Raising a Child with FASD to Thrive

Are you raising a child with known prenatal exposure to alcohol? Does your child have a diagnosis for Fetal Alcohol Spectrum Disorder? Listen to this conversation with Barb Clark, Founder and CEO of FASD Mosaic. She offers coaching, training, and consulting on Fetal Alcohol Spectrum Disorders (FASD), trauma, neurodivergence, and challenging behaviors, and is the author of Raising Kids and Teens with FASD: Advice and Strategies to Help Your Family to Thrive!

In this episode, we discuss:

• In your experience, what do caregivers most misunderstand about FASD at first?”
• How does prenatal alcohol exposure impact brain development?
• What is the difference between FAS and FASD?
• Do the timing, frequency, and amount of alcohol all matter in the outcomes experienced by the child? Are there other factors at play?
• Why is FASD still so often missed or misunderstood?
• Primary neurological impacts on a child who has FASD
• Secondary behaviors – which, when viewed through that brain-based lens, are adaptive responses that help them process and cope with their environment
• What are a few practical strategies parents and caregivers can implement to help them reframe how they support their child with FASD?
• Tantrums or raging as an example of challenging behaviors – how it may look differently across these ages and developmental levels
• What are a few of the typical strengths seen in individuals with FASD?
• Why do these strengths often emerge inconsistently?
• How our home environment and culture set a child with FASD up for success
• Can you offer practical suggestions for how parents or caregivers would implement a strengths-based approach to raising a child with FASD?
• Practical strategies that parents and caregivers can implement right away when raising their child with FASD
• How do you recommend a parent or caregiver handle the process of repair and reconnection with a child with FASD? 
• What should parents and caregivers consider in planning for the future?
• Prioritizing self-care and reframing it as interdependence and community care.

Resources:

• Prenatal Substance Exposure Workshops for Parents
• Prenatal Substance Exposure resource page
• FASD Mosaic

Chapters

• 1:38 In your experience, what do caregivers most misunderstand about FASD at first?
• 3:32 How does prenatal alcohol exposure impact brain development?
• 6:00 What is the difference between FAS and FASD?
• 8:43 Does timing, frequency, and amount of alcohol all matter in the outcomes experienced by the child? Are there other factors at play?
• 12:28 Primary neurological impacts on a child who has FASD
• 14:56 Secondary behaviors – which, when viewed through that brain-based lens, are adaptive responses that help them process and cope with their environment
• 20:15 What are a few practical strategies parents and caregivers can implement to help them reframe how they support their child with FASD?
• 30:56 Let’s use tantrums or raging as an example of challenging behaviors – can you share with us how it may look differently across these ages and developmental levels?
• 38:52 What are a few of the typical strengths seen in individuals with FASD?
• 40:16 Why do these strengths often emerge inconsistently?
• 43:13 Can you offer practical strategies for how parents or caregivers would implement a strengths-based approach to raising a child with FASD?
• 50:05 How can we recognize when anxiety is involved in driving certain behaviors?
• 54:08 How do we respond to rages and intense emotional dysregulation?
• 1:01:09 How do you recommend a parent or caregiver handle the process of repair and reconnection with a child with FASD?
• 1:07:46 Parents and caregivers often worry a lot about the future their kids will experience, especially once they reach adulthood and a parent’s roles and rights to participate change. What should parents and caregivers consider in planning for the future?
• 1:13:25 Prioritizing self-care and reframing it as interdependence and community care.

Transcript

Please pardon any errors, this is an automated transcript.

Hello and welcome to Creating a Family, talk about adoption, foster care, and kinship
care. My name is Tracy Whitney. I'm the content director for Creating a Family, and
I'm the host of both of the Creating a Family Podcasts. I wanted to talk to you
today about raising a child impacted by fetal alcohol spectrum disorder. It's
challenging and weighty work, and parents and caregivers that we support often carry
many wide -ranging emotions throughout their daily lives, and it can be a heavy
weight to carry. They feel confusion, exhaustion, guilt, isolation,
all the things. And so our goal today is to reduce the stigma of FASD by
increasing your understanding of its challenges and its joys. And we want to create
a safe space for you to learn with us about the strategies that will help your
family thrive. Helping us do that today is Barb Clark. Barb is known for her down
-to -earth style, blending honesty, humor, and practical wisdom to empower caregivers
and parents and professionals with real -world strategies that actually work. Drawing
on lived experience as an adoptive parent of five kids, her own late -in -life F -A
-S -D diagnosis, and her work training thousands across the U .S. and Canada, she
brings deep insight and authenticity to her work through FASD Mosaic and her book,
Raising Kids and Teens with FASD, advice and strategies to help your family thrive.
So we're thrilled to welcome Barb Clark today. Thank you. I'm really excited to be
here with you. We're really glad to have you. So we're going to dive right in and
start talking about the joys and challenges and talk first about the things that may
be what most caregivers or parents misunderstand about FASD. Oh,
you know, I think a lot of people misunderstand what a vast spectrum it is, right?
That's why it's called fetal alcohol spectrum disorder because of the various ways
that it can impact any individual, whether they're a child or adolescent adult. You
know, again, as you just said, I was diagnosed with it almost a year ago last
April when I was 56. I've known for years that I likely am on the spectrum, but
it is a lot of times people are like, oh, no, my kid doesn't do that or my kid
so cute, you know. And I'm like, that still doesn't mean that they might not have
been impacted, you know, by that prenatal exposure and have brain differences. You
know, what's really hard too is that with FASD, a good chunk of our kids can have
some really challenging behavior.
willful disobedience, not bad choices, not a child being naughty. It's a brain
injury. And then I would say the other big one too, though, is that, and I hear
this almost on the weekly with the families that I work with, is they always are
saying how manipulative their kids are. And it does feel like manipulation,
some of these struggles, you know, these behaviors and things that we're seeing. And
it's to be that once in a while because that's typical child adolescent behaviors
but
Tratogen, which means it crosses the placental barrier and can cause various birth
defects. And so, you know, no two individuals are impacted the same way. You know,
it's always interesting. I look at myself on the spectrum and my daughter. And in
many ways, we're on polar opposite ends. I've been able to function in the world.
And she's functioning in the world, too. She just has more struggles. I've had
struggles for sure. But her struggles are just a bit more severe. So yeah, it can
impact every cellular level of the developing fetus, right? So the thing that is the
most impacted for most individuals is the brain and some of their brain functioning
skills. But it also can affect other parts of our body, right? It's really common
to see vision or hearing issues. There's 428 common co -occurring disorders with FASD.
And my daughter has multiple other medical diagnoses. I do too. I have,
I just in this past September had my 18th surgery. You know, I have lots of weird,
mysterious medical stuff. My daughter does. Now, not everybody with FASD does. And
what we see is a lot of those things kind of coming up more in adolescence and
adult Years is when some of those things, but even for some of our kids on the
fetal alcohol spectrum, they might have that failure to thrive in those early years
of life and have a lot of other stuff kind of going on. But the thing that when
I'm working with families that I am just really trying to kind of hammer home is
it's about the brain, bring it back to the brain. If we're using brain -based
strategies and understanding the brain better, we're going to be much better off.
Creatingafamily .org would like to take a moment to say thank you to the Dave Thomas
Foundation for Adoption for sponsoring this podcast. The Dave Thomas Foundation for
Adoption believes that together we can ensure every child has a permanent loving
family. Read stories of youth and families touched by adoption, including adoption
from foster care and access resources for parents, caregivers, and child welfare
professionals at Dave Thomas Foundation .org.
So what is the difference, or is there a difference, between FAS and FASD?
Yes. So FETAL alcohol syndrome is FAS. FASD is fetal alcohol spectrum disorder.
So FASD is technically in the United States, not a diagnosis. There are five or
more diagnoses under that umbrella of the fetal alcohol spectrum. And fetal alcohol
syndrome is one of those things under that umbrella in the United States.
Now, diagnostics are different. I think Canada actually has simplified and made the
diagnostics much less confusing than we do in the U .S. and it's different over,
you know, in other countries even. But so fetoloccal syndrome, children who have that
diagnosis have three facial features, growth deficits below the 10th percentile,
and then they have to match the cognitive profile. For that diagnosis, you don't
have to have confirmation of exposure. But for all of the other ones on the
spectrum, you do have to have the confirmation of exposure, which is complicated to
get. And I know kids that I've worked with that have fetal alcohol syndrome that,
you know, have average or even sometimes high IQs. You know, there's a lot of
misinformation out there thinking, well, my child is so bright. There's no way they
have fetal alcohol. And I have my IQs in the high average range, but yet I'm
horrible at math. I'm horrible. My attention is horrific. You know,
there are definitely several learning things that I struggle with. And so,
to know, because you might bring this up as a possibility to a various professional,
whether it's a medical doctor, a therapist, a social worker. And they might look at
your child's face and say, oh, nope, I don't see the face. That is really old,
outdated information that is still being taught in medical school in various
universities and college curriculums. So often it's the caregiver giving to say to a
professional, oh, did you know now that they've realized that less than 10 % of the
kids have those facial features? And, you know, so we're sometimes the ones having
to do the digging and the pushing. So the facial features happen when the exposure
is at a specific time range in the prenatal development. Yes. Which begs the
question, how does or does the timing, the frequency, or the amount of alcohol
matter across the spectrum of a nine -month pregnancy? And what are some of the
other factors that are looked at there? Yeah. You know, it's the facial features are
formed around days 17 to 21 of gestation. So like the second to third week of
pregnancy. I used to live in Minnesota. I'm in Florida now, but I worked at a
wonderful organization there called Proof Alliance, who is an FASD org and when I
worked there, I worked with a lot of, you know, adoptive foster kinship families,
but I also worked with many biological families. And a lot of the parents that I
was working with were like, how Barb, I drink every day I was pregnant and their
kids do not have those facial features. And so I don't know why some get them and
some don't. It just makes the diagnostics easier is really what kind of happens. But
there's other factors that go into the degree of impact that if developing fetus may
receive from that exposure, you know, the timing of exposure is important. It's not
safe during any trimester of pregnancy to use alcohol, but by far the most damaging
is that first trimester when many people don't know that they're pregnant yet.
Metabolism plays into it as well. The nutrition of the mother plays into it,
if she has good nutrition, if she has high rates of iron, coaling, you know,
vitamin B, all of these, there's research that just came out in the last few years
showing that, that the damage is less severe to the developing fetus. You know,
there's genetic factors too. You know, they did research with twins and they found
that identical twins had pretty similar impact, but fraternal twins did not.
They had vastly different outcomes. So we know even just an individual's genetics and
things like that play into it. And then also the big, the one that feels to me
like a no -brainer is that, you know, the blood alcohol concentration. Like if it is
higher levels of and binge drinking and things like that, we are more likely to see
more damage to the developing fetus. I was exposed, you know, my mother back in the
60s before this diagnosis was even discovered was socially drinking on the weekends.
And they used to tell women to drink alcohol when they were pregnant. They said
there was all these benefits to it. And when you actually went into, if you went
into premature labor, you know, in the 60s and before, or early 70s even,
if you went to the hospital with premature contractions, they would put you on an
alcohol drip and an IV to stop contractions. And when I worked at Proof Alliance,
I worked with two different families who realized when their kids were in their 40s
that they had FASD from that IV drip. Imagine how many, probably millions of adults
there are that were impacted, you know, because of that out there. But they're
misdiagnosed probably with bipolar, ADHD, mood disorder,
you know, conduct disorder, lots of other diagnoses. That's fascinating. So that helps
me understand a little bit better why FASD is so often missed,
as you just said, but also why it's so misunderstood. I'd love for you to help our
listeners view their children through this brain -based lens,
now that we've kind of cleared up some of the misconceptions and we've addressed
some of the details of how that can happen to a family. We're working with a
population of adoptive, foster, and kinship families that have many of these risk
factors and many more risk factors at play when trying to raise a child and parent
a child through challenging behaviors. So let's start with some of the primary
neurological impacts that a child may experience who has FASD.
And then we'll talk about some of the secondary behaviors after that. Yes. Well, you
know, one of the parts of the brain that is really impacted is the prefrontal
cortex and where the executive functioning skills lie. And so we can see various
executive functioning deficits. We can see them struggling with planning, organizing,
cause and effect, logic, impulse control, which is one of the biggest reasons why
families are really struggling is because of these kids' lack of impulse control.
So those are some of the huge ones. But also, you know, the amygdala, which is the
survival brain, the primitive brain down in the bottom of the brain, is very
impacted too. And so our kids really struggle with that fight, flight, you know,
freeze, flight, fun, all of those things they struggle with in their emotional
regulation. And again, that is another thing that is putting so many families over
the edge of the cliff is, you know, these kids just the slightest thing.
It could just be that they're, you know, the Wi -Fi isn't working right now or
we're out of their favorite cereal or whatever and they can completely have the
biggest meltdown that you can't even imagine.
sensory processing disorders are very common struggling to generalize generalizing is
it and this is what makes these kids so vulnerable most for for a healthier brain
individual if you do this today and you get in trouble or it doesn't work well
then an hour later or a day later or a week later you have probably you're able
to generalize and be like okay this thing i'm thinking of doing now is kind of
it's in the same lane or it's the same thing they they just struggle with
into a child who is struggling with all of those primary behaviors?
What would be some of those adaptive responses that maybe are not healthy adaptive
responses? Yep. Well, I'll start with the big three, raging, lying,
and stealing. Yeah, yeah, yeah. So, and that's in my book, I have a chapter on
each of those. I have a chapter on raging, a chapter on lying, and a chapter on
stealing. And honestly, I keep telling professionals and families, even if you don't
have a kid diagnosed or suspected of FASD, but if you struggle with those behaviors,
the book is going to be helpful. But Raging Lion and Stealing are the big three
that are, again, putting so many families at risk and causing, you know, kind of
toxic environments and things like that. Elopement, you know, the running away that
can be common, especially as the kids are getting older school challenges and school,
you know, I've worked with so many families who, geez, their kids are probably six
or seventh grade and they're in their fifth or sixth school. And it's not because
they've been moving, right? It's because they just can't find a school setting that
understands their kids and where their kids feel safe. And then another, one of the
biggest challenges, especially in adolescence and the young adult years is substance
use issues and justice system involvement. And a lot of those substance use issues
come from a need to self -medicate because they're feeling high levels of anxiety or
they're feeling high levels of rage and they have maybe learned that it's not
socially acceptable to rage by the time they're 13 or 14 or 15, but they're looking
for some other way to calm what they're feeling inside. Oh, exactly. And when an
individual is prenatally exposed to alcohol in utero, they are born with depleted
dopamine levels. And so this is one of the reasons that by the time they're in
adolescence, if not before that, we are seeing really high rates of depression and
anxiety for this population. And so they're trying to self -medicate to feel better,
which, you know, I can understand that, right? You know, it's not fun to be in the
dumps all the time and feeling like that. So, yeah, it's a challenge. And it's also
very, it makes you feel very vulnerable when you know that your behaviors are not
acceptable to the population around you. Yes. Yes, exactly. Being a teenager is hard
enough. And then when you add some of these layers to that, yeah. And I hope that
this conversation doesn't just erase some of the stigmas for parents who are
struggling with these kinds of behaviors. I hope it also just elevates compassion and
empathy for their kids and what their kids are going through. Oh, that, you know, I
say that all the time when I do coaching with families all the time. And I say,
you know, I say, look at how hard it is to parent these kids. It's 40 million
times harder to be in that brain and that body and all of that kind of stuff.
And so compassion for them. I also really push families too and professionals to
have compassion for the first families, right? Because we can get really judgy and
finger -pointy for it. And, you know, it's a common, I get it because we feel grief
and loss over this, you know, any diagnosis. There's grief and loss with, but this
is a big one. And so part of grief and loss is anger, right? That's one of the
stages of it. We don't want to get stuck there, though. That's any of the stages
of grief and loss you don't want to get stuck in, but in particular anger. And
what I always say is nobody ever does this intentionally. It's either somebody
struggling with a substance use disorder and being pregnant isn't going to be enough
to break that cycle for many, somebody that had an unplanned pregnancy, and then
maybe stop using, or somebody that had the misinformation that it's okay to use
alcohol during pregnancy. So, you know, giving grace and compassion to the first
families is important, too. Yeah. And I think some self -compassion as well.
Yes. Just being gracious with yourself and not getting it right and saying, okay, we
can try again tomorrow is a new day. We'll start over again. And recognizing that
this challenge of raising this child is probably the biggest thing you'll ever do.
And it can be so joyful and it can be so rewarding, but be compassionate with
yourself because it's also very, very hard. It is possible to find joy in parenting
kids at FAS. It really is. But it really comes to, it comes down to us stop
focusing on trying to fix this child and find every intervention in the world.
Like This is what I, and I did this, and I see tons of families doing this. Like,
they're, they're just hyper -focused on the kid fixing. And instead, if we fix
ourselves as the parents and use different strategies, that's when we start to see
behaviors decrease and learning increase.
So Barb mentioned her book and the three chapters on the big three, lying, stealing,
and raging, we highly recommend it and we will link it in our show notes for
families because those are some great thoughts and strategies to get you going on
how to raise this child. So let's dig into a couple of the strategies that are in
your book and that will help parents and caregivers alike reframe how they support
this child with FASD. Yeah, you know, one of the, you know, what's really hard with
parenting, well, parenting in general, but especially kids with FASD is the regret
that we often feel as families of, you know, this is, my husband and I just tried
to use typical parenting strategies, the way we were parented, the way 95 plus
percent of the world parents, right? Consequences, logic, punishment, all of that kind
of stuff, which, you know, works up pretty well.
figure, I don't, I got to really dig and figure out, go look at my old blog to
figure out when this was, but I feel like it was probably when she was 12 or
something like that, maybe, when we finally figured out we were the problem and we
needed to find a whole different approach and parent differently. And when we did
that, things really started to simmer down. And we didn't have as many challenging
behaviors and things like that. So it's really, I love TBRI, trust based relational
intervention, that curriculum.
pushbacks I get from caregivers all the time when I'm when I'm trying to coach on,
you know, on shifting to these approaches is they feel like then that they're
letting the child get away with everything and that they're teaching them to that,
you know, getting that they can get their way by throwing a rage or a tantrum or,
you know, or pushing back. And and really that is not how it works. I can, you
know, so my kids right now are 23, 24, 25, 26, and 26. I have five.
No space between them. No, no space. The oldest Akila. And she gives me permission
to share this stuff, by the way. She's my one who's diagnosed. She's the one who
has taught me so much in this world. And it's it's a fascinating journey when you
look at it. But she real, when we started to use the different strategies and pull
back from consequences and punishing and adjusted our expectations. That's a big one.
You have to adjust your expectations. She started to learn. And I talk about that
in the stealing chapter that when we finally realized that and started using these
different strategies, she was actually able to have a conversation because we used to
have to sit with her all the time and try to dig into whatever the behavior was
and try to, and all, when we're asking her questions in these moments, her answers
always were, I don't know, I don't know, I don't talk about it. I don't talk about
it. And when we stopped doing that and stopped punishing and all of that kind of
stuff, a year and a half of this different type of parenting, and she stopped
stealing and hasn't stolen for over a decade, which was a huge problem for her in
childhood. And so, so the, I, you know, I sometimes refer to this kind of jokingly
as wussy parenting. And it's not because I'm a wuss, but it's because I get judged
by others. Right. My friends, my family, people would say, I would never let my
daughter talk to me like that. I'm like, you think I enjoy being called a B word
and I'll put the F bomb or whatever. I'm Like, this isn't fun. Do you think I
didn't try to get her to stop doing it? Like, come on, people, you know, but
there's a lot of judgment that comes with that and people, you know, and so I just
say to my families all the time, embrace it. Just embrace that. If you're not
getting the judgy comments from other people, you're not parenting these kids the way
that you should. The way they need it, right? Right. One of the other reframes that
we like to recommend to parents is that behavior is the result or an expression of
an unmet neurological need, something underneath the surface. And so if we can look
at them from the standpoint of what are they trying to tell me they need and they
maybe don't have the words to express what they're feeling inside. Absolutely.
Behavior is communication 100%. It is telling us something. And, you know, one of
the big things, two, the other strategies that I talk a lot about is understanding
the developmentally scattered profile of this child or this individual and reframing
from what their developmental age is, not their chronological age. And I still,
a lot of the fan, I work in, I have a friend named Jeff Noble, who's an FASD
educator in Canada and he has this wonderful group coaching program. And I'm the
head coaching it. And we've got, we've got a lot of parents in there who have
young adult kids, right? And, you know, just actually a week or so ago, a family
was talking about their kid and employment and how, you know, he's got this job
right now. Actually, he's just 17. And, you know, they couldn't get him to go to
work over the winter break because it's winter break. You know, the concrete brain
is, I don't have to work. It's Yep. And so, and I'm, you know, and this parent
was so frustrated, which I understand, you know, and so I was trying, I'm like,
okay, let's back up though. Developmentally, where does he function at on average,
right? And most of the time with FASD, we say to take their age, cut it in half,
and that's probably closer to where they're at on average. Now, some kids, it might
be a bit above and some a bit below that on average, but that doesn't mean the 17
-year -old who maybe is acting at an eight or a nine -year -old on average doesn't
mean that one moment he's
and meet him where they're at in those moments. But I had to say to that
caregiver, I'm like, if his average age is eight or nine, why are we expecting him
to maintain employment? Yeah. You know? Yeah. Without maybe some significant
scaffolding. Exactly.
So our former executive director, Dawn Davenport, used to call it many children in
one body and that our expectations needed to be reduced such that we didn't feel
like over amounts of stress at trying to figure out which child we were getting in
that body in that moment. And that's so challenging. And you're right. That's why
many of us are fried. We're just exhausted. Very, very challenging. Yes, very
challenging. Well, and the expectation thing is huge. We just, and I'll never forget,
I was sitting with a family in their living room. This was years ago when I worked
at Proof Alliance. And I was trying to talk to them about expectations. And the
father just took his fist and I think I put the story in the book. He slammed his
fist on the coffee table and he goes, I refuse to lower my expectations. And it
was really kind of forceful the way he did it. I think that's why I have such
muscle memory with that moment. And I said, good, we're not going to lower the
expectations, we are going to adjust them based on the child you were caring for.
And I said, would you expect that child to read, if they were blind, would you
expect them to read a book that was not braille? And he said, of course not. And
I said, then why would you expect your child who has a brain injury to do
something that she's not able to do, wait for the big important word in the
sentence, yet? I just wrote a blog post last week about the power of yet and how
my like in my daughter it's so fun to watch her right now at 26 some of these
things are starting to connect and work in her brain and it's slow it's slow and
it's not it does not match her same age peers but i am seeing huge growth from
her so it's about not yet yes and those of us who are in the trenches raising
kids with these challenging behaviors and these brain injuries, the power of yet is
so important for us to grasp and hold on to sometimes if you're holding on just by
your bare fingernails, but hold on to that hope. Exactly.
I hope you're enjoying this conversation about raising a child with FASD and ways to
help them thrive. Before we go back to the show, I want to tell you about another
opportunity to learn about prenatal substance exposure, and that's through the creating
a family prenatal exposure training sessions that we've created for families and
caregivers who are raising kids with potential prenatal substance exposure to alcohol
or drugs. These are a series of sessions that will help parents and caregivers
recognize the signs and symptoms of prenatal substance exposure and learn the
effective strategies for raising a child who may be struggling with some of the
impacts of those exposures. We run these workshops several times a year and in 26
they will all be free thanks to several generous partners such as the Jockey Being
Family Foundation and others who are working with us to help families get this
information into their hands. Seating for each of these workshops is limited and so
the registration opens about a month before each scheduled workshop and we highly
recommend that you go to Bitley slash prenatal dash exposure dash training to
register for one of the upcoming sessions. And if you are raising a child with
challenging behaviors such as some of the things that Barb and I are talking about
in today's show, whether this behaviors are rooted in prenatal substance exposure or
FASD or any other trauma, you can find some very helpful strategies in our newest
downloadable guide. It's called Navigating Challenging Behaviors, practical strategies
for families. And you can go to Creatingafamily .org slash newsletter to get that
free downloadable guide when you sign up for our free monthly newsletter. So thanks
for checking those two learning opportunities out, and we'll go back to the show
now. So let's get really practical and talk about a couple examples of challenging
behavior. Let's use tantrums and raging, because that's a big one for many ages and
stages, and it looks different across all the ages and stages. So let's talk about
how it looks. We'll start with early childhood, how it looks in early childhood, and
then what are some of the strategies we can use, and then we'll move through the
stages. Yep, yeah. Well, early childhood, you know, it's, you know, typical behaviors
for toddlers and stuff to have tantrums, right? We have the term toddler tantrums
and the terrible twos and all of that things up, right? So, you know, that's what
a lot of this looks like, except for what we will see, even with our kids in
those toddler it is, is the frequency and intensity of it is more extreme than your
average toddler, right? So that's what we see in kind of those early years. Then
you go into early childhood and what most, most healthy -brained,
neurotypical toddlers have now outgrown those tantrums and our kids haven't. So it
still looks like a toddler tantrum just in a bigger body. And in those school age
years, it's kind of starting to turn into the intensity and frequency is sometimes,
you know, increasing. But also you can throw in probably some curse words that
they've been starting to learn even in the school age years, right? And so it might
be coming with that. It might be coming along with other, you know, other things
too, like, you know, for us and my daughter is so amazing and I'm just proud to
say she's gone four years now with no physical aggression and she's has a huge
history of extreme raging which is why now I'm an expert in raging line and
stealing but she I think it was she was in early elementary when she first grabbed
a knife and threatened us you know and so you know it can really start to ramp up
and what what happens then they go into these teenage years and the difference is
is what we're dealing with is different sized bodies, you know, who are getting more
language skills and learning more worldly things and stuff like that. So the
intensity of those rages can really get pretty scary at different times.
I can literally remember in those early years, my husband and I being like,
is she going to try to kill us in the middle of the night while we're sleeping?
Or, you know what I mean? Like, we were just like, this is the, what is going on?
It was just so scary and all of that. And after years, wasn't, we're really slow
learners. After years, we realized, and again, this is our experience.
I'm not saying that isn't every family's experience, but we realized, you know, it
really isn't that. It's not that she's really trying to harm us or going to be
will.
when she is raging, when she's not getting what she wants, it doesn't mean that
there isn't risk of harm, right? I do know that, and I'm from personal experience.
But again, it's usually not life -threatening kind of harm. It's not fun harm. It is
not at all. And we don't want any of that. And again, with the right training and
the right coaching and the right support, we really can decrease, you know,
the intensity and the frequency of those, of those raging behaviors. And when you
pair the tendency towards impulsivity with this struggle of raging and tantruming,
it can create like this vortex of, you said that,
but did you really mean it? Yes. Yes. They don't even often remember having said it
because it just came flying out. They didn't have the impulse control to keep that
thought inside, you know, keep the harmful thoughts inside. And so, and parents, you
know, are not unaware of the fact that when our children cross from adolescence into
adulthood, the world around them will not see their behaviors as brain -based
behaviors. they will see them as potential threats. And so learning how to de
-escalate those with our kids and helping our kids learn how to de -escalate
themselves
becomes crucially important for their safety and protection. Absolutely. Yes, it does.
When what I always try to do, you know, I think the story is in my book too, but
I always try to get parents to understand some of the similarities between FASD and
any form of dementia, whether it's Alzheimer's, Louie Body, frontal temporal. You
know, I tell this story of a friend whose mother died from Alzheimer's and she was
in memory care. And they all took, the family took turns bringing her to church
every Sunday. And one Sunday, it was a 21 -year -old grandson brought her to church
and they were Catholic. So during Mass, they went up for communion. Priest gives the
wafer to grandma and says body of Christ. And grandma says, I don't want that F
and wrinkly wafer. Only she says the F bum, right? And her grandson's like,
grandma, it's okay. And she's like, F if it is, really the priest gives her a
different waper, also wrapped out huge explosive F bomb string of it. You know, so
she's escorted out of church. So my friend tells me the story, we die laughing. You
have to laugh at some of these hard caregiver moments you get to live through. And
then she said a life -changing thing to me. She said it reminds me of your Achila
stories. And I was like, oh, yes, I have stories just like that, even at church.
But when I started thinking about it and started digging into it and researching, I
realized look at all of the similarities in how the behaviors play out between
dementia and FASD. As my friend's mom's disease progressed,
she was physically aggressive and attacking staff and family. Lying is very common in
memory care, only we're able to reframe it and understand that it's confabulation,
which I've got a chapter on that. Hoarding food is common in memory care for people
that never had food insecurity. Stealing is common in memory care for people that
used to not But the difference is, is did we take away grandma's cell phone that
night? Did we say no screen time for you? Did we say you're not going on the
field trip to the bingo place this week? No, but we knew grandma's brain when her
brain was healthy, and we knew she never would have said the F bomb to a priest.
And so our kids deserve the same grace, patience, and understanding we would give
somebody in memory care. And that really helped me to reframe it. Like when my
daughter is having an explosive moment, she still has really huge verbal ones that
can go on for hours and hours. I just internally inside of my head try to keep
reminding myself of that and have kind of a mantra that I just start repeating and
thinking she's not doing this intentionally. It's a brain thing, brain, brain, brain,
brain you know it's just start going over and over it's the brain it's the brain
yeah well let's turn to some of the joys of raising a child with f as d i would
love for you to kind of list a few of the typical strengths that we might see in
individuals with f asd absolutely you know um the majority of them have amazing
senses of humor like really fun, fun to be around. And like sometimes people look
at me like what. And I'm like when they're in the right mood. Right. And that's
for all of us. All of us are like that, right? When I'm in a bad mood, you don't
want to be around me. Yeah. I'm not funny when I'm in a bad mood. I'm not. No,
nothing's funny when we're hangary or annoyed or in bad moods and stuff like that,
right? But creative, a lot of these kids have great artistic skills or music skills
or things like that can be common, energetic, hardworking.
Now, that is a strength we can utilize in a family setting, even in school
settings, but we have, if they have impulse control issues, we need to have high
supervision when they're doing stuff with younger children and hanging out with them.
Why do these strengths emerge inconsistently or kind of erratically across their
behaviors? Yeah. One of the biggest reasons for that is the corpus callosum. That's
a part of the brain that kind of separates the left and the right hemispheres.
to, which makes most of us assume they're just being defiant,
avoidant, lazy. I hear lots of terms like that from the families I work with,
and I used to say the same thing. And so, you know, when we understand that,
that it's, you know, because like, okay, you have taken a shower the last four days
and you've used body washing, don't stink when you get out. And now today you took
a shower, but you still stink. So you must have just whizzed through and being, you
know, and we're lazy or whatever it is. No, there's a lot of steps to taking a
shower, a lot of abstract steps because our kids are really concrete, right? And so
today, for whatever reason, that might not have been firing right in their brain and
they didn't do that, right? So it's same thing with emptying the dishwasher, whatever
it is. We know that they're capable of doing it. And if there is a moment when
they are not, we have to figure out, is this a can't or is it a won't? Right.
And what we assume is that it's a won't. Right now, they're just being a little
naughty stinker, right? This is what we assume. And instead, give them grace and
just assume right now things are not buffering correctly in the brain and just move
on. And you know what? And say, you know what? Let's empty the dishwasher together.
Yeah. You know, it's going to take less than two minutes probably, especially if
you're doing it together. But you might say that, but they might not be in a brain
place where they can even do it with you. And so give them grace and say, you
know what, I'm going to give you a pass on this. Thanks for trying. You can go
listen to music and I'm going to do this. Yeah. And that goes back to those
expectations that you were talking about earlier. Readjusting our expectations and
assuming the best about our kids, assuming that it's a can't, not a won't, and
holding those loosely and flexing with the moment that's happening in front of us
instead of this overarching, this is how we always do it kind of mentality. Exactly.
It strikes me as I'm hearing you talk over and over and over again, I'm thinking
to myself, this requires so much more flexibility and nimbleness in parenting than I
even, and it's not like I'm unaware of FASD, than I even was aware of until I
heard you saying all of these things kind of collating together into one. Let's move
right into some practical suggestions for a strengths -based approach to how we're
raising our children with FASD. What are some of the ways that we can set up
relationships and a culture or a tone in our home to set our kids up for success
at home? Well, you know, again, moving away from consequence, punishment,
the, you know, the things that we say even, I just last night when I was leading
a group coaching call, I had a caregivers talk about how, you know,
He's 18, their 18 -year -old son, and, you know, it was hanging out with some new
girl. He's been struggling with a lot of partying and a lot of not -great behaviors.
And the mom said to him really innocently, oh, is this a new girl?
And it set him off and this and that. And she was going on and on with this
whole thing. And I said, okay, hold on. Let's pause. Let's go back to when you
said, is this a new girl? You triggered them because that felt judgey to him,
right? So we just have to be so mindful of even the most simple, innocent question
like that, how they perceive it. Because by the time our kids are adolescence and
beyond, they are just so used to being in trouble, to be in judge,
to be in controlled, and all of that kind of stuff, that they are hypersensitive to
all of these kind of things. And this is why coaching, I've just become in the
last five or so years, such an advocate for coaching, whether it's individual
caregiver coaching or group coaching models, the FASD success program I work in is
this huge group coaching. I think I had 22 parents on the coaching call last night
at 9 p .m. And wow, do we have fun. I mean, we laugh and we talk about hard,
hard, hard things. And we come up with strategies and we all support. it's kind of
Because this is what we think. How are they ever going to function in this world
if we don't teach them how to do chores, for example, right? We honest to goodness,
we stop the whole chore thing. And I'm not saying everybody needs to, but it was
causing so much toxicity and power struggles and things like that.
So we kind of just backed off of that with our one kid. and she does great with
chores now. She's 26. She's actually doing probably better than a couple of my other
young adult kids with what her daily tasks and chores are. Now it's been a lot of
repetition and her support team. She lives in a group home in Minnesota, are working
with her on that and stuff. But it isn't going to be what we, for most of our
kids, it's not going to be the negative outcomes that we think if we kind of pull
back from that stuff. So the first strategy then would be rethinking discipline and
consequences, kind of in a holistic way. Everything that you just said is looking at
not following traditional parenting models, but finding what works for this child in
this stage that they're in right now. Oh, yeah. And Tracy, that's so important. You
said that you don't have to parent every child in your family the same, and you
probably shouldn't because every child in your family, if you have more than one, is
a unique individual human being with a different set of strengths and weaknesses. And
to parent every one of them with the exact same strategies isn't going to work,
especially in adoptive foster kinship families. So, you know, understanding that can
make a huge difference. I always recommend to families that I have that you start
talking about everybody's brain in your family, whether it's the parent, both of the
parents or one parent, how many parents there are, all of the kids, we're going to
talk about here, here's what mom's brain is really good at and here's what it
thinks at. And dad or whoever is in the family in every single kid so that if,
you know, if you have one with FASD or however many you have, so that they don't
always feel pathologized and like they are the problem. And so we normalize that we
all have different brains. And that's when then you can say, when one of them is
saying to you, well, that's not fair. How come she gets to do that or he doesn't
have to do this or whatever it is? Then what you can, you know, I always recommend
if you get on Google and search the difference between equal and fair and hit
images, you will find all of these different graphics that show visual pictures.
There's different versions of it, right people standing on boxes watching baseball
over a fence is one of them and they're different heights right and they all have
the same size box but it's not fair because the short person can't see over the
fence and so then that's an equal picture but then in the fair picture the short
guy has two boxes and you know and so he can see over the fence but the tall guy
has no boxes right so it's a there's various versions of that.
And you can print that, put it on your fridge or wherever, and point to that when
your kids are saying something isn't fair. And you say, you know what? It actually
isn't equal right now, but it is fair based on your differences. You are so good
at this and not at this or whatever, you know, so those are important conversations
to have. I had some friends many years to go being like, why are, who we're not
adoptive foster parents being like, why are you always talking about the brain? And
I'm like, why aren't you? Maybe you're the weird one. Right. Maybe you're the
problem. Yeah. Yeah. I do remember when I made that shift,
a couple of my kids have been diagnosed with ADHD. And when I made that shift and
I started saying things like, well, the way your brain is wired versus the way your
sibling's brain is wired, leads me to this conclusion and leads me to this action.
And when I was able to start talking like that, it felt like I was being more
fair in how I, because I was, you know, carrying some of that old school
traditional parenting, like, why are you treating them differently and stuff? But it
kind of released me to treat them as they needed to be treated. But then it also
kind of equipped them to say, oh, my ADHD brain does this.
Yeah. And her ADHD brain does this. We both have ADHD, but they do it differently.
Right. So I feel like that's, that's a really meaningful shift. So we've covered
rethinking discipline and consequences. We've talked about and are talking about the
developmental matches that may happen all within one child or among many children in
one family. Let's talk a little bit about another strategy that in your book you
talked about recognizing anxiety as the driver of certain behaviors. Oh,
yes. Oh, anxiety is a beast. I think, you know, we've all experienced anxiety.
We might not have diagnosable generalized anxiety disorder, but everybody's experienced
it. It could be driving down the highway and the flashing lights go on behind you
and you're like, oh, I'm getting pulled over. We have this hot flash, you know,
driving in a snow or ice storm. That used to, that's why I moved from Minnesota. I
was so sick of 50 plus years of that. No, thank you. Giving a speech, you know,
job interview. When we're anxious, our blood pressure increases, our body temperature
increases. Our heart starts to beat faster, which makes our body temperature increase.
It's why people pit out when they're having to give a speech or a job interview or
whatever it is. Our blood sugar increases and our bodies tense up. And our brain
goes on fire. And our brain is not functioning right in those moments. And what
we're often doing is we're looking up here at how do I stop this behavior right
now instead of digging deeper at how do we how do I calm the arousal or whatever
has them all jacked up in this moment and you know Dr. Mona Delahook has some
great books out there beyond behaviors and then brain body parenting and in her
first book beyond behaviors there was something she talked about where and you know
when we're looking at behaviors you know and just from a kind of negative standpoint
the question we always ask is, what's the child trying to get out of this behavior?
That's what makes us all assume it's manipulation, attention seeking control. That's
the way that we usually look at behaviors. And I try to get families to stop doing
that. It feels like it, but stop doing that. What she says, the question we should
ask when we're seeing a behavior is what is this behavior telling us about this
child's underlying neurophysiological process right now. Right. That is a brain -based
digging deeper to figure out what is going on. And so in my book,
I have an acronym that I try, that I'm trying to teach caregivers and families or
even professionals, honestly, to use. When a child is starting to have a behavior,
go through the bears acronym, B -E -A -R -S, the B stands for brain first.
You inside of your own brain need to reframe.
right now has their anxiety all up here and then whatever we're going to say or do
the r is can it have a relational component and s is a sensory intervention so i
actually just kind of created that about five years well yeah in 2020 it was during
the pandemic yeah because it was when akila had a home the first home visit that
she was able to have with us after the pandemic started. We weren't able to see
her for many months because of the shutdown and all of that kind of stuff. And we
had a big behavior in the middle of the night. And that was when I created the
Bears acronym. And it really has helped me a lot with her to not say the things
that are at the tip of my tongue that I want to say and to really kind of
approach it differently. So then the next strategy for parents to try and implement
or be mindful of is how to respond to rages and other intense emotional
dysregulation. Can you speak a little bit to that strategy? Oh, yeah.
That's a, that's like a full day training. Right. Yeah. So an overview of that
strategy. Yeah, you can give an overview. It's a hard one. And there's a chapter on
that one for sure that I would recommend. If you've got a child that's raging, I
really, I was the parent going to every appointment, every conference webinar. Well,
there wasn't really webinars in the days when I'm struggling with this very much.
But I was going to all of these in -person conferences and appointments and I'm
like, but what do I do about the raging? Right. And the professionals would say,
you know, well, figure out the triggers and avoid them. And again, you can't avoid
all of those triggers. Try to distract good advice also, but that's not going to
work every every time, and then keep yourself calm and regulated, which I'm really
good at that for the most part. I usually have about two hours in me before I
start to lose my own temper when she's reaching, which that took me years to get
to that point. And then they would say, and then call 911 if you don't feel safe,
basically. It was the only advice I got. And that was not enough. And so, so yeah,
I, you know, and it's a longer story than I have time for, but I basically learned
for that we started doing respite for teenage boys with FASD and this one young man
witnessed who used to rage. He outgrew his raging by seventh or eighth grade. So if
you got a rager by the way, or a child who rages, it will eventually decrease and
probably go away, but I can't tell you when, right? It's the keyless, she's 26 and
we've got, so 22 for her For this guy, you know, this other guy, it was seventh
or eighth grade. I have, you know, it can be all over the map. But he saw,
he saw her, she had a car rage. And he had a lot of good advice for me
afterwards. He has, he had the gift of more, he's always had the gift of more
insight than my daughter. She's starting to develop it now. But he told me a bunch
of the things I did wrong. And he, I kept telling her to calm down. and he told
me how annoying that is. And I have never thought about that in my, you know, when
I train, I always use the quote, never in the history of calming down is anyone
ever calm down by being told to calm down, right? Very true. Or chill out.
It is condescending. You know, don't repeat their name because that's going to be
annoying. When they're starting to escalate in that yellow zone or the red zone,
this is when we might point out a consequence. Oh, do not do that. We've got to
remember they're down in their survival brain in the amygdala where that fight,
flight, freeze, faun is. And when we point out a consequence, even if it's maybe
we've stopped giving consequences, but we're pointing out a natural one. Right. That
is perceived as a threat to somebody in their primitive brain. This is when they
might be threatening you or cursing at you. Let it go. don't respond to it. Don't
say you are not allowed to speak like that. Put a quarter in the square jar. None
of that because they are not in a learning brain place. Okay. And so we just have
to be mindful. You don't want to use logic because they're not good logical thinkers
when their brains are in the green zone. And when it's in yellow or red, it's
completely gone. Yeah. We want to be mindful of our eye contact and our body
language. We don't want to touch them in these moments. Again, there's going to be
an outlier. It's so it might be a family listening who's like, oh, but I need to
repeat their name or I need to. I also say don't use terms of endearment in these
moments because that doesn't feel good when I talk about if my husband and I are
in an argument and if he tells me to calm down, I'm going to be mad. If he says
my name, I'm going to be mad because you don't in conversation say somebody's name
unless you're kind of making a condescending point. Right. You know, we just have to
think about all of those kind of things. And if he calls me, honey, I'm like, I
am not you, honey right now. So you just have to think about some of those things
and how when you're upset, what feels good and what doesn't feel good, right? Right,
right. So really just being so much more mindful of the things that are really
instinctive to say to a child or adolescent when they're upset, when they're
escalating.
of these rages happen in the home or the car those are number one is a home
number two is car but some of our kids a lot of them will also do them out in
public but most of them that's not as frequent and so we just have to be mindful
of that so we want to we we had a code word in our family for other children
that you know if we said like pineapple or bagel it changed over the years that
meant okay it's getting dicey here go up to your rooms eventually we had a safety
plan with three different neighbors houses they would go to while we were
So they can't slow their brains down to use a calming strategy. They've learned in
umpteen million therapy sessions because we often over -therapies these kids.
That's what I always say. And so we've got to just stop talking, listen,
and do not respond. Like my daughter might be sitting in this, we made this mistake
forever. So I'm saying this because we screwed up and I'm trying to help people not
screw up as much as we did. But she would be like in this verbal, verbal rage and
physical too, but she'd be like, and you guys won't give me a cell phone and they
might, you know, my siblings have one. And I'd be like, well, they're appropriate.
You were inappropriate. You broke the rules. You said you wouldn't. I would sit and
don't do that. Do not bite the hook, right? Don't do it. Don't take the bait.
Just listen. And to be honest, it is a valid complaint that they don't have a cell
phone if they're 18 or 20 or 16 or whatever the age is. It is hard to be that
age in today's world and not have a cell phone, for example. So that's a legitimate
complaint. Now, she can't understand the logic right now of why she doesn't have one
because of safety and vulnerability issues. There's other examples, obviously, too. But
listen, that's a really important thing that they're sharing, but you can just listen
and you don't have to respond even. Now, if they're getting mad at you for not
responding, then you can say, I'm just kind of stressed right now and I'm trying to
keep myself calm because that's the only thing you really can control in those
moments. Right, right. So when there's been this big rupture and this big rage,
How do you suggest that parents, when it's time to move past that, begin the
process of repairing and reconnecting with this child? Yes. That is so, so important.
So once the big behavior is over, first of all, we want to be mindful that it can
take a couple of days for these kids to completely get back to baseline. Yep.
Right. For us, too, eventually, you know, we use the term trauma fog. And I can
tell you that I have, there's been times where I'm almost not functioning at my
normal for like a week after one of these big, huge stressful things.
And so we have to be mindful of that. And when we are going to, you know, kind
of come in with repair and relationship and connection and making sure that they're
in the right brain place, right? And so I, if we have a kid that is prone to
some of these challenging behaviors, we don't need to sit and hash through it every
single time. Do not make that mistake. If you have a kid who has some of these
really frequent big behaviors, we don't have to sit and process it. Do not force
them to apologize. That does nobody any good to make them apologize because it's not
even genuine genuine if it's not coming from them, right? So it doesn't. So really
we just want to find the right moment and you can't schedule it. You can't just be
like, okay, tomorrow after dinner is when we're going to do this, especially if you
tell them, because tomorrow after dinner, they're going to be in an anxiety mode
then. Right. Right. So you find them in a good brain place and you just do some
fun. Again, we don't necessarily have to process or talk about it, but do something
fun and connected with them, right? We, you know, my daughter and I we have all of
these little kind of nicknames for each other. She calls me Bertha, and I call her
Agnes. Her name is Akela. I call her Agnes. She calls me Bertha. And, you know,
we've got a couple of others. My husband and her call each other sister girl all
the time. Now, I tried to call a sister girl a few different times and I got in
trouble because that's her and dad's thing, which is awesome, right? Yeah. And so,
you know, what are these different kind of, like, fun loving things? What is it
that, what, it depends on that child and what they're kind of into, right? What can
you do with them? Akila loves jokes. And right now, one of the things she's doing
is writing her own jokes. And oh, my goodness, they make me laugh because they're
kind of so ridiculous that they're not funny sometimes. So then I laugh, you know,
but you know, so I'll be like, do you have a joke for me today? Or let's go to
your joke.
about the behavior that they had on Saturday. And you want to start it out with,
hey, you know what? I'm not mad and you're not in trouble. Like starting a lot of
these hard conversations out with that can be really helpful because, again, they
feel like they're always in trouble. Right. Because historically, they probably have
been until we changed our approach. But, you know, it's going to be really
individualized with that kid. but we can start small too. What are some little small
connecting things you can do, like whether it's nicknames? Maybe it's listening to a
fun song that you both enjoy. Maybe it's you sitting down and playing a video game
with them that you hate. Like if they're into video games, you know, we've got a
lot of our kids and adolescents are into the gaming. And I regret,
I used to sit and fight with my boys all the time about these ridiculous video
games and the amount of time. And I eventually finally learned at the very end of
their high school careers that I started to go down there and sit with them and
ask them questions and learn. And I stopped judging. I used to judge it so much.
And I stopped doing that. And I started and I, like my son, Zique, I remember a
couple of different times. He like took the headset and put it on me and had me
play with his friends and we laughed and that because I stink. I wasn't good at
it. But like what kind of little things like that can you do to build relationship
and connection? Yeah, that check in. I've found personally that when it's time to do
that kind of a repair, stepping in with a,
I'm still thinking about what happened on Saturday, and I'm so sorry that I lost my
temper. And just stopping there and dropping any other expectation for a response
back or an acknowledgement back. One of my kids, we do this, I love you,
I love you more. And then she tries to escalate it to, you know, more than French
toast or more than, you know, right now she's going after the more than the
grandbabies. And I'm like, well, I don't know. She laughs because she knows that I
don't love more than the grandbabies. But it's like that connecting point between us,
that humor between us. Oh, those little inside jokes are so important. Sweet, that's
one of Akila's a nice big one right now because several years ago, one of my
coworkers said something to me that I was sweet. And I was like, I'm nice. I'm
kind. I'm generous. But sweet doesn't really fit my personality. And Akila,
like a year or so ago, called me sweet ones. And I started laughing and I was
telling her of that story about that co -worker. And so now she says to me all the
time that I'm sweet and we both just bust up laughing. And sometimes when she's
starting to maybe get a little bit stuck on something I don't want or stuck on or
whatever, I'd be like, I'm feeling really sweet, So I'm going to, and then she
just, you know, and she busts up laughing. It just breaks the ice. Yeah.
Mm -hmm.
One final interruption. I want to tell you about the free library of courses at
Bitley slash JBF support. That's BIT .L .Y slash JBF support.
These are free courses designed to strengthen your parenting skills and they cover a
wide variety of topics of interest to anyone in our adoptive foster and kinship
community. And we thank the Jockey Being Family Foundation for allowing us to offer
these courses for free. Let's go back to our final segment of the conversation with
Barb. So parents and caregivers can worry a lot about the future that their kids
will experience. And you've alluded a lot to that in your own experience. And By
the way, I just want to say thank you so much for the vulnerability and the
openness that you've shared here for the purpose of helping other families learn. I
find that really admirable. Thanks. When our kids reach adulthood and our roles and
rights to participate in their life and in their choices changes, what are some
things that we should be thinking about to prepare for that and to navigate that?
Well, first of all, at young ages, stop using the term independence. I would like
to just wipe that from the dictionary and everybody's vocabulary because it's just
not what the goal should be. None of us are independent, right? We all have people
in our lives and things in our lives. Like if my phone didn't remind me to take
my meds and do a bunch of the stuff of the reminders I put in it, I would still
not be doing, you know, as well as I am. My husband helps me, my therapist,
you know, my doctor, my, you know, hairstylist, my male carrier, like there is a
team around me helping me to be the best version of myself. But our kids don't see
that, right? They don't see that. And so we want to move towards the term of
interdependence, interdependence, where we have a team, we have a support team around
us. And that's what, again, our kids feel so, you know, like they're the problem.
They've been in how many different therapies. They've got a case, children's mental
health case manager, a county case manager, a therapist, all of these people,
at independent living skills worker, ILS work, all of these people. And it doesn't
feel good to them because they don't see it. So we want to make it more concrete
and make them see, hey, here's who, let's sit down and look at who's on my team.
Who's on a professional athletes team or rapper, whoever it is that they idolize
who's famous maybe, let's help them see, here's all the people on their team, here's
who's on mom's team, here's who's on yours team. We want to normalize that at
younger ages and to stop talking about independence. We also, you know,
some of these kids are going to be college bound, but many of them are not
initially, right? If it took a mountain to get them to graduate high school,
why do we think they're going to be successful now, even just taking one class
without the right level of supports, right? So for many of them, they're going to
need five, seven, eight, ten years of more brain development and brain growth before
that is going to be the right idea for them. And it might never be for many of
them, post -secondary education. And that's okay. And that's a problem we have in our
school system is shoving college university level down everybody's throat now.
You know, so we want to, we want to start there. We, you know, we need to by the
time they're probably maybe 14 be trying to start having conversations and doing
local research on is guardianship maybe something we need to look into, guardianship
and conservatorship when they become 18. And so within your county or state or
wherever you live, do the research of how guardianship and the laws and statutes
work in your area. Not all of our kids need guardianship. It doesn't always have to
be the parent, too, by the way. You can find somebody else. It can be a
professional guardian or it can be somebody else in your family. it could be your
right mom has no control over that you better call lorry yep it's really important
that we identify other safe adults for our kids to trust surround them with safe
adults that they can build those kind of vulnerabilities with and allow those
vulnerabilities to just be an existing part of the relationship I've always told my
kids surround yourselves, you know, if you can't talk to mom and dad about it or,
you know, it's become too difficult to talk to mom and dad about it, I'm okay with
you talking to so -and -so or, you know, uncle or whatever. And it's even more
important in these scenarios as our kids with FASD are coming to adulthood to have
that team around them. And I love the switch of focus from independence to
interdependence. It's such a healthy way to frame how a family works.
We're all dependent upon each other, but then also going from that healthy foundation
anchoring, because that's why we get into this work, you know, adopting and fostering
and kinship care. We want to give our kids that safe foundation,
but then expanding that foundation so that they can launch out with a lot of
options at their fingertips. Exactly. So we talked that they'd be kind of at the
beginning about the heavy weight of parenting a child with FASD and the work and
the need for self -compassion. I love talking about self -care. And so specifically
for families who are raising children with FASD, let's just talk about a couple, as
we're getting ready to wrap up here, a couple of the most important parts of self
-care that we ought to be prioritizing if we are raising a child with FASD. Yeah.
And you know, this is something I've just recently kind of starting to dig into,
not self -care, but there's some other kind of alternative terms now, like community
care or group care, because you really can't do self -care alone, right? Right. I
mean, there's little things. You can do some of the little things, you know, because
sometimes self -care is, I'm going to go, Carrie Fletcher is this a friend and
mentor of mine who was the first person who taught me about FASD 20 years ago. And
I remember her once when she was doing a training, just saying, sometimes it might
mean just taking five minutes on your front porch by yourself. Like, you got to
just start small because I have families all the time. Like, I can't. I'm like, you
can do little things. You really can I don't you don't need finances for some of
the stuff there there are ways and maybe it's even just staying up or getting
waking up 30 minutes earlier than normal so you have 30 minutes to whether maybe
it's for you your self -care is watching TikTok videos for 15 minutes and just
putting on a timer because those things can be addictive yeah whatever it is but
really we want to move more towards some community care and group care and pulling
people in to help you get that care that you need because, you know,
self -care kind of like, I feel like it more helps you survive a hard day, whereas
community care helps you to survive a hard life, right? Yeah. We've got to kind of
pull in others to help us. And that's the thing that I talk about too is people
in your life want to help, whether it's friends or family, neighbors, whoever it is,
they want to help, right? But we are not great at asking for help or receiving
help because we feel like we should be independent. We also need interdependence,
right? Yep. So you need to think of what are the really hard things going on and
say to somebody in your life, whether it's a friend or family or whatever, is there
any way even once a month that you could commit to taking this kid out on a
Tuesday evening or whatever it is. Could you take a kid to an appointment for me,
right? Could you, you know, like ask, tell them where you need help and also be
okay with if they say no, right? Because that doesn't happen often, to be honest.
But, you know, people say all the time, well, let me know if I can help. I don't
say that to people anymore. I say if I know somebody is in crisis, again, a lot
of times it's over the death of a loved one, but, but it, you know, could be
other crises with maybe we're just in a huge season of challenging behaviors. I will
say, here's two things I can do for you in the next month. Which one do you want
me to do first? I can come over on a Saturday morning and clean for two hours or
whatever it is. And I say, which one do you want me to do first? And they're
like, oh, you don't have. And I'm like, but you know what? You're blessing me by
letting me help. How do you feel when you help people? I always say that my friend
Crystal here in Florida that I made, I was, I said, I want to come and watch you.
It's four young adult. They were teenagers, four teenagers with FASD with pretty
significant challenges. And I'm like, I want to come and watch your kids and let
you and your husband go take a two or a three night vacation or whatever. Get out.
Get away. And she felt so.
develop interdependence, we have to model it. Yeah. Yeah. And I always say this too.
You're not burned out because you're weak, right? You're burned out because you're
carrying too much alone. Right. Right. You cannot. If you've got a kid with these
big behaviors, you can't do it alone. And I know that often we're begging our local
support systems for help. And most areas, you don't get the help you really need
when you need it. Right. Right. And so sometimes we have to get more creative in
the next six months that you could find a weekend that you could take Akela to
give us all a break. Now, if I said to them, I need somebody on, you know, the
weekend of January 30th and everybody would always have a reason why they couldn't,
right? But if I gave them this big window and said, you find a time, everybody
said yes. Literally nobody said no to me when I did it that way. Now, you also
have to be, you know, prepare them for what could happen. Most of the time, these
kids are great for other people. And I went to my second and third tier people
because they, she wasn't comfortable with them. The more comfortable they are with
somebody, the more likely they are to have behaviors and stuff. So like aunts and
uncles are people that we see all the time, she would be more likely to have
bigger behaviors for. And they also might be a little bit burnt out with her too.
Right. Right. Especially if they're part of your regular everyday village. Yeah. Yeah.
So respite is self -care, community care. It's community group care, right? So getting
yourself those little breaks or big breaks are important. And learning what you can
offload that doesn't have to be done by you. So if that means handing off laundry
to another member of the family, even that lives right here in the house, hand
laundry off. Do grocery pickup instead of walking through the grocery store yourself.
Do grocery pickup. And while you're waiting to pick it up, read down your Kindle if
that restores you. Can you tell that's my Kindle restores me and refreshes me?
So I will, I will order my groceries. I'll go pick it up and I'll purposely go
15, 20 minutes early and either sit in the car and listen to a podcast or sit in
the car and read my book. Absolutely. Yes. Yep. Yep. Well, Barb,
thank you so much, again, for your vulnerability and your honesty and your wit and
wisdom surrounding all the issues that are related to raising kids with FASD. I
recommend her book. If you are interested, you can check out the show notes. And
thank you again for the time and care that you expressed through this whole topic
today. Yeah, my pleasure. Thanks for having me.