus we explore as much creative play as we can before you get to school and you have to do all that writing and your imagination changes. The early years should be spent exploring the world and that is where our parenting is all similar.  

He has a plastic keyboard from the op shop that the mother/carer would never have.  We loved it when she came over and we said look he already has a computer. 

And the food you need to eat together, you need to look after each other, that’s really important, and he needs to see as people functioning in a relationship. 

We have lots of animals. They don’t have animals.  He collects the egg and does the chooks as part of his routine.  We have a big dalmation. He is not scared of dogs or having a dog whack him in the face with his tail. He will push him away.  We have two cats and he is going to get bitten or scratched because he wants to grab their face. We have a parrot that flys around the house at night. We have a budgie. We have guinea pigs. We like animals and a lot of its about wandering around in that environment and just talking.  

19:39 I just think it is so hard to get people to understand how easy this is to do this for just one day and how much pleasure we get back. Absolute and total. Imagine being able to give and every pleasure receptor in your body gets set off. And then you say goodbye and they have to do all the hard work. They can’t believe how trashed we let our house get. I say he is only here one day and he can do what he likes. 

When he arrives there is a like an echo throughout the house with his name.  Everyone says his name. 

My daughter is always present but each of my sons has a different way of dealing with him and what they do. One takes him out into the yard and talk to him. The other one is very gentle and very sweet. For us we are more active play. He is immersed in a world. The only thing we don’t do is take him out a lot. She takes him out a lot and they go to bands and recently went to Carols by Candlelight. We tend to just keep him at home so for us he is just engaged with us. One thing I have noticed is that peoples curiosity is not always good. They talk in front of him as though he is not even there.  You see the good side and you see the ugly side of the community. That’s why I try and be a little bit protective.  

We have had some atrocious things said to us. Its racism. I have got myself in trouble with my family now because I didn’t like something that got said and I’m not going to back down. People should know better. You have to call it out. I have worked at Bendigo District Aboriginal Corporation and Njernda and racism is still there. Actions too. Reconciliation is a very powerful idea, if we were able to actually work it. There are elements that are working very well and there are elements that working at all. There is still a them and us. White people are still learning to respect. They are not there yet. 

22:45 How do you get started with this type of respite? How would you recommend others create this for themselves? 

All I know is we do it with our own families. We see our Aunts and Uncles and we offer care out when we can.  Not everyone does obviously. I don’t live near my family so I don’t have that sort of connection. If I was at primary school now and I realised some child was in care, I would offer them help. Maybe go to the school and say is there a child being cared for here? With foster care they are not going to do it and with kinship they probably don’t really look at family relationships and what is actually going to happen when you have a child in care. They often don’t look at family relationships and what is going to happen and they are left on their own. When we had that young girl that was absconding and breaking things it wasn’t child care protection that were concerned, it was the police. If you cant get that system to care, how is that going to work. For me it needs to be in your local setting what you are going to offer. I am sure there are so many people that want to offer things but don’t know how to do that. Its also hard sometimes to ask for help. 

24:40 Listen and safety, with flexibility and openness 

I think me having an eye for noticing when something is wrong has helped. Also when children came here distressed because of things that had happened, I didn’t push them away. I have a very strong agenda around adolescents because I see how badly they are treated. No matter what school you go to or where you come from often when two or more adolescents are together they can be seen as a threat. It was important if a child came here I would listen to them. I don’t care who was right or wrong. My job was to listen and to keep them safe, tell their parents where they were and say they were able to stay and we can sort it out. Adolescence is a very bad time. Our adolescents were crazy. For me it started with being open.  

That is an important point because you have different parenting approaches and different people involved and its very easy to fall into judgement about how people should parent if they are doing something different to you. That openness and willingness to talk about it and accept that there is difference and difference is actually good. Its ok. There isn’t one perfect approach. I think its also about communication and talking and it’s a bit like us dancing around him as a bigger system, always trying to stay in tune and connected, with each other and also with him. The big advantage he has had is that we are educated and understand how to foster secure attachment. That is an important point. This worked for him but it may not have. That idea of an understanding about how you do that for a child and how you do that together as you need to have security as a team here. You need to feel safe with each other in order to provide the safety that he requires. 

That’s what they do really well as they let us know regularly how important it is for us to be in his life. They manage that like the team leaders. It’s very important to have that and keep connected and have that all there. It is different parenting and different styles. We are different people.  Like Mitch said, I’m not going to get into an argument about what is best and what is not because that is not the point for this young man. The point is to feel and grow be loved and strong in a community with people that care for him. 

He is at the centre of all our thinking. We have approached it as it is what it is for as long as it is, because it was a bit uncertain, but its for life. He is part of our family and that is something that happens over time naturally of course. The intention is we don’t put a time limit on it. We will do everything we can while we are there. If he is with us in our lives forever great. 

28:22 Top tips for secure attachment 

Secure attachment is about being totally attuned and reading and learning that child. Hours sitting there, whatever you have go to do to learn the child. I did it with my own which is just spending time holding them and talking. Mitch has got this fantastic trick he does that he has used on lots of babies, including strangers babies like the 5 month old baby from next door. This is his trick for attuning in that works really well. 

The infants, very young children, you really have to tune them in and bring them in to your rhythm. Regulate against you. I have an interest in meditation which is where some of this comes from. So I get the child and you do the normal patting and rocking but I bring my breathing down and time it with theirs. I use a visualisation of breathing out breathing into their body and when breathing in bringing it back in. It takes about 1 or 2 minutes for the child to settle. I did it a few years ago. The mentalisation is taking in the child and responding on that basis.  Once I have the relationship or the connection by matching, I will then gradually bringing them down to a relaxed state. Once I have matched them and have the connection I will bring them down. 

That capacity to attune. Secure attachment is the circle of security and that idea and fitting into that space. I do think it is about providing a safe space when they are distressed and an opportunity to support their ability explore in the world. A lot of that is about being tuned in to where the child is at and what they need. The child yesterday he is beginning to form language. He comes in, sees me and connects with me immediately and we had been outside for a little while playing. He is pointing at the table and getting upset. It’s a different problem solving now that he is communicating, but it’s the same idea here. I keep going to the table and eventually it is the little brown cup he wants. I said do you want a drink and he goes yay (claps hands) - finally I got it. He had a couple of drinks. It’s a different type of problem solving but the same thing that is forming for him is that I am regulating with him. That repeat pattern as your child needs to be in a relationship with you. As they get older they cant always have it. Theres a rupture. So there is always that rupture repair dance. Out of a relationship and back into a relationship. That to me and with the child exploring, taking risks and becoming more resilient, not wrapping them in cotton wool, having the opportunity for risk, is what builds the secure attachment and develops a child that can regulate themselves over time.   Secure base so if something happens you can come back. Safe hands secure base. 

34:02 Security in relationships is key to compensate for a compromised early start 

For me I often react intuitively and think later but for me it is being present and having that absolute unique opportunity to be a part of their development in whatever way you can. You cannot do that if you are worrying about the washing. Or worrying about this. That’s why this community idea of kinship connection works. If she has something coming up and she is busy, why would you be disengaged with the child just to get that done when she can call me and say blah blah this is what happening and we will go yeah sure fine. She has birthdays, she has 50ths and she has all those normal things that we do that sometimes, if they are your child that is different in terms of biological and that is the network. But if it’s not, your mindful of what you are doing. And you need to be. Because that didn’t come because the family was ok. And that never goes and it will always be there and it needs to be paramount in your thinking. Someone like this young chap who is just adorable needs that presence of mind. There was no presence of mind for at least the first 9 months. I know that. So there is still a long way to go with him and you need to keep that in mind. I must present. Whenever she calls we just do it. We are boring and don’t do much. If it’s not convenient, which rarely it is, its easy to accommodate. Her and her partner and the family and the kids are amazing and we are lucky to be a part of it. That’s what I want people to understand. You get more out of it than you give. If I could spruik it so the government paid you to go around to every school and every doctors surgery we would do that. I have done it more than once and the kids have come and gone or stayed in contact thats their choice.  It works just to be there. 

What Rache was indicating there too is the fact that secure attachment is also that security in  relationships and you are really fostering secure attachment between adults. I like the idea of in some ways all attachment, connection and relationship going on here. That is what he is being surrounded by, the milieu of relationship worlds. Because the beginning hasn’t been great, you are actually always sensitive to providing experiences that are rich, that are repairing and potentially healing. The impact of neurobiology because of what had happened to him. 

But also holding in mind those parents and not thinking and being negative. You can have your own thoughts and feelings when he is not around. I watch the carer. She is so supportive in now engaging us with now doing unsupervised contact and get the Department away to make it as normal as possible between her and the parent. She keeps informing us and is very positive about all that, even though we know it is heartbreaking to think of what he went through and heartbreaking to think Mum and Dad can’t have him. Even if that is fake, even if that is you being compassionate on a level that you produce the empathy rather than feeling it, then do it. Its too easy to judge and what is the point. That is his mum and dad and you can’t remove that. Its having compassion and understanding for others, holding him in heart and also to have others around like his family involved over time and find a way of making it all work. You have got to extend to them first, and not accepting things that may be abusive, but be open to making the relationship work. It’s a strength based approach for what is working, not for what is not working. Try and find those moments. The family connections are slowly building now because the carer is just a powerhead for being culturally ok. Going around the sides sometimes so the people have an opportunity to be with this young man. The first feeling you have is oh what no you have run away. You have that emotional feeling but you need to channel it in a way that is positive. We always share photos so we are all connected.  So that the maternal side know about what we do and want to know about it and they are in agreement with what is going on so we can provide as much of a positive relationship as we can about everything. The carers are A1 when it comes to this and its about relationships. 

40:46 Is there anything else to discuss? 

There is something about working in child protection that people need to be clear it is a system and it is very much like Centrelink or any other Government system. It is floored because there is not enough money and for different reasons but it’s the only system we have and can go to and its hard. I don’t think the carers have a great time with it as well but its about making sure that the Department is not central to your problem. Don’t make the department your issue. Get away from them if you can. Go to permanent care if you can as quick as you can. No child should be raised attached to the Department.  Sens of belonging. There is nothing worse than hearing a child say at 8 my worker says. I think people need to understand that.  The department isn’t doing it to them so remove yourself from that and the legalities as much as you can. 

I just go back to fall in love with the child. It is essential Not just making it work in that sense, but for you to be willing to do the extras. They cease to be a burden and they become a delight and a joy.  That is how we approached it.  We welcome him because we missed him.   

I experienced hands on when our daughter got pregnant at 18 the communities ideas of that sort of thing. It wasn’t what people perceived as normal. We got asked blatant open questions about things that were none of peoples business when you are exposing yourself to things that aren’t the norm. You need to put yourself out and not care what others have to say. All I used to say about my daughter’s child is any child is welcome in our home and that’s what you have to think fullstop.  It doesn’t matter about the disaster or chaos or anything that is going to happen. There is an element of unconditional love and openness to others in a way that supports them. People should do that with all children to support them to have positive connection. We sound like saps but we are normal people and do stupid things. Even the older ones.  

My father grew up in out of home care in a boys home and then in foster care and his way he managed caring about people and vulnerability was amazing. He was very open to difference. He never used to say well you don’t know what is going on in someone else’s life. He was just very generous with other people and brought other people into our home and he said you accept and be kind.  Our kids have told us where they think we were fools. They have fallen in love too.  They love it and are old enough now to reflect on what having other children here was. They were never put second ever.   

Thankyou for making the time today. 

OTHER RESOURCES  

https://www.cbchange.org/about-us/ CBChange 

https://www.youtube.com/watch?v=uUAL8RVvkyY – Dr Bruce Perry and Oprah Winfrey 

https://www.bdperry.com/ Dr Bruce Perry 

https://www.deadlystory.com/page/culture/articles/what-is-the-nugel-program 

https://www.bendigoadvertiser.com.au/story/4694762/pilot-hands-back-control/ 

Therapeutic Assistance Dog Process – Vicki Skelley - Youtube

Vicki Skelley is a permanent carer who was looking to find a way to look forward to brighten her granddaughters future after a bleak FASD diagnosis. Vicki wanted to support her granddaughter with a best friend, and also find a way to make an invisible array of disabilities visible to others. The solution came in the form of Zara, a beautiful Italian Lagotto Romagnolo, a type of non shedding poodle, trained as an assistance dog by DogsforLife. Vicki learned that you don't just turn up and receive a fully trained assistance dog. It involves weekly training with her granddaughter and a variety of dogs. Weekly sessions of an hour each following many rules, such as toileting off the property to picking up after the dog. All of this was her granddaughters responsibility, not Vicki's. An extra challenge when one has a SPD diagnosis too! Did they succeed? Did they get funding assistance or NDIS support? Listen in or read the transcript to find out.

00:00 - Start 00:40 - We wanted an assistance dog to help with making hidden disabilities visible and to support my granddaughter with ASD, ADHD, SPD, LD, trauma, anxiety, depression, coordination and FASD. 03:10 - Our assistance dog is a Lagotto Romagnolo, similar to a large poodle, and came to live with us at 14 months old, after she was raised by a foster family. She goes to appointments, like the dentist, and the shopping centre with my granddaughter. 05:25 - The training program is two years long and weekly. OT and Psychologists from Dogs4Life observed Zara with their trained assistance dogs and set out in a contract what they could do for us. 12:09 - You can chose smaller dogs if they are suitable to train, but Dogs4Life mainly work with 2 dog breeds and mainly females. They work with Lagottos or Labradors. 13:14 - I chose Dogs4Life because I did research and made a connection at a community fair with a Dogs4Life dog trainer. 14:36 - It costs around $40,000 for an assistance dog in addition to food, medical and maintenance. 16:44 - You work with many dogs over 2 years and then chose the dog that's the best fit for you. Dogs4Life trained Lagottos and Labradors and we chose Lagottos due to their high energy. 19:42 - Don't start too young - your child needs to be responsible for the dog. 21:51 - The child is the dog handler, not the carer, and has to feed, water, toilet the dog daily. 26:25 - The benefits are many: mental health and wellbeing, having a best friend and sense of purpose. 29:02 - The hardest challenge is when the dog first comes to live with you. So many rules such as toileting off the property and its not allowed to eat scraps. 34:54 - Assistance dog training differs to dog therapy training. Your dog is specifically trained to suit your exact needs and is covered by a Public Access Test so you can take it anywhere. 39:58 - You can live anywhere with an assistance dog. Its your right. 41:55 - NDIS Support - Make it a goal and be prepared for a two year appeal process 47:16 An assistance dog does not replace therapy.

Therapeutic Assistance Dog Process – Vicki Skelley - Transcript

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice research-based learning that assist kinship, permanent and adoptive parents/carers in supporting young people. PCA Families has a zero tolerance of child abuse. I would like to acknowledge the traditional custodians of the land on which we meet and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are discussing dog therapy and the therapeutic dog assistance training process with Vicki Skelley. Vicki is a permanent carer who has done the work with her granddaughter and her gorgeous dog companion Zara.

Welcome Vicki.

00: 40 Can you tell us a little bit about your granddaughter and what led you to look at getting a specially trained dog for therapeutic support?

My granddaughter came to live with me when she was 22 months old and is now 12.5 years old. Over that period she was diagnosed with various disabilities that weren’t there when she was 22 months old. That was a long process right up until about the age of 9. She has ASD, ADHD, SPD, coordination disorder, learning disabilities, early childhood trauma, anxiety, depression and the main diagnosis and the latest diagnosis, Fetal Alcohol Spectrum Disorder (FASD). The reason I started looking at assistance dogs was because of her invisible disabilities. They weren’t present on the outside to others until getting to know the person. I got to a point that I felt I cant have it tattooed on her forehead. How do we alert others? That is how some of those behaviours associated with those disabilities come out. Socially they don’t have the capacity to relay what they want. The anxiety level is probably already quite high. Emotional regulation. So it was really important to me about how to move forward in the future to be able to continue to go out into the community and make other people aware straight away that this person has a disability and may need some extra help.

03:10 You now have a specially trained dog, Zara in your life. Can you tell us about Zara – what sort of dog is she and what does she do day to day?

Zara is a Lagotto Romagnolo, which is an Italian breed of dogs, similar to a larger poodle, so a medium sized dog and she is non shedding.  She came to live with us when she was 14 months old. Prior to that she was with a foster family. She supports my granddaughter by giving her a sense of purpose, for instance getting out of bed. There is motivation as well. She supports her emotionally such as just by laying with her around the house.  She gives her exercise because you have to go for walks. That might not just be walks it might be going to the park for a bit of ball play. She supports her going to appointments. My granddaughter doesn’t like the dentist so she goes to the dentist. She supports her when we go to the shopping centre because of over sensory and anxiety, everything kicks in. While she is at the shopping centre, my granddaughters focus is on the dog so it takes the focus off what is going on around her. And that also alerts other people in the community when we are out and about that this person has a disability.

05:25 Can you tell us about the training program that you went through at Dogs 4 Life to make this possible? I understand you don’t just turn up and receive a fully trained dog? What dog breed options did you have to choose from?

It is a long process. At the start I thought why is this so long, can we not just get a fully trained assistance dog and off we go. Being at the other end and now having a dog I now understand why and the process. Once I started researching assistance dogs I decided to go with Dogs4Life. You go online and complete a form and disclose disabilities, behaviours, therapy you are doing, reasons why you think an assistance dog will help you. Dogs4Life then contacted me and they do a home visit with their own psychologist. They came out with a fully trained assistance dog and do an assessment. A meeting in your home – a fairly laid back meeting on the couch. For instance the dog was sitting on my granddaugheters lap. The psychologist at that point if I look back was assessing what was going on with my granddaughter and the dog, what interactions were happening. She was fairly laid back but taking lots of notes. Dogs4Life also have an OT who has a dog. She also came out and did an assessment with the dog at home. Very similar taking lots of notes. They obviously get back and have a pow wow and decide if an assistance dog is going to be a fit for this family and the child. They then send you a contract that is very in depth and tells you how that dog is going to support your child. What they can do.

That is just the start of the program and if you accept the contract you move on to weekly dog training sessions for an hour with a trainer through Dogs4life. They bring a fully trained assistance dog with them and that’s for 2 years. That might start off in your home, maybe the first few sessions, getting used to the whole comfort thing with a dog. That moves out into the community with small slow baby steps. That might be a walk around the block. Then we might start going around the block to the park for some play. You are also concentrating on crossing roads, how you cross roads. The dogs are trained to anchor as soon as you get to the end of the footpath anyway. My granddaughter was oblivious to those types of things. She would just walk out. It was really good in that respect. You move forward to going to shopping centres and going up and down lifts. Dogs cant use escalators so that was another fear we had to overcome as my granddaughter hates lifts. It’s not safe for the dog to go up the escalator with a dog. Going on public transport,all the aspectsof going out,  going to the shopping center, going to the supermarket.

The modules are up to the trainer. There is no set training program that was given to us. Im sure the trainer has a set program from Dogs4Life that they follow as to yes we are ready for the next step. If  you cant negotiate walking around the block and stopping, You have to learn how to walk the dog, you to have a loose lead. The dog walks on the left side. They have to become second nature to move to the next step.

With my granddaughters disability, with the FASD, which is permanent brain damage, her brain is quite short circuit on most days, and she doesn’t have a memory.. So for her its like groundhog day every day. I can only imagine what it is like for her – very frustrating. So everything we do is about consistency, routine, same same and so that she learns it as an action rather than a memory.

12:09 Did you have different dog breed options to choose from as part of that process?

Dogs4Life mainly purchase Lagotto’s or Labrador’s, mainly females. Females are probably a little bit more settled earlier in age than males do. They have worked with some males but predominantly its those two breeds and they are females. Saying that, they will, if a particular person has a preference for a type of dog, such as a really small dog, they can train different dog breeds if their suitable to be trained for the disability.

13:14 How did you choose Dogs4Life?

I was looking into it and then I went to one of those community centre open days where they had all these kind of different therapies there and took the girls. There was actually a trainer there from Dogs4Life. She had a little stall setup. Initially I thought she was someone with a disability with an assistance dog. I went over and found out she was a trainer with Dogs4Life and she gave me some information and she has been our trainer for the past 2.5 years. I did look at some of the other programs. The programs and prices are all basically the same. I think because I made that connection I went with Dogs4Life.

14:36 What are the costs involved?

About $40,000 all up life long. When you get an assistance dog with Dogs4Life, they are there for life. That includes all their training, the weekly training for 2 years, the dog because they purchase the dog, the foster family training. That’s not the food, medical or other costs.  It covers that before you get the dog, such as when its with the foster family as the foster family don’t pay anything. I buy the food and if I have to take her to the vet I cover that such as her yearly injections. I have had to take her to the vet once before. I pay for the grooming as she has that type of poodle fur that needs to be clipped. However, if you are lucky enough NDIS do pay for assistance dog maintenance of around $2,400 per year. Don’t quote me on that! I haven’t personally managed to get that yet. I need to go in for the fight on that one.

16:44 Would you recommend choosing the program then the dog or vica versa? What age would you recommend doing this?

With Dogs4Life you are working with Lagottos and Labradors over that 2 year period. You don’t just work with one dog. We probably worked with 8 to 10 different dogs over that period of 2 years. We got to see the different personalities between the two dogs.  The Lagottos might be a little bit more higher energy than the Labradors. My granddaughter has low energy so she needs that motivation. When it came time to get our dog, and when we were ready, and we were a little bit behind because of Covid, so it was about 2 years and 4 months, we got invited to go to the university where they run the program at Latrobe. We got the chance to meet Zara there. We were told they had one dog there that could be suitable and there were 4 or 5 other dogs we could meet the week after. So we went along and the head dog trainer was there and he is the one that matches up the person and the dog as there has to be a connection. At the end of that he said Zara would be a good fit. He said you can go away and think about it and you can meet other dogs next week if you want. We went away to think about it and my granddaughter said I want Zara. We did have a choice. And there were Labradors as well.

19:42 What age would you recommend doing this?

My child was just over 9, when she got diagnosed with the FASD.  Because that could cause such hard times for her future and because it was such a hidden disability. I can’t really answer that question but for us she was just over 9 and it was a 2 year program and she was just turning 12 when we got Zara. So she was just under 10 when we started the program and that was a good age because she was capable of doing things physically and with prompts. Me personally I wouldn’t do it with too young a child. The child can’t be pulling the dogs tail or doing rough play with the dog. There are certain rules around having an assistance dog. They are trained not to bite, not to do tug of war, not to chew your furniture. And if you have younger siblings you have to incorporate that as well. Is that going to work?

21:51 What about the ongoing commitment and training for your granddaughter?

The dog is her dog and I am the secondary handler of the dog, but I’m her carer so it’s still my responsibility to remind her but she has to physically do everything for the dog. Basically she has to get up in the morning and take the dog to the toilet and the dog doesn’t go to the toilet on property. The dog has to be off property to go to the toilet. The reason behind that is because you are going to take them into the shopping centre or on public transport so you have to teach them to go to the toilet on command. You say a basic word and they have to go to the toilet. She has to take them out to the toilet in the morning on the nature strip. She has to then feed the dog and measure out how much to eat. We don’t want the dog to end up overweight, because they will eat all day. We have to make sure the dogs water is filled up so I have to check the water and tell her have you checked the dogs water today it looks a bit low. We then have to go out on our pooh walk because the dog is in a routine just as much as the child. She has to walk the dog and I walk behind as I am just the carer behind overseeing. She has to stop, she has to know when we get to the grass the dog goes on a long lead so it has the opportunity to go to the toilet. She has to say the words. She has to pick up the pooh and that was a huge one. It’s a sensory thing and its disgusting. Its part of the two year training. I never thought we would ever get to that but she does it. When we get home its about whats happening today. Are we gong to the therapist. Is the therapist coming to the house? Are we taking the dog or not. She knows how to put the dog walking stuff on the dog, which is the dog harness and she does all ll of that. If we are going out what do we need to take. We need to take water, a bowl, is the weather hot, is the weather cold. There is a lot of responsibility on the child but really if you just incorporate that in your routine. But as a carer there is a lot of responsibility because you cant just assume someone with a brain based disability has done what they need to do.

At the same time it takes the focus off themselves and she is focussing on the dog and she is not thinking about her depressive mood as the dog needs these things done regardless of how she feels. It helps her to realise its not just about Im depressed, unmotivated and not moving today.

26:25 How has your granddaughter benefitted from the program? Independence, friendship, motivation, caring for others.

It has improved her mental health and wellbeing astronomically. It has reduced her anxiety as she can now go to the shopping centre, somewhere that she didn’t want to go before. In fact before she didn’t even want to go in the car and now she sits in the back in the car. With a lot of disabilities, they are often thinking the worst. It’s raining, so there’s a storm or this and that. It gives you a best friend. Socially its hard to have friends because your peers think why is she not interacting socially the way we should. It gives her a best friend. It gives her something that she loves and cares about but she gets that love back from the dog. As long as the dog is fed and walked. Animals are full of love so they will love you no matter what. Its given her a sense of purpose. It shifts the focus off herself and she feels needed. Sometimes children with disabilities especially at my granddaughters age heading into being a teenager. They don’t feel like they fit or have a purpose and they don’t feel they can do things and they want to be like everybody else but they find it ten times harder. So she feels like she has a purpose and is needed and she knows things about assistance dogs that other people don’t know.

29:02 What were some of the challenges along the way that you weren’t aware of previously that you think every family needs to consider?

Besides the commitment from the carer, the hardest challenge I found was when Zara came to live with us. Its ok to have weekly training for an hour and then we had a few weekly one on one sessions with Zara before she came for a bit of bonding. Once the dog comes to live fulltime it’s a very full on process and probably the hardest part because there are a lot of rules and it’s a very strict program that you need to stick to. We were having 4 hour training sessions in the home for the first week so you had sometimes two or three. We had the OT here we ha the dog trainer here. We had to forget doing anything else. It was a very intense part of the program because you have to remember that the dog has been with a foster family so it’s come into a strange house so we have to make sure the dog is supported but then we also need to bond the child with the dog and they need to find their way together. So that’s why it’s such an intense part of the program. There’s rules. You cant be leaving chocolate around. One of my granddaughters things was having chocolate hidden in every part of her room.  We had to do some retraining around that. I started that training before. The dog isn’t allowed to eat off the floor. It’s not allowed to eat scraps. We need to be sitting at the table and we have to clean up after ourselves because a natural thing is for a dog to eat scraps. That’s hard if you go to a restaurant. I did get to a point after 3 weeks that I thought oh what have I got myself into here. It was full on for me because I had to make sure all these rules had to be followed. There were so many rules that needed to happen. And we still needed to go for a walk come rain, hail or shine. Dogs4Life set a route A around the block that we had to do 5 times a day. Over the weeks we had other routes to walk.. It was to make the dog familiar so it knows how to come home. With her brain she becomes disorientated and while I might have walked that walk a hundred times she might think I don’t know which way to walk but the dog knows which way to walk.

The other thing I would like to say in that is that if carers are thinking about getting an assistance dog for their child, just be aware that an assistance dog doesn’t replace a carer. You cant just think you can send your child out the door for a walk around the block with the dog and everything is hunky dory. That is hopefully the point we will get to. That is definitely the aim to make her more independent.

Also requires a whole family commitment as there are other things you need to think of. If you are going down the beach like we did in January for a few weeks, you have a dog. You can’t just go to the beach for the whole day in the sun with the dog. That’s just one example. It’s a whole family commitment and it’s like having another family member. The dog is there for the person one on one. The dog is not there for me. Its not there for my granddaughters sister. So you have to be mindful of that.

34:54 Is Zara an assistance or therapy dog? How does the training differ?

Zara is an assistance dog but under that comes an emotional therapy companion dog. The training is different.  With an assistance do if you have a child that has some form of disability where they require a dog to alert, maybe they have a diabetic child, the dog can be trained to alert if their levels get too low or you might need an assistance dog to push the button at the lights.  They are trained to suit the disability. A therapy companion dog is basically trained and used for not just one person. For instance my granddaughters psychologist has two therapy dogs in her room which she uses for emotional support for the child when they are in the room talking. So they are trained to be with more than one person. An assistance dog is trained to support just their one person. In saying that they might have therapy dogs that they use in retirement villages or children’s hospitals or schools to support wellbeing and mental health. Someone individually might have a dog that they call their emotional support dog. An emotional support dog isn’t covered by legislative laws. Whereas an assistance dog has to sit a PAT test every year (Public Access Test). They have to do that PAT with their person each year so that they can go anywhere. The only place an assistance dog can’t go is the operating theatre. So if you want to get on a plane, say we decided we are going away and my granddaughter is taking the dog, then that dog can sit on a seat next to my granddaughter and I don’t think I have to pay for that seat. I haven’t tried it. I haven’t put that to the test. There are other things such as if I want to go and stay in a motel, I don’t have to pick a dog friendly motel. They prefer you don’t pick a dog friendly motel.  I don’t go to dog parks. I don’t go to dog only beaches. I go to beaches where dogs aren’t allowed because she is allowed because she is an assistance dog. They are covered under a law so if you get knocked back you are supposed to call the police because you cant refuse assistance dogs entry. I have seen people walking around with therapy dogs with  dog therapy jackets on around shopping centres. I haven’t seen them pulled up.  I wouldn’t personally say anything but legally they are not actually covered.

39:58 Did you make that decision about getting an assistance dog or did Dogs4Life?

My granddaughter actually helped me make that decision. She was the one that first mentioned it. She said I want a best friend and someone that understand me and loves me no matter how I am. She was always an animal lover. Animals were always something she connected with. When she was younger she used to bring all the snails home from school. She felt they would have a better home in our house.

Whatever program you go on if they don’t think they can offer you what your asking for, they will tell you straight out. But it might be what your home is like. If you have 8 kids and you want an assistance dog for one child, that might be a little bit awkward. Its going to be a lot of work. Where you live does not change whether you can get an assistance dog. People that live in flats or high rise apartments can have an assistance dog. The dog doesn’t go to the toilet on property anyway. The dog doesn’t bark because its trained not to bark. You can’t even get refused a rental property if you have an assistance dog.

41:55 How did NDIS support you in this venture?

Great subject. Sometimes their your best friend and sometimes their not. When my granddaughter first got accepted on NDIS it was just after the FASD diagnosis, even though we probably could have gone on it sooner. I was really lucky that I had a good person as I didn’t know much about it. She put in a long term goal for my granddaughter to have her own assistance dog. So that’s the first step to have that put in as one of your goals. Once it is there it is hard to get out. That was a direct connection to supporting therapy for her even though we have other therapists.

NDIS paid for her to have those two years of weekly dog training. You have to be really careful here because I don’t want someone else to just think it will just go on NDIS. Every individual is different. They are trying to cut back on assistance dogs over the last couple of years because there are children with ASD that are trying to get assistance dogs.

Then after 2 years and we knew that wasn’t long before the time was coming for us to get our own dog. Dogs4Life have they own OT and psychologist so they do the NDIS paperwork that’s required to put in for the funding. So we did that process and it was denied. All criteria were met except it’s a child vs an animal. Animals can be unpredictable. There is a fine line there. It can be argued. You can go through an appeal process that can take up to two years. I wasn’t prepared to wait. We had already waited two years and it would have been another two years.

That’s when I looked at other avenues. You can look at fundraising, you can look at a GoFundMe page and you can get someone in the business community to support you for fundraising. I was having a conversation with the manager of PCA Familie at that time and she said we can help with that. I put through all the information we had from NDIS and Dogs4 Life. I also put through my own statement. The person at PCA Families could only approve a certain amount of money. So the person from PCA Families also wrote a statement of support and that when over to a board meeting at OzChild and they approved the funding. That was how we ended up getting the funding for Zara. OzChild sent the payment through to Dogs4Life. It was a miracle really.

There are other funding options that I have become aware of such as Variety who will support funding assistance dogs. They do intake once a year and the criteria has to be that you are denied funding somewhere else first.

47:16 Is there anything else you wish to comment on today?

Everyone’s journey is different. I can only tell you my journey. My thought process in getting an assistance dog was look into the future. For instance, my child is 12.5 and about to become a teenager. Going by my FASD report the future was sounding quite bleak. I think I was looking at a therapy that would best help my child. But an assistance dog does not replace a therapist. The assistance dog is part of our therapy team. We still do speech, OT, art therapy and the dog is part of that team.

Thankyou

To anyone making the time to listen to this recording, thankyou for giving up your valuable time for the benefit of the young people in your life. Until next time have an amazing week.

 

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