Aggressive. Manipulative. Lazy...?" Why We're Getting FASD Behaviour Wrong

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Welcome to Early Intervention Matters, a podcast that helps parents, teachers and health professionals understand the diagnosis, treatment, care and support of children with autism, ADHD, threats, and other neurodevelopmental challenges.
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By sharing stories from parents and professionals in the field, we hope to make sense of what can be an overwhelming topic.
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Early intervention is crucial for children with developmental difficulties.
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Yes.
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Early intervention matters.
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And now here's your host, Dr.
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Inyan Tagon.
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Aggressive, manipulative, lazy, unwilling.
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Those are the words children with FASD hear about themselves.
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And today Antonia is going to tell us why almost every one of those words is wrong for the children.
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I'm so pleased today to have someone who is an expert working with children with FASD and behavioral differences, someone who has worked to understand the behavioral differences in children with FASD and has used a different approach with trying to understand the children.
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We connected on LinkedIn.
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And the minute she told me she worked with FASD in an African an Afrocentric population in America, I was onto her like glue.
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And we haven't stopped chatting since then.
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So I am so pleased to have this lovely, lovely lady who has agreed to come and share her experience with us.
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Welcome, Antonia.
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I'm so pleased to have you on Early Intervention Matters podcast.
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I'd like for you to introduce yourself and tell our audience about yourself.
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Thank you.
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Thank you so much, Dr.
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Takong.
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I'm honored to be here with your audience.
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And your producer asked me to say why I'm moving my hands all the time.
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And part of it is I forget that I do it because I can speak, but I'm deafened.
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I'm like deafened.
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I live with a genetic disorder that took away my hearing and left vestibular symptoms.
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And as part of that, I adapted by learning how to sign at a doctor.
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We I lived where I was a clinician and working.
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We lived where there was still a deaf school.
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And he said, You're losing your hearing.
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You should go and you should learn sign language.
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And he was right.
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It was incredibly helpful because I was losing ability to use, I couldn't dance with my legs anymore, so at least I could dance with my hands.
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And for me, it was compensating and it was learning to adapt.
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And the reason I say this is because I have worked my whole career with children with fetal alcohol spectrum disorders and other prenatal neurotoxin effects, drugs, fetal hydantine, toluene, all kinds of neurotoxins.
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And what we see is that when the body is changed, living in a very different neurophysiology, we can still adapt.
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We can still adapt and we can overcome and we can cope.
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And being able to bring that about is based on our strengths.
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And so many times, you know, I so much appreciate being a guest on this show.
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And the fact that you opened you opened the conversation talking about manipulation, aggression, the stereotypes people have of what we see in terms of symptoms.
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And today we'll talk about what's going on in the body that makes it very hard for kids with neurotoxin effects to handle daily stress threshold the same way as we might expect for their age.
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Because really what we're dealing with is an unevenness of stages in terms of how their bodies are metabolizing the surrounding environment at home or at school.
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And living in a very different body myself, I had a the good news and bad news about that is that I'm very, very visual and I was trained as an art therapist and then became a family therapist and disability specialist.
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And because of that, I worked from a habilitative perspective.
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Instead of trying to extinguish behavior, I worked at where is the neurological functioning, and then what do we do to support the strengths and find workarounds so that the child can preserve functioning as best they can, given that they have a different stressful threshold in the body than other children do.
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And how can we build on the best?
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How can we build on their strengths and capacities?
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And so doing that from a visual perspective, I was a little bit uh I was in a frail body, but but with a brain that's a little bit like an x-ray machine, and I wouldn't notice, I would notice subtle signs about how they were moving or their facial expression, whether they were holding their breath or not, things like that.
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So we'll talk a lot about reading the body before we get to how to put that into words with a kid and how to go back and forth and exchange information with them.
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Because what I found was that the more struggle they had physically, the less their words worked.
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They might be able to talk the hind leg off a dog about certain things, but they're they had a lot of difficulty with interoception, the ability to read what was happening in their system and signal somebody that they were in distress, that they were stuck or getting overwhelmed or getting overstimulated or over excited, and they had no way to know that adults couldn't read them very well.
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They didn't have any way to flag anybody and say, I'm stuck over here, I'm having a bristle attack like a porcupine, I'm coming unclued.
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They had no way to signal that to anybody, and so we'd see meltdowns and implosions and explosions that weren't just tantrums, they were more like episodes, prolonged, not typical tantrums that you know a child of age four could could get upset with somebody and have a hissy fit and then kind of get over it inside of 20 minutes, 10 to 20 minutes.
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These children didn't have that kind of casting.
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When they got stuck, they got really stuck and they couldn't unstick themselves very easily.
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And that's where my work came into the picture.
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Thank you so much.
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I love your description and it just resonates a lot with, you know, when I see the children in the clinic.
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It just resonates with what is being described to me by families, is that you know, when they go, you know, it's it's almost it's almost like it's so difficult to get them back, but they just cannot express to people why, you know, what is really going on with them.
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They're really they're stuck.
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Yeah, so it does.
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And just I think I like that phrase that he used that people should understand that when they get stuck, you know, these behaviors can just go, and it's how we deal with the situations because sometimes the responses by the adults around them could make that worse.
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And I think that's what you've seen as well, depending on, you know, it's the reactions.
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Well, as you're saying, the thing is that I I had the good fortune of working in different communities.
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I was invited to participate in an Afrocentric treatment program to provide the mental health support alongside of all of the recovery work that was happening with pregnant and postpartum moms who were reuniting with their older children and having babies and and taking back their families.
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We were, it was a family reunification effort.
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We were trying to keep families together.
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And it was run, it was a minority program, and it was very strange to to, you know, why they would want someone who looks like me to be part of an Afrocentric treatment program.
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You wouldn't, you normally have someone like me there necessarily.
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And I'm the mother of I'm the mother of a native child.
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And the women in the program were they were they were African American, they were Latina, they were native, they were they were everyone from everywhere, but but but the model was Afrocentric.
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In order to address trauma that had happened in these communities and to to build on the strengths of families.
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These were matriarchal families, not typical, these were matriarchal families.
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The person most important in these families was the brother of the mom, not necessarily the father of the child.
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It depended on the family system and being sensitive to these to these needs.
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It was very important for me to be a learner there and for me to understand what the moms wanted with the children, and to be able to find a way to help them reconnect in terms of the child's authenticity and in terms of attunement and attachment for the parents.
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And there were so many ways in which the family was was working hard to stay together.
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The grandmothers were helping, the aunties were helping, everybody was in there helping, you know, but the children were were a little tough to read because as you said, the children would get stuck.
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And and and moms would be trying to have their child calm down.
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So they'd they might admonish the child and they might try and calm them.
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And the children, the children would would, I use the image of a porcupine because I learned that from a child, that his system, it was it was an Ojibwe boy, and his system functioned a little bit like a porcupine.
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He'd get bristle attacks when when stimulation was too much for him, his whole body would just be at threshold from sounds and visual input and people near him, too much noise, all kinds of things that were part of the routine environment and that other children could adjust to, but he couldn't adjust to it.
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For him, it was like being in a waterfall of stimulation that he couldn't exit.
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So he it was just having a thundering load of input and he'd fatigue.
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And when he'd fatigue, he'd either explode, have bristles, he'd get bristle attack like a porcupine instead of a puppy.
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Mom wanted him to calm down like a puppy.
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She couldn't, she couldn't just say, no, do this, do this, calm down.
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It didn't happen.
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And he'd when he had that going on inside his body, his face became very stony, like a child with autism.
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The more overstimulated he was, the less expressive language he had, and the less he could signal anybody that he was stuck.
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He'd become gay subversive, he couldn't look people in the eye.
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And his mother, I mean, in Africa in the African American community where I was, the moms had a great technique that they'd learned from their grandmas, and it was the look.
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It was the look we know the African look.
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And the look says, now now, now now, don't cross me.
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I'm I'm the boss here.
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You need to pay attention, you need to settle down.
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It was very effective for many children, but it didn't register with kids with this kind of condition, and so they get the look and they wouldn't look, they wouldn't meet the eyes.
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And moms would feel very disrespected by that.
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And it was hard because they were trying to say, tune in to me, because I have to give you information, I have to give you instruction.
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And so it was perplexing to them and just and it's unnerving and unsettling to them.
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The moms felt sometimes disrespected, or you know, I'm the mom, why won't he accept my guidance?
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Why won't he?
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I'm trying to raise him right, you know, and we can totally understand that.
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Add upon that the fact that people who had looked like me out in their school system or wherever they'd grown up had been judging them if their child wiggled too much, had been making assumptions about the family that were racist and oppressive and terrible.
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And moms felt truly, truly cornered by the court.
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I have to make my I have to get my child back.
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I have to make him behave.
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I have to prove I'm a good mom.
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I, you know, I'm I'm really I'm really under the spotlight here, and this is hard.
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And you know you can appreciate that because I mean, look at what the system was doing.
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It was saying, you're on your last chance here.
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I mean, what a what a bind.
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And nobody was acknowledging the trauma history that had been intergenerational in the family.
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Yeah.
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So I think ways to both calm and organize a child who was a little hard to read, yes, heal from the fact that people were scrutinizing their every move in a system that was stacked against them to begin with.
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So I'm just going to go a bit backwards because some of our audience may not be familiar with FASD because it's still a very under-recognized condition, neurodevelopmental condition.
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It's still something that we're trying our very best to keep raising awareness because we feel that there's so many that are not recognized or identified or diagnosed.
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So, Forbert, would you like to tell our audience about FASD, just defining it and what happens in FASD?
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Fetal alcohol spectrum disorders are directly the result of alcohol exposure during pregnancy.
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And because of the alcohol, which is a solvent, as we know, it's used in laboratories to sterilize surfaces.
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It kills things.
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And what it does in the neuronal progression of development of a fetus when a child when a child is in utero, is it stops and slows the proliferation of cell development that makes all the organs in the body, it makes the entire body.
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I mean, it affects the brain, it affects other organs, depending on on how much alcohol and when and where the dose is taken inside the pregnancy, it can affect, it can have it can have slight effects or it can have very, very dramatically severe effects on the neurophysiology of the developing baby.
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Yeah, thank you.
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So for our audience, um just like Antonia has described, fetal alcohol spectrum disorder is a result of prenatal alcohol exposure.
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That's one thing we are so sure of that that's what causes it.
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So there is a definite cause when it comes to FAST.
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It's the most preventable condition that causes intellectual disability and causes difficulties and disability.
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And as Antonia said, although we're looking at the brain, it can affect the body.
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Antonia has described what alcohol is, it kills, it kills cells.
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So if you can think about what alcohol can do to surfaces, think about what it can do to cells.
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Unfortunately, the fetus does not have a way of clearing the alcohol when the mother is exposed or take drinks alcohol during pregnancy.
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And so the alcohol which the mother takes just goes straight through the placenta to the fetus and then affects the brain.
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It affects the brain development.
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In the first few weeks of pregnancy, the first few months, you're having structural uh changes taking place, your brain is forming, and then the neuronal bits with dimension is the nerves continue to develop throughout the pregnancy.
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So if a mother takes alcohol and you know she continues to drink, then there continues to be damage going through.
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So unfortunately, we don't know how much, we can't talk about amount and how much is needed to cause the problems.
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We, especially in the UK, we say no alcohol during pregnancy because that is the only way that you can be sure that you are not at risk.
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And that message needs to go up because I a lot of mothers, many mothers, do not start the journey wanting to cause harm to their child.
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Many people have, unfortunately, you know, when they have drunk the alcohol, have not been aware that they were pregnant, they didn't know.
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So that's one thing.
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It's a sensitive area we need to be sensitive with mothers because many of them did not set out to drink, many of them have been victims of situations where they found themselves drinking and didn't realize when they were pregnant.
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So we need to look at a supportive way of supporting the mothers and helping people understand what happens to those infants when they're born at their at risk.
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And for some of them, people may not have even diagnosed the children with FAS.
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It's only when you dig deeper into the history and then you find out what would have happened.
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And as Antonia has said, some of the mothers have experienced a lot of trauma, and from things like trauma can lead people to drinking and taking substances, and then so we we need to understand what happens.
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So the children can have developmental delay.
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Sometimes the babies come out looking fine, and people think there's nothing wrong, and then the development goes on.
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People think, oh, they're fine, they're doing okay, but the behavioral and the emotional bits is one of the big, big things that can happen for people who don't understand, would just think it's just behavior.
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When I started, I said aggressive, manipulative, the names that the children have carried for so long, names that have been given to them by other people, by schools, by people who don't really know about their brain biology and what's happening.
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And that's why um it's so important to understand this.
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One of the things that made me bring Antonia on as well was that the conventional way of people looking at behaviors in children does not work for children with FASD.
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And uh we will be talking about some of this as well, Antonia.
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So, what got you interested in working in this field?
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Well, I was I was trained as an art therapist, and I came into the field of art therapy working with children who'd been sexually abused and trafficked human, who they'd been referred by the police department because they'd been children who had been identified as having been subjected to pornography and they'd been violated.
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And I was invited by a trauma-focused therapist who was not an art therapist, but knew about art therapy, and she noticed that many children who had been traumatized had difficulty explaining what was happening in their in their experience.
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They they would become, they had what they called wordless terror.
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They would become stuck and unable to sometimes they'd be swallowing, they'd they'd they their breath would catch, they they would become sort of frozen in remembering things that had happened to them, and they couldn't speak about it very easily.
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And so she felt it would be helpful to these children to use art in the recovery group that she ran for them.
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And I was invited to come and help with that.
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And so that's how I got into the field of art therapy, and then from there I I quickly began to work in mental health and addiction.
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With families who were recovering from trauma histories and where alcohol and drugs had been part of how they'd tried to reconcile trauma.
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It's a very cheap drug, you know.
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I mean, to go and have a drink is a very cheap medication compared to the stigma of, oh, go and try and find a psychiatrist or try and find a therapist and things like that.
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And many and many families are of the belief that, well, especially in those days, that only people with hospital-level psychiatric problems who go into asylums or are in hospital-based programs, those are serious illnesses.
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But the rest of this is just hardships in life.
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And you go down to your corner pub and and you try and change your thoughts by having a drink at happy hour with people and this and that.
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And so families are families are subjected to the same messages by the alcohol industry that we all are, which is that it's a fun, sexy thing to do in a way to relax.
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And then some families are not just dealing with that.
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They're dealing with with history of hurt and loss and hardship, for which that's both a temporary medication, but ultimately a poison, and they get stuck there and they have a hard time unsticking themselves.
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And then things begin to unravel in the family because of it.
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There are hardships in the marriage, there are hardships for the children.
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And so I was dealing with that when I discovered that, in fact, this wasn't just about the postnatal environment.
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There were kids who were functioning very differently because of what had happened to them, because of the prenatal exposure to the neurotoxin as well.
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And that's when it really hit home to me.
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These families are needing very different supports.
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And because in training as an art therapist, we deal with stroke rehab, we deal with dementia, we deal with a habilitative orientation towards supporting people whose bodies are functioning differently because of medical conditions, because of brain trauma, many things.
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And so it was very natural for me to say, well, wait a minute, if this is prenatal exposure and it's caused brain injury, we don't have a baseline to go back to because the child we couldn't see what that would be like without the alcohol exposure or the neurotoxin.
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So what we're doing really is we're looking at a closed-head injury scenario for a child who's born with a diffuse closed head injury profile, who have subtle differences in how in how they're relating.
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And we if we look at the information, for example, the Lewis Protocol, which looks at postnatal neonatal abstinence syndrome and withdrawal symptoms in neonates.
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What we see in little babies is that they can have differences in in how they feed.
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They can have weak suck.
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So they don't latch as easily when you're trying to nurse them.
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They have uh altered tone, they are hypotonic, they have slack tone in their entire body, and so they're they're either kind of white, come, they come out kind of wired and and skittish and very tight, hypertonic, or very low-tone.
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And so, so it's a little bit like raising babies who are either completely shrieking and inconsolable and very stiff or kind of limp and overly relaxed, like a stewing chicken, where it's it's hard, it's hard to find a middle ground with them to be able to do the sorts of things we do with young infants to help them organize their movements towards the midline, to be able to focus on the parent, to be able to habituate to stimulation in the environment and to modulate their physical responses to it.
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So we begin to see those things early on.
00:26:10.079 --> 00:26:17.039
And even early on, parents were dealing with things like their shrieking.
00:26:17.200 --> 00:26:31.599
They would go, the little children we saw in the in the program I was in, the alphacentric treatment program, the little kids would go from totally asleep to waking and shrieking like a car alarm.
00:26:31.839 --> 00:26:40.079
It wasn't a typical cry with the typical ebb and crest of a plaintive sound slowly building to desperation.
00:26:40.240 --> 00:26:48.319
It was like a car alarm that would go off and a cry that had unusual sound parameters to it.
00:26:48.400 --> 00:26:50.079
They call it a neurocry.
00:26:50.480 --> 00:27:00.720
And any foster parent or adoptive parent or biologic parent who's been up against that kind of shrieking, the little children are really, really, really suffering.
00:27:00.799 --> 00:27:04.559
And they go from they grow from zero to 60 miles an hour.
00:27:04.720 --> 00:27:12.240
And then they don't, it's it's hard to get them that it's hard to get them dialed in enough to be able to feed and to nourish them.
00:27:12.400 --> 00:27:28.480
And so parents, families were dealing with these kinds of things that required a multidisciplinary team, and I was part of that team to try and find solutions for babies who couldn't calm easily or who fell asleep and couldn't rouse easily.
00:27:28.640 --> 00:27:43.119
And so the window of interaction between them and their mothers and their siblings was was tighter and needed different strategies for how to bring them in alignment with one another.
00:27:43.359 --> 00:27:44.960
It was it was difficult that way.
00:27:45.119 --> 00:28:01.519
And then as they were older, by the time they're three and four years old, people were saying things like manipulative or aggressive because they they didn't signal other people what their needs were the way we would expect when speech comes online.
00:28:02.640 --> 00:28:03.200
Thank you.
00:28:03.440 --> 00:28:30.720
And just for our audience, what Antonia has been talking about is um, you know, experience with babies who have been exposed to maybe maternal drug use during pregnancy, when those babies come out, they usually have something we call neonatal abstinence syndrome, um, where they get very irritable, almost shrieky cry, like Antonia described.
00:28:30.799 --> 00:28:35.440
They're almost like when you touch them, they're very um, very irritable.
00:28:36.319 --> 00:28:37.680
And they they the cry.
00:28:37.839 --> 00:28:51.359
Antonia took me back to my neonatology days when I worked in the in the woods with with the babies who would be crying significantly, and that cry would be quite a loud, shriek cry.
00:28:51.519 --> 00:29:00.160
So the babies are unsettled, and so you can imagine a baby who is unsettled continuously, and what that sounds like.
00:29:00.319 --> 00:29:22.960
So the children who are exposed to alcohol, maternal alcohol, sometimes could have such presentations, and for us to remember that sometimes babies, children could have been exposed to more than one thing, sometimes the norm the women were using, and that's what tends to happen a lot of the times, is that they're exposed to both a lot of the time.
00:29:23.200 --> 00:29:28.799
So, um, so they they've had quite a rough start to life if we think about it.
00:29:29.039 --> 00:29:42.400
They've had a very, very rough start to life, and for many of them, the journey is up and down, so it usually is not easy for them or their parents as well, who have had to go through sometimes.
00:29:42.559 --> 00:29:47.680
The parents have been through very difficult situations as well in in looking after them.
00:29:47.920 --> 00:29:51.119
It's it can get quite difficult, and it's not uncommon.
00:29:51.279 --> 00:29:57.839
So sometimes when we talk about fetal alcohol spectrum disorder, sometimes people think it is uncommon.
00:29:58.000 --> 00:30:04.400
No, it's not uncommon, it's just that we've got the same in England as well, in the United Kingdom.
00:30:04.640 --> 00:30:08.559
We have so many, we have children who have not been diagnosed.
00:30:08.799 --> 00:30:46.400
Not because the condition isn't there, but we do not have the services, they are not there to support the children, and the services there, we're still going on with the awareness for clinicians and other people to recognize the children, to recognize, to look and ask the question about exposure to maternal alcohol and look at the profile of the children, so that once we identify them and we begin to intervene early, then we actually, you know, step in before all those behaviors become very protracted.
00:30:46.480 --> 00:30:50.799
I don't know what you think, Antonia, about that, about the earlier.
00:30:51.759 --> 00:30:55.039
What I find is early intervention is crucial.
00:30:55.200 --> 00:31:04.160
And even with early intervention, the thing that's so hard for the families is that they're hoping the child is going to grow out of it.
00:31:04.319 --> 00:31:19.920
And yet, what I saw, because I followed the children from their birth families on into sometimes those families were united and they could stay together, and other times the children were adopted out, and then I followed them in into foster care and adoption.
00:31:20.000 --> 00:31:22.720
I followed the children wherever we found them.
00:31:22.880 --> 00:31:24.160
I found I followed them.
00:31:24.319 --> 00:31:50.720
And we and what we we saw was that when it when you start out with a neurophysiology that's touchy, like a little touchy carlon, or like that that porcupine kind of problem, where they have a central nervous system that's more fragile, that's more vulnerable either to spikes of agitation or to folding and collapsing in response to stress threshold.
00:31:51.039 --> 00:31:54.240
Collapsers and the bristlers, you know.
00:31:56.079 --> 00:32:09.440
That tendency, that vulnerability, we call it a diathesis in the body, a vulnerability that makes that body different to in relation to daily stressors.
00:32:09.599 --> 00:32:16.000
And it doesn't seem to change over the course, it stays there throughout the course of one's life.
00:32:16.160 --> 00:32:25.440
It's it's a difference, it's a vulnerability in the body, and managing stress threshold and learning how to kind of map out what the supports are.
00:32:26.000 --> 00:32:40.240
If if you imagine that a child with asthma has always wheezed, and if that's just what it was like to intake and exhale, they don't know that's wheezing.
00:32:40.720 --> 00:32:42.559
To them, that's what breathing is.
00:32:42.720 --> 00:32:46.400
It's just how that's breathing because that's all they've ever known.
00:32:46.640 --> 00:32:59.839
And it's much the same with someone who has a different stress threshold for sound and noise and tactile stimulation and movement stimulation, who is like a touchy car alarm.
00:33:00.000 --> 00:33:05.920
Their body has always been that way, it can never exit that thundering waterfall of stimulation.
00:33:06.079 --> 00:33:08.880
So that's just life in the body to them.
00:33:09.200 --> 00:33:15.200
And they don't know that it's not that way for you or for me or for another adult.
00:33:15.359 --> 00:33:31.200
If an adult knows when they're supposed to wake up, when they're supposed to go to the bathroom, when they're supposed to eat their breakfast, when they're supposed to go to school, how can they not know when they have headaches from that, when they have fatigue from that?
00:33:31.519 --> 00:33:34.480
How can they not know that the child is in distress?
00:33:34.640 --> 00:33:46.079
Well, the child isn't showing signals that hail us to say, you know, we're looking at brain and behavior often instead of the lungs.
00:33:46.319 --> 00:33:53.039
Now, if we if we hear the lungs wheezing, we suspect, okay, that's asthma, we get the child to the pediatrician.
00:33:53.200 --> 00:33:54.720
With the brain, it's a little harder.
00:33:54.799 --> 00:33:59.920
With behavior, it's a little harder because we're looking at what do most children typically do.
00:34:00.000 --> 00:34:14.159
And many of these kids can do a lot of the things typical kids can do for part of the time, but then for some reason, in the course of a routine day, things get stuck.
00:34:14.400 --> 00:34:18.480
They get stuck, and when they get stuck, they don't get back on track easily.
00:34:18.719 --> 00:34:22.159
We talked a minute ago about the episodes.
00:34:22.480 --> 00:34:44.880
What looks like more tantrums than other kids, but it's actually episodes of that of that rigidity in their in their difficulty-changing mental set from one activity to the next, or transitioning from one set of stimulation, like let's say they go, they take a bus to go to school.
00:34:45.199 --> 00:35:24.639
They'll have trouble, they may have trouble leaving the house and getting on the bus, and then the bus is making a lot of loud sounds, and by the time they get to school, they're absolutely overwhelmed with the level of sound they've had, and then they have to change environments again and go into a classroom, and there's all this noise in a classroom, and but by the time they get there, they're trying to figure out where to put their their coat and their backpack, and someone comes too close of them, and they reach out and they strike the other child because they're misreading the fact that the other child is close for something that's a threat.
00:35:24.880 --> 00:35:38.880
Their brain is reading the extra stimulation and already alarmed and alerted and beginning to be to have defensive behavior instead of brokering it with words and saying, Hey, what are you doing?
00:35:39.199 --> 00:35:47.360
They're wordless and they're and their hands are coming out, or they're striking the other child, or they're pushing the other child because their language is offline.
00:35:47.599 --> 00:35:50.960
The more stimulated they are, the less they can use their language.
00:35:51.199 --> 00:35:52.159
Things like that.
00:35:52.320 --> 00:35:56.000
And that behavior is going to look, that's where you know they earn that label.
00:35:56.159 --> 00:35:57.599
Oh, he looks aggressive.
00:35:58.159 --> 00:36:06.800
Well, he might be overly defensive or on offense because he doesn't broker it with speech like other kids, even though he can speak.
00:36:06.960 --> 00:36:08.719
You ask him, What do you want to eat?
00:36:08.960 --> 00:36:13.039
That he points to toast, that he points to cereal.
00:36:13.599 --> 00:36:18.639
But he's not using speech in the same way other speaking kids are using speech.
00:36:19.199 --> 00:36:24.639
And when he's overstimulated, it's compressed or it's offline.
00:36:25.119 --> 00:36:30.400
Or or he has subtle speech and language difficulties like circumlocution.
00:36:30.559 --> 00:36:36.639
He's talking all around the plate, but can't get to the point, don't do that, please do this instead.
00:36:37.119 --> 00:36:39.360
He can't identify what to do instead.
00:36:39.519 --> 00:36:47.440
And so then things are going physical when they need to be brokered in words, and people are very confused by that because they've taught the kids social skills.
00:36:47.519 --> 00:36:59.280
They say, Here's the polite behavior, and the child will nod like this or register, okay, I hear you talking, but not necessarily know how know how to operationalize the words they just heard.
00:36:59.599 --> 00:37:00.320
When they need it.
00:37:00.719 --> 00:37:03.679
If you say, here's the rule, what's the rule?
00:37:03.840 --> 00:37:05.599
The child can echo back the rule.
00:37:05.760 --> 00:37:10.559
If you say, show me the rule, the child may not be able to tell you or show you.
00:37:10.719 --> 00:37:15.920
They may be able to say it, but not be able to put into operation what it means.
00:37:16.400 --> 00:37:18.239
And that's very perplexing.
00:37:18.800 --> 00:37:20.960
That's very perplexing for adults.
00:37:21.599 --> 00:37:22.880
What could cause that?
00:37:23.039 --> 00:37:24.400
Why is that happening?
00:37:24.559 --> 00:37:27.039
We just explain it, we just talked it through.
00:37:27.199 --> 00:37:28.800
Why can't he do it?
00:37:30.159 --> 00:37:39.760
You know, and have a child who's four or five who's learned polite, courteous behaviors, wait in line, wait your turn, but then they can't do it.
00:37:39.840 --> 00:37:45.840
They're turning around and they're batting someone next to them, or they're fidgeting in line.
00:37:46.000 --> 00:37:49.199
And other people are saying, keep your hands to yourself.
00:37:49.440 --> 00:37:52.880
We don't touch other people in the line, we wait our turn.
00:37:53.039 --> 00:37:58.320
But you have a body whose primitive reflexes haven't integrated the way other children.
00:37:58.639 --> 00:38:00.320
They can't not fidget.
00:38:00.559 --> 00:38:07.199
They can't not need motor support or stimulation in order to calm and contain.
00:38:07.360 --> 00:38:12.960
They might need a heavy, they might need what I used to call a heavy helper, a heavy helper in their backpack.
00:38:13.119 --> 00:38:30.000
They might might need weight in their backpack to be able to calm and contain, to give their body some heavy work for the trunk and stability of their core in order to not bat people with their hands and arms or be touching the wall or touching another child.
00:38:30.159 --> 00:38:32.639
And those are counterintuitive kinds of things.
00:38:32.880 --> 00:38:42.000
Parents don't typically have strategies like that for a child that they can talk to and say, Do you understand me?
00:38:42.159 --> 00:38:44.079
But I thought we talked about the rule.
00:38:44.239 --> 00:38:49.760
You know, that's it's not a typical intervention for how to contain behavior.
00:38:50.000 --> 00:38:53.840
We would typically take and put the child in a timeout or things like that.
00:38:54.159 --> 00:39:14.719
Sometimes you take these children, you put them in a timeout, and they're kicking over the chair, or they're they're they're picking holes in the in the the wall, or they're, you know, they're more dysregulated and they can't calm because what their body's needing is different support in order to calm and recruit.
00:39:14.960 --> 00:39:20.400
And so it's not surprising that a lot of adults misunderstand their behaviors, isn't it?
00:39:21.920 --> 00:39:45.920
They've become progressively punished more and more when actually what they're experiencing are neurological gaps in the sequence of being able to calm and organize their behavior and find a proportionate fit between what the environment is demanding and what their body needs in order to be able to do that bite-sized chunk of skill.
00:39:46.079 --> 00:39:46.400
Yeah.
00:39:46.800 --> 00:39:52.480
So it's filling in gaps because they have very uneven performance.
00:39:52.639 --> 00:39:55.519
They be may be able to talk a blue streak.
00:39:56.719 --> 00:40:07.039
But then what do you do when they can't act upon it or they don't recall the sequence to act upon it in a way that's been agreed to.
00:40:07.920 --> 00:40:11.840
At home in school, it's very perplexing to families.
00:40:12.239 --> 00:40:26.239
And and I think this is one of the things where um the schools, when they don't understand why they come the children sometimes have this profile, they find it difficult to understand those behaviors.
00:40:26.559 --> 00:40:33.760
And sometimes they the children are just treated like any child with any behavioral difficulties, and they use the same approach.
00:40:33.920 --> 00:41:04.719
So you've talked about sometimes it would skip them back at school and say you're not having your break today, you're not having your lunch break today as a punishment for a child that actually needs the movements and needs movement and maybe needs heavy work, maybe needs to help the janitor push buckets or carry heavy things in order to feel helpful and to calm and reorganize because they need so much more input to the proprioceptive system than anyone would ever imagine.
00:41:04.880 --> 00:41:13.599
Some of the little kids need, I mean, we talked in an earlier conversation about the use of weighted blankets.
00:41:13.920 --> 00:41:23.679
Occupational therapists use weighted blankets with children who have disorganized proprioceptive and vestibular responses at times.
00:41:23.920 --> 00:41:35.760
They'll use increased proprioceptive load to help the child know where their arms and legs are in space and give them the kind of dose of stimulation and heavy work that they need.
00:41:36.000 --> 00:41:45.519
If you think for a minute about how, you know, how some people calm down by lifting weights or doing martial arts, kickboxing and things like that.
00:41:45.679 --> 00:41:51.920
That's what some people need in order to feel calm and organized and and and content.
00:41:52.079 --> 00:41:54.159
And other people need swimming.
00:41:54.400 --> 00:42:16.559
You know, they they they have different stimulation preferences, but all of that is information that's coming into the body in order to help the body be in the just right moment to be able to handle the dose of social stimulation that a person has to deal with, or back and forth one-to-one interaction that a person has to deal with.
00:42:16.880 --> 00:42:28.960
Because we all have we all have a little bit different neurochemistry and and neurophysiology in terms of how our brains read the world and how we interact with it.
00:42:29.039 --> 00:42:35.760
And these children just have a much more different neurophysiology than people expect because they look typical.
00:42:36.480 --> 00:42:39.920
They're very beautiful, sweet children.
00:42:40.559 --> 00:42:48.400
They're lovely, they're lovely, and they don't necessarily have a limb mail formation or something that would cue someone else on the outside.
00:42:48.559 --> 00:42:52.320
My body is different, it's not functioning like other bodies.
00:42:52.800 --> 00:42:57.519
Yeah, you know, so it's it's a little harder to read.
00:42:57.920 --> 00:43:10.480
It is, and that's why I think the education needs to go out, the awareness needs to be more, the uh people need to understand these behaviors, especially the schools.
00:43:10.559 --> 00:43:16.559
I feel that schools is one huge place where these children spend um a lot of time.
00:43:16.800 --> 00:43:27.039
So trying to make them fit into the curriculum that is existing is usually not helpful for them because it just causes um a lot of stress for them.
00:43:27.199 --> 00:43:35.440
Just like you've described, the more they get dysregulated, the more difficulties come up with their behavior, and then they can't learn.
00:43:35.519 --> 00:43:44.000
So we defeat the purpose of trying to keep them in a space and make them comply with the school rules and everything the school is doing.
00:43:44.159 --> 00:43:47.599
But their bodies, like you said, the neurophysiology is different.
00:43:47.840 --> 00:43:52.079
Until we can get their body back, we can't chain any other skill on.
00:43:52.239 --> 00:43:52.559
Yeah.
00:43:52.719 --> 00:43:59.360
When we can get their body back, for example, a little child, there was a little child who was.
00:44:00.480 --> 00:44:05.679
Between three and four years old, who uh who would who would bolt.
00:44:06.079 --> 00:44:09.360
Nobody wanted him to bolt from from the classroom.
00:44:09.519 --> 00:44:12.960
His mom didn't want him to bolt out into the street, but he would bolt.
00:44:13.039 --> 00:44:16.000
At the drop of a hat, someone would call him, he'd bolt.
00:44:16.239 --> 00:44:25.760
And what he was what he was really, he would get, he would get a kind of a little wild look in his in his eye, and then he would bolt.
00:44:25.920 --> 00:44:35.519
And because we were in the residential program of the hospital, and we had to be very concerned about children not eloping and getting out into the street.
00:44:35.679 --> 00:44:37.440
You know, there was traffic out there.
00:44:37.519 --> 00:44:38.480
It's dangerous.
00:44:38.719 --> 00:44:44.400
But this little boy, what he needed was he needed a lot of stimulation load.
00:44:44.559 --> 00:44:54.800
And he was one of those kids who was who was physically, he was a kinesthetic learner, he was really a physical learner, and he was absolutely darling, and he was strong.
00:44:55.039 --> 00:44:56.800
He was very, very strong.
00:44:57.039 --> 00:45:06.079
And this was both delightful and difficult for his mama because his mama wanted him to calm down and settle.
00:45:06.159 --> 00:45:10.000
And so she'd use a sharper tone with him to try and get his attention.
00:45:10.239 --> 00:45:16.079
Well, the minute he had hyperacusus, he had hyperacusis, he had oversensitivity to sound there with his ears.
00:45:16.159 --> 00:45:19.440
So the minute he'd hear that tone, he'd bolt even more.
00:45:19.599 --> 00:45:21.119
And so then the chase was on.
00:45:21.199 --> 00:45:22.400
It was very difficult.
00:45:22.639 --> 00:45:30.960
So one time I stopped him at the door, I managed to intercept him and I grabbed him and I lifted him up and I fastened him onto me.
00:45:31.519 --> 00:45:42.159
And he fastened on with his arms onto my arms and I supported his head, and then I flipped him down upside down and I began to bob him up and down.
00:45:42.320 --> 00:45:51.440
I began to bob him up and down because I at that time I still had mobility, and and so I bobbed him up and down, I bobbed him up and down.
00:45:52.159 --> 00:46:00.639
And what happened was I felt his body both latch on and I felt his his chest expand.
00:46:01.119 --> 00:46:08.960
And his face, when he looked at me, he got this wide look like this, and he broke into this big smile.
00:46:09.440 --> 00:46:11.519
And he was elated.
00:46:12.239 --> 00:46:13.199
He was elated.
00:46:13.519 --> 00:46:18.239
And so I bobbed him and I did about three to four minutes of bobbing him up down after.
00:46:18.320 --> 00:46:22.880
And then I took him and I put him down on the ground hard on his feet.
00:46:22.960 --> 00:46:31.199
And with me, we both got down in sort of a squat stance, you know, four arms on four arms, a squat stance like that.
00:46:32.079 --> 00:46:33.760
And I said, Let's jump.
00:46:34.000 --> 00:46:36.880
And we jumped, and we did ten hard jumps.
00:46:36.960 --> 00:46:38.480
I said, Let's break the floor.
00:46:38.719 --> 00:46:39.840
We broke the floor.
00:46:40.079 --> 00:46:44.320
Well, you can't break the floor, nothing can hurt anything by breaking the floor.
00:46:44.639 --> 00:46:50.719
But he needed that deep, deep jolt of information from the soles of his feet up through his spinal cord.
00:46:51.360 --> 00:46:53.039
And his face lit up.
00:46:53.840 --> 00:47:02.000
He was happy, he was attentive, he was calm and organized, and he was paying total attention.
00:47:02.880 --> 00:47:15.679
And I taught his mom that technique, and he began to seek it, and he stopped bolting from her, and he sought that stimulation, big stim load with his mama as an attachment game.
00:47:17.599 --> 00:47:22.639
And she began to understand that what he was was he was her little hulk.
00:47:23.119 --> 00:47:25.280
He would help her with all the heavy things.
00:47:25.519 --> 00:47:30.480
If she needed him to lift, she got his help, and he became her best helper.
00:47:30.800 --> 00:47:33.360
He became her best helper.
00:47:33.599 --> 00:47:36.719
And he be he was tender towards their new baby.
00:47:37.519 --> 00:47:41.119
He wanted to be a strong, helpful big brother.
00:47:41.599 --> 00:47:51.360
Now, this was the one who who had speech delays, and so he had been he had been putting his hands on other kids, pushing, shoving.
00:47:51.519 --> 00:47:56.079
He was trying to say, push me, bob with me, let's rough house.
00:47:56.719 --> 00:48:00.159
Trying to get the stimulation load he needed for his body.
00:48:02.320 --> 00:48:09.519
Because he didn't have words to be able to broker that to say, I need big squeeze and I need big stem.
00:48:10.320 --> 00:48:11.599
He didn't have a way to say it.
00:48:11.760 --> 00:48:17.360
The other thing was he had slack oral motor tone, and so his speech was hard to understand.
00:48:17.519 --> 00:48:22.000
He was speaking, he had language concepts, but he had articulation problems.
00:48:22.079 --> 00:48:30.719
And so the speech therapist came in and she said, okay, we'll do another game with him and his teachers and his mama.
00:48:31.039 --> 00:48:37.519
We'll have him take one of these rather round, slushy straws, they're short like that, cut them into little pieces.
00:48:37.599 --> 00:48:41.679
So they're kind of thick like this, and you vacuum up applesauce like that.
00:48:41.840 --> 00:48:45.679
And so he was doing oral motor work, but through play.
00:48:46.320 --> 00:48:48.079
Through play-based intervention.
00:48:48.239 --> 00:48:59.679
We were using play-based intervention to load the things that his body needed to be able to have workarounds for where things were harder for him.
00:49:00.079 --> 00:49:11.280
And it wasn't that speech was always going to be his first go-to, showing someone, moving heavy things, helping them physically was always going to be this little boy's forte.
00:49:11.840 --> 00:49:20.320
He was never going to be the kind of kid who necessarily is going to love to read out loud and love to do all that kind of thing.
00:49:20.400 --> 00:49:27.840
But if you needed a paramedic or a firefighter or someone to help build things, this was your guy.
00:49:28.159 --> 00:49:32.480
You know, he liked to do big work to help people.
00:49:32.719 --> 00:49:41.440
And I I saw that happen a lot where people would imagine, well, no, if if he can't, if he's if he's pushing another child, he must be terribly aggressive.
00:49:41.679 --> 00:49:43.039
He wasn't terribly aggressive.
00:49:43.199 --> 00:49:46.639
He was very he was physical, not aggressive.
00:49:46.880 --> 00:49:52.320
You know, and so the words we use and the way we label what we're seeing makes a big difference.
00:49:52.400 --> 00:49:58.239
And really, if we think from a neurophysiological perspective, a neurodevelopmental lens.
00:49:58.480 --> 00:50:00.719
I mean, I'm preaching to the choir here.
00:50:00.880 --> 00:50:02.719
You're the one and you're the expert in this.
00:50:02.880 --> 00:50:12.800
And what I was doing was saying um to families, so neurodevelopmentally, we do this to build on his assets.
00:50:13.199 --> 00:50:15.280
We're building on his assets.
00:50:15.760 --> 00:50:17.519
He loved little Sally Walker.
00:50:17.599 --> 00:50:20.320
He loved the, you know, the game Little Sally Walker.
00:50:20.480 --> 00:50:22.559
You know, it's a great, it's a great thing.
00:50:22.639 --> 00:50:26.079
The families were always playing with their kids, they were always doing little Sally Walker.
00:50:26.159 --> 00:50:31.519
He was wonderful, he was a dancer, he could he could shoot hoops.
00:50:31.679 --> 00:50:38.239
This kid was great, but he was being looked at as if he was dangerous.
00:50:38.480 --> 00:50:38.960
Yeah.
00:50:39.280 --> 00:51:13.039
You know, so this is this is um, and thank you so much because um it gets on to the other parts of the of our uh talking in the sense that when um families work so try very hard to get a diagnosis, the ones that get a diagnosis, they get to the point of we've had the diagnosis, and obviously what we do see is you know no support, and many of them, not many of the families do not know how to manage these behaviors.
00:51:13.199 --> 00:51:22.719
You've just described a typical example of behaviors that the children have, and how you were able to advise parents and all that.
00:51:22.880 --> 00:51:29.840
So um, some of the I I use some of those terminologies at the beginning because that's some of the things that parents have said to me.
00:51:30.000 --> 00:51:43.599
You know, he's aggressive, he's you know, but um manipulative and all these things I've heard from several of my uh of the children I look after, and we don't have the services in England.
00:51:43.679 --> 00:51:46.000
I wish I could be saying we have services.
00:51:46.159 --> 00:51:51.679
We don't, we can't even get therapy services for them, we can't even get any of those services.
00:51:51.840 --> 00:51:55.599
So And they can't in North America now either.
00:51:55.920 --> 00:51:57.920
They can't in North America either.
00:51:58.159 --> 00:52:14.960
So, really, we're at a time where people are accessing podcasts and learning how to build skill sets from from mapping what I call making a map of three key struggles and three key strengths.
00:52:15.119 --> 00:52:30.719
And I teach that in my book because what I find is that families have a lot of data, but they don't call it data, they call it stories about these are actually episodes of struggle where the behavior is is bigger than a tantrum.
00:52:30.960 --> 00:52:40.079
It it goes on longer, it's longer, it's stronger, and it's it's sometimes more physical or more more tactile.
00:52:40.559 --> 00:52:42.639
Kids will be doing tactile things.
00:52:42.800 --> 00:52:55.840
Other kids might be, you know, crying and things like that, but these kids might be they might be picking holes in a mattress or gouging holes in the wall board or doing physical tactile things that other kids don't do.
00:52:56.079 --> 00:53:10.880
They might be they might be um squeezing themselves between the box spring and the mattress of a bed and thrashing around in there, trying to get that that proprioceptive compression.
00:53:11.519 --> 00:53:18.960
So what would be your interesting things, yeah, the space that other kids aren't necessarily doing at the same age and stage.
00:53:19.360 --> 00:53:24.880
What would you advise them to do if their child has this outburst of behaviors?
00:53:25.599 --> 00:53:29.440
How do you would be your advice in terms of how they go about it?
00:53:30.159 --> 00:53:36.559
Well, one of the things that I did was I set my office up in a way that was very different than other therapists.
00:53:36.800 --> 00:53:46.559
And part of what I found was that the kids would would come in after school, for example, to a group for children with FAST.
00:53:46.800 --> 00:54:11.280
And under my desk, I had a half-filled beanbag chair, and I had a 20-pound weighted blanket, and I had the lights in the office in indirect lighting, and I had a rheostat on it so that kids would come in, and the first thing I'd invite them to do, because they had just come from the bus or from a lot of stimulation, they were exhausted, they were fatigued, sometimes very bristly and irritable.
00:54:11.519 --> 00:54:17.119
Depends whether they were one of those collapsing kind of kids or one of those bristle attack kind of kids.
00:54:17.280 --> 00:54:23.599
But I would let them dim the lights so that there was much less visual load for them.
00:54:23.760 --> 00:54:31.119
They didn't have overhead of fluorescent lighting that would buzz and bother their light sensitivity.
00:54:31.280 --> 00:54:38.960
And the kids who were the most irritable would want to be under the desk area in the in the beanbag chair.
00:54:39.039 --> 00:54:47.599
So I we used to say, I used swaps, not stops, and we used the phrase, a nest is best.
00:54:48.159 --> 00:54:50.559
And so I'd say, What do you need?
00:54:51.280 --> 00:55:01.679
And they'd point at the nest, I'd say, a nest is best, and they'd pop into the nest, and they'd pull the weighted blanket up and they'd be in there for 10 to 20 minutes.
00:55:01.920 --> 00:55:15.840
When they were ready, they'd shove the heavy blanket off with their feet, and they'd go to the art material, and then they'd use the art material, and they'd show me what the weather had been like that day, meaning how their day had been at school.
00:55:16.000 --> 00:55:17.360
How was the weather today?
00:55:17.599 --> 00:55:21.039
And they'd and they'd show what they couldn't say.
00:55:21.199 --> 00:55:24.159
They didn't have to tell me, they could show it.
00:55:24.800 --> 00:55:33.840
And it was a place for them to vent, it was a place for them to let things out that they couldn't explain.
00:55:34.000 --> 00:55:50.880
And usually what would happen was after they had physically gotten things out, some would use the stair stepper and they'd pump up and down on a stair stepper for 10 minutes until they were tired like this and they were breathing deeply again.
00:55:51.039 --> 00:55:52.960
And then they would use the art materials.
00:55:53.039 --> 00:56:11.440
But what they did was they got their bodies back and then they showed what they couldn't say, and being able to show it instead of explain it to somebody was a huge relief for these kids because most important was their bodies were completely uncomfortable.
00:56:12.159 --> 00:56:19.440
Their the the little the one who had drawn the picture of the porcupine on the whiteboard, he had hand fatigue.
00:56:20.559 --> 00:56:25.760
He had neuromotor fatigue from holding a pencil and trying to write and do.
00:56:25.840 --> 00:56:28.800
And the teachers they meant well, they would try and encourage him.
00:56:28.960 --> 00:56:29.920
Oh no, you can do it.
00:56:30.079 --> 00:56:33.920
I can't, I can't, he'd say, I don't want to.
00:56:34.159 --> 00:56:35.440
Well, you can do it.
00:56:35.519 --> 00:56:36.159
I know you can.
00:56:36.559 --> 00:56:39.440
The teachers, people were trying to be encouraging, right?
00:56:39.599 --> 00:56:40.880
That wasn't the problem.
00:56:41.119 --> 00:56:44.880
The problem was he was in pain and he had neuromotor fatigue.
00:56:45.119 --> 00:56:52.559
Now we don't expect a little child in a bouncy body to fatigue.
00:56:52.960 --> 00:56:53.519
Yeah.
00:56:53.760 --> 00:56:59.519
It's a concept that that teachers are usually surprised by and parents are usually surprised by.
00:56:59.760 --> 00:57:05.920
To think about that different physiology and think, wait, so they're having headaches by the time it's 10 a.m.
00:57:06.480 --> 00:57:11.920
because of the buzzing lights in the classroom and the sound of the bus that they oh my goodness.
00:57:12.159 --> 00:57:18.960
So they're having really they're having almost like migraine-like headaches, but they never told me.
00:57:19.119 --> 00:57:22.639
They didn't tell me they hurt, and they don't know that we don't know.
00:57:23.039 --> 00:57:28.320
So they don't know to say anything, just say, I can't, I don't want to, and look away.
00:57:28.480 --> 00:57:30.559
They don't tell us their hands hurt.
00:57:31.760 --> 00:57:36.239
They may slump on the desk when they're writing or be putting their head down like that.
00:57:36.559 --> 00:57:40.159
They don't say the position is bothering me.
00:57:40.320 --> 00:57:54.719
Give me a slant board, I can handle the assignment better, or let me write on the whiteboard because the marker will slide and it's less work for my hands, and I can use my trunk and my shoulder instead of my hand.
00:57:55.280 --> 00:58:06.480
And just for the purpose of our audience, because I completely get the total picture of what Antonia is describing, and sometimes behaviors can be misinterpreted.
00:58:06.559 --> 00:58:11.599
So some uh people might think when they're moving like that, is it stimming?
00:58:11.760 --> 00:58:13.119
So stimm is quite different.
00:58:13.360 --> 00:58:15.280
When a child stims, it's quite different.
00:58:15.440 --> 00:58:20.880
Most times they're not distressed, it's just uh sensory movements that they enjoy doing.
00:58:21.360 --> 00:58:25.199
Stimming, they're stimming because that's the just right spot for their body.
00:58:25.440 --> 00:58:25.840
Exactly.
00:58:25.920 --> 00:58:30.559
So they still listen for listen to a lesson?
00:58:30.719 --> 00:58:31.840
Absolutely, they can.
00:58:32.159 --> 00:58:35.840
But we could put them, for example, on a beanbag cushion.
00:58:36.000 --> 00:58:40.960
Yeah, you know, you put them on a, you make a little, it's a very quick and easy thing to do.
00:58:41.119 --> 00:58:49.360
You can just take a couple of sacks of dried beans, three or four or five, and zip them into a little pillowcase and make a beanbag cushion.
00:58:49.440 --> 00:58:58.239
And then they can wiggle, even in a school seat, they can wiggle on the seat like this without making a big racket for anybody else.
00:58:58.400 --> 00:59:02.400
Yeah, and still they can be doing this while they're listening to the lesson.
00:59:02.639 --> 00:59:16.960
It's not disruptive, but they can focus because they're giving their spinal cord and gives them all this information so that they can digest the auditory tract that's coming at them.
00:59:17.119 --> 00:59:19.039
Yeah, things like that.
00:59:19.519 --> 00:59:25.280
And these kinds of workarounds are, you know, they're they're not the kind of stuff that we're typically taught to do.
00:59:25.440 --> 00:59:30.639
We're taught to stop a child, stop the behavior, excuse me, to stop the behavior.
00:59:32.159 --> 00:59:35.840
Sorry, not to swap to a different behavior.
00:59:36.400 --> 01:00:08.400
Yeah, no, and that's really important because just to re-emphasize that is exactly what Antonia has said is the typical approach for most um you know therapeutic uh interventions is they want to stop the behavior, and that's what they work on, and that's why sometimes it doesn't work for the children, because um people are expecting the conventional practices to work, which doesn't tend to.
01:00:08.719 --> 01:00:23.920
Well, and often if we if we see a child who's in distress and we try and talk with them about it, and they're already at threshold for sound, and they're losing ability to think straight, so they can't even find their words to explain.
01:00:24.159 --> 01:00:27.599
The more we talk, the more agitated they'll become.
01:00:28.559 --> 01:00:47.679
Which is it's it's counterintuitive to see their signs of distress, their gaze aversion, or they're swallowing, or they're fidgeting, and offer them something else for the body before we try and have a conversation, or offer them away like a piece of paper.
01:00:47.840 --> 01:00:51.199
Show me what's stuck, something's stuck, I don't know what's stuck.
01:00:51.280 --> 01:00:52.079
Can you show me?
01:00:53.920 --> 01:00:59.920
You know, maybe maybe they'll just scribble, maybe, maybe they'll make a picture.
01:01:00.159 --> 01:01:13.360
But in the little boy who who did the porcupine, he made that image of a mouse with bristles up, and I said, Oh, it looks like a porcupine, and he went like that.
01:01:14.000 --> 01:01:16.559
And then it took about a minute and a half.
01:01:16.639 --> 01:01:17.519
I just waited.
01:01:17.599 --> 01:01:21.360
I didn't look directly in his face, I just waited right next to him.
01:01:21.840 --> 01:01:28.800
When we see a kid who's gaze aversive, a child who's gaze aversive, we don't try and focus in eye to eye.
01:01:28.960 --> 01:01:34.960
We we stand next to them like two guys in a truck who are about to say something important.
01:01:35.519 --> 01:01:38.559
They're not gonna look at look at each other like truck therapy.
01:01:38.719 --> 01:01:43.039
Oh, I'm standing next to him, and so I side with him.
01:01:43.760 --> 01:01:48.400
And it took him about a minute and a half, and out came the words, it was a hard day.
01:01:49.360 --> 01:01:50.719
It was a hard day.
01:01:50.880 --> 01:01:59.760
Now that's a very brief phrase for a child who is nine years old to barely be able to get words out like that.
01:01:59.920 --> 01:02:02.000
That was that was a big delay.
01:02:02.400 --> 01:02:06.719
That's a long latency in spoken communication.
01:02:07.280 --> 01:02:12.639
But when we see those physical signs, we slow down, we don't speed up, we slow down.
01:02:13.760 --> 01:02:21.360
And we get next to them and we dose interaction by looking at a conjoint focus.
01:02:21.519 --> 01:02:24.639
I can interview the art, I don't have to interview the child.
01:02:25.360 --> 01:02:29.199
I when I'm when I'm talking to the art, we're looking at the art together.
01:02:29.360 --> 01:02:32.480
I'm not looking at the child in the eyes, we're looking at the art.
01:02:32.559 --> 01:02:35.679
Oh, look, look, look, he's got bristles.
01:02:37.199 --> 01:02:40.159
You know, and this little boy, huge sigh.
01:02:40.719 --> 01:02:46.400
And when you see a sigh like that, you wait, because you know there's a story with it, right?
01:02:46.880 --> 01:02:47.119
Yeah.
01:02:48.239 --> 01:02:48.880
You wait.
01:02:49.519 --> 01:02:51.840
And sure enough, his words came out.
01:02:52.000 --> 01:02:53.119
It was a hard day.
01:02:53.280 --> 01:02:56.639
And then we found out how his hands were in pain.
01:02:57.039 --> 01:03:06.320
He'd had to write and write and write, and his hands were in pain, his hands were in pain, and his hands were always having pain.
01:03:07.039 --> 01:03:13.679
And he needed, he couldn't, you know that chest for for radio ulnar function when you have a child do this.
01:03:14.639 --> 01:03:19.840
He had he had problems in his radio radio ulnar system.
01:03:20.159 --> 01:03:24.320
He couldn't he couldn't turn his hands like that.
01:03:24.400 --> 01:03:29.199
So you can imagine how holding a stylus was more difficult for him all day long.
01:03:29.679 --> 01:03:30.320
Exactly.
01:03:30.559 --> 01:03:33.039
It was very, very, it was very challenging.
01:03:33.199 --> 01:03:38.079
And and he, you know, he almost had what one would consider peripheral neuropathy.
01:03:39.440 --> 01:03:41.760
A real real neuromotor fatigue.
01:03:41.920 --> 01:03:57.920
Now, if people don't know that, they're not gonna offer him ice for his hands or or the kind of warming, warming mittens you can that you can put in the microwave that that provide warmth for the hands.
01:03:58.079 --> 01:04:05.039
Different kids need different things, but there are things that help with neuromotive motor fatigue if we know that it's there.
01:04:05.199 --> 01:04:12.000
Now, with brain injury, we learn, okay, there's been an injury, there's a baseline before, now the person's different.
01:04:12.159 --> 01:04:14.880
But with these children, we don't have a baseline to go back to.
01:04:14.960 --> 01:04:21.039
But we once we know, right, there was something different about how things developed.
01:04:21.199 --> 01:04:33.360
And so their nervous system and how it signals from the autonomic and parasympathetic nervous system, how all of that is is working together, it's working a little differently.
01:04:33.599 --> 01:04:36.400
The signals aren't flowing as smoothly for this person.
01:04:36.719 --> 01:04:37.840
Thank you so much, Aya.
01:04:38.159 --> 01:05:06.559
This is it's excellent, and I think um our conversation and our discussion has just shown um that we need a different approach of working with children with FASD, and that the exposure uh they've had from you know the you know, from maternal alcohol and has affected the way they process things.
01:05:06.800 --> 01:05:15.519
So if we have that at the back of our minds from the beginning, then we will seek to understand the children better.
01:05:15.760 --> 01:05:32.960
At schools, we would realize that what their nervous system needs impacts the way they behave, and that we need to understand that rather than adopting a punitive way or a harsh-disciplined way with them.
01:05:33.519 --> 01:05:38.960
Uh, we need to understand what those behaviors are communicating.
01:05:39.199 --> 01:05:55.119
And you've told us about children even with physical problems where they've not been able to communicate that, but how it's impacted on their behavior, and being able to do that has helped to, you know, somebody working with them.
01:05:55.360 --> 01:05:59.760
It's been amazing, it's been really amazing because um this is what.
01:06:00.239 --> 01:06:17.119
What I feel that um this is the understanding that people working with children and young people with FASD need to have, that it's not the typical behavioral approaches which we use that will work with them.
01:06:17.280 --> 01:06:21.679
We've got to I love the word swap, not stop.
01:06:22.159 --> 01:06:53.199
I found that so useful, and and the people who are now adults who who some of their families are still in touch after all these years, but they say that those swaps are still useful in adulthood, they're still using some of those techniques that they used in in childhood in order to calm and regroup after a day at work, to be able to manage, like an asthmatic learns to use an inhaler, you know.
01:06:53.519 --> 01:07:09.840
If we know what our body needs, because our stress threshold is a little different, if we learn what our body needs for managing, then we can have those, we can have those workarounds in our relationships, in our family, in our work environment.
01:07:10.000 --> 01:07:12.639
There are a lot of ways we can navigate with that.
01:07:12.800 --> 01:07:20.559
Once we have our stress kit that helps us, we we can we can use it more adaptively.
01:07:20.719 --> 01:07:32.320
And and as kids grow, there are ways we can broker scripting how to how to share that information selectively when they need to with, you know.
01:07:32.559 --> 01:07:34.719
What other people do they want to know?
01:07:34.960 --> 01:07:40.480
Here's what works for me, here's my here's my map, here's the map to me.
01:07:40.639 --> 01:07:48.719
It's for one, we help them have a map to themselves that helps their experiences make sense, first of all.
01:07:48.960 --> 01:08:02.400
And then what that means in interaction with others, we help them broker that back and forth, and it can be organized like it is for other physiological conditions.
01:08:03.440 --> 01:08:08.960
I love I love the idea of them having that personal map because it's almost like their own plan.
01:08:09.360 --> 01:08:13.280
They can well, they are so very individual.
01:08:13.519 --> 01:08:30.640
When we've met one person with FASD, because of the dose and the timing and the volume of alcohol or other drugs that admixture of what they were exposed to, each person's profile might have some things in common with other people, but it's gonna be pretty individualized as well.
01:08:30.800 --> 01:08:35.359
Yeah, based on their own, their genetic inheritance, their experiences.
01:08:35.680 --> 01:08:54.640
So, so what we have is we have a neurodevelopmental difference that's very individual, it has an individual flavor, and we've gotta find the strategies, build the map that works for that body in the way that it functions best, yeah, yeah, you know, and there's a way to do that.
01:08:54.720 --> 01:09:18.640
If we look at the neurophysiology as one piece, their neuroprint, second, how does that affect their energy system, their battery, their stamina level for stressors and for and then three, how does the environment fit and either exacerbate it or ease it?
01:09:18.960 --> 01:09:22.560
And then time, how does that function over time?
01:09:23.760 --> 01:09:46.239
Those are the things we can look at instead of using a behavior extinction paradigm, we can look at it like we would look at it for handling diabetes or handling any other neurophysiological uniqueness in a person, and saying, okay, how do we understand what your body needs and help you understand it and get it across to the people who need to?
01:09:46.640 --> 01:09:53.680
So the question a lot of my audience and families would be where can they get this information?
01:09:53.920 --> 01:10:04.800
Because it's not available within the therapy um world with the general therapy, when we refer them to the the usual therapies, they're not getting it there.
01:10:04.960 --> 01:10:05.760
Definitely not.
01:10:06.560 --> 01:10:07.680
This is heartbreaking.
01:10:07.840 --> 01:10:18.239
I know that art therapists, because we work with medical conditions and head injury and dementia and stroke and things like that, we use that habilitative perspective.
01:10:19.279 --> 01:10:22.159
So art therapists can help.
01:10:22.399 --> 01:10:34.960
I wrote a book about it, and that stress mapping system is in my book, and there's also a tool that I and a colleague of mine who was an educator, she and I go back 40 years in fetal alcohol spectrum disorders together.
01:10:35.119 --> 01:10:54.479
Her name is Deb Evanson, and she's an educator, and we developed an individualized environmental plan to help families look at the match between their child's unique neurophysiology and environmental factors to help see what the workarounds might be.
01:10:54.640 --> 01:11:39.279
So I wrote all that up in my book, and I've also shared, I'm I've helped other people who are approaching FASD this way, write about it, and and so I I provided a list of some other books that might be useful to families and to teachers and to various other professionals for being able to have a kind of shorthand to use this sort of thinking to look through, to sort of borrow our glasses and look and look through our glasses at seeing the body from this perspective and understanding symptoms from the level of reflexes for because reflexes aren't the same as choice.
01:11:39.520 --> 01:11:44.319
We we live in a time where people presumed that everything was behavior choices.
01:11:44.560 --> 01:11:46.479
Well, a lot of this is reflex.
01:11:46.560 --> 01:11:56.479
It's not driven by the frontal lobe where choices are made, it's driven by the stress system that's responding like an overactive car alarm.
01:11:57.039 --> 01:11:59.199
You don't even have to touch the car, it's going.
01:12:00.159 --> 01:12:02.479
Have you ever walked by those cars in the parking lot?
01:12:02.720 --> 01:12:04.960
You get too close and the alarm is going off.
01:12:10.560 --> 01:12:12.079
Like an overactive car alarm.
01:12:20.079 --> 01:12:26.000
You know, for asthma and for diabetes, or for these these neurological differences.
01:12:26.319 --> 01:12:31.039
They're they're subtle but significant enough that they can make life hard.
01:12:31.199 --> 01:12:32.560
They can make life hard.
01:12:32.800 --> 01:12:46.159
So that way of approaching it means okay, we learn how to manage our symptoms, and then we can figure out how to interact with others who who who function a little differently than we do.
01:12:46.479 --> 01:12:47.119
Fantastic.
01:12:47.279 --> 01:12:48.239
Thank you, Lord.
01:12:48.399 --> 01:12:57.680
We've we've come to the end of the podcast, and it's been an amazing session because I'm I'm definite that most of my audience will get a lot out of theirs.
01:12:57.840 --> 01:13:07.920
And these resources that you've described, we will put them in the um when in the show notes as well, where people can get them when we publish the podcast.
01:13:08.079 --> 01:13:10.560
We will we will put them there.
01:13:10.880 --> 01:13:13.680
Do you your your book, The Porcupine Booth?
01:13:13.920 --> 01:13:14.399
Yeah.
01:13:14.720 --> 01:13:17.600
So where can people get the book?
01:13:18.239 --> 01:13:20.319
It's available on Books by.
01:13:21.279 --> 01:13:25.840
There's a link on Books by, and it's available both in English and in French.
01:13:26.000 --> 01:13:30.079
I'm working on the German translation right now, but so it's available there.
01:13:30.239 --> 01:13:39.760
It's called Parenting Your Porcupine: a Toolkit for Children with FASD, other drug effects and neurodiversity.
01:13:40.880 --> 01:13:44.960
And it's it's not the kind of book that's easy to read through.
01:13:45.119 --> 01:14:06.079
It's the kind of book that you might want to graze from it here a little bit and take this section and then come back to it after you've tried a few things, see what you like, see what works and what doesn't, and then chew on it as you go along because it's kind of a manual with many pieces, many chunks of information.
01:14:07.119 --> 01:14:07.439
Okay.
01:14:08.000 --> 01:14:45.600
It's designed to provide a lot of basic information about the body and the body culture of living with this difference, with these differences, and how to organize an approach with it that uses workarounds, swaps, not stops, things that help the person navigate living in a very different body culture, and then dealing with that as a family, and brokering that with professionals who may not easily understanding why a parent is taking this kind of an approach.
01:14:46.399 --> 01:14:52.720
They may be thinking, well, you're being too easy on him, he's gonna have to toughen up, things like that.
01:14:52.880 --> 01:14:57.680
Yeah, ways to talk about what looks so different about their behavior.
01:14:57.840 --> 01:15:16.399
So there's even a glossary that discusses some of the terms that we talk about, alexithymia, speech and language issues, anomia, some of the problems that families might have been running into, but not known a phrase to say to a professional, wait, you're saying he doesn't want to.
01:15:16.560 --> 01:15:18.479
Actually, he doesn't understand that skill.
01:15:18.560 --> 01:15:20.479
There's a gap there, and this is why.
01:15:20.800 --> 01:15:22.640
Well, thank you so much, Antonia.
01:15:22.720 --> 01:15:25.680
It's been an excellent, it's been an excellent session.
01:15:25.840 --> 01:15:30.880
Like I said, when I when we had a brief chat last week, I enjoyed it so much.
01:15:31.039 --> 01:15:42.159
And I, you know, I left you filled with so many ideas and strategies and a better understanding of what my patients were going through.
01:15:42.399 --> 01:16:02.479
So I'm sure this session is going to be useful for so many, and when the podcast comes out, it's going to be one that will be so useful for many, and hopefully, schools, educators, and other professionals who come across and work with children with FASD would take something out of this as well.
01:16:02.800 --> 01:16:04.319
So thank you for coming over.
01:16:04.399 --> 01:16:06.079
Thank you for the great work you're doing.
01:16:06.479 --> 01:16:07.119
Thank you so much.
01:16:07.199 --> 01:16:12.159
I'm very honored, and I just encourage people to take what they need and leave the rest.
01:16:12.560 --> 01:16:14.720
Yeah, you know, and to go at it.
01:16:14.960 --> 01:16:17.359
Good scientific method, a bite at a time.
01:16:17.520 --> 01:16:20.319
If it doesn't work, set that aside.
01:16:20.399 --> 01:16:21.920
We try something different.
01:16:22.479 --> 01:16:23.119
You know?
01:16:23.840 --> 01:16:26.239
Trial and error is a good scientific method.
01:16:26.479 --> 01:16:28.159
Yeah, thank you so much.
01:16:28.640 --> 01:16:29.279
Thank you.
01:16:29.840 --> 01:16:34.319
As we always say, early intervention leads to better outcome.
01:16:34.479 --> 01:16:39.439
And early intervention can only be achieved by early diagnosis.
01:16:39.680 --> 01:16:42.000
So thank you for listening into the series today.
01:16:42.159 --> 01:16:50.560
Um, I know some of the things we've talked about today would probably have generated some questions or need to see clarification.
01:16:50.800 --> 01:17:00.079
So I'm happy to take questions and I'll invite you to send your questions to EIM at drtakon.com.
01:17:00.800 --> 01:17:01.920
Thank you for listening.