Description: October is Down Syndrome Awareness Month; in this episode, join Stephanie Meredith, HDI’s Medical Outreach Director and the mother of Andy, a 22-year-old with Down syndrome. Stephanie reflects on Andy’s youth and the state of genetic testing.
Hello and thank you for tuning in to the State of HDI, a podcast of the University of Kentucky Human Development Institute. This is Patti Singleton. With me in the studio is Stephanie Meredith. Stephanie is the medical outreach director at HDI. Author, Doctoral student, mother of three, and Georgia resident. Welcome.
Thanks for having me.
First, October is Down Syndrome Awareness Month. Your son, Andy, just celebrated his 22nd birthday. What does adult life with Down syndrome look like for him right now?
Adult life right now actually looks pretty fun. He just started his first semester of college at Rhinehart University, and he’s auditing a couple of classes. He’s taking a multimedia projects class and a web design class. And what’s really great about it is he goes on Mondays and Wednesdays from 9 to 5 because he has class at 11 and two.
And so, in the middle he is able to go. He has a commuter lunch plan and he’s able to go have lunch with his friends who were on the lacrosse team with him in high school. And now they’re together at this little kind of country college up in the mountains in Georgia. So, they’re having a great time. He also works at Publix as a grocery store employee.
And he does that, you know, one or two times a week. And he also has a photography career where he travels with his dad and they take photos all over the country, which is really pretty fun for them. And then he coaches lacrosse every afternoon that he is not at school. So, he is very busy. We are very busy getting him to all the places that he needs to go.
But fortunately, he actually is also able to access the county disability bus service to get up to college, which helps a ton because I think really one of our key challenges figuring out in adulthood has been transportation. And so it’s been a big help as we figured out some of those other resources that can get us through that.
Yeah, it sounds like it, but transportation is always difficult and so having that to rely on, it’s great that Andy is in such integrated settings too. It really sounds like he’s with a great mix of people.
Oh, yeah. And really having those friends they have carried over from high school who are in college with him has been such a benefit because they’ve been able, you know, like his first day of class, they met up at the Gordy dining hall and his friend took him to when his second class was so that he knew where to go.
And they just helped to facilitate that transition. But he’s also there for them. I always try to be really careful about when we talk about this that, you know, his friends offer him help in areas, but he also offers them help in areas as well. So, they definitely support each other.
Stephanie, tell me if you could go back and give advice to younger self on your diagnosis day, what would you say?
I think what I wish I could say to my younger self is don’t get too caught up in putting so much pressure on yourself to do all the things and that, you know, there isn’t one decision that’s going to be the cataclysmic decision that’s going to make all the difference in the world. It’s a collection of all of those little things that you do along the way, because I used to put so much pressure on myself for, oh, this IEP meeting.
I’ve got to make sure that I figure out exactly the right setting, or I’ve got to do all of these different exercises in order to get him to accomplish a developmental milestone, to be able to walk, to be able to talk and to do those things. And I wish that I could go back and just say, you know, the most important thing has been being fully engaged in the community together and enjoying time together and not to worry about some of those decisions within the system that they didn’t up working themselves out.
And what would you have done differently now, thinking back to when Andy was younger?
Yeah, I thought about that, and I wish that I had been more open to some creative solutions because at the time, again, I thought there was like the script for life. You know, you go to school, you go to college, you do the things and there are lots of actually different ways to have meaningful experiences, right? So, you know, there were times when maybe he was struggling in school.
And I thought, I’ve got to figure out this, like I said before, this perfect IEP. But, you know, there are also there’s homeschooling, there’s traveling, there’s lots of different ways that you could possibly solve different issues that come up. And I think that I had it in my head that there were just these kind of formulas I needed to follow.
And I wish I could have thrown those formulas out the door. Right. Because some of the best things happen when you throw some of that out the door.
What things worried you when your children were smaller that looking back, you wouldn’t worry about now?
I think I worried a lot about making sure he was doing what everyone else was doing and meeting all of the milestones. And I worried about making sure he was fitting in. And I think there’s some aspect of that where you want to give your kids the tools that they need and what they want in order to fit in, but not to be doing it, because I’m trying to kind of keep up with the Joneses.
Right? There isn’t this perfect ideal of a person that you’re trying to meet. You’re trying to help your child be the best they can be. And the thing is that there were certain things along the way like he was really into Batman in high school, and I was like, Well, is that really age appropriate and do we need to be having conversations about that?
And we did, and we kind of worked on it. And he really pushed back and he’s like, No, this is my thing. And I like it. And it turns out that was a real connection he had when he was talking to friends and other young people thought it was cool and I think I was trying to make sure he was meeting this expectation that really was something that was endearing to other people about him.
And so I think it’s important to let our kids be themselves and to, yes, help them get the tools they need to accomplish their goals, but not to feel like you have to keep up with the Joneses. In a way.
I know all three of your children who are each doing incredible work. What is something you did as a parent that you think helped your children either accidentally or on purpose?
I love that you wrote that accidentally or on purpose, because I think there are definitely two sides of that coin. Some of the things that I think we did well on purpose were that we really did try to have a lot of fun together. I mean, we went waterfall jumping and we planned we went blueberry picking together and we did all of the fun things as a family.
And I think that really helped build my kids to be close to each other. And I think also we’ve talked a lot, you know, and we talk about how their day went. And my kids know that if they get home from school and I say, how did your good day go? And they just say, Fine, I’m going to be like, Give me more details I need to know.
And so they give me kind of their hour by hour what they did. And we discussed how that went. And I think that’s been helpful. And I think also teaching another on purpose thing I did was teaching them service that we need to we need to serve other people in our community and at church. And that needs to be part of, you know, learning how to be a good human.
I think that those were on purpose things that I did. But the accidentally, I think is kind of more entertaining. I have this whole kind of series I did on being a mediocre mom of a kid with Down Syndrome. And to be honest, if you Google mediocre mom and Down syndrome, I pop up and I’m kind of proud about that in a way, because it shows a lot of what Andy accomplished despite me.
And some of that is like I was trying to manage three kids. There were times I lost track of them. There were times when I had to make them do things on their own because I couldn’t meet everybody needs at the same time. And I think that really fostered a lot of independence with them. Like I had, you know, one time where we were looking for a dress for my daughter.
And I think Andy was maybe 14 years old, and she ended up leaving the store because he was bored with his sisters. And he went into a restaurant in the in the strip mall and he ended up, you know, calling me and texting. And he’s like, Mom, I left like, okay, let’s go. And he took a picture. He couldn’t pronounce the place he was at, but he thought to take a picture of the menu and sent it to me, which then let me know where he was.
And so, I think that in some ways the fact that I wasn’t able to do sometimes everything from each kid all the time actually meant that they ended up being more independent. And I think that was pretty cool.
Absolutely incredible story. In the Brighter Futures checklists, which you helped to develop, there are many recommendations to support your child’s interests. What has been a hobby or interest that Andy has found and enjoyed throughout life?
So, the one we really picked up on when he was about eight years old was a gift he has for photography. And it came about my husband is involved in design and photography and he was on a photo shoot one day. And just to entertain Andy, he handed him a camera and we went through – when we went back and went through the pictures, we saw some that he took that were really cool.
Now, granted, it was probably like five out of a thousand, but we ended up talking to my husband’s brother, who’s a professional photographer, and we said, you know, we’re seeing a spark of a talent here. And I think we have to look for that in all of our kids, including our kids with disabilities. Like, what is that, the spark of talent and also the passion that they have for things.
And so we said, what can we do to cultivate this for him? And he said, Well, a really good strategy is to print out the pictures that he does well and hang them in his room. And so we created this kind of line in his room with clothespins where we’ve been hanging his really cool pictures. So, we printed them out.
And so he got a sense of what it looked like when he took a good picture, and that was how we started that. And then we just kept handing him the camera more often and in front of more interesting things. And now he’s to the point where, you know, at 22 years old, he can hop out of the car in front of a lighthouse that Justin is taking him to.
Justin’s my husband, and he’ll, you know, maybe take five pictures and all of them are great, right? You know, but it – it took seeing that talent and cultivating it and giving him opportunities. The other thing we did along the way is, you know, those PTA reflections contests, we would enter him into those and so he would get that feedback that people give you attention and think it’s cool when you have a talent.
And we did that as well for charity fundraisers. We would donate his photography and he would get that positive reinforcement of I can use my photography also to help people. And so I think that those are ways that you can help any kid develop a talent. But especially, again, we have to make sure that we’re looking for those in our and our kids with disabilities too. Absolutely.
We’ve already talked about Andy’s job at Publix and then also his photography business. What are some of the things you did when Andy was younger to prepare him for employment?
I think one thing that is really key both to preparing kids for employment and also if you have multiple kids making sure that there is a sense of fairness among your kids as making sure that your kid with a disability has chores. And so, they have to be obviously developmentally appropriate chores because sometimes kids are at different levels of what they can do.
But as long as they are constantly kind of being pushed to do the next level of what they’re capable of, that’s what we need to be doing. First, he had to pick up his room. He had to put dishes in the sink, that sort of thing. And then it was, All right, I got to sleep and you got to rake leaves.
It got to the point by the time he was, I think, 12 or 13, he really wanted to go to a horse riding camp. But he was too old. But they had the position for the youth helpers. So, we signed him up to be one of the youth helpers and we called it horse poop skipping camp, you know, and, but it taught him the value of work and that you get to be somewhere and interact with people when you work.
And I think the other key for us was that to prepare for employment was having him be included with his peers. And that’s really where his job story came from, because all of his friends were starting to work at the local grocery store. And so Andy was like, Well, I want to work there too. And that’s what you do when you’re 16 years old.
So that’s where he took off on his bike when he was 16 years old to go get a job. He told me on the way home from school one day he’s like, Mom, I want to go work at Publix. And I told him, I going to have to check into it. And in my head I’m thinking, I got to check on a job coach.
I got to talk to the school about how to facilitate that. And in his head, he was telling me what he was going to do that day. And so while I was making dinner, he ends up taking off on his bike. Unbeknownst to me, I didn’t find out until his sister went to go get him for dinner. And she’s like, Mom, Andy’s not here.
And I went out to the garage and his bike was gone. And so and I had two missed calls on my phone because I’d been on the phone with my mom making dinner and he said, Mom, I go to Publix, I go get a job, you come get me. And I’m like, Oh no, because it’s starting to get dark.
And they didn’t want him to ride his bike home in the dark by himself because there is a major intersection. But, you know, he got on that intersection probably 50 times with us as a family going to the biking trail. So, he knew what he was doing. And I had friends who were spying on him because they just saw him on the way home from work and they’re like, He did everything you’re supposed to do crossing the street.
And so he went in the store and he asked his friend, How do I get a job? And they sent him to the front desk, and he just got tripped up as he was on the kiosk because he struggles with reading and writing. And so that’s when he called me for help, which is totally what you should do, right when you encounter a challenge.
So, I think it was a combination too of the inclusion, the fact that he had confidence in his skills, that he knew how to get to the store. And also, once he got to the store, he knew when to ask for help, because I think it is important for our kids to know that, too.
Right. And he had this expectation that he was going to do what his friends were going to do.
As a mom, what are some of the most important skills to prepare your kids to be adults?
I think it’s really important to make sure that as we’re trying to help our kids become adults, that we, first of all, instill confidence in them, that they can do things on their own and that independence. And so, I think that requires that dignity of risk. We talk about, especially with a disability and saying, okay, where are the areas where I can pull back a little bit?
And I mean, it’s individual for each person, right? Like if I noticed that my kid is, you know, for example, oh, they’re – they’re really competent now at raking the leaves in the yard. Well, then maybe then it’s time that you can move on to maybe you could help with some other types of yard work, like pulling weeds and, and then they can do the raking on their own.
So, I think it’s looking for those opportunities to pull back as a parent so that they develop confidence in those skills that you’ve been teaching them. And I think really important skills toward independence are obviously your transportation as much as possible. It helps a lot that Andy could walk or ride his bike to work, and biking was a really hard skill to develop.
I mean, we had we had days when he was little where, you know, just teaching him to ride a tricycle was really challenging. He was using training wheels up until the time he was ten. And we were at a point where the training wheels were bending on either side. And so, we were going to do a lose the train mode camp, which is, you know, another great resource out there to work on that.
But I knew he was so close, and I said, Andy, you know, if you will try it without the training wheels, I will take you out for ice cream. And his friends were in the cul-de-sac and he goes, and my friends? And I say, okay. And so, he not only did he go like, you know, the eight feet that I thought he would, but he did, you know, a lap around the circle.
And I mean, my daughters are cheering because they knew that the training camp was going to cost us money. And they were like, Andy, you’re the hero of our families. We don’t have to pay for the camp anymore, but we would gladly would have done it. But it was kind of so I was like, you know, I will take you not only of ice cream, we will get French fries and this will be a party with your friends.
So, I – but I think it’s taking that leap of can I take those training wheels off? Right. And looking for the opportunities for when we can do it.
All right. Can you describe a time when your kids surprised you?
Yes. And I think that this I hope this is helpful for other parents of kids with disabilities, too, because I think a lot of times kids with disabilities are not given the opportunity to be leaders. And so to me, one thing that has really surprised me has been his leadership capacity and the way it really shocked us was his senior year of high school.
He had some really positive interactions in car rider line with the lacrosse coach and he approached us in the fall and said, I’d really like Andy to be on the team. And, you know, for, like I said, lacrosse kind of a violent sport. And he’s he’ll be fine. It’ll be fine. It’s okay. And he’s like and I wanted to actually get play time and I wanted to work out with the boys is like I wanted to genuinely be a member of the team.
So, I mean, this was an opportunity he was given, and we appreciated that opportunity. But then about the fourth game in, we noticed that Andy was flipping the coin, which is what the team captain does come across. And there are usually, I think, four or five team captains. And we said, why isn’t he on the field flipping the coin?
And they said, oh, well, he said, he’s a team captain now. And instead, really, it’s like, is that okay with you guys? And one of his best friends from childhood was the like the main team captain, and he’s like, yeah, you know, you he wants to do it. And then a little later in the season, we would hear the kids chanting, Woodstock, Woodstock, Andy.
And we didn’t know why they were doing this in their huddle until the senior banquet. And at the senior banquet they said, okay, Andy, do it. And he would say, Who’s your team? They say, Woodstock. Who’s going to win Woodstock? Who’s your team? Captain Andy. But at the senior banquet he said, “Who’s your coach?” And they said, “Andy!”
And that was when Andy named himself a coach, and he’s been coaching now for three years. But we have to give our kids the opportunity to be leaders or to shine in whatever way it is that they have the capacity to do right and to give them that opportunity to shock us, because I had no idea you got that in him.
And it was so fun to see it happen right in.
Those teammates are still his friends. I mean, those are some really important relationships in his life. Yeah. What is one thing you are most proud of your child with Down Syndrome – Andy – that has nothing to do with accomplishing a milestone?
This is actually a question that was asked to me when I was on a parent panel at a conference, and I loved how it made me think because I think so often, like I said earlier, we gauge, oh, you know, we’ve really made it when we’ve hit this milestone. But there are things about our kids character that has nothing to do with any of that that really can make us very proud of who they are and the moment that came to me was when we were at a basketball, my daughter’s basketball game.
And she was probably, I think, third grade at the time. And she ended up bumping into another girl and falling on the court. And you could hear her like the crack when her head ricocheted off it, off the floor. And it was really scary. And before anyone could do anything, I can’t believe I cry every time I call it that.
Andy, jump down to bleachers. And he didn’t care about the rules of the game, and he just scooped her up. And I loved that he had that just gut reaction of taking care of somebody he loves and he didn’t care about the rules. You know, I think a lot of times we also looking at the court were like, oh, can I jump down if, you know, how is this going to affect the play?
He didn’t care. And it was like the most important thing was taking care of his person. And I love that.
And I assume everyone’s okay now.
Oh, yeah. And actually, she was totally fine, but it just sounded really bad.
All right. So genetic counseling is often offered after the prenatal test when families find out if their child is likely to have Down syndrome. Down syndrome genetic testing has changed so much even in the last ten years. So, tell me where we are.
I mean, first of all, we’ve had a lot of developments in the testing itself. And there, there are blood tests now that have greater accuracy than previous tests, although there are still opportunities for false negatives and false positives. But by and large, they are more accurate than the previous tests have been. And so, families are getting information about a possible diagnosis earlier in pregnancy.
And I think one of my first concerns with that is that a lot of them aren’t getting genetic counseling because it’s happening so early and the results are being delivered maybe by an OB or a family practitioner who doesn’t have the level of training about disability that a genetic counselor would. But then also in we are finding in some of the research that we’ve done of patient diagnosis experiences that, you know, there has been progress among genetic counselors with providing like information about national and local advocacy organizations and some of the social outcomes and providing some printed resources.
But we are we’re still seeing that it’s not happening as globally as we would like to see it happening, especially by leaders in those medical communities. You know, they’re really on board. Let’s make sure that, you know, families are getting that full spectrum of information because families don’t want to just know a list of medical issues. They want to know what life is like.
And so I think that while there has been a measure of progress there, still it’s there’s still a ways to go for it in order for it to be universal, because we are still hearing some pretty negative biased diagnosis experiences. And I would say it happens even more often when it’s a provider who has not had the level of training of a genetic counselor, but it still happens all around.
So, what are some ways people in our community, including medical providers, can familiarize themselves with intellectual disabilities, including Down’s syndrome?
I think there are a number of different ways. I think, first of all, we need more training when people are in school. We need to make sure that they’re getting training on how to sensitively deliver a diagnosis, which means things like Don’t say I’m sorry and assume that it’s bad news, right? Because that’s a bias that we’re injecting into a perception about disability.
If you are a deaf person and you take a lot of pride in your culture, finding out that your child is deaf is not bad news in many ways. It’s a connection you have that you might be excited about. Right. And so I think that you have to be I think clinicians need to understand how to sensitively deliver a diagnosis, but also that other component of disability being an identity and not an outcome.
And I think there’s a whole civil right social justice component that needs to be included not only in medical education but in public education. I mean, we talk about civil rights movements, which are really important. And I think a lot of times disability is left out of that conversation. And I think that it needs to be included more often.
And then I think also if medical providers can get involved in advocacy organizations and also have parent panels or and panels of individuals with disabilities where they’re actually having those conversations with people who have lived experience, that’s really important, too.
Absolutely. So, what is your hope for genetic counseling in the future?
I would like to see that mandatory disability rights training and also how to discuss disability in the diagnosis that we had a prenatal disability education summit in May. And that was one of the big findings that came out of that from leaders in the medical community to saying this really needs to be more of a mandatory training rather than something that is piecemeal happening.
I would also really like to see medical providers be advocates with the disability community on certain issues like, you know, having, for example, health care plans, pay for hearing aids. You know let’s, let’s work together on some of these issues and also reimbursement for genetic counseling, because that’s another big problem, too, is that we don’t have universal coverage for that.
And so, I think there are areas in which we can be allies and work together, and I would really like to see more of that.
So, equity in health care is something you are very passionate about. So, tell me what that means to you.
I think it means definitely equity and access, and that requires a whole host of making sure systems are fair. But can you all get, can everybody get the health insurance they need? Can everybody get access to the health care that they need? I think that is that’s one piece of it. And, you know, with our Center for Dignity and Health Care for people with disabilities, we looked at a number of different areas in which people with disabilities sometimes encounter discrimination.
And that was, you know, we talked about prenatal testing, covered mental health, aging in end of life and organ transplant and understanding and recognizing where some of those gaps are happening. I think that’s another key component, is analyzing those systems and seeing, hey, where are we having gaps? How can we fix it? How can we make sure people have their access to medical treatment?
But I think it’s also making sure that clinicians better understand again, they’ve got to better understand disability so that they aren’t making stereotypes about people or engaging in discrimination or perpetuating some of those ideas when they’re discussing disability. And we had an incident sort of like this in our family where we went to an urgent care because and he had sat on a pencil, his sister left in a chair.
And we’ve been waiting in the room and we were being triaged. And then the doctor came in and said, “Hey, you know, will he sit still if I try to treat him?” And I said, “Yeah, he will. He’s been sitting out here in the waiting room”, and I think there was an assumption there that behaviorally he would not be able to work with him on that.
The whatever procedure was required, I have to I have to give the caveat that he would the doctor was also not a native English speaker. So, there were some communication issues with trying to make sure we were communicating together. But he said we don’t treat people like him here. And so, I didn’t know whether he meant the urgent care.
Don’t treat people with puncture wounds or if he meant we don’t treat people with Down syndrome. And he told me that we needed to go to the children’s hospital, and we’d already been waiting there for forever. And so, we actually just ended up going home and I took care of it myself. And I mean, that’s not the best outcome that we want for people.
And what I’ve since learned, too, is that when you’re in a situation like that, the health facility should provide you transportation to the next place. And I think and I also followed up with friends in the medical community who said, no, of course, they treat puncture wounds and urgent care. He was saying that they don’t treat people with Down syndrome.
And I, I think that I think there were a lot of assumptions about what it means to be a person with Down syndrome and a lot of stereotypes that ideally training and better exposure to people with disabilities can help alleviate. And I think that’s how we get better equity in health care.
It’s probably less so too close. What advice do you have for families as we celebrate Down Syndrome Awareness Month?
I think for me the key is assuming they belong. And this came up. I’m active in a lot of social media groups with younger parents, and a lot of them were kind of expressing, I, I feel like I would ask permission for my kid to be in a gymnastics class or to, you know, go to this karate thing.
And my advice to them was don’t ask permission, assume they belong. I mean, yes, we want to set up the scaffolding in place so that they’re successful. Right. And sometimes there’s a negotiation involved with that. But I think we want to put other people in the position of explaining why – why they wouldn’t belong. I mean, I think, and I think often when we just assume they belong, other people roll with it because they’re like, okay, you know, I’m just going to do that too, I think, as best as possible.
And it’s hard when you’re a new parent, but if we can convey that confidence that I am – my kid belongs anywhere that that or anybody else’s, then hopefully other people will kind of just follow our lead.
That’s fabulous. All right. Well, from one mediocre mom to another, I thank you for your time. Thank you all for listening.