Andrew Houser: A SKDEAS superhero talks to us about what the diagnosis has meant to him and impacted his life

I'm so excited for this episode - we are hearing directly from one of our SKDEAS superheroes!  Andrew Houser was diagnosed with Skraban-Deardorff two years ago at the age of 17 and he tells us what having a diagnosis means to him and the importance of the support of the SKDEAS community.   Andrew was very open about his life and where he sees himself after he completes school.  

For many in our community, this is the first time hearing from someone that has been diagnosed with SKDEAS.   A huge thank you to Andrew for giving a voice to our superheroes with this conversation!

Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.

Transcript

PODCAST INTRODUCTION: EMILY: This is Emily Beauclair, and you're listening to the Smiles Included podcast, navigating through life with our rare disease superheroes. 

Hi, everybody. It's been forever since I've recorded a podcast, and I apologize. Life happens, but I am back, and I'm very excited about my guest today. I hope it makes up for the absence because I'm actually interviewing Andrew Houser, who is one of our Skraban-Deardorff superheroes. So if you listened to my last podcast with Yelena House, that's Andrew's mom, and we spoke a lot about Andrew. So he agreed to actually come on the show and give us his story. 

So I am really excited. A lot of us in the Skraban-Deardorff community know Andrew or know of Andrew or have seen his videos online, and it's a real treat to actually get to record what he has to say. I'm extremely grateful to Andrew for agreeing to participate in this podcast and sharing his side of the story and what this diagnosis means to him, because for most people, this is the first time that they're ever hearing directly from somebody that has been diagnosed with Skraban-Deardorff, and that's pretty special. So I hope his personality comes out in this podcast because it's such a joy to talk to him. He did such a great job, and we had a lot of fun recording this, so I'm just going to cut right to the interview. 

INTERVIEW

EMILY: Andrew, thank you so much for being here. I’m so excited to talk to you.

ANDREW: Thank you, Emily.

EMILY: Okay, so tell us a little bit about yourself. 

ANDREW: I live in Washington State. I am 19 years old, and I have, my mom is Yelena and my wonderful dad named Rob, and I have a brother named Nick, and he plays the piano. And I go to school at the Evergreen Transition Program. We do life skills, job training. I come back at 3 p.m, 3:30 to come back to school, no to come back home, and after that, I go for a walk with my mom. We go hiking, and I love hiking because it's exercise, it's important. Then I also research Housewives, Kardashians, sometimes the news. 

EMILY: I know your love of reality television, so I'm glad to hear you like the news as well. What else do you like to do? 

ANDREW: I like to do Marco Polo with my childhood friends. My friends are Mariah and Cooper, they are my former teachers from my Seattle school. It's called APL, it's in Seattle. So, yeah.

EMILY: Fantastic, and I hear you have, so I know you have a dog, but I hear you have strange pets. 

ANDREW: I do. 

EMILY: What else do you have other than your dog?

ANDREW: I have chickens in my backyard. 

EMILY: Do you like the chickens? 

ANDREW: Not really, but I don't like them, they're just cute animals. I don't have any feelings about them. So yeah, I have chickens. I have five chickens. No, six or five. I can't remember because they all died from the raccoons. So I lost count of how much chickens I have. So I go for a walk with my dog with my dad and my mom sometimes. And then also I have a cat named Basted and she's so cute. And I also, Michelle Obama wrote me a letter at the White House.

EMILY: Michelle Obama?

ANDREW: Wrote me a letter in the White House. 

EMILY: What? How’d that happen? 

ANDREW: So Mrs. Obama wrote me a letter in the White House because I wrote her a letter in the White House. This was in my middle school days and from my APL years, and Mrs. Obama, I wrote her a letter and she wrote me back and she replied to me and I still have it in my room. It's like a black picture frame, it’s beautiful, I love it every day. I will send you guys, I will send you pictures after the interview so you can see it. 

EMILY: Yeah.

ANDREW: And it made my day and she sent me pictures of her dogs and her family and her daughters. And she said, she wrote me a letter and that letter was very special to me and I still have it in my room. So yeah, it's just awesome that she did it. I never knew that Michelle Obama would write me a letter. 

EMILY: Yeah.

ANDREW: I never knew that, it was a surprise to me.

EMILY: Well, I guess she found you just as special as we all do Andrew. 

ANDREW: Thank you.

EMILY: So that's nice, and I know I do know you love politics. 

ANDREW: I do like politics. Yes, I think my mama told you. 

EMILY: Yeah. During some of our conversations, you have mentioned it. Which is good. You're, you're getting involved.

ANDREW: Thank you.

EMILY: Okay, so I know a lot of our kids have to go through so many therapies and we don't, we don't know what's working, what they hate, what they like, so I would like to hear from you as one of the older kids. What do you remember, like do you remember what kind of therapies you did as a kid and if there's any that you hated or liked?

ANDREW: Oh yeah, um, I did hippotherapy. I did ABA, I did physical therapy. And the hated, the most hated therapy I think Emily is probably vision therapy because I refused to wear my glasses. So I don't, I refused to wear my glasses. 

EMILY: Yeah.

ANDREW: And the doctor said oh you have to wear your glasses and one day I never came back to that therapy again.

EMILY: Okay.

ANDREW: Because he told me to wear my glasses. 

EMILY: Yeah.

ANDRE: I refused.

EMILY: And you don't wear glasses now?

ANDREW: I do, I have them in my, in my room, but I hardly ever wear them because it's so uncomfortable on my face. 

EMILY: Yeah.

ANDREW: And it's just not good. So.

EMILY: Yeah, that I understand and so I'm getting Joe into hippotherapy right now. Did you love that? 

ANDREW: Oh gosh.

EMILY: Uh oh, are you gonna say no? Hippotherapy’s the horse therapy, right? 

ANDREW: Right. 

EMILY: Yeah.

ANDREW: So there was a story there that I never told you guys before. One of the boys out there. He had seizures.

EMILY: Seizures?

ANDREW: On the horse.

EMILY: Oh.

ANDREW: And I freaked out so badly and I was like, I was crying. 

EMILY: Yeah.

ANDREW: I didn't, I did not know what was going on.

EMILY: It's scary.

ANDREW: It is, and I felt like gosh, why am I not? Because I don't want to be in and I was sad that I didn't do it more often after that because that traumatized me for the rest of my time because no one should have. I, people shouldn’t, I don't want to feel scared of people having seizures. Thank God I didn't have seizures. 

EMILY: Yeah, you're very lucky. But that, that is scary. 

ANDREW: That made me just realize that it, it made me realize, Emily, that when I, because I don't have seizures in this diagnosis, I did all of it. I did the EEG. 

EMILY: Yeah.

ANDREW: I did to check the brain, make sure you have no seizures.

EMILY: Yeah.

ANDREW: And turns out I didn't have any seizures and that's a good thing. 

EMILY: Yeah.

ANDREW: Because I didn't want it. 

EMILY: Yeah.

ANDREW: And I saw that guy who is doing the horses, the horse riding for hippotherapy. And I'm like, why am I here? 

EMILY: Yeah.

ANDREW: I got, I got scared of it. And there's no, there's no reason for me to be scared of someone who is having a…

EMILY: A seizure. 

ANDREW: Yeah, seizure. 

EMILY: They're hard to watch. Andrew, I understand. They're, they're scary. 

ANDREW: And I said to mom, I said to my mom, I don't want to come. I don't want to come back. Ever. Because it was scary. But you know, I got through it awesomely. 

EMILY: Yeah, good. 

ANDREW: You know how that happens. 

EMILY: Yeah. And here's a question I didn't prepare you for because in talking to your mom, you started speaking at around four or five. Because I think a lot of listeners are just going to be shocked at how well you speak and communicate. Because I remember that's what I was most shocked about when you called me the first time. Do you remember, do you even remember when you couldn't speak? Is that so long ago? 

ANDREW: It was a long time ago now.

EMILY: Yeah. 

ANDREW: But I remember telling myself that, I've been stuttering for a long time. 

EMILY: Stuttering? Yeah. 

ANDREW: Yeah. And it doesn't make me feel good. I feel like something is wrong with me when I'm stuttering and I can't get it together because…

EMILY: Well, I mean, I think you're doing a fantastic job. 

ANDREW: Thank you.

EMILY: So I only hope that my Joe can speak as well as you one day. Okay. But while we're on that subject, can you tell us a little bit about what school was like when you were growing up? 

ANDREW: I love that question. Thank you. School was a lot of fun. I've been, I was riding a lot of Sound Transit, and that's definitely probably the favorite memory of my time. 

EMILY? What’s a Sound Transit?

ANDREW: It's like a King County metro busses. 

EMILY: Oh, okay. Oh, so you'd ride the bus to school. Oh, okay.

ANDREW: Right, and it was fun because it was my first time riding it. 

EMILY: I'm sure. 

ANDREW: And then also my favorite teacher was Ms. Anne. She supported me, and she supported me and she also helped me. And so, yeah, that's my growing up years for my school. 

EMILY: Were you just in a regular school, like the elementary school? 

ANDREW: I was in the APL school. Microsoft families have that school. 

EMILY: Gotcha. Okay, so you are 19 now. 

ANDREW: I'm 19 now. 

EMILY: How old were you when you received the Skraban-Deardorff diagnosis?

ANDREW: Oh, gosh. 17. 

EMILY: So only two years. 

ANDREW: Yeah. Crazy. 

EMILY: Yeah, I know it is crazy. And I feel like a lot has happened over the past few months. So how did it make you feel to get a diagnosis with a name? To explain everything that you've been going through? 

ANDREW: Um, I'm happy mostly. And I also kept asking my parents for help. And I've been questioning it. I think I said, I said to my mom about, I said, do I have Down syndrome? Do I have autism? I kept asking. And I kept asking and asking and asking and asking and asking. And it took a long time for me to be asking it. So I just been asking. And I researched the people who had this syndrome. And I also been, like, I don't know, it's just interesting that now I can speak. And I'm the first person who ever can speak. And I think that's cool. But it’s emotional, it's been such a long, such a long period of my life, that I have all of this. 

EMILY: Yeah, where you didn't know.

ANDREW: Things, that I didn't know what I have. 

EMILY: Yeah. I can imagine that's, that's tough. 

ANDREW: It is. 

EMILY: Yeah. So I'm glad, I'm glad you finally learned. 

ANDREW: I know. I know. I know. Everybody told me that you have to learn about this syndrome. So. 

EMILY: Yeah. And, you know, like even reading, because I know you read, you said you read about it and you want to learn about it. Um, you know, it's, it must have been hard to read about it because it's also like you would read about kids like seizures and being developmentally delayed. Um, and hearing about all these things. But I hope in the end it's just, you know, you're happy that you find like, you know, you know what it is. Um, and then you seem to be, you know, an example of, you know, one of the higher performing kids that has Skraban-Deardorff. So I think that's really great. 

ANDREW: Thank you.

EMILY: Yeah. So we like, I, I, you know, I love talking to you because it just, it makes me, it makes me so happy to like hear words come out of your mouth and understand what you're, what you go through every day. 

ANDREW: Yeah. 

EMILY: Cause a lot of our kids are just, they have so much going on in their heads, but we have no idea what they're thinking and cause they can't tell us and you can tell us. So that's why I'm harassing you and making you talk to us today. 

ANDREW: That's okay. That's fine. Um, I just, I, I'm okay with that. 

EMILY: So speaking of like reading about it in this diagnosis and then really just like the potential that you have, what do you want to do after school? 

ANDREW: Oh, that's a good question. Probably find a job that I can fly around the world. That's been my big dream for a while. Um, I wanted to be a flight attendant, a modeling or become a teacher. Those are my three things that I want to be when I get older. 

EMILY: All, all very good. 

ANDREW: And I think I can accomplish that.

EMILY: Yes. 

ANDREW: And I think I can do it because I'm an adult and I'm handsome and polite. 

EMILY: Yes. Oh yes. You can do it if you put your mind to it. 

ANDREW: Exactly, Emily.

EMILY: I believe in you. I believe in you. 

ANDREW: That's what I'm talking about. That's what I'm saying. 

EMILY: Well, I mean, I don't know so much about the modeling, but the flight attendant and the teacher, you have to be very personable and you definitely are. So you love to talk to people. 

ANDREW: Right. Exactly. 

EMILY: So it sounds like good career choices. 

ANDREW: Yep. 

EMILY: But yeah, so, okay, so also when we're talking about like these, we call them SKDEAS kids, the Skraban-Deardorff kids. 

ANDREW: Yeah. 

EMILY: That's the name we've been giving it. Is there any advice that you have for them? 

ANDREW: Yes. My advice for them is work hard, your goals, and help others in your community. And also, that's all I have to say. 

EMILY: Yeah, no, that's good. And you mentioned helping others in the community. And I know you've sort of taken a very active role now that there's a community of Skraban-Deardorff people and, you know, other families and you've reached out and I love that you've become so active in the community to see like how can you help and you just, what did you just do on Facebook? 

ANDREW: I donated money to the Foundation. 

EMILY: Well, you didn't just donate, you raised money.

ANDREW: I raised money, sorry, I raised money to the Foundation. I raised money. It was $65, used to be $280, no, $240, used to be $240 and now it's $265. 

EMILY: $265, yeah. That's amazing. Thank you so much for working on that. I mean, that all goes to helping and like research and we really appreciate it. 

ANDREW: It was my pleasure. Anything I can do with this Skraban-Deardorff syndrome, that's my life now. 

EMILY: Yeah. 

ANDREW: And when I knew that everybody liked it, I was shocked and I was so happy because this community has been like so kind to me. I never knew how kind this community was and it made me the happiest person. I can't imagine and it just makes me really happy that I have this community and my whole life has been this way. So I just been thinking about all of these amazing kids and children that need help and that's what I'm looking for. And that's what I want to be an advocate for those kind of things. 

EMILY: Yes, thank you. And we definitely appreciate it. 

ANDREW: To help others, to help kids, and help your amazing kid Mr. Joe.

EMILY: Hopefully, hopefully you'll get to meet him one day. I would love him to meet you. 

ANDREW: I would love that. He is a cutie pie. I've been seeing his pictures on Facebook and you're getting ready for Christmas. 

EMILY: So are you getting ready for Christmas? 

ANDREW: I have a Christmas tree in my room. In my hallway. We have a Christmas tree. And so, yeah, sorry I said the wrong room. 

EMILY: Oh, it's fine. So you actually, so it's Halloween, your favorite holiday? 

ANDREW: Yes.

EMILY: Okay, because one thing we should tell everybody is you hosted a dance party around Halloween for some of the Skraban-Deardorff kids.

ANDREW: Yes, I did.

EMILY:  Because yes, because one of the things all the Skraban-Deardorff people have in common is they love music, they love to dance, you are no different, I know you love Taylor Swift. 

ANDREW: Yes, I love her new album, Anti-Hero. 

EMILY: Yes, you are big with music. So thank you for hosting the dance party. 

ANDREW: You're welcome guys, you're welcome. It was my, it was my pleasure. Hosting the Halloween party was so much fun and for such a long time I never knew people were interested in the Halloween party. And for me, I never knew that people were happy or excited but that's just like wow, I can't believe it, I'm shocked. So thank you guys for coming. 

EMILY: Thank you for hosting it. Might have to do it again next year. 

ANDREW: I'm going to someday. 

EMILY: Yeah, but you're not excited for Christmas? 

ANDREW: Kind of. All day long, presents, presents, presents. Kind of very boring but it's okay. 

EMILY: Boring? Okay. No, Andrew, can I ask you a question about your brother? How do you get along with your brother? You don't have to answer if you don't want to. 

ANDREW: It's fine, I'm going to anyway. 

EMILY: I'm asking because I have two kids and they're two years apart and I always wonder how the siblings will get along. 

ANDREW: We fight mostly. I remember a time when the 2016 election happened. I was fighting over, we were fighting over Donald Trump because I was supporting Hillary and he was supporting Donald Trump at the time. 

EMILY: Oh no.

ANDREW: And I was fighting over it and I didn't agree with it. I didn't agree with his politics and so we didn't do anything. We didn't get along. Now we have darkness in the relationship. But you know what, I think by the time I'm older, I would love my brother. I would protect him. Now I'm protecting him because when things are happening in my family, that's what you do. You protect your family and you love them and you protect them and you care about them. And when we were younger, Emily, we were good friends, I was protective of one another. We were just very beautiful friends. We would Skype each other. We do all kinds of things. Now we don't anymore. That makes me sad. But it's okay. It's siblings.

EMILY: I think that's somewhat typical of teenagers. I remember that with my sisters and then we got closer again when we got older. So hopefully you'll get over the election.

ANDREW: I know, I hope so too. 

EMILY: Yeah, but that's nice. I'm sure you'll have a good relationship. 

ANDREW: Yeah, I really hope so because it's just awesome that... 

EMILY: So before we end, is there anything else you want to tell the listeners? 

ANDREW: Yes, I want people to be happy and be glad about themselves and be knowledgeable about their syndrome and help people. And by the way, I am so excited to be in this community and be supportive. And I can't imagine what I can feel in my heart, that is the way I'm feeling inside. So I feel really supportive in this community and really, really happy. And that's what matters to me is that you guys support me and that's probably the best day of my life because I didn't have it in this community. 
I've been asking questions and learning about the syndrome. And you know, it's just been like exciting in this new place, in this new things in life. And I'm so glad that we found this community and without this community, I can't imagine. So thank you, Katie. Thank you, Matt and thank you Cara for supporting us. 

EMILY: Oh, so that's Katie Grand, Matt Deardorff and Cara Skraban. You're right. The three of them have done great things. The foundation has done a lot of great things. And I think the family meeting that we had sort of opened up the doors for all of us to actually meet and talk. And I hope that at the next one, we're all there. I hope you get to come. 

ANDREW: I hope so too. And I really want to talk to those three people about what can we do to make people feel happy and supportive in the next years or maybe like 2024 before the next meeting.

EMILY: Yeah. Yeah. You mean making like all the people that have Skraban-Deardorff feel happy? 

ANDREW: Yeah. 

EMILY: Yeah. 

ANDREW: And that is just that just makes me happy because I realize that things happen. For a reason.

EMILY: I very much agree with you that things happen for a reason. I mean, I think that I have my Joe for a reason. I think I met you for a reason. So…

ANDREW: I definitely feel like there's a community that really supported me for the past, I don't know, years. 

EMILY: Yeah. Yeah. 

ANDREW: And it’s been two years since I had the Skraban. And you know, I see a lot of results. I'm more happier in my life. I'm more proud of my syndrome. I post pictures of the diagnosis. I donate money to the foundation. What I am really proud of, by the way. 

EMILY: Oh, such a good job.

ANDREW: So I feel really, really proud of myself. And I've been really, really lucky in my years of support. And I can't imagine what they will say when you guys are listening to it when I'm done with the interview. So thank you, Emily, for this interview. I really, I am so happy to be your guest. And thank you so much for being part of this interview and interviewing with me. 

EMILY: Andrew, I will say you just, you made a dream come true. I've only been doing this podcast for a limited time, but I've always like wanted to have you on it. Ever since, ever since seeing your first cooking video on Facebook, I've been trying, I tracked your mom down. And now I got you on. And thank you so much. It means the world to me that you're here sharing your story from your side. And everybody gets to hear it directly from you.

ANDREW: It's definitely an interesting experience in my life. 

EMILY: Yeah, 

ANDREW: It’s, it's a process that I never, ever told because I am the first person who will speak. And I think that is a cool thing. I don't, I don't have any luck with it, but I am proud of my diagnosis. I feel supportive in this community. And I've been talking to a lot of my Skraban friends and trying to get their support. So it's just been really, really nice to know what they're doing and what I have, what I’m supposed to be doing in my life. So I think that when they hear it, it will be really surprised what I'm saying today. 

EMILY: Yeah. No, everybody's going to love to hear from you directly. So this is fantastic. 

ANDREW: I really think that my life is so easier now since I have the Skraban-Deardorff. Woohoo. Woohoo. Woohoo. 

EMILY: As parents, we find it tough before having a diagnosis. 

ANDREW: Right. 

EMILY: I never thought about how hard it would be on a kid to not have a community to join. 

ANDREW: The only exciting thing I'm looking forward to is definitely our next meeting. 

EMILY: Yeah. 

ANDREW: Because I have a lot of things to say about Matt Deardorff. 

EMILY: I know, your favorite. 

ANDREW: So I also have to say, so I used to have an OT. We did baking together and it was so much fun. I just enjoyed it. 

EMILY: Wait, you did what together? 

ANDREW: Baking cookies together. 

EMILY: Oh, baking cookies. Oh, yeah. 

ANDREW: It was so much fun, Emily. It was like, oh my gosh, it's so exciting and so exciting. It was just like, wow, I'm going to be excited for that many hours. 

EMILY: Yeah. Well, I mean, that's important because you spend so many hours in therapy, Andrew. My God, like all these kids. So I'm glad that it’s fun. 

ANDREW: It took a long time. 

EMILY: Yeah. I know. There's so many. Oh, man. Like, so many therapies. But so I'm glad they at least OT was fun with the baking. That's great. 

ANDREW: I know. The baking was so much fun. And also, traffic was horrible getting there and getting back. 

EMILY: Oh, yeah?

ANDREW:  It was just like, wow, why am I sitting in the car for over an hour getting back home? Gosh, it took me a long time because we have what I went to for physical therapy. PT and OT, I had to drive. My parents took me to physical therapy and I had to drive in traffic. You know, gosh, it was so long. 

EMILY: Yeah. Are you doing any therapies still now or are you all done? 

ANDREW: No, I'm all done. 

EMILY: Congratulations. 

ANDREW: We've been done for a long time now. 

EMILY: So there's light at the end of the tunnel. 

ANDREW: Exactly. There’s light at the end of the tunnel. It's just amazing that I am part of this American dream that I never ever had this American dream before because it's a beautiful thing. So what's next in life? 

PODCAST EXIT

EMILY: Thanks for listening. I hope you found today's discussion helpful in your rare journey. If there are any other topics you want me to discuss, questions you have for some guests, or if you want to be a guest in the show yourself, please reach out to me via the email included in the show description. Please also visit skdeas.org to learn more about Skraban-Deardorff and consider making a donation to help fund research to help our kids. Talk soon.