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This is part 1 of a 2 part video recording with Bobbi. Part 2 is to be shared in January. 00:00 - Start 03:35 - The biggest mistake, being resistant of support for self and family 09:10 - Coathangers and labels matter in gaining others understanding and support 14:56 - Medication - Do a one dose trial while engaged in play, not by testing in the school ground 20:54 - Take a friend or a professional to all meetings about your child 23:30 - If school says it isn't safe for your child at school, work out the Education Departments responsibility and see if NDIS can help too 25:54 - Tips for working with schools. Find an advocate and provide all documentation you have about your child and communicate with them ongoing as things change 28:10 - Let school know what works. Rules like when and then help with demand avoidance and arguments and debates 31:28 - Don't say please to children, say thankyou, so its not from a place of emotional disempowerment 32:46 - Don't ask questions, give an instruction to avoid power struggles 34:56 - Take breaks and have respite. It's not a failure 38:57 - Avoid compensatory parenting (parenting to cover the hole parents have left behind) 42:40 - Flip it by compensating but naming the process and what's going on for you at the same time. It will open up an opportunity for a conversation about feelings and to sit with the feelings together.
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 behaviour management and kinship care with Bobbi Cook.
Welcome Bobbi
Bobbi is the Founder and Director of Bobbi Cook Behaviour Management (BCBM). She provides leadership of BCBM as well as leading workshops, webinars, and speaking at conferences. Bobbi has 30+ years working in behaviour therapy and is committed to providing services to help families move forward. The great thing about Bobbi is that she provides useful and practical strategies based on her training and experience. Bobbi is also a kinship carer to her 13yo grandson so she understands the demands of caring for those with additional needs and how to “navigate” the system.
Is there anything else you would like to tell us about yourself Bobbi?
Well actually Luca is now 13 and a half years old and is not so little anymore. So year eight.
So I wanted to ask you what are the professional and personal as kinship carer, experiences and lessons you've learnt on managing challenging behaviour. I’m basically trying to ask you tell me everything in your brain!
(gardner arrives so change of air pods is required)
2:54 I have learned something new every day and something that is unexpected. Often the things I do have unintended consequences both positive and negative. If I knew what I know now 11 and a half years ago when Luca first came to us, things would be very different. I’d really like to talk about some of those things today that I would do or would have done differently. The things I wish I had known.
3:35 ASK FOR HELP
So what are some of those things that you should have known?
I think one of your questions that you sent me was what were the mistakes I made. And I think you know I might start there. I was really, really resistant of support. That's a pretty common theme. I was scared if I didn't get it all right they'd come and take him away. But you know what, I would have had to do things like really, really bad. I mean not just a little bit bad but really, really bad. Yeah. Maybe think about that. I can relate a little bit. I was too scared to ask for help. And look this was really, really hard as he was biting 60 times a day. I do not know what to do with this. The only way he communicates is to bite or to scream. This is tough. So I didn't ask for help. I didn't actually know I could ask for help and therefore I didn't actually know how to demand help. So how did you manage? I don't think we really did. It is the truth. So our other children actually really dislike Luca. I could probably say they hate his guts. I’m just being really honest because we didn't get the help that we needed. We didn't the help they needed. We didn’t access support for them, for our other children to understand the demands of Luca's care needs. We didn’t get them education in autism, in reactive attachment disorder. We didn't support them to actually understand what was happening for Luca. We never actually told them Luca’s story. So they didn't ask? They didn't ask and we didn't tell. They just saw us breaking and they saw us no longer available for our 13 other grandchildren, or for them. They saw us sinking thousands and thousands and thousands and thousands of dollars of financial resources into Luca. They saw us lose our home, they saw us lose our business, they saw us go bankrupt because we weren't actually, I wasn't actually able to continue working full-time. So therefore my business went belly up and it was just a nightmare. So they just saw us break.
Did they raise it with you at the time or how did you navigate that? It was just you know that stuff like be stricter with him, he's just being naughty, smack him, if you didn't give in to him all the time, if you didn't do compensatory parenting, if you didn't molly coddle him and pander to him. All the theories from afar. If you didn't insist that you had to have dinner at five o'clock every night and that you didn't insist that he was in bed at seven o'clock every night. And then you could actually had visitors come to your home and you would come to family events. That's where dinner was at six or seven o'clock and nobody worried about bedtime because structure and routine weren't intensely required.
I think often people think they know your child better than you do and I think you're always the expert in your child. So you're living and breathing it trying to do the best you can.
So we learned that if we didn't feed Luca at five o'clock on the dot every night he would get hungry angry, hangry. He would lose the plot and we would end up with huge meltdowns. If we didn't put him to bed right in that window of between 7:00 and 7:01 pm, and we missed that one minute window when we could actually settle him, he was up until one o'clock in the morning because his windows of tolerance for things were so small. And he would shatter so quickly. They didn't understand that and we were right in the middle of the hell of that. We didn't even think that we needed to communicate it because it was all so obvious to us.
09:10 COATHANGER AND LABELS MATTER
So what is the situation with him, what are you managing for him so we understand that?
So Luca is 13 and a half now. He's an alphabet boy, so he has got RID, ASD, ADHD, ODD, PDA, 12p duplication chromosome disorder, dysgraphia, dyspraxia and severe anxiety. Some of those I don't even remotely understand at all.
So we were anti-label initially and that was one of the mistakes that we made as well. Why was that? Why is being anti-label a mistake? Labels provide coat hangers for people to hang their experience off? And having a label that people understand is really helpful right. So when we got Luca we knew he had RAD, reactive attachment disorder, in early childhood. We knew that, the paediatrician knew that, we understood that, but nobody else did. If you line up the behaviours of RAD, ASD, ADHD and ODD, you line them all up, they're pretty much all interchangeable. I can see that. Luca actually also met the diagnostic criteria for autism spectrum disorder. So we said we understand he doesn't have autism. He meets the criteria for autism but his actual more authentic diagnosis is RAD. But nobody gets it and it takes him nowhere and gets him nothing. So we went with an ASD diagnosis. So that's why he's got the alphabet. It's relatable, a coathanger for teachers and others. They can hang their experience off and they go oh I’ve had a kid with ASD before, I know what that looks and feels like. But our RID I’ve got no idea .
To further complicate things with Luca, he's got a 12p um dot 13.333 chromosome duplication. What is that? it is a combination of ASD, ODD, ADHD and everything all bundled in together. But what it also has is a whole lot of medical things that go with it. So he's got a heart murmur, he's missing some teeth, he has a propensity for or a pre disposition towards epilepsy, thyroid disorder and other things like that. So what I think is actually going to happen is that like ASD, is this amazing umbrella that everybody is using, and like so this is my theory. ADHD and ODD seem the same. If you see a kid with ADHD you can pick them a mile away. You go oh yeah ADHD, ODD and that's because they're authentic diagnosis. But autism, every kid with autism looks different. And you might find a few kids that are kind of like, oh you're really like little Sammy, yeah you're like little jill, and you're very similar actually. I can recognize that. And then when we dig a bit deeper we find that little Sammy little Jill and little Bobby have all got a 12p duplication. But we're all under the umbrella of autism. Because if we say 12p duplication nobody's got a clue. And that's why there's so many differences in autism because autism is a grouping name of a lot of different chromosome disorders. Give it 10 years and people will understand rare chromosome disorders much more effectively. And then you add FASD in there as well, and that looks the same as well. And you say to somebody oh yeah my kids got FASD and they go uh. You say oh my kids got autism and ODD with ADHD and anxiety and they go I understand.
So often we need the labels to help people understand and expand emotionally to be able to support our child and not just think they're little tick turds. Yes I’ve had experience of that. It is deceiving and people don't always see it immediately, so having that coat hanger makes a lot of sense. I’ve gone from being absolutely anti-labels to pro labels.
14:56 MEDICATION - DO A ONE DOSE TRIAL
I’ve actually gone from being anti-medication to okay with medication as well. That that has been a very humbling journey because I was just like evangelical. No medication. So I was gut health, diet, the whole nine yards, supplements, outside time, brain gym, the whole thing. I guess I learned the lesson of that with my son, Luca's father. So I was a vigilante. I was an anti-medication vigilante. Things were going very, very badly. Then I actually tried medication for ADHD when he was 10 years old and overnight I had a different child. Wow. There you go! And so his self-esteem, his well-being had been so damaged by me waiting too long to do a medication trial and he had missed all that time. So did you have to wait for a medication trial or was it just more you're getting out of your own mindset. It was me. It was actually the paediatrician with me sitting there balling my eyes out with the paediatrician. And he's going, he said it's at the point where if you don't do a medication trial I’m going to have to do a child protection report. Because you're not actually following medical advice and you're sitting here asking what to do. It's in his best interest to do a trial. All he said was, give him one dose of medication, that's all I’m asking you. One dose and then sit him down with a pile of lego and see what happens. I think that's a natural thing, a pile of lego it's a natural thing to try and treat without interference isn't it. So that's right and eliminate and then get yourself ready for that point. Look with Luca I felt the same thing rise up in me. It's like I do not want to medicate my grandson. I don't want to add something else into this. However, he has not been successful socially, he's not successful in communication, he's been kicked out of a child care centre, it's just a nightmare, we're breaking, I have to try medication. So I think sitting kids down with giving them one tablet and sitting them down with a pile of lego, it’s the best test you can do. But is it always that obvious or is it always that immediate? I don't know. I think nine times out of ten it's that obvious because kids learn by play. That's one of the main ways they learn and if they cannot follow a play theme they can't learn. If they can't create something successfully with lego or duplo or whatever it is that's age appropriate and interest appropriate for them. If you've got a girl, sit them down with dolls if that's what they like. sit them down with one of their preferred activities and just notice the difference in their engagement. Do they play differently, do they follow a theme through more effectively, do they actually build a more complex lego, do they actually set up a scene for the doll to play in. That tells you whether the medication is being successful or not. Often they're so anxious around school and they're disengaged learners. If you're using how they engage with their schoolwork as your measure, your’e coming up against layers and layers and layers and layers of trauma. So actually looking at how it affects their play you've got a much better read on whether it's been successful. And they're not stressed, they're not anxious, they're in a space that's familiar and you're just sitting quietly having a cup of tea observing them play. There's no demand on either of you. All you have to do is sit down and experience a few hours together quietly and any parent should be able to you observe their child and be aware of sort of how they're engaging at that moment in time so yeah yeah it just takes all the pressure off yes and it's your experience of your child or your grandchild or your niece or your nephew or your neighbour's child that you're caring for. Great it's such good advice. So just take the pressure off with play. They've got connection they feel safe that you know they're engaging in something that interests them. So they're not feeling like they're being measured or observed. And if you want to really do a really good blind trial do it twice. Do it without the medication, sit down them with them and just see how they play with their toys to start off. Then another day give them some medication and see if there is a change.
20:54 TAKE A FRIEND OR A PROFESSIONAL TO MEETINGS
What about were there any professional mistakes as well, or you know people that you should have engaged with or brought in or that type of thing? So because you're obviously very skilled and have a lot of knowledge.
When I’m wearing my professional hat yes. When I’m wearing my grammy hat not so much. Well then my professional hat absolutely informs my grammy hat. So I do know never to go to a meeting on my own when it's about Luca. Always have an advocate with me even if it's just a friend, because professionals behave differently when someone else is in the room. Interesting. And often I’m in a really, almost back of my brain space, emotional space, when I’m in those meetings. I’m in an emotional space yes and I’m quite heightened so I don't always remember everything that's said. I can miss cue intention and I can draw inference that's not there. So I can walk away from a meeting thinking oh they were attacking Luca so much and they were attacking me and I can go away feeling really offended and they were making judgments on my parenting. Then my girlfriend will go what are you talking about? I just didn't come away with that. I heard them describe Luca's behaviour, I heard them describe the impact of Luca’s behaviour on the teachers, his peers and the environment. Then I heard them actually talk about some things that they'd like to put in place. I actually heard them being very supportive. Whereas I’d walked away going oh they think Luca's horrible and that he's always doing the wrong thing. He smashed a teacher's laptop and he ripped the pipe off the wall. He's not safe to have at school. Now all of those things are true. They did say those things but they weren't attacking me and nor were they attacking Luca. So it helps bring that balance. That then takes me out of that place of offence. That brings me back into the front of my head where I can actually see what's going on.
23:30 IF SCHOOL ISN’T SAFE FOR YOUR CHILD, WHAT SHOULD YOU DO?
So how do you respond to that if they say you know it's not safe to have him at school? That's what they say, where else do they go? So we need to work out what's my responsibility and what's your responsibility as in the education department. You have a duty of care to educate him so how are we going to partner in this. So we've got a third partner. For us we have got the school as a partner. We're a partner and then we have his NDIS team that are a partner. Because of his complex diagnoses he's eligible for the NDIS. However, the NDIS doesn't do anything that the education department needs to do, but their still a partner in his care. So the way we have managed through this is now Luca goes from school from nine to one, because that's what he, because of his disability, can manage in a mainstream school. He is not eligible at the moment for a special school setting and we need to provide care for him in the afternoon. However, the reason he can't go to school in the afternoon is because of his disability and the NDIS funds disability related needs. So we actually have a carer who collects him from school at one o'clock yes and has him until 5:30 every day. Pete and I both work and we have to work. So then his speechy and his behaviour therapist have worked in partnership with us to provide a rich curriculum of disability related skill development activities in the afternoon. It's perfect, but it's perfect now, it has taken four years of appeals as a professional understanding the system to get those needs met.
25:54
So what are the tips for working with schools? What are some other things that people can do?
So it's find an advocate who can come with you and can attend meetings with you. Provide every piece of documentation you have about your child. Every place, every piece of information, don't hold back. Let them know everything that is happening, it's critical.
It's like between you and me and the brick wall, we did bust Luca on porn on his iPad. Yeah 13 you know. But what we've seen, was we'd seen was a whole lot of really wobbly behaviour. Disregulated behaviour, increases in anxiety, secretive behaviour going on, doors being closed, erasing the cache on the iPad and the computer and we kind of went oh, we reckon we've got family zone and we're right but we actually need to look at this. And I actually busted him. So we actually went to school and said this is what's been happening and let them know his escalated behaviour and anxiety was around the trauma he was experiencing due to watching porn. So letting them know that. They then did a bit of fishing around on computers and checked their settings as well. It may be that he was pretty clever to get into parental controls and turn some of them off.
And my husband runs Jim's IT. Like he's an IT guru and you can still manage to work out how to get around those settings at school and at home. That's the thing they're always kind of going to be a little bit ahead of us right because that's what they do.
28:10 SCHOOL ITEMS AND DEMAND AVOIDANCE AND WHEN THEN
The other thing to do is write down a list of the things that you use at home that work. So what sort of things would you bring? So when something occurs, talk to Luca using first and then. So first you need to complete this piece of work then you can like go for a movement break. The other thing he really responds well to are the rules are, because he likes to argue and one of Luca’s biggest obsessions is avoiding demands put on him. That's one of his biggest obsessions. Work out a way to avoid a demand and a way that he avoids demands is to argue and debate. That's one of his obsessions is getting people to get into an argument and a debate. I think there's a little bit of me in that! He will hook you into an argument and he he's a bush lawyer. He will say last Tuesday at 11:15, in line three you actually said to me that it would be a possibility that you would allow me to have youtube if I completed my work. I have completed my work and you're not allowing me to have youtube and you said I could. So how do you manage that? And the teacher will say I did actually say that? Yes you did at 11:15 you said that. I think I said it was a possibility. Well a possibility means it's possible. Here I am I’ve completed my work so why is that not a possibility? Because the rule is if everybody in class hasn't completed their work nobody gets youtube and that is the rule. So you ignore all of the froth and bubble and you go back to the rule. For demand avoidant children rules are really important as long as they are clearly administered. First this then that. First this then that. When we've completed that task then we can do this. When you have put your school bag in your room then you may have a snack. When you have completed your homework then you may watch TV. When you've actually put your pile of washing that's on your bed, that I have folded neatly, into your cupboard then you may go on the PS4. You're actually reminding me of when our children were small and I was saying we need to flip our language. We used to say if you eat your dinner then you can have ice cream and we flipped it to when you eat your dinner then we will have ice cream. Language is such an important thing isn't it.
31:28 DON’T SAY PLEASE SAY THANKYOU
Another thing that I find is really important is not to say please. I know that sounds crazy. Yes tell me why? Especially women to a boy. Why is that? Because it comes out as whinging and begging. Please do what I’ve asked you to do. So it's from this real place of emotional disempowerment and you've gone into almost like a kid begging place, rather than I’m an adult. I’m the benevolent dictator in this space so I kindly dictate the boundaries and right now I want you to go and put your bag in your room thank you. Yes actually I did something right today. Can you get me the washing from your room thank you. I’ve got a 16 year old boy! So I did that right today that's good and it worked so maybe that's the difference. It actually worked today. It doesn't always work so maybe I’ve used please instead of thank you.
32:46 DON’T ASK QUESTIONS, GIVE AN INSTRUCTION
The other thing is don't ask a question. Give an instruction. Do you want to go and get ready for bed now doesn't work. Then you go I said go and get ready for bed. No you did not you asked me if I wanted to. You say you're always going to respect me. And then it's like yeah I didn't actually respect your answer, correct. And that can lead to lots and lots of power struggles, especially with poppies (with grandpas). You know that power struggle with men with the whole alpha male thing that just naturally happens. That testosterone that goes on with a big man or traditional kind of parenting. Not necessarily embracing what they need from a trauma perspective. Correct that sort of thing. I see it all of the time. It's do you want to go and get your pajamas and then I told you. It's that really authoritarian framework. Rather than that authoritative framework. The authoritative framework is the trauma informed, being very clear on what you require and why you require it to happen. Being convinced that you're using leading practice in the approach that you're taking so then you can say I want you to go and get your shoes on now, thank you. But you're saying that with kindness and care and compassion too right? You can see that in your eyes in your manner. So it's not go and get your shoes on now. I want you to go and get your shoes on now thank you.
34:56 TAKE BREAKS AND HAVE RESPITE, IT’S NOT A FAILURE
Are there some other common kind of mistakes parents or carers can make in trying to manage behaviour. So tell me about those because you've just got such great insight into that.
Mistakes that we make is not insisting on having respite. We think if I need a break he's a failure. I’ve got to tell you about the first time we had respite. We had two hours of respite, our first. So we were like, we decided we would go out for dinner. So respite was six till eight. So we went out for dinner, we ordered, we ate and then by 6:20 we were sitting there going okay what do we do? It feels like that doesn't it when you feel like you're really breathing. So I would say it's probably taken us five years. I’m being really honest about the time frame to relax into having respite. And now once a month we get respite. He goes to school on a Friday morning and he comes back to us on a Sunday night. That's great! We did try him coming back to us on a Monday afternoon. That was actually too much for him. So we go Friday morning, he goes to school and he comes back Sunday at five o'clock. Great good on you. We've actually relaxed into it and we look forward to it and we enjoy it now. It took five years for us to get to that point.
Do you use the same people every time or do you have a couple of people?
We have, well look I’m a bit spoiled because I use my employees and I have built a team of 24 therapy assistant support workers that I have employed and I have trained. I pick the cream of those to care for Luca. Brilliant. Confident yeah. I’ve got five workers that we spread over all of his support. If I employ a new staff member they do a shadow shift with Luca with one of Lucas carers and I see what they're like. That's actually how we decide whether we're going to employ them or not. So we are in a pretty privileged situation there. But it's really about contacting a local agency and finding some good carers. I think that's a challenge with the cost and the challenge of finding the right people. But I would say eighty percent of kids in permanent care yes would have a diagnosable disability that is NDIS eligible. If you present your case in a way that shows the disability to the NDIS you do actually qualify for that level of funding. That might be a conversation for another time to talk about how you actually communicate effectively with the NDIS to actually show the gap between reasonable parental responsibility and disability related needs.
38:57 COMPENSATORY PARENTING
Other mistakes that you wanted to talk to other than respite? Compensatory parenting. Tell me more about that. I sound a bit guilty. I know it's not helpful but I still do it. So it's that space where grandparent meets parent. So that's where it actually doesn't matter what I do I cannot fill the hole that Luca's parents have left in his psyche, in his heart, and his spirit in who he is. That will always be there. It'll always be there but I do try to plug the hole with things. Not with food. Maybe sometimes with too much takeaway. But more with lego, xbox, iPad, youtube, Netflix, lego. Did I mention lego? You mentioned lego! You could probably get away with a box that big. The bigger ones he will reuse them and redo with a new design. Well that's good he loves lego.
One of the things that Luca is most happy with is a packet of pipe cleaners and some gaffer tape. Perfect. Creative is his happy space. He loves finding bits of junk and cardboard and metal and he just scabs everything from everywhere and he likes repurposing it. But that actually does Pete's head in. Pete wants to buy him the you beaut electronics kit and the tinker crates that get delivered every week that have all of the right bits that are neat and tidy. And Luca doesn't want those. Great it's cheaper! But we still, you have that propensity to try and fill that hole, and to do that compensatory parenting. That is a big mistake that we can fall into. Then he actually does develop that entitled attitude. And so we actually create that entitled attitude by doing the compensatory parenting. I think I’ve done a bit of that with animals. Your having an operation tomorrow here's a rabbit. It's father's day here have new lego to fill the gap that you are going to feel when everybody's talking about father's day and you don't see your father and your father doesn't see you. You have lego yes and KFC and Maccas and Pizza Hut and you know $50 on your roblox account ad and $50 on your itunes card.
42:40 COMPENSATE BUT NAME THE PROCESS
So to flip that question, what should we be doing instead of that compensatory parenting you know when things are a little bit more emotional?
I think we can still compensate but we name it for what it is. Just say I’m your grammy and I feel so sad for you today because I know your heart. I know my heart is breaking. My heart's breaking because I don't have a relationship with my son, because I have made a decision to look after you because he actually wasn't able to. So my heart's breaking for you because you don't have a relationship with your dad and for me because I don't have a relationship with your dad. I want to buy you lots of gifts yes to help make us feel better so rather than buying you a huge gift I’m just going to buy you a little one and let's do that together and see if we can fill each other's cups. I think not explaining the process and what you're talking about there is building your relationship which might fill the hole, that little bit more because you've been able to be honest about it and talk about it. And you'll have a shared experience. I’ve actually got a hole too. Yesterday was really hard for me because I feel sad for you that you're not with your dad. I’m really sad about that and I can only imagine what it might feel like for you. Then that opens up this amazing space for a potential conversation. It offers us an opportunity to safely explore feelings because you've been vulnerable and authentic as well very true. Inside I’m thinking your father, I could rip him a new one, but I actually feel sad. Just by being able to sit with the discomfort of those feelings for myself rather than actually either eating those feelings by buying special food on that day or by filling that hole by buying gifts.
