Adopting or Fostering a Child with Down Syndrome

Are you considering adopting or fostering a child with Down Syndrome? Join our conversation with Dr. Sara Williams, a developmental-behavioral pediatrician at Cincinnati Children's Hospital Medical Center. She provides developmental evaluations and follow-up care for children with a variety of neurodevelopmental disabilities, including in the Thomas Center for Down Syndrome.

In this episode, we discuss:

• What is Down syndrome?
• How common is it?
• What are the different types of Down syndrome? Is genetic testing routinely done when Down syndrome is suspected?
• What are some of the common physical traits of a person with Down syndrome? 
• What are the common developmental disabilities caused by this disorder?
• What are the common intellectual disabilities caused by this disorder?
• Is there a way to know in advance how intellectually impacted a child may be? 
• Do the symptoms differ depending on the type of Down syndrome the child has? 
• What are the common mental health issues that people with this disorder may exhibit?
• What are some ways to determine the degree of impact if you adopt a child past infancy? 
• Interventions that can help.
• How do these kids fit within the school system? What is the school system required to do?
• What are the common medical conditions that may accompany trisomy 21?
• What is the life expectancy of a person with Down syndrome?
• Is there a medical specialty that those considering adopting or fostering a child with Down syndrome should seek out?
• What are some common mental health issues and behavioral issues that may be more common in people with Down syndrome?
• How to find mental health and behavioral treatment for children and adults with Down syndrome?
• How does trauma interact with Down syndrome?
• Is attachment difficult for kids with Down syndrome who have experienced trauma?
• Are people with Down syndrome able to live independently in adulthood?
• What makes a difference in the prognosis for children with Down syndrome? 
• Why should people consider adopting or fostering a child with Down syndrome?

Resources:

• National Down Syndrome Society (list of specialized centers)
• Global Down Syndrome 
• Reece’s Rainbow 
  • National Down Syndrome Adoption Network 
  • Project Search 
• Understanding Down Syndrome 
• American Academy of Pediatrics Clinical Report: Health Supervision for Children With Down Syndrome

Transcript

Please pardon any errors, this is an automated transcript.
Dawn Davenport  0:00  
Welcome everyone to Creating a Family. Talk about foster, adoptive and kinship care. I'm Dawn Davenport. I am the host of this show, as well as the director of the nonprofit creating a family.org, today we're going to be talking about adopting or fostering a child with Down syndrome. We'll be talking with Dr Sara Williams. She is a developmental behavioral pediatrician at Cincinnati Children's Hospital Medical Center. She provides developmental evaluations and follow up care for children with a variety of neuro developmental disabilities, including in the Thomas center for Down syndrome, which is within the Cincinnati Children's Division of Developmental and Behavioral pediatrics. She is also the sister to four adopted siblings. So, Dr Williams, welcome and you have a connection to the world of adoption and foster care.

Speaker 1  0:50  
Thanks for having me. I do adoption has been near and dear to my heart for a long time.

Dawn Davenport  0:55  
All right, I'm going to just start by saying some of the basics that we need to get out of the way. And the first is that we really do try to follow the person first language mantra. And we believe that because it is preferable to say that we have a child with Down syndrome, not a downs, or I want to adopt a down, or I've been asked to foster a down, and it's important to remember that people with Down syndrome are more like us than different from us, and we want to be respectful of them as people. They're more than their diagnoses. As far as adopting a child with Down syndrome, you can do that domestically, in a private infant adoption, where the parents make a decision to place their child for adoption. Or you can adopt a child with Down syndrome from foster care, where the child was either removed from the home or the parents relinquished to foster care. And you can also adopt a child internationally who has Down syndrome. There are many countries with children with Down syndrome waiting to be adopted. And if you are a foster parent and a child with Down syndrome comes into care. You may be approached about fostering this child. If you're open to this disability, make sure that your case worker knows. And if you're interested in adopting a child with Down syndrome, either domestically or internationally, you must have a home study that specifically approves you to adopt a child with this syndrome. The main thing is to let your agency know that this is a special need you are open to when they begin the home study process. All right, now, let's jump in and talk about the basics here. Dr Williams, what is Down syndrome?

Speaker 1  2:33  
Down Syndrome is a genetic disorder, and it occurs when there's abnormal cell division. So what happens is there's an extra full or partial copy of chromosome 21 which is why you may also hear people call it Trisomy 21 three copies of chromosome 21 and then the down in Down syndrome is named after John down, who's the English physician who originally described it. Yeah,

Dawn Davenport  2:55  
people think of it as down. They say often with s Downs Syndrome, but it's actually Down syndrome, correct? That's correct. Yep, Down syndrome. Yeah. So how common is Down syndrome? And I guess we have to almost say, How common is it as far as pregnancies, and then how common is it with birth? And I'm specifically speaking of the United States,

Speaker 1  3:18  
in the US, it is one of the most common chromosomal abnormalities, usually about one in 700 to 1000 births. And then if you're looking at live births, that's about 6000 per year in the US.

Dawn Davenport  3:30  
Okay, that still isn't a huge number. I think that a number of pregnant people make a decision not to carry the pregnancy to term when they find out, and we often are able, if you have prenatal care, you're able to determine whether you have a child with trisomy 21 so the actual number that occurs in nature would be higher. I would assume that's

Speaker 1  3:52  
correct. And there might also be some medical complications that cause a pregnancy to term, like early especially if there are significant heart problems or something like that. So your number of pregnancy is going to be larger than that, 6000 live births.

Dawn Davenport  4:06  
Are there different types of Down syndrome? There

Speaker 1  4:10  
are, there are three different types. So when we think of the main Trisomy 21 with those three full copies or partial copies, that's about 95% of cases. But then there's also what's called a translocation, and that means that an extra part, or an entire chromosome, 21 it's present, but instead of being a separate chromosome, it actually is translocated or stuck to a different chromosome. And then the most rare type is called mosaicism, usually about one to 2% of individuals with Down syndrome. And that means there's a mixture, or there's a combination. So some cells in the body are going to have three copies of chromosome 21 and then others are going to have two copies.

Dawn Davenport  4:49  
Gotcha? What are some of the common physical traits of a person with Down syndrome?

Speaker 1  4:54  
Yeah, so what most people think of is the facial features they might have. Flattened mid face, especially the bridge of the nose. They also typically have low muscle tone. They are shorter than the average height. There's usually an upward slant to their eyes. And then something else that can be what we call patho mnemonic is a single deep crease across the center of the palm. Every person with Down syndrome, of course, is a unique individual. So many will possess these characteristics to different degrees, or perhaps not at all.

Dawn Davenport  5:24  
Okay, so that's the physical characteristics. What are the common developmental disabilities that are caused by this disorder? Yeah, so a lot

Speaker 1  5:33  
of children with Down syndrome are going to hit their development milestones later than other children. It's going to be in the same order, but it's not going to be within the same time frame. Because of their low muscle tone, they're probably going to be a little slower to sit up, to crawl, to walk. They often develop language skills at a slower rate, to saying their first words later, forming sentences at older ages, and their ability to speak tends to be more delayed than their ability to understand language. Toilet training may come later, and we see those delays throughout their lifespan. So this is

Dawn Davenport  6:07  
obviously going into adulthood. Is there a way to know in advance how intellectually impacted a child may be?

Speaker 1  6:16  
It's difficult to predict, especially since every individual with Down syndrome is an individual. We also don't routinely do IQ testing, so in the general population, if we're trying to guess a child skills, we might do an IQ test, and if we did that on someone with Down syndrome, it's going to give us a number, and that number would give us some information about an individual's abilities. But we find that kids with Down syndrome tend to be so much more than that estimated number, and they have to prove the numbers wrong with all they're able to do and accomplish. So what we try to focus on more is their developmental progress, to make sure that we're getting therapy started and to make sure that they're always moving forward. So

Dawn Davenport  6:56  
do the symptoms differ depending on the type of Down syndrome the child has? I'm assuming this information is available when you're considering adopting or fostering a newborn or an infant. Would a parent who is in this consideration know which of the three types the child has and and does it matter? Does a type of Down syndrome the child have give you an indication of how impacted the child may be

Speaker 1  7:21  
most of the time, it's not going to make a huge difference, because, like we talked about, almost 99% of individuals with Down syndrome are going to have either that main Trisomy type or the translocation. It's really just those with mosaic Down syndrome that might have fewer features because they have less copies of chromosome 21 that probably is information that would be available to someone interested in foster care or adoption. And if that information is not available, genetic testing is pretty widespread to get that information to them.

Dawn Davenport  7:53  
Yeah, with international adoption, I am not sure that information would be available. I think it probably really depends on the on the country. Did you know that we, in addition to this podcast, which is an hour long, we also have a short podcast that drops on the weekend called weekend wisdom. It's usually about five minutes, maybe eight minutes, max, where we answer a question that our audience submits to us. So please send us your questions. We really want to receive them. It makes it a whole lot more fun for us to be answering your questions rather than coming up with things we think you want to know. You can send your questions to info at creating a family.org or there is a link in the show notes here that you can click to also send us your questions. So now back to the interview. You've talked about some of the physical characteristics and the developmental and intellectual impairments, or potential impairments, that we would see. What about emotional Are there any particular emotional components that people with the syndrome might express?

Speaker 1  9:01  
There can be so there's a there's a misconception that individuals with Down syndrome are always going to be happy, but they experience a wide range of emotions, just like all of us, good and bad, and like all children, they can exhibit challenging behaviors. There's a wide range of severity with that, but many individuals with Down syndrome are going to face some major mental health concerns at some point during their lifetime. The most common are anxiety, obsessive compulsive disorder, some oppositional behaviors, depression, and then in my field, we're finding that autism is more common as well.

Dawn Davenport  9:35  
So autism and Do we know why autism would be more common? That's

Speaker 1  9:41  
a great question. There's so much to learn about what causes autism in general, so they don't have a perfect answer to that, yet. We do know that a lot of autism is linked to some genetic factors, and there does seem to be something about this chromosomal change that increases the likelihood of autism possibly co occurring. With adult syndrome, is

Dawn Davenport  10:01  
it harder to diagnose mental health issues and or autism? With somebody with this disorder, are there confusing things that would make it harder for you to or just even the testing might be harder? Absolutely,

Speaker 1  10:14  
it does get much more tricky because there are some delays that we expect, some difficulties with language and communication, some difficulties with what they're able to understand, that make the testing more difficult and really muddy the water as you're trying to sort out what is Down syndrome, what could arise to the level of an actual diagnosis, and I would say, particularly with autism, because a lot of individuals with intellectual disability, do some repetitive things, have some language delays, and we expect their social skills to be somewhat delayed. So trying to tease out what is more delayed than expected, what is more repetitive than expected, can be challenging and definitely difficult for the primary care provider or the pediatrician. So we definitely encourage families to look for more help when they need it. Right.

Dawn Davenport  11:04  
Speaking of looking for more help, what type of doctor should you seek if you are a parent, or, first of all, if you're a parent, considering adopting or fostering a child? One of the things we tell people is Think through if you have access to where and where you live, to the specialty you need when you're adopting a child with a special need, and the same would hold true with Down syndrome. So what should they think about as far as what type of specialty would they need to seek? Most people have their regular pediatrician. Do they need more than that? Yeah,

Speaker 1  11:40  
it's definitely good advice for families to see what they have available to them, because there can be a variety of different health problems that go along with that diagnosis of Down syndrome. You want to make sure that you've got clinicians who have some expertise in developmental disabilities and expertise in in different sub specialties too. So one of the most common physical features might be some congenital heart defects, so a good cardiologist, especially if the child might need surgery, is going to be important. Some ear nose and throat difficulties are also very common, obstructive sleep apnea, hearing loss, ear infections, they are at increased risk of seizures. So access to a neurologist, a good lung doctor, all of those can be very helpful. A lot of larger medical centers will actually put together Down Syndrome programs or Down Syndrome clinics, and with an internet search of Down syndrome clinic in your area, you can see which one is closest to you. There are also a lot of wonderful community run down syndrome associations or support groups all over the country, and they can be a great resource to try to answer that question too, where they can connect families with other families. They can get some direct recommendations on what providers are in the area.

Dawn Davenport  12:52  
I'm glad you were mentioning some of the other medical complications that can arise with people with this syndrome, you've mentioned heart issues. How common are heart issues? For those with trisomy 21

Speaker 1  13:09  
they are fairly common. So usually, about half of children will have some kind of heart issue. Some are more severe and might require multiple surgeries to fully repair the heart, and then some just need some short term monitoring and may resolve on their own. All

Dawn Davenport  13:24  
right, so we have heart which is fairly common. What is another common medical condition that may accompany Down syndrome?

Speaker 1  13:32  
Yeah, so obstructive sleep apnea is another one that's pretty common and something that can require some lifetime monitoring. What happens with that is because of the lower muscle tone and because of some airway abnormalities, smaller airways sometimes their breathing can temporarily stop while they're asleep, and that, over time, can put increased stress on the heart. So that's something where sleep studies are recommended, and a pulmonologist or an ENT would be following that child to see, do they need oxygen? Do they need CPAP? Do they need further monitoring for that?

Dawn Davenport  14:07  
Okay, so we've got sleep apnea. We've got the heart issues, potentially. What are some other you mentioned? ENT type issues associated with Ear, Nose and Throat,

Speaker 1  14:18  
right? So with those smaller ear canals, they tend to fill up with fluid more easily, and so ear infections are a lot more common. You'll talk to a lot of caregivers of kids with Down syndrome who've had multiple sets of ear tubes. Hearing loss is more common too, and we do monitor that pretty closely. Let

Dawn Davenport  14:36  
me interrupt. Is a hearing loss because of the presence of fluid, or is the hearing loss a separate issue?

Speaker 1  14:43  
Good question. It could be either or so when that fluid is persistently there, we can have a conductive hearing loss, where we just need to find a way to drain that fluid. But then sometimes they can have more of a sensory, neural hearing loss, where it's not just caused by the fluid, or they could have a combination of the two.

Dawn Davenport  14:59  
Gotcha. Do Okay, that makes sense. Any other common medical conditions that these children and adults often have,

Speaker 1  15:09  
eye issues are pretty common, where they may need glasses earlier, or where their eyes may not be perfectly aligned. You may call that like a lazy eye, or strabismus. Cataracts are more common, so we definitely recommend regular monitoring of the eyes. Seizures are more common in the Down Syndrome population. Usually, that's going to happen at younger ages or later in life, and then as they get older, Alzheimer's disease is certainly more common. Interesting,

Dawn Davenport  15:37  
all right? And as far as this is probably not of Top of Mind to somebody adopting a young child. But how do we diagnose as Alzheimer's? Is it harder to diagnose with a person with intellectual disabilities?

Speaker 1  15:50  
Yes, similar to what we talked about before, it can be difficult to sort everything out. And if you have someone where you are concerned about their memory, concerns that they are not functioning as well as they used to. We also want to make sure we rule everything else out too, before we're calling it some sort of dementia. Is it a UTI urinary tract infection? Is there something else going on that's more short term?

Dawn Davenport  16:13  
So when someone is considering especially when they're considering adoption of a child with Down syndrome, they often want to do anything they can to understand better the degree of impact that this child might have caused by this syndrome. Is there any way of doing that when you're looking at, oh, a baby or a young child,

Speaker 1  16:37  
well, you do want to learn as much as you can about what their life has been like so far, what their progress has been like so far. Just like with any time you might be considering fostering or adoption, you want to find out as much as you can about whether there might be in utero, substance exposures. You want to find out about any possible trauma. You want to find out about what their progress has been like thus far. You definitely want to know if there's ever been a loss of skills, because that could point to more medical things going on that we would need to look into more. What do

Dawn Davenport  17:10  
you mean by loss of skills? Were they they were able to do something and now are not able to That's right,

Speaker 1  17:17  
talking about younger children. Sometimes that's a red flag for autism. And then when we're talking about older children, there can be some regression that happens in Down syndrome. That's a much longer conversation, but it's something the medical community is trying to find out more about. But typically, with that kind of regression, we're talking about kids who are late elementary school, teenage, young adults, where

Dawn Davenport  17:40  
they have functioned at a certain level and then are not now, like they're sliding backwards. They're not able to do the same thing that they used to be able to do. That's

Speaker 1  17:48  
right, gotcha. It's often a medical component to that, but it does take some specialty care, some support, to kind of sort, sort through that.

Dawn Davenport  17:58  
All right, what about the life expectancy of a person with Down syndrome?

Speaker 1  18:04  
It has certainly improved a lot. It used to be back in the 1980s maybe that it was around 30 years, but now it's closer to 60, and some individuals are living even into their 70s and 80s. They're definitely living longer and healthier lives than ever before, and medical advancements have played a large role in that. I think the care for congenital heart defects has been pretty key. I was

Dawn Davenport  18:26  
just going to ask why? What has been the difference from the 80s to now? Is it primarily the heart issues?

Speaker 1  18:32  
I think that's a lot of it. Yeah, I think we are doing a better job of keeping them alive when they're younger, and gradually a better job of supporting them as they age.

Dawn Davenport  18:42  
Okay, that makes sense. So what are some interventions that can help these children and youth achieve their full potential?

Speaker 1  18:52  
Yeah, there are a lot of good interventions out there. As a developmental behavioral pediatrician, the first thing that comes to mind for me is early intervention. So every state is going to have a federally funded program that will provide therapies in the home for children with developmental delays.

Dawn Davenport  19:10  
And give me some names of those. So if that zero to three or there are what are some names that people could look up, every

Speaker 1  19:17  
state has a different name for it, but zero, of course, three Help Me Grow first steps. Those are some of the common names. Gotcha, okay. And if you were just to do an internet search of early intervention for children under three, that would probably get you where you needed to go to find the program in your state. And then, as children get older, there are therapies provided through the school system, and there are always opportunities for outpatient therapies to the access to those can vary depending on where individuals live. If they're more rural, it can be a little bit more difficult to find. And when I'm talking about therapy, there are a couple main types that I'll just describe quickly. Yeah. Place physical therapy is probably the one that people are most familiar with, and with that, we really want to lay a foundation for these kids with Down Syndrome who have these motor delays. We want to make sure they can sit, they can walk, they can run, because that's really going to open up the door for so many other opportunities to interact and to build their language. So physical therapy to work on motor skills. Occupational therapy more focuses on the smaller muscles, so the muscles in the coordination you might need to pick up a spoon or pick up a PIN. And occupational therapists can also help with feeding difficulties, or they can help with sensory processing difficulties. And then there's speech therapy as well. So speech language pathologist really help build a foundation for communication. We know most kids with Down syndrome are going to take longer to talk, and they can help really support the family as they're developing their child's language. And then we talked a little bit already about the increased risk of some behavioral difficulties or mental health difficulties, so Behavior Therapy can really help with those behavior or most emotional challenges, and help families feel more prepared and build a team.

Dawn Davenport  21:08  
What type of behavior therapies are you speaking of so

Speaker 1  21:11  
that can look like a variety of different things? Sometimes they are more focused on the family, so giving parents tools so that if their child starts to exhibit some challenging behaviors. They have kind of a toolbox to draw from of ways to interact and respond to that child. Sometimes behavior therapy can be more formal and time intensive, I think of kind of the applied behavior analysis that sometimes we talk about with children with autism, where it can be very technical, you know, making small changes to try to increase positive behaviors like social interaction and decrease negative behaviors like aggression. But for most families, it's going to be kind of a family focused program where a psychologist or a clinical social worker, it's helping them know how to manage that child's difficult behaviors,

Dawn Davenport  22:00  
and with these interventions, how effective are they at helping children and families? They

Speaker 1  22:06  
really do help. We know that the earlier we start interventions and supports, usually, the more progress that kids make. And it certainly also helps to create a team and a village around that family, so that as new difficulties pop up, they have some resources that they can turn to.

Dawn Davenport  22:26  
And I will just make a plug now, so many communities, as you mentioned earlier, have programs or have family groups. Parent run groups for children with this syndrome, and that's amazingly helpful. We see that across the board with support groups for foster parents and adoptive parents, but for the same reasons, if we can get these kids, these families, into support groups where they have other parents to talk to, and these groups are such a great resource for therapists, for doctors, for things that they have tried that have worked, as well as play groups and other things such as that,

Speaker 1  23:04  
I completely agree. They will organize events so that families can meet other families, and that family to family network can make such a big difference, especially when you're talking about troubleshooting the little things. What sippy cup worked well for you? Yeah,

Dawn Davenport  23:19  
yeah, exactly right. Are we still struggling with potty training? What worked that type of thing? Yes, they also

Speaker 1  23:27  
do tend to develop a great network so that if you are looking for a behavior therapist, a good speech therapist, all of that, they usually will have some recommendation,

Dawn Davenport  23:37  
absolutely. Is it more likely if you have a child with Down syndrome, that I'm not talking adoption, I'm talking through birth, that subsequent children may have this disorder. Or is it truly random?

Speaker 1  23:52  
It is usually a random genetic change, but the risk of that genetic change happening does increase with age. So if you've had one child with Down syndrome, your risk is going to be higher because you will be older when you have that next child. But I think it's important to say too that the majority of mothers giving birth to children with Down syndrome are under the age of 35 because that's the majority of individuals giving birth. In general, there is that one particular type of Down syndrome, the translocation where that one is inherited. So if you have delivered a child with Down syndrome the translocation type, then you are certainly at increased risk of a subsequent child having Down syndrome as well.

Dawn Davenport  24:38  
When individuals with Down syndrome reach adulthood, or adolescents and adulthood and they may become sexually active, then do they run a greater chance if they were to conceive of passing this disorder down to their offspring?

Speaker 1  24:54  
They do. It's not guaranteed, but that is part of the. Cells that they are passing on, so it does increase the risk.

Dawn Davenport  25:05  
Let me pause here to let you know about a prenatal substance exposure workshop. This is exposure to alcohol and drugs, and we're educating parents who think their child either they may know their child has been exposed to drugs or alcohol, or they have suspicions. The workshop is terrific. It's four and a half hours. It is over three different sessions. It's very practical, very geared towards giving you techniques broken out by age of the child and the behavior that you're experiencing. You could get more information at Bitly, Flash prenatal, dash exposure, dash training. That's B, i, t, dot, l, y, slash prenatal dash, exposure dash training, all right, when we were talking about interventions, that raises the issue of the school system, how do these kids fit within the school system? I public schools? Are they required to serve kids with Down syndrome.

Speaker 1  26:03  
They are they're required to serve any child and to try to make education accessible to all. What that typically will look like is when a family first interfaces with the school system, they'll ask for an evaluation. They'll ask for the school to kind of assess that child's needs, at their strengths, their challenges, so that they can match them with the appropriate supports. Most individuals with Down syndrome are going to qualify for things like speech therapy, physical therapy, occupational therapy through the school system. I think what can be more variable, especially depending on location and their resources is if the child ends up being primarily in the general classroom with other neurotypical kids, or if they are in a smaller classroom that's designed for kids with developmental disabilities, there can be a lot of variability there. And I talked to lots of families who have different preferences, I think the most important thing is that the child feels supported and that they're making progress, and I do want them to have some access to neurotypical peers, because I think there's so much that they have to teach the rest of us. I think there's also things that they benefit from learning just by watching their general peers.

Dawn Davenport  27:19  
Is it common now for these kids, or actually any child with a developmental disability, to be mainstreamed in the general classroom. Or does that depend upon how impacted the child is, how many, what their symptoms are?

Speaker 1  27:33  
It usually does really depend on their symptoms and the supports that they need. What I see most often is a combination of some classes in the general classroom, maybe things more like PE or art or music specials, lunchtime recess, and then for their academic subjects being taken into small groups or taken into a separate classroom for things like reading, math instruction. Sometimes they might have an aid someone who either works with them, one on one, or an aid that works with them and other kids in the classroom, if they need more support, if they need closer monitoring, that can be very variable to every support that we're talking about does cost money for the school system? Definitely some that really want to support kids well, but are struggling financially to provide everything they'd like to but these supports are federally mandated, so if a child qualifies for supports, they do need to be provided to the best of the school stability,

Dawn Davenport  28:36  
and parents need to know that going in, that is federally mandated that the schools have to support kids with Down syndrome. I have heard on a number of occasions where a child has significant behavioral issues, and the school then is able to say that they can't help the child because the child has too many issues, behavioral issues. What could parents do if they face that?

Speaker 1  29:03  
That's a tough one, because that can come from a variety of different places. Sometimes parents are being told that by a school that is just an experience with children with Down syndrome or children with delays of any type, and so the parent should feel empowered to kind of ask for more information before that child is sent to a different school. And what I mean by more information is they can ask for something called an FBA, a functional behavioral assessment, where the school gets a qualified professional to observe that child so that they can see, okay, what are the triggers for the difficult behaviors that we're talking about? Can we change the environment? Can we change how we respond to the child to decrease these behaviors? That's what I typically ask parents to talk to the school about when behavioral problems are starting to become more of a problem, and parents will often try to partner, too, with their medical providers. Whether it's a primary care provider or a developmental behavioral pediatrician with me, or a psychiatrist, because if the child's behavioral problems are rooted in something like ADHD or anxiety and autism just changing the environment and the response might not be enough. They may need different therapies. They may need help from medication to make them successful. And then sometimes that general that public school environment may not be the right environment. Sometimes kids do need more support, more in school therapy, than a public school might be able to provide. And so there are different processes in every district to assess, do they need a different school setting?

Dawn Davenport  30:38  
And then the public school pays for the different setting. That's fine. I'm assuming we're talking some type of private school.

Speaker 1  30:45  
Yes, oftentimes they might be private schools, or they might be a public school that is kind of designated within the district to have more behavioral supports. It can be a long process and a frustrating one, but yes, the school should be providing those additional supports even outside of where they're originally zoned.

Dawn Davenport  31:03  
You mentioned ADHD. We did not talk about that when we were talking about some of the other behavioral issues that these kids may experience. Is medication. ADHD, medication effective for children with Down syndrome. It

Speaker 1  31:18  
can be so with any child with developmental disabilities, the way that they benefit from medications isn't going to perfectly match what a child without any delays might experience from it. I often tell families in my clinic that we're going to start medications at lower dosages and we're going to adjust medications more slowly, because these kids brains do tend to metabolize the medications a little bit differently. It's not an exact science, it's a lot of trial and error. So with a good provider and with a patient family, we often can find a mixture of medications that helps that child be able to show their strengths. But it is not always a simple decision or a short process, would

Dawn Davenport  32:01  
it be safe to assume that the same different processing of medication and slowly adjusting and titrating upwards is that same approach used for medications for mental health disorders as well?

Speaker 1  32:13  
That's right. That's right. It should be. And one of the reasons that we are starting low and going slowly too is that kids with developmental disabilities can be at increased risk of side effects. So we do want to go slowly and make sure that if it's causing side effects, we can identify those, and we can adjust things or try a different medication if we need to. But in general, yes, we do want to be extra careful and extra thoughtful, and also we need to sort out where are these behaviors coming from. So just like we talked about an FBA in the school setting, we also want to have conversations with families to figure out, Is this behavior happening in all settings? Are there medical components to it, like, let's say a child has an ear infection. Yes, they're going to be irritable. They're going to throw more teeth. So we want to rule out medical things too before we walk down the pathway of giving them a different mental health diagnosis.

Dawn Davenport  33:07  
And I suspect that that what this requires is patients both from finding a medical professional who will work with you, because people with developmental disabilities are often not able to tell us about the side effect, or tell us that they've got an earache and that, you know. So it takes patients, both from the parent and the medical professionals, because we can't always identify the side effects or alternative causes of the behaviors we may be seeing. That's

Speaker 1  33:39  
right. It takes a lot of patience, a lot of careful detective work, a lot of trying to think about what their baseline is and compare these behaviors to it, and try to look at what time of day are these happening, and what setting is this happening? If we respond this way, does it get better? Does it get worse? Yeah, it is. I talk with families all the time, and I try to warn them before we start any medications. This could be slow. This will be trial and error. I'm here to support you. We're going to do our best, and if a medication is not the right fit, or if you don't like what you're seeing, then we stop it and we try something else, or we take a break. So even if in your immediate area, there's not someone who is well versed in medication management and Down syndrome that can be difficult to find, but even a good primary care provider who is open to learning and who is willing to reach out to other providers, there are some great provider networks for clinicians who take care of children and adults with Down syndrome, so even if they don't have immediate expertise that they're willing to learn, then I think that's still going to be a good fit.

Dawn Davenport  34:47  
Therapies for mental health issues have got to be more complicated with children with Down syndrome, because many of the therapies anything involving talk therapy. You would seem to me, would be more complicated. So what type of mental health therapies are effective mental health as well as behavior?

Speaker 1  35:10  
Yeah, that's a complicated question with a complicated answer, because it can often depend on exactly what we're treating and it can also depend on where you live and what you have access to, right, even in urban areas with a lot of resources getting good behavioral and mental health therapy, is an area where we're struggling across the country.

Dawn Davenport  35:31  
Is that, regardless of whether we're talking down syndrome, or you just mean in general, or do you mean specifically in general? Yeah, good point

Speaker 1  35:37  
in general, whether you have a developmental delay or not, it can be difficult to access it, difficult to get it well covered by insurance, difficult logistics of transportation and time off work. The difficulties are complicated. In general, you're correct too that some of those more talk based therapies aren't going to be quite as effective. Communicating verbally can be more difficult for these patients. So when we're talking about behaviors, specifically, if there's a therapy setting where they can be a little bit more analytical about what we call the A, B's and C's, A being the antecedent, or the environment where the behavior is happening, B being the behavior itself, and then see being the consequence, or how we react to that behavior. If they can help a family analyze those things and then respond appropriately or change the setting the behaviors are happening in, that can be very helpful. Talk to a little bit about wanting to know the trauma history for your child. Yeah, we want to make sure that places are offering trauma informed care, but we also want to make sure that the type of therapy fits the need. So play therapy may not be as great a resource for these kids. They may not really understand what's happened in the past and the goal of that type of therapy. So again, giving parents more concrete advice, looking at specific behaviors, trying specific things to make those behaviors better, is more what I would aim to find. It

Dawn Davenport  37:07  
sounds like generalizing what you're saying. Many of the therapies focus on helping the family structure an environment that helps these kids address their mental health. Are there behavioral issues that we have to focus on the the whole picture. We can't rely exclusively on but I would say that's the case with a lot of therapy that you know, especially when we're talking about not just children, but we have more impact, or we think we do anyway, that we have to look at the the totality of the picture. Any child is not functioning in a vacuum, and their behaviors are not in a vacuum. And if we I like that, the ABCs, if we look towards those, a lot of our behavioral issues can be resolved. This is irrespective of whether a child has developmental disabilities. Yeah,

Speaker 1  37:54  
absolutely. And want to think, what if you're looking at that big picture with kids with delays, you're also trying to factor in, are the delays causing some of the behaviors? Is that child very frustrated because they wanted a specific type of cereal and they can't quite communicate to you what it is that they were hoping for? Are the communication delays causing increased frustration? Do they have a way to express what they want and what they need. Sometimes their parents are very fluent in their own personal language with the child, but then we put them in a different setting, like the school, and the school doesn't, doesn't know what that sign approximation means, or what that word approximation means. So you're absolutely right that there is a big picture we need to look at. How are the delays factoring in? How is the environment factoring and are there kind of psychosocial factors that are making things more difficult for this child? There is so much that goes into it. Many

Dawn Davenport  38:49  
of the children that our audience would be considering adopting or fostering, in addition to having Down syndrome, have also experienced some level of trauma. How does trauma impact a person with Down syndrome? That's almost too general of a question. I realize trauma can affect everyone in different ways, but I do. What I'm getting at is a person with developmental disabilities the way they process trauma. Is it different? Are the symptoms of the trauma different?

Speaker 1  39:21  
Would say there's going to be some ways where they are very similar to the general population, and then in some ways where they're going to be different because of some of those communication difficulties and and foundational delays. How children interact in an interpersonal way can certainly be affected by trauma, and can also be affected by developmental delays, I think, in terms of difficulties with attachment or attaching too easily, some of that is going to be similar to what you might see in other populations, but how that manifests on a day to day basis might look differently because of the. Delays

Dawn Davenport  40:00  
is attachment and the development of trust impacted with these kids.

Speaker 1  40:08  
I think it certainly is. I think, similar to any other children, it is going to be more difficult if there's a history of trauma. I think just like with any other children, if you find the right supports and if you're working as a community, I think they can still make progress, and their outlook can still be very positive, but that's certainly something that you want to have the right supports to work through, because trying to put the burden of sorting out the medical complexity, the behavioral and mental health complexities, how trauma might affect them, that that would be a lot for just one parent, so would want to make sure that they've got a network, that they have a community to support them through it all. Yes,

Dawn Davenport  40:49  
because some of these children have had multiple placements, and by the time they get to you, we would assume that all children who have had a disrupted stability in their earlier life are going to struggle with attachment, and from what if I understand you, we would think the same. We would assume that a child with Down syndrome would also that wouldn't necessarily be different, although the way they express it, or their ability to express it might be different.

Speaker 1  41:19  
And I don't think we have in depth research on that subject, so I'm more speaking from case by case experience and scenarios. But yes, I think that is likely true.

Dawn Davenport  41:30  
Are people with Down syndrome able to live independently in adulthood? And maybe we need to talk percentages here, because, as we've discussed, there's a wide range of of how this disorder expresses itself in different people.

Speaker 1  41:46  
They absolutely can. The vast majority don't live completely independently, although it certainly depends on the degree of intellectual disability that they have. Because when we're talking about intellectual disability that refers to some difficulties cognitively with what you can understand and problem solve, but also some day to day difficulties with things like self care, communication, understanding the rules of society. So when you have difficulties in both of those areas, it does often mean you're going to need more support to live independently. I think special education programs are getting better and better over time. I think there are more and more community programs that are kind of aimed at helping these individuals become more independent. So there are more people graduating from high school, even attending college, getting jobs than there ever were before. There are certainly many, many, many places where we need to continue to work on this across the board, but it is quite possible for them to live independently or in community based homes, supported living arrangements. Takes careful planning over time. It takes making sure that individual is building the skills that they would need to live independently in a successful way over time,

Dawn Davenport  43:08  
and having a supportive environment in place to provide backstop and check ins on a regular basis. Absolutely So what makes a difference in the prognosis for these kids, I

Speaker 1  43:22  
think it very much helps if we can start providing supports early the importance of early intervention, like we've mentioned, I think the family being well prepared with their expectations, with their knowledge, they don't have to be an expert in Down syndrome. There are experts out there to help them fill in those gaps, but I do want them to be informed and to be connected with a good medical home. But more than anything, a stable, loving environment is going to make such a big difference.

Dawn Davenport  43:55  
Yes, so why should? Why should someone consider adopting or fostering a child with Down syndrome, we've talked about a lot of the issues that can arise. So why should this be something that someone would consider?

Speaker 1  44:10  
There's so much I can say in response to that question. I think what really comes to the top of my mind is the individual stories and the individual people. I mentioned that kids with Down syndrome often, you might think they're not capable of something, and they prove you wrong over and over again. There are certainly challenges to fostering or adopting a child with Down syndrome, just like there are challenges with any child. And like I said, it takes a community, but I think the why is in their smiles, their amazing resiliency, their ability to self advocate for themselves and for the larger Down Syndrome Community. Think if you talk to individual families and if you talk to individuals with Down syndrome, you clearly see how these kids and these adults change their families and change their communities. Just fit better. Mm, hmm, well.

Dawn Davenport  45:02  
Dr Sarah Williams, thank you so much for being with us today to talk about adopting or fostering a child with Down syndrome. I truly appreciate your your expertise and your compassion for these kids and these

Unknown Speaker  45:16  
families. Thanks so much for having me,

Dawn Davenport  45:20  
and before you go, let me thank the jockey. Being Family Foundation, they have been a long term supporter of our organization, in general, but specifically of this podcast, and it's through their support that we can provide you with our jockey being family post adoption Education Center. These are free courses geared towards those who are actively parenting. If you're a foster parent, you can use them for CE, but even if you aren't foster parent, they're just good courses for improving your parenting. You can find them at Bitly slash j, b F, support. That's B, I T, dot, l, y slash j, b F, support, you.