Creating a Family: Talk about Adoption & Foster Care

Parenting Kids with Prenatal Exposure (Part 2): Transistioning into Adolescence and Adulthood

March 16, 2022 Creating a Family Season 16 Episode 11
Creating a Family: Talk about Adoption & Foster Care
Parenting Kids with Prenatal Exposure (Part 2): Transistioning into Adolescence and Adulthood
Show Notes Transcript

The impact of prenatal exposures to alcohol and drugs is not something that kids outgrow and the transition into adolescence and adulthood can be particularly tricky. We talk about this transition with Kathy Hotelling, a licensed clinical psychologist who specializes in Fetal Alcohol Spectrum Disorders and is the co-founder of NCFASDInformed.org. She is also the mother to a 27 year old with FASD.

In this episode, we cover:

  • Tell us a bit about your story as the mother of a child with FASD.
  • Does the impact and symptoms of prenatal exposure to alcohol change as the child ages?
  • Are the impacts different depending on whether the child has been exposed prenatally to alcohol or other drugs, such as opiates, methamphetamines, marijuana, etc?
  • We talk about the primary impacts of FASD and prenatal drug exposure and the secondary impacts? Give us some examples?
  • How can parents help prevent some of the secondary impacts?
  • How does puberty impact children with prenatal exposure?
  • How does your parenting need to change as your prenatally exposed child reaches adolescence and adulthood?
  • How to prepare your child to launch into adulthood?
  • What resources are available to help parents navigate this journey?
  • Often times adoptive, foster, and kinship parents do not know for certainty that their child was exposed prenatally to alcohol and drugs. How should they proceed?
  • Is it important to have your child officially diagnosed with FASD?
  • How do you get your child diagnosed?
  • What is the Registry of Unmet Needs or the Medicaid Waiver list and how do you get your child on this registry or list?
  • FASD Respect Act- how can people advocate?

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Please pardon the errors, this is an automatic transcription.
0:00  
Welcome everyone to creating a family talk about adoption and foster care. I'm Dawn Davenport. I am the host as well as the director of creating a family.org. Today is the second of a two part series we are doing on prenatal exposure and fetal alcohol spectrum disorders. Last week, we talked about practical tips for raising kids who have been prenatally exposed. Today we're going to be talking about transitioning to adolescents and adults. We're gonna be talking with Kathy Hotelling. She is a licensed clinical psychologist. She specializes in fetal alcohol spectrum disorders, and is the co founder of NC FASD informed.org. She is also the mother to a 27 year old with FASD. Welcome, Kathy, to creating a family. I look forward to talking with you and learning more. And I particularly want to start with your story. You are the mom of a now adult daughter. So you've certainly lived the transition to adolescence and adulthood. Tell us a little bit how old was your daughter at adoption? And were you aware at adoption that she had been prenatally exposed? And if not, how did you become suspect

1:12  
that? Thanks for having me done. I'm always delighted to talk about FASD because we are so uninformed as a country, a state of community, etc. She was adopted just over four months in Russia said, Don't worry, she was not exposed to alcohol or cigarettes, at which point I kind of rolled my eyes, having been in Russia for a very short period of time and seeing that that's what everybody was doing. My first clue beyond that, and having the suspicion going there was that when she had her physical exam, the doctor said she had microcephaly in a small head. So when we got home with her, I raised this issue to her family doc. And she was three full months early, two and a quarter pounds when she was born. She was just over seven pounds when adopted at four months. And he said oh, don't worry, she's just perfect. All of my preemies catch up by the time they're two or three. That did not happen. She had many different specialists over the years. Starting with a cardiologist and eye specialist, several therapists, this is by the age of 10, several therapists, neuro psychologist have developmental pediatrician, to gastroenterologists, a geneticist? And probably a couple more.

2:49  
Tell us I mean, you've given us the then you've given us a specialties. But what were the symptoms you receive? You mentioned the first one, which was a small head circumference. What were some of the other symptoms you were seeing that led you to seek help from these different specialists? Well, the

3:07  
gastroenterologist was extreme difficulty having a bowel movement, extreme up to, you know, more than 10 days without some significant assistance and the geneticist at that point of friend in my of mine, and I thought perhaps she had Fragile X. So we went to the geneticist for that the pediatric or their developmental pediatrician was for the slower growth, all of the symptoms that one sees and a child that is basically failure to thrive. She also had four neurologists that was movement and etc. But the reason we went was because of

4:00  
seizures, okay, and seizures can be a sign of Fetal Alcohol Spectrum and other prenatal exposures, but in particular, fetal alcohol spectrum,

4:09  
right. And that was resolved when she was a she was seizure free at nine. So she went off of those medications, but within 30 days, which is about when medicine leaves your body, she had a manic episode, so she has true bipolar disorder also. And then the psychiatrist that she saw, which I don't think I rattled off in my list, started at age five with a diagnosis of ADHD. And I said to him, I don't think this is real, quote, unquote, ADHD. That seems like there's more here. And each person I saw in each discipline, and she had OT, PT, speech language, and I said, I think she's been exposed to alcohol. And finally Google came to play with She was 10 and a half. And my psychiatrist friend and I were on Google again looking and we found a clinic that was within eight miles of just about everybody she had seen Children's Research Triangle on Michigan Avenue. And she was when I walked in with all the papers, and she had a physical exam. And I think the problem was everybody equated FASD with the facial features of FAS, and that really does a disservice only at most 10% of those with an FASD have facial features.

5:38  
Yeah, and we want to tell people is that the mother has to be consuming large quantities of alcohol during the time when the face is forming. And that's really only about a two to three week period of time. Now, it obviously, if somebody is a full blown alcoholic, they may well be drinking during that time. But still, like you say, it's only a small percentage. And we continue to hear pediatricians say, Oh, they don't have the face of FASD, you know, FFAs, therefore, I don't think you're prenatally exposed.

6:11  
Right? And Kathy Sulak, at the University of North Carolina is the one that did the ground groundbreaking research on that over her career there. And that was 17 to 22 days is when the center, the middle of the face develops. And that's when you see those symptoms are those physical signs develop? And I think it's probably how much is consumed during that period that influences she has some abnormalities, probably if they were measured as we measure today, but nothing where you would look and say, oh, yeah, she has fetal alcohol.

6:55  
were you seeing behaviors? That were I mean, something that you said that really struck a chord with me because we hear it all the time from parents, is that one of the misdiagnosis or it could be a comorbid condition you could also have, but ADHD we often hear children who and they may have ADHD, but oftentimes, some of the impact from fetal alcohol exposure as well as other prenatal exposures can mimic ADHD. Yes. So you mentioned that and that we certainly hear all the time. Were you seeing other behaviors or emotional issues that led you to believe that there's something that what you said was so perfect that there is something more going on? We often hear that from parents. That's what we hear. There's something more going on, there's something your your diagnosis, is it it doesn't explain the whole thing that I am seeing that type of thing? Do? Did you have that experience?

7:51  
Oh, definitely. And is what I call missing diagnosis and missed died for an age of 10 and a half when she was diagnosed, she had eight to 10 alphabet soup diagnoses, ADHD, Oppositional Defiant Disorder, autism, another big one. Yeah, actually, she didn't have that. But we didn't live in North Carolina. And I think if we had lived in North Carolina, she would be more likely to out that diagnosis catchment issue. Yes.

8:23  
oppositional defiant autism and ADHD anyway, because I'm, I'm listening through the misdiagnosis.

8:29  
Yeah. And, you know, depression, OCD. I mean, the list went on and on. And the last one was rad, reactive attachment disorder. And I said to the psychiatrist who I knew very well, because I treated clients with him. And I said, Bill, I don't understand. Rad. I said, she doesn't at all show that. And he said, Well, Kathy, I just didn't know what else to give her. Like, oh, my gosh, you know, I mean, I think they get frustrated. But I said to him to who is a wonderfully adept psychiatrist, but he doesn't know about FASD. And I said, I think she has been exposed to alcohol. And all of those are behavioral manifestations. But what no one really looks at is the underlying cause, which is the brain differences that are caused by the exposure to alcohol. And so you know, many people are guilty, many disciplines, including my own psychology, of looking at behavior, and that makes it behavioral. And while there are behavioral manifestations, it is a symptom. There are symptoms. They're not true blue, only depression, you know, I mean, it it's, there's an underlying cause, and people don't look for that. And that means that you have to hit have different approaches. When you find that tried and true interventions, whether those be talk therapy, or medications only deal with the problem a little bit the behaviors a little bit or not at all, then I think you know that you're looking at a brain based disability,

10:23  
and prenatal exposure, especially alcohol, but also other drugs alters the structure of the brain, it is brain damage. And that's, and that's what we're looking at. Does the impact are the symptoms of prenatal exposure to alcohol, or to drugs change as the child ages? I mean, the brain damage is there. So do you see different things at the age of two at the age of 10, at the age of 16, at the age of 20, are the same symptoms follow the child throughout their their into adolescence and adulthood?

11:01  
Well, I think even though my daughter had excellent, excellent interventions before the age of 10, and a half, she had zero to three because she was a preemie. So she got in home, vision in home, movement, etc. And she had an IEP, IEP, starting with kindergarten and had an eight, I think, because we were not changing the environment, which is really what you need to do with a brain based disability, we were moving ahead with some great things, you know, horseback riding that helped her I hand coordination, she had adaptive PE, she had all these wonderful services, that treated her coordination, difficulties, her speech, difficulties, her, you know, difficulties in a variety of realms. But how she felt about herself, I think, in a way, then results in more behaviors. And I see this with other children. So we're expecting the child to change their behaviors, they don't change their behaviors, we get frustrated, they get frustrated. And that allows the person to feel less worthy, more frustrated, so you get more behaved, quote, unquote, more behaviors, hers did not really escalate to the degree that some do. But one difference I saw was that third grade, when up to that point, if you go to a small school, everyone in the class gets invited to the birthday party. By the time third grade comes around, there's cliques, there's groups, and you may not and often are likely not to be in one of those groups. And so your invitations to parties falls off. The other thing we see is academic stalling at that point. And what I mean by that, is teachers are expecting more and more executive functioning. So you're not just being able to read, but you're being able to draw some conclusions, or think ahead about what this person might do, because he was pushed down by a friend. So you're expected to predict, you're supposed to start getting cause and effect, etc. And that's where often the executive, you see the differences in academics. Now, it's not to say that there may not be problems in academics before that, for my daughter, that was math,

13:47  
let me make summarize, what you were saying is that somewhere around the age of around 10 910 11, somewhere right in there, but nine and 10, that what we often see with these kids, is you mentioned the social that up to that point, a lot of their social is, is manipulated through parents and other adults. And therefore, we often see the social separations. And this lagging behind socially, not reading social clues, things like that, starting more and around that nine to 1011. Age Exactly. And the same thing you're saying you'll notice with academics because up to a certain point, we aren't expecting kids to use the information we're teaching them how to gain the information, teaching them how to read how to do whether whatever, but when we want them to apply it, take the information, learn it and apply it, what we call executive function. The kids with prenatal exposure and Fetal Alcohol Spectrum fetal alcohol exposure, often just and that's so what it's one of the one of the sad dichotomy is that we focus on children at birth and zero to three and we think oh, this This, you know, we really focus if we think they've had prenatal exposure, they're born dependent or, or they had, you know, we know that the mother drank during her pregnancy. But oftentimes, the more significant impacts we don't see in our kids until they hit that middle elementary age. And that sounds like with your, your daughter as well. Right? Hey, everybody, I want to let you know about a new resource that we are offering through the support of the jockey being Family Foundation. In the past, we have offered about five free post adoption courses. But through their support, we are now offering 12 free courses, these can be used for foster parent continuing education, or in service training, they can be used for post adoptive parents, we are each one hour, and they will come with a certificate of completion if you need it. And if you don't, it's still great information that is so relevant to being the best parent you can possibly be to get more information. And to find this, you can go to this website Bitly, slash JBf support, that's bi T dot L, Y, slash, j, b, f support, all of these courses are free. Thank you, Jackie being family. Alright, so you alluded to the we talk in terms of the primary impacts of FASD, and prenatal drug exposure. And the secondary impacts, the primary impacts are the damage to the brain. So So that's, that's actual structural damage. But some of the secondary impacts are those that come from being a square peg in a round hole, the world, you know, just not fitting in, and not being understood and not, and the frustration that the world experiences towards you, because you are behaving the way our acting our learning are doing the way quote, and I'm using air quotes here, normal kids do neurotypical kids do. So let's talk and you give us a talk a little about the secondary impacts that you often see with kiddos that have had prenatal exposures.

17:19  
And I think, earlier, I talked about the some of the behavioral B behaviors that bring about these other diagnoses. And that some of it, because our kids are frustrated, angry, sad, have a range of emotions, that they're really not understood, or they're not part of the environment within which they operate. And so they develop, you know, depression, they develop anxiety when going into new situations, they, they may develop some aspects of OCD, and those other Diagnosis Diagnosis that I listed for my daughter, there was a piece in there of each of those that could be applied, but it wasn't a full diagnosis. As a psychologist, I would never say, Well, this child is definitely OCD, because they meet all the criteria, you know, she'd meet one, but that doesn't make that person have that diagnosis. And so then when you're treated in a therapeutic talk, therapy, and with medication, as if that's the be all and end all and it doesn't work, then the parents in the child and the practitioner get more upset. And those bring on more secondary characteristics, secondary behaviors, and it becomes kind of a vicious circle.

18:50  
Yeah, and some of them would be you've mentioned depression, a Defiance is so yes, yeah. And those are the type of secondary impacts that we see from, from simply not having people understand what you are capable of doing and expecting things that you are not capable of doing.

19:09  
Right? I mean, if you were, if I were put in for some reason, put into an accountant's job, I would have those same feelings that could lead to those same behaviors because I was expecting being expected to do something, I have really no ability or limited ability to do. I'm a psychologist by training. I am not a numbers person. And so I think, you know, if we imagine ourselves in a position that we're not qualified for, and I'm talking about as students, as you know, for us in a job, but this is what they experience in class

19:49  
every day. I just collapse life. Yes,

19:53  
yes. Yes. And that becomes more potent as they get older. All right.

19:59  
So You mentioned that at puberty we certainly see, as with all kids, we see the hormone impact do you see in your research as well as in your with your own child, but also in your work? Do you see that a greater gap? We started talking about the gap that children start developing around the 910? Usually age, do you see that exacerbate as we reach adolescence? Or did it tend to plateau? And that doesn't particularly get worse? What do you see with the children you work with?

20:33  
Well, again, it's a spectrum. So you're going to have a variety of experiences. But I think, not being involved in typical activities in typical relationships with genders of whichever sort, boyfriend, girlfriend, partner, whatever, and becoming more aware of societal norms that, you know, people start dating at a certain time, and then they're 18. And they move out of the house, and they, you know, they get married at a certain point, and those I think, become real sticking points. And that includes driving.

21:15  
Alright, let's talk some about driving. That is certainly a rite of passage for all of our adolescents, or for most of our adolescents. How does prenatal exposure and again, I'm glad to raise the point that it is on the spectrum, regardless of the drug or the alcohol that is involved. And so when we are speaking, you could see a child that is extremely impacted, or very negatively, or very minimally impacted. So it's important to note, but how might the brain damage caused by prenatal exposure? Impact driving?

21:49  
Well, there's the impulsivity there is the lack of prediction, if you see something about to happen, what does that mean about my where my car is? And where it could be in a few seconds in relationship to those other cars that are looked like they're going to crash? So there's a real I mean, and do you have the processing speed to enable you to respond quickly enough as we often need to when we're driving. And for that reason, I often suggest to parents that they take their child to be evaluated for driving such as would happen at Duke or UNC, or any major hospital where they have facilities for people with that are older, that have had a stroke or whatever, because then it's not on the parent, you can't drive you're getting a professional evaluation.

22:48  
In a teaching hospital in any university, right, for I know you're in North Carolina, but most of our many of our lists, right, so I will say any two, Okay, excellent. All right. One of the challenges that parents face, as our as our kids reach adolescence, as it were supposed to be, our role as a parent of teens, is to be preparing them to live away from us where we need to prepare them. We are to if to be a successful parent of a team, our role is to launch them. How does that? How does the existence of brain damage caused by prenatal exposure? impact both the parents desire to launch as well as the child's ability to launch into adulthood.

23:33  
I think parents some parents are say, I don't care whether they have FASD, they're being launched, then they're out of the house at 18. wherever they might be, they're out. I don't think that's the majority. But I have heard that sentiment, the rest of us are more hesitant. I think it's preferable for the child to stay in high school up until the age of 21. If they're willing to do that, adjust, because you're helping them catch up because there's this dis maturity. I mean, they may be 18 chronologically, but where are they developmentally? You know, we usually say half to one, two thirds of their chronological age they are in terms of social developmental, learning to handle the responsibilities of life, etc. And so to say, well, 18 We're done is really not reasonable and 90% of those with an FASD are not able to live independently. Now, the levels of dependency, again, are going to vary because it's a spectrum disorder, but many are going to have to have support services within the community. At the very least, somebody come in and help them pay their bills to make sure that they're up Herman is clean, to work out a work schedule or to help them if they get into a conflict with a roommate or an employer. And that may go right up to 24/7 supervision, depending on the person,

25:18  
depending upon how greatly they're impacted. Yeah, I think that having parents shifted me the typical way we handle most of us handle children in our adolescence is we start lowering, or in an ideal world anyway, we start lowering some of our guardrails that we as parents have set up for our neurotypical kids. And so we, in ideal world, we want them to experience some independence when they're still living at home, we so that we can help guide them and acknowledge we're there to see the mistakes and, and work through them. And so we gradually, and I grant you that clinic parents don't do this. But in an ideal world, where as our children reach their adolescence, and they move in towards the end of high school, we're reducing our presence in some ways and becoming more of a support rather than they are as my kids would say, the dictator. So the but with our kids who have had prenatal exposure, again, depending on where they fall on the spectrum, we may not be able to reduce the supports we've set up.

26:27  
And in some ways, it's more important to have almost increased at least vigilance over certain things such as computer phone, etc.

26:40  
Yeah, okay, let's talk about some of that. Because that also is a rite of passage becoming ever younger. In this day and age where, you know, children as young as eight are being given phones. But certainly by the time most 1314 year olds, by the time most kids are reaching, certainly by high school, the overwhelming majority have smartphone smartphones. So how does that how does the child's having been on the spectrum for fetal alcohol spectrum disorders, or prenatal other prenatal exposures to opiates, methamphetamines, marijuana, etc? How does that impact things like the ever present phone, that's never changed hand? Well, I think

27:23  
one of the things we need to remember is that an executive function is cause and effect. And so while you may have an experience, and it has a negative impact, that doesn't mean that you learn that, nor does it learn me than that you can generalize that to situations that are similar, but not exactly the same. So the learning is very different. And therefore the internet connection becomes potentially much more dangerous. And, you know, I think supervised screentime is extremely important. I actually think it's important with all ages, but especially those with FASD, because you don't know what they're finding. And you know, it's not even just finding porn sites, not just but porn sites, I mean, you can do some finagling to, to block those. But there are other things. Some individuals within FASD are really taken by animals, and they may want to get a dog even though you have a dog and they for your backyard, even if your horse your backyard, cannot have a horse in it. And they may see this and go online and order it and it could be delivered to your house and I speak from experience.

28:50  
Yeah. Hey, guys, I have a favor to ask. We want this podcast to meet your needs, and be the best podcasts it can possibly be. And to do that, we really want to talk with you. So if we have about 10 minutes to share your feedback, please email me dawn at info at creating a family.org and then put in the subject line, talk with Dawn. That way, it will reach me and I'm going to reach out to you and schedule a time that works for you. It will only take about 10 minutes, it would really help me and us as an organization and us as a group that runs this podcast to understand more about what to life, what to don't like how we could improve how you found us that type of thing. So it won't take more than two Meza would really appreciate it. Thanks. So what resources are available to help parents navigate the adolescent years and to help them understand what their options are for? Do they have their child continue to live at home? What type of additional Post Secondary School trainings might be approved? Britt, what resources do you know of that exists to help parents?

30:04  
Well, there are college programs, including several in North Carolina, most notably pride, Greensboro, and app states that have programs for individuals with developmental disabilities, including FASD. And they are not a college degree per se, but they're living on a college campus, they're more independent than they would be living at home. And there's a lot of living skills and job skills that are taught as, as well as just being in that environment with other individuals. You know, some people can handle that with FASD. And some cannot. Now days, and there's a web of these across the United States. And you can find those on a website, which at the moment, I'm forgetting the name of but college opportunities, you Google college opportunities for Developmental Disabilities, you'll find them. And those are great alternatives. If they have a living situation. They don't always, you know, in one place, I was told, Well, you know, maybe you can find a graduate student to live with her off campus, because they have no on campus housing. And I'm like, No, that's not really good. But now more and more, there have been residence halls that have wings for people with developmental disabilities, they have arrays, etc, the things we all had when we went to college, if we went to college,

31:36  
it seems like another important aspect of this is helping your child recognize that they have a developmental disability, they have brain damage caused by prenatal exposure. That's getting that could be an awkward conversation to have. So how do you as parents, help your child recognize because they're ultimately going to have to be able to advocate and they also have to be open to resources have to be open to the supports that exist. So any suggestions there on helping our children with the parents don't want to disempower their kids, they don't want their kids to feel bad about themselves or to feel somehow lesser than or others. So how do you have that conversation in a way that is empowering,

32:23  
not disempowering? Well, you know, for me, and this is kind of my style in life is that when she got the diagnosis, I said, this is what you have. And this is what it means. You talk to them, where they are at that moment, she goes, Oh, okay. And, you know, we might have had a discussion here or there. And then, two years later, and I know exactly where we were, we were driving, and she said, Oh, my gosh, Mom, I have FASD. I said, Yes, you do. And she said, that means it's my brain and me. And that was a turning point, because she felt her behavior was her fault. She was a bad kid. And in reality, she's a really great person, adult now, she has many endearing personality traits. She has strengths. But she knows her her difficulties, her challenges, I think, then it became a whole nother understood level of understanding. And when she was 18, I started taking her to the Vancouver International Conference on FASD. And there she interacted with other individuals like her. And it was like, wonderful. And she went for a couple years, and she loved it. And then she didn't want to go anymore. And I think it that was at the point at which she thought, Okay, I don't want to focus on this. Yes, that's a label, but I need to look at other things in life. And I'm hoping she'll come back around because that's self advocacy, that is taught at different conferences, whether it be Minnesota or when they allow adults with FASD there or the Vancouver conference, and perhaps the mothers that I don't know about, I think it's really empowering and gets to that self advocacy. And of course, there are self advocacy programs through different organizations with their whether that be the various arcs through the United States or different provider agencies. An arc stands for. We only call it the arc now and it's for people with developmental and intellectual disabilities. We do not capitalize it except for the A, because the words that were used are deemed inappropriate this point.

34:57  
Okay, so the arc so just Google The Ark and you will find they they're their chapters and in every state. Alright, oftentimes adoptive foster our kin, parents don't know for certainty that their child was exposed prenatally to alcohol or drugs. They may have the we've talked about the things that are Inklings, they give them a suspicion that in fact that there, there is something more that's going on. How important is it to get your child diagnosed with FASD, or prenatal exposure?

35:30  
Well, I think it's really important because that array of other diagnoses that they get are mental health diagnoses that suspect a certain approach in terms of talk therapy in terms of medication. And that some, that's something that will go away with time, eventually, for most people, not all people, whereas a developmental disability is a disability for life, you don't outgrow it, there is no cure, there are ways that you can become more prepared more agile within the environment, but it's always going to be there. And by having a developmental disability diagnosis, you are entitled to many kinds of supports that are not available for those with mental health diagnosis. And for one that would be the Medicaid waiver, which is available in every state, it may be under different names. But once you qualify and work your way through 48 of the 50 states wait lists, you will get services for life, which include living in the community and being as much of a part of the community as you want to be and not stuck in a psychiatric residents treatment program or a group home or a state hospital or something.

37:04  
Okay, so it's important to have a medical diagnosis, not just a mental health diagnosis, even if your child has both issues, because there are more services.

37:15  
And it helps you understand that this isn't behavior to be changed in control. But that be its behavior that is coming from the structural differences in the brain, the brain differences, the brain injury, and some of those can be mitigated to some point, but not completely. So you're not going to be cured.

37:38  
So how do you get a child diagnosed in adolescence either one, or an adult, as a child diagnosed with fetal alcohol spectrum disorders and speak to it from a national perspective, not state perspective? What do you need for in getting this diagnosis,

37:58  
what you can do is go to FASD united, which used to be no fast and oh f a s. They just renamed themselves a couple of weeks ago. And they have a state by state guide to services which includes diagnosis when it is available in the state. Not all states have diagnosis, clinics that are available. Some people may know an individual physician who will diagnosed but you want to go to a diagnostic clinic to for an evaluation, you almost always have to have a referral from your family doc or pediatrician. And there will be a multi pronged approach in terms of neuropsychological review, a review of IEP and school performance or review of growth records a physical exam, there may be speech language and PT evaluations. So the best way to get it in the most informative for a parent is to get that multidisciplinary diagnosis so that they can utilize the different proactive interventions that each of those specialties recommend for challenges that that child has and also how to use their strengths.

39:35  
Exactly. We don't want to forget that our kids do have strengths and we need to focus on those. It's a challenge when you have kids with special needs of any sort. It's you want to focus on their where they're weak because you want to try to help them improve but you it's easy to overlook the fact that in the long run, developing their strengths may be the best thing we can do for them.

39:56  
And also it has to do with self esteem and how they feel about them. So

40:00  
absolutely, absolutely. What what is the registry of unmet needs? And and why is that important for kids with FASD? Or prenatal exposure? And and how do you? And how do you get your kid on it? When the registry

40:16  
gets called different things in different places in North Carolina's registry of unmet needs and other places that's waiting list, they mean the same thing. What you do is look to the place in your state, or places that will address the needs of developmental disabilities. Now, in California, for example, that is regional centers in North Carolina that is managed care organizations and local management organizations. So it depends on the state. But if you say, Minnesota developmental disabilities, what did we do before Google? assistance, you will get to where you can sign up for what's essentially a Medicaid waiver. So it entitles an individual to services that they wouldn't normally be entitled to, that's the waiver part. And it's paid for, in part by Medicaid.

41:18  
At what age can you wait until adulthood to get your child diagnosed and, and on the waitlist

41:25  
where you can, but that would not be advised. Since many, many states have huge waiting lists for ourselves, we have about 13,000 active waiver slots. In other words, people that are getting those services, and there are over 15,000 on the registry of unmet needs. Texas is even larger, Georgia has a great video about this a documentary that some parents have made to try to get those services more accessible in our state that is determined by the legislature and how many slots they will approve at any given time. And they don't have to necessarily do that every year.

42:12  
So it would be from a from the best practice standpoint, would you recommend that as soon as you are suspicious that your child may have been prenatally exposed to seek a diagnosis, to get an official diagnosis, and then to go ahead and apply to get your child on the waiting list? Because it could take years? Would that be a

42:35  
immediately that's the thing that I tell parents they need to do first? Because it's an easy thing to put off. It can be very time consuming, and life gets busy and more things happen and behaviors may escalate. But you want that paperwork done and in and you want your child on the waitlist?

42:58  
Do you have to have an official diagnosis to get on? Yes. Okay. So that's, you know, a lot of times, parents will say, Well, do I need to because dying, getting a child diagnosed, particularly with fetal alcohol spectrum disorders, is often difficult and time consuming. And it very often involves travel either. So it's, it's sometimes they we hear from parents saying, Well, can I just make the assumption that they have it and start parenting towards it? And we say, yes, you can absolutely start making changes. But don't stop there. Because there is a valid reason. And, again, this somewhat depends on how impacted your child is, where on the spectrum they are. But assuming that they have enough of they're far enough on the spectrum, that you're noticing things, they may need services throughout life, and then throughout adulthood, and they need to have those services available. And you need to get them on the list as soon as possible so that they will have the option.

43:59  
Exactly. And I always say to parents who say, Well, you know, if I don't think we're going to need that, and I say you do not know when things may change, when there may be a traumatic event or something in the child's life, that changes their whole way of being, and you don't know what's gonna happen after you're no longer here. It's best to get them on the list. Once you get the waiver to use a few of the services. I mean, there's, you know, things related to job, there's writing checks. I mean, there's some very minimal things that you can have help with. But I really think waiting or saying, you know, my child's just not going to need that because look how they're acting. I didn't think my child would need it even at the age of 10. But while I didn't even know about the waiver until she was 16, because no one ever told me but I I wouldn't have thought she wasn't going to be independent. I mean, I was working towards Getting her skills up and her social skills and helping her live the best life she could. I didn't. I was so caught up in the day to day things. I wasn't thinking about 2030 years down the road.

45:13  
Wrong. Tim, I want to pause here to let you know about one of our partners, actually one of our longtime partners, long term partners. We are so appreciative of the support of hopscotch adoptions. They are a Hague accredited international adoption agency placing kids from Armenia, Bulgaria, Croatia, Georgia, Ghana, Guiana, Morocco, Pakistan, Serbia and Ukraine. They specialize in the placement of kids with Down syndrome, and other special needs. And they also do a lot of kinship adoptions. They place kids throughout the US and they offer home study services, and post adoption services to residents in North Carolina and New York. Alright, last thing I want to do to give you a plug before we say goodbye, and that is a plug for the FASD respect act. Please tell people what it is and how they can what they need to do to

46:09  
support it. Okay, great. This act is a bipartisan act. It's been submitted to Congress in both houses by a senator and a congress person in both houses by both parties. We are doing grassroots because there is such a limited knowledge of FASD. The only way we feel this is going to be advanced is if we have grassroots support. So we're calling our senators our reps. At the federal level. This is federal legislation, and we're trying to get them to cosign and we have more and more CO signers, we have organizations they're signing up in support of we're calling or emailing. We're having group meetings. We had a group meeting here with 30 parents and the health aide of one of our senators that made a big impact he hasn't signed on yet but

47:11  
but we need a website to send people to do you do your

47:14  
yes policy, they changed the name of the because of the no fast change. But if you put FASD respect Act, there also is a Facebook page. You can tweet you can do Instagram, whatever.

47:31  
Gotcha. All right. So we need people to the old website was no fast no fas.org which they probably will have it directed so you can go they have information there on the FASD respect act. So everyone get out there we we do need support and getting that pass. It's a it is such a misdiagnosed disability. And that's the works to our disadvantage because people don't know how big it is. Thank you, Kathy hotel, so much for being with us today to talk about prenatal exposure and transitioning to adolescence and adulthood. And for everyone else. Thank you for joining us today and I will see you next week.

Transcribed by https://otter.ai