Sherri Blaik: Demystifying the ABA experience and other therapies that have benefitted her SKDEAS daughter

For those of you at the family conference, you definitely remember meeting Allie as she led us in some of the dance parties.  Her mom joins us for this latest podcast to discuss the therapies that have worked for Allie throughout the years, including ABA therapy.  I've had a lot of questions about ABA, so Sherri walked me through what the therapy looked like for Allie and how it helped in overall development.  I hope you find this interview as helpful as I did!

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Transcript

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

Welcome everybody. So, today my guest is Sherri Blaik who is the mom to two teenagers, one of which has Skraban-Deardorff. Sherri presented about potty training at the family conference and she's one of the few people I know that has had success potty training a kid with Skraban-Deardorff. So, I really wanted to bring her on to talk about that, but I actually have that in part two. 

So, this is episode 6A and then episode 6B is going to be specifically devoted to the potty-training conversation. Basically, because some people might be very interested in that and coming back to that conversation and not having to find it through this 45-minute talk with Sherri. So, for this conversation, Sherri walks us through a lot of the therapies that have been successful for her daughter, including ABA because that has come up a lot on my previous podcast and a lot of people have questions on it, including myself. So, I asked Sherri to walk us through what ABA means for her and her family. But I do want to caveat in this conversation saying that we go through a lot of therapies that Sherri does, and I even mentioned that I feel a little bit of mom guilt for not doing all of them. But I do know that we are all doing the best or have done the best that we can for our kids. 

So, that's my PSA so nobody gets down on themselves. I hope you enjoy our conversation today. 

INTERVIEW

EMILY: Hi Sherri and welcome to the podcast today. So tell us a little bit about yourself and your family. 

SHERRI: My name is Sherri Blaik. My husband Will and I have two kids. We've been married almost 21 years and a couple of months. 

We have a 16 year old son. His name is Maddox. Maddox is a junior in high-school and he's your typical high-school kid. He's very active. He loves outdoor things. Mountain biking, fishing, hiking, snow skiing. He swims on his high-school team and plays tennis. Wants to go into medicine someday. So, we started looking at colleges which is strange and nerve wracking. 

And then we have Allie who is 14 and Allie is our daughter with Skraban-Deardorff . Allie also has several other diagnosis in addition to that. And she is just our little ray of sunshine. She just is full of energy and life and loves life and the world is full of rainbows and sunshine for her. 

And then we have our silly dog Jenny who I'm hoping doesn't bark during the podcast. And that's our family. 

EMILY: So, a very full and active house, which I like to hear. And for those of us that went to the family conference, we got to meet Allie. She was just the most confident and happy child. 

So, everything you're saying really checks out. And how old was Allie when she was diagnosed with Skraban-Deardorff? 

SHERRI: She was nine when she was diagnosed with Skraban-Deardorff. But our journey was probably a little bit different because she had another diagnosis that we really went with. I can tell you a little bit about that if you'd like me to. 

EMILY: Yeah, that'd be great. 

SHERRI:  So, you know, when she was born, I had some difficulty, difficult pregnancy. When she was born, we thought everything was great. 

We were home in 24 hours. A little interesting story. She actually has a twin cousin. My sister and I had our babies 13 minutes apart, same hospital, same doctor. All my dad's birthday. So there's three birthdays in our family. They were actually due eight weeks apart, but Allie was premature. My niece was a little late. 

So anyway, the first six months, we just kind of went through life thinking everything was fine. She was always behind, but they always said it's because she was a preemie. And then around nine months, I really started seeing her miss milestones. So, we talked to our pediatrician, Jenny said, I really think it's just because she was a preemie. But we started physical therapy because she just it was real obvious physically. She just could not do things and she wanted to. 

I could see her trying. And then in a year, the doctor said something's wrong and we just don't know what it is. And so at that point, we really started this huge series of testing from so many different syndromes they tested her for. 

We did the microarray, genetic screening and everything came back fine. You know, which one way aspect was nice because I couldn't miss. Thank goodness she didn't have this, but then there was still this unknown. So, at 20 months they did an MRI and they determined she has hypoplasia of the corpus callosum, which the corpus callosum is the band of fibers that connects both sides of your brain. 

So, every single thought, every single action, everything you do passes through the corpus callosum. So, she has part of her missing. So, the doctors like this is what she has and of course like everyone that was just devastating because no one wants to hear your child is missing part of their brain. 

And so, we got referred to some specialists who honestly weren't very optimistic about her future. But you know at that point that's what we had. We did all the research. We just embraced that diagnosis. And it's a pretty big, there's a pretty big support group with that diagnosis and they have conferences. 

So, we went to the conferences and you know just went down that route. All along every time we'd meet with the new doctor they would say we feel like there's more, but we don't know what it is. And we ask multiple times along the way about the whole exome. But at the time the answer we usually got was insurance usually doesn't cover it, it's cost prohibitive, it doesn't change your day to day. So, we you know, and then at eight we started with a neurologist and she said why have we not done the whole exome? So, I gave her the answer and she said I have a grant for it. I want to do it. 

You know things are different than they were eight years ago. So, we did it. And about four months later she called me back and said she has this WDR26 mutation which didn't mean anything to me. And I said what do we do? And she said I don't know. We're going to put it in a database. You may hear from someone in six months, you may hear from them in 10 years, you may never hear. 

But this is what she has. So, again we went into a database and about probably three or four months later I got a call from the neurologist, and she said there's a group at CHOP who is doing research on this mutation. Would you like to be part of the research group? Absolutely! So, we had some meetings with doctors Skraban and Deardorff and Allie became, I think she was the eighth kid identified. So she became part of their original research group. 

And then it was probably a year later that we found out it was, you know now, identified as a syndrome. She was diagnosed at nine with Skraban -Deardorff. 

EMILY: I didn't know she was one of the first, wow. 

SHERRI: She was. She was part of that original research group. So the original study, I think, there were 14 or 16, I can't remember how many kids, but she was part of that original group. 

EMILY: You were at the first family conference as well where there weren't a lot of attendees.

SHERRI:We were, we were. And you know for us when we got the diagnosis it was actually a relief because at this point she was nine and you had already gone through so many things and at this point we knew, you know, she can learn, and we knew what she could do, and for us it was just a relief because we had all these years trying to find out the other reason and now we had it. 

And we, you know, she was older so, I'm like she's going to be able to do these things because she'd done them. But yes, we were at the first conference and we met a few of the families. It was a shorter conference, so we didn't really have as many opportunities to really get to know everyone, like we did this last one. So, this last one was just amazing and wonderful. 

EMILY: Honestly, the answer that you first got about you know there's no point in doing the Exome testings. You might not, you wouldn't change how you're treating Allie is what bothers me the most because you would never have this community that you have now. 

SHERRI: No, and I think there's got to be so many people that are just like us especially with older children who will never have an answer. And there's just such a comfort and knowing there's a reason especially because I have another child, do you know, I'm to see a carrier is, is there a carrier you know all those things that you always wonder for me it was such a piece to know we have an answer. The unknowing is hard, it was hard for many years. 

EMILY: Yeah, and then we get to benefit from, from you and everything that you learned. That's one of the big reasons you're, you know, one of the most requested guests after that family conference. Allie was probably the most advanced with her communication skills than a lot of us have seen before with this syndrome. So, I think that got some of us parents excited and I keep mentioning her confidence. 

Can you tell us about which therapies you found to be the most successful with her? 

SHERRI: Sure, and they, you know, they kind of changed through her life. There's some that we did initially that we don't do as much now. I would say that the, the one thing that has been a constant since she was two and a half that we will continue to do is ABA therapy. I've said this more than once. 

I really think it's been life changing for her. It's the way they teach you to learn and it's very hard to describe and if you google it sometimes the videos online are not a very clear indication so, I think there's, you know, that gives people a different perception. For Allie, before we started ABA we started it at two and a half. We did OT, PT, speech and we started all those at about a year. We started all of her therapies before we had the corpus callosum disorder just because she was, you know, we knew something was going on and all that was so helpful but I would get home and I'd have a list of 15 OT exercises and 25 PT exercises and I had, I couldn't get through them all and the one thing that ABA did is they helped us work through all those. in a natural way and they taught me a way to help teach her to do those things. 

So, the way ABA worked for her, is it's a lot of repetition, it's a lot of positive reinforcement, it's blocking a behavior that you don't want and replacing it with a positive behavior. So, try to think of an example. You know, if she's screaming because she wants ice cream instead of screaming, you could say in a block then say, Allie, you could say I want ice cream and it doesn't have to be verbal, it could be a sign. 

But you don't say, don't say that, don't do that, you know, instead you just say you could say or something like that. So it kind of replaces that negative, I guess, behavior with a positive and gives them a way to replace. They also included as part of their programs, I mean, all of her goals. So because they're all just part of what she needed. And so it really helped us kind of streamline and, you know, they helped me learn how to teach her sign language. I mean, a lot of it's just, she learns in a different way. 
So that was very, very helpful for us. 

EMILY: And about how many hours a week would you do ABA? 

SHERRI: Well, what we heard and what I would do is different. So when we started, and there's a lot of reasons which I won't go into, but we only were at 10 hours a week. If at it, I would do as much as you can, to be honest, if we could have had 30 or 40 as a younger, I think her life would be very different because I know what we did and where it got her. So I would say, you know, listen to your providers, see what they recommend, but it was this huge impact on her. 

EMILY: Yeah. So and thank you for walking us through that a bit more because I'm trying to understand ABA a bit because it does have a negative perception among my providers. And then I do keep hearing how it does help our kids specifically. And but I struggle with not saying the word no. 

SHERRI:We all do, trust me. I do too. I think that there is some negative out there. And I think it's just like any industry. I mean, there's some people who are probably that shouldn't be in that industry, you know. So maybe somebody had a bad experience with a therapist. You know, it doesn't mean the whole program is wrong. 

They just had a bad experience. You know, we've been very fortunate from the start to have had amazing ABA therapists who honestly were our backbone and they helped us through so many things. There's good and bad providers just like everything. 

If you're having a bad experience, it may be the one providing it. That makes any sense. So that has been really beneficial for her. Occupational therapy when she was younger was huge. 

She had a lot of food sensory issues, a lot of feeding issues. And we did that intense. But then when she got over those, we dropped that for a while. Again, she could use all the therapies every day, but sometimes it was a balance of where do we spend our time. You know, for running from therapy to therapy, there's no time to implement them. 

So some of those things we would kind of take a break from and then go back to later. Hippotherapy is something else that we started when she was two and a half and she was super tiny on this horse. She wasn't even 20 pounds. Now she does therapeutic riding. I think they're both wonderful. And for her, it really helped her physically. Like we saw huge differences in her physical development once she started ridding. 

And I kind of, I've given this example to several families who kids are interested in it. Just because of the timing, we had gone to her developmental pediatrician and they did like a developmental assessment on her physical ability. And then like the week after we started hippotherapy, I mean, just the timing just happened to work out that way. And then six months later, we went back to the developmental pediatrician. They did another assessment and she'd made 18 months of developmental progress physically over six months. 

EMILY: Wow. 

SHERRI: And the only thing we did different was add the horse. We were still doing all the other things. 
Yeah. And I just remember, doctors said, what have you done? And I said, the only thing we're doing is we're putting her on a horse 15 minutes a week. 

And that was it. And it made that much difference. So for her, I really think it helped her walk. The other thing we would notice is when we would get her off the horse, she was so much more vocal the next couple of days. Now, at the time, she didn't really have any words, but she would make the raspberries and she would, you know, just block, just talk, talk, talk, talk, talk in her own little language. And then two or three days later, she'd be quiet for three or four days. It stimulated something. So those are the two things that I, of course, all the other things absolutely helped her too. 

You know, we've done some things along the way that maybe a little, not your traditional, and I talked a little bit about this at the conference, but we've started adding yoga to our therapy program to help her with her anxiety. And that's actually been extremely beneficial, teaching her how to kind of breathe through anxiety. She does have social anxiety, which you would never be able to tell at the conference, but help her kind of learn how to self-manage some of those things. So we've tried some different things like that. 

EMILY: Did she develop anxiety later on? Because I've heard from a couple of parents that their kid has anxiety, and that's something I don't see at all with my son. So I'm wondering if it comes later. 

SHERRI: So, it kind of came and went. So when she was probably five or six, she would have anxiety going into big rooms. So like at school, going into the gymnasium was a real anxiety inducer. And we worked through that with our ABA team and worked on desensitizing her to those rooms, which looked like every day she would go in the room for a minute, and then she would get her iPad for a minute. 

And then the next day, we'd go in for two minutes. And we went through this whole program to desensitize her to those things. And then she got over it, and she did great. And then probably around nine or 10, we started seeing some of it come back, and then COVID happened. And the world as we know it changed. And we didn't do all those things for several months. And then we had some changes and some other therapies and those things. And it really came back strong. So I don't know if it was hitting puberty, if it was the change of all of a sudden we're all home and we're not doing all the things we did before for a while. But it's definitely been tough as a teenager. And I don't think we're there yet. 
We've tried medications, they did not work, so we're trying these other ways to manage it.

EMILY: And you would not know that at all upon meeting her. So it's really interesting to hear that.

SHERRI: Well, thank you. That was, she did great. And I'm so proud of her because that would have been something that would have been really hard for her a year ago. So these things we're doing, I do think they're helping. You want your answer right away and it's just going to take time. But we are trying to work through things and teach her how to manage those things. 

EMILY:Yeah. I mean, if there was one word that I could use to describe Allie, it would be confident. And so that's why I'm shocked to hear this. 

SHERRI:Well, it's interesting. And it's kind of sometimes it's situational. So yeah, if we, you know, like when we would walk into that room when she got comfortable, then her anxiety went down. But sometimes going into a new place, like with big open walls and like shiny floors, like she loves ballet, but ballet causes a lot of anxiety. And I don't know if it's a visual perception of just how her eyes are processing the space. It's hard to know because we have the brain disorder as well. So her brain doesn't process things quite the same. If that's it, I mean, we haven't been able to figure it out. But then other days, she's great. So, it's not some days are great. Some days aren't. It's not. Yeah, it's not all the time.

EMILY: So, and it also might have helped being in a room with all these other kids that have the same syndrome. It just kind of felt different. 

SHERRI: It did. And she just kept saying, everyone's like me, everyone's like me. And she just loved that because we've never had that before. 

EMILY: So, can you walk us through a little bit about how Allie communicates now and sort of how you got there? 

SHERRI: So right now, Allie communicates. She talks. Her language is a little hard to understand, I would say, probably understand 60 to 70 percent of it. She is supported with a communication device. 
She just has an iPad and we have a program on it. Her main form of communication is verbal. And then if we don't understand anything, we'll say, you know, Allie, I don't understand what you said. Use your talker, which is what we call her communication device, and she'll get on her talker and explain it to us. She also knows sign language, and that's really what she used probably the first five years of her life. She was definitely slower to talk than a lot of the kids at the conference. She really had no sounds at all until she was about four.  And then it was, you know, I don't think I heard mama until she was close to five. So she was very slow to talk. She had a lot of oral motor delays. So, we did a lot of oral motor exercises just to get her mouth strong enough to talk. And then we did sign language with her and again, talk about ABA. Once we figured out how she learns and how to teach her sign language. Once they started with her, she learned 150 signs in a month. 

So, it was like all of a sudden it was all there and she knew how to communicate it. So we did a lot of sign. I mean, when she was a baby, it was all sign. And then she would start to when she started her sounds would come in, we'd make her sign. And then she would have to approximate something. So she wanted candy. She would sign candy and then she's say “K” or something. And then we just we kind of add that additional requirement for her to get what she wanted. And then when her language came in, we kind of dropped some of the sign just because obviously it's easier for her to talk than sign. So her progress, we've done different things along the way. And when she was, a lot of times we go back to sign language. 

So when she's learning something new to read, if it's a word, she's having a hard time reading. If I do the sign, she, it's like it sticks. It's like that was her first language of sign. So we always kind of go back to sign when we learn new things. 

EMILY: Sign is not used very much in my house. Joe doesn't seem to love it. 

SHERRI: Yeah, we tried for a while and really didn't work until they taught me a way to teach her. And once I learned that way, and I had tried all the things and I'd done the videos and it, but there was a certain way that they taught us and it, it seemed to stick with her. And I think what she realized that signs had meanings, that was the hard thing is once she learned it had a meaning, kind of like the Helen Keller moment where it just went off like, oh my goodness, this means something. 

And then she would walk around and I'd be like, this is drink and we'd show her the sign. And once she realized there's a purpose to it, it really changed her ability to want to learn it. I think that's the hard thing is she didn't know why we were doing it initially. We started the device, the communication device late. And part of that was, I was afraid since her language was coming in, if we added a device that she would quit talking. And her therapist told me that wouldn't happen, took me a while to believe them. 

And, you know, looking back, I regret we did that. I wish we would have started that earlier because I do think she picked it up so quickly. I think that would have helped her to talk earlier because it never slowed her down. If anything, it took away frustration when there are things she couldn't communicate, she could tell me on her iPad. 

EMILY: We're all in with AAC in my house with a book and a device together. We're having some luck. It's just so slow going because cognitively, we still struggle a lot. We've had a lot of big wins where he understands certain words, mean things, but he still doesn't really understand that he should be using the book or the device to communicate with us. And honestly, it's probably more my fault for not using it enough with him. But he is a really good pointer. Whereas with sign, it seems like he would often struggle with moving his fingers the way that, you know, he needed to.

SHERRI: So, Allie's sign language was not completely American sign language because she had so many five motor delays as well. So we modified a lot of it. So it's a little hard because her sign language is, we call it Allie sign. And a lot of the signs were different. We just really did what she was physically able to do. So like for swing, it was really her putting her hand in the air and just going side to side, which ASL for swing is a different sign. But we just had to modify some things for her to be able to do them. But, you know, I think the key is once they realize something has meaning, that's when it really started to click with her anyway. And that just took us a while to get there. 

It's hard. But once they, I feel like once they get that and they can communicate in any way, the frustration level really went down. I saw her frustration because she would just, you know, she would get so upset and I didn't know why. 

And it's so hard as a parent because you don't know why they, you know, are they hurting today, something going on. And I remember one time she was little, I took her to the pumpkin patch and she cried the whole time. And, you know, I got in the car and I'm like, oh, she's getting sick. And we got in the car and her sippy cup was there and she took a drink of water and she was happy. And I'm like, she's cried for an hour because she was thirsty. And she couldn't tell me she was thirsty, you know, and that's just so hard. And so like the first sign we taught her was drink. Like that's a quick answer to when you're unhappy, you know, give her a bottle of water. 

But it definitely helped with the, which is why I wish we would have started the device a little earlier because I think it would have helped with some of her frustrations when she was younger. 

EMILY: Does Allie go to a regular school? 

SHERRI: She does. We have, I call it hybrid home school. So she is actually in a private school and she's at school about half the time. And she is in a classroom with all neurotypical peers. And she has an aide that goes with her who kind of helps modify the work and helps her adjust. She goes to school about 20 hours a week. And then we do ABA another 10 in her clinic. 

And then she has outside activities. We do speech three times a week. She still has a physical therapy appointment once a week. So it's, it's, and then we have like a reading specialist who comes into our house and works with her. So really kind of private tutors. She really is at school for social because it is a private school. They don't have a special ed department. 

They don't have the resources. So we're really there for just the social, the social aspect. And you know, it's, we kind of supplement everything else at home. So it's been really good because she really likes She imitates, she's a very good, she loves to observe and imitate. So it was, especially when she was younger, to imitate typical behavior and typical peer communication. The kids have been with her, she's in seventh grade, you know, since first grade, so they all know her and she's part of their group and they treat her, you know, they treat her great. I mean, it's been a great experience. 

She's hit middle school, it's been more challenging because she academically can't do middle school work and we saw anxiety get higher because of that. So she's actually a helper to some of the younger classes this year. And that's actually been really good for her because academically that's where she is and she can still work on those social skills, she can still work on some academic skills, but she doesn't have the pressure of trying to be in middle school when we're academically not there.

EMILY: I'm not going to lie, you're already making me feel a little bit of mom guilt when you talk about all these things that you do at home, because I work full time and I'm already very nervous about all these therapies that Joe will eventually do, and I've heard more and more people doing sort of hybrid schooling and if we have to do these therapies at home, I think working mom is going to be really tough. 
I don't know how you get all this in. 

SHERRI: Well, I don't do it all by myself. I will say that and I also work part-time. I work from home, but I work part-time. I have help. We have amazing therapists who go with her to school. They take her to her therapies. I used to do it all when she was younger and it was just really hard to do all the things a mom needs to do and work and all the therapy. 

I mean, there's just not enough hours in the day. We hired help. Our aides are wonderful. 

They're part of our family. They take her to school. They go to her therapies. It's been great for them because they learn directly from the therapist on what to do and that's kind of what we do so that we have help. 

EMILY: That's an interesting model because you did bring one of your therapists with you to the family conference and I loved that idea.  

SHERRI: Thank you. Yes, it was great to have her there. I wish I could have had the other one there as well. They're both wonderful and have been so great with Allie. 

EMILY: You kind of touched on her friends a little and I remember seeing Allie when she was going to the Special Olympics. There was a video online and I just burst into tears. 

SHERRI: Oh, me too. Every time I watch it, I can't watch it without crying. It was the sweetest thing. She does Special Olympics and like I said, she helps with some of the younger classes as a helper, which is really good for her socially. She got really close with a lot of her little kindergarten friends and the teacher said, hey, can we give her a going away? 

I said, sure. I'm thinking a couple signs. That morning, her aide called me and said, this is going to be a bigger deal. We went and they had her classmates at the time she was in sixth grade and her kindergarten friends made signs. They had a sash. They had a cheered her as she walked out of the school. I mean, it was just the sweetest thing. It was like everything I've ever wanted for her in one moment, the acceptance of her, the recognizing her strengths, knowing that she supported and this huge community of kids. 

It was just very emotional for us as well. That's all you ever want. All I ever wanted is her to be accepted and to have this group of kids who was there cheering her on, supporting her. They all made signs. It was definitely one of those moments I'll never forget. It's still making me tear up now. I know you're going to make me cry. I've watched it a thousand times and every time I cry, I'm like, every child should have that. It's what you want, especially with a child with special needs. All you ever want is for them to be accepted and for people to realize what a blessing they are and what they bring. And to realize that moment was that one moment, you know. 

So it was amazing and wonderful. 

EMILY: I think the past two guests that I've had on have been asking about friendships and it sounded like that wasn't really something that their kids were interested in and that kind of made me a little bit nervous. I know even Lisa Patterson who was like the third person that I interviewed and now we are friends. She actually called me up to tell me that, you know, that her daughter is friends. And so now it sounds like, you know, Allie has friends and that kind of makes me feel a little bit better, the acceptance and that they can have friendships. 

SHERRI: And I was a little bit nervous about that. The lack of speech is a challenge to friendships because obviously having her with kids, just typical kids, kids with disabilities, just being together, they kind of somewhat, especially when they're little, they don't have to talk. They can just play next to each other, you know. And then I think those friendships also happen because we've been with those kids for so many years. So they just know her, you know, and just accept her. 

And they're just really amazing children with amazing families who respect that people are different. So she does have friends, you know, it's a little different as a teenager because teenage girls are into TikTok and boys and she's not into any of that. So I think her friends lately are a little younger than her. 

And that's okay. And then she also has a group of friends. And she does special needs cheerleading. And we have a great group of friends and families who are part of that. And a lot of those girls are older. So it's been great for her because she's got some older friends and some younger friends. 

And for me, it's been great. So I have this group of parents to ask questions because I didn't know anyone with special needs children when she was born. So she has a, she has friends of all different areas. She's so social that that's her happiness is being around people. 

EMILY: Thank you for putting some of my fears to her. Thank you. That helps other people that are that are listening. Um, and so switching gears a little bit, uh, some of the people that listen to the podcast were asking me some questions that, um, I think you're probably a good person to answer. And that's kind of around discipline. When Allie is acting out, sort of what's, what were the best therapies that helped you sort of control some of her bad behavior? 

SHERRI: Sure. Definitely ABA. Um, and then I mentioned, I think once we, when she was able to communicate her frustration level and her behavior issues were dramatically reduced, because I think a lot of it was, she just was frustrated. She couldn't tell us what she needed. Um, you know, we have, we have really tried, tried, which is to not treat her that much different than her neurotypical brother. So if he did something and he would have been in trouble, then we tried to not let her get by with the same thing. Now we had to obviously discipline a little bit different, but I tried to never let the fact that she has these challenges be an excuse for her to get by with things that maybe I wouldn't have done if it were her brother. So, um, and sometimes he'll call me on it, you know, we have a rule, we have no electronics at the table at dinner and sometimes she brings her iPad and I just want to have a quiet dinner and he'll be like, mom, I couldn't do that. I'm like, yeah, you're right. Put it up. Um, you know, modified, but we've, we've tried to trace her and, you know, we say the same thing at school. If she's doing something at school that you wouldn't let another student do, then you treat her exactly the same. We have, we've tried to not do things differently and, and she's smart enough and she's observant as she knows. Um, and so I don't know if that's my answer. 

Um, certainly the biggest issues we had ADL help us, but I've never, we've never tried to let her disabilities be an excuse for allowing her to do things we wouldn't have allowed her to do if she didn't have that. 

EMILY: Yeah. I like that answer. Um, and what is the relationship between Ally and her brother?

SHERRI: Oh, it's just, it's just the sweetest thing. She absolutely adores him. 

I mean, she thinks he can do no wrong. Um, he's a teenager. So, you know, now he's kind of into teenager things, but he's super kind with her when they were younger. Um, he was always our peer model because I would have to take him with me when I took her to therapy. 

I didn't have remorse to take him. So a lot of times he was the peer model in these clinics and then, you know, they would say, we want the child to do this. Maddox, can you imitate. And so he was very involved and we've always really included him. Um, you know, we talk about what her therapies are, medical issues, whatever. We've never really screened him from any of that. So I think he's, he's always been very mature. Um, he's always kind of been part of that. He, he's super kind with her. Um, yeah, his friends are kind with her. I mean, she's just, she's just part of her family. I mean, he's, he's going to be going to college in a couple of years and that's going to be really hard on her because she, she adores him. And when he's not with us, she wants to know where he is and when he's going to be at home. And as soon as he comes home, she runs and gives them a hug at the door. So talk to me in a couple of years, I'm going to be a sobbing mess. Cause it's going to be, it's going to be hard, but they've always had a really sweet relationship. I think he is, um, very even killed kid, you know, nothing browsles him too much. He doesn't get too uptight about anything. He just kind of goes with the flow and, you know, just kind of knows this is how it is. He doesn't know any different. He's never not had a sister with special needs. So, this is all he knows, but, um, it's, it's a sweet relationship. 

EMILY: Okay. We're down to my last question. Where do you see Allie in 10 years? 

SHERRI: You know, that's interesting. So I mentioned that she has this group of friends that she does cheer with. Um, a lot of them go to, there's a, like a day program here where the, that adults with disabilities go, they do crafts, they do activities, they go in the community and volunteer. I see her maybe doing some of that during the day. She loves animals, dogs, and she loves little kids, and she's really good with younger children. I could almost see her volunteering in a daycare or a preschool as a helper because it's kind of like a family. I mean, I'm not sure how much to those kids and they really connect with her. I could see her doing something like that. 

I don't know, that's kind of where I see her. She's so social, we will have to, whatever she does, she has to be around people. I mean, that's what makes her happy. And she's very helpful, like around the house. 

I mean, she has chores, we have her full kitchen towels. I mean, maybe a little volunteer job where she has something that she can do that's a skill she can learn and keep practicing. So that's probably where we see her. I think she'll live at home. I think she could get the skills to live independently, but she sees only the good in people and I feel like she might be taken into the manage of on her own. I don't know how else to say that. She never sees bad. Everyone is wonderful and beautiful and the sky is rainbows and butterflies. And I just worried worry about her being on her own that she wouldn't be safe, possibly. So, I always see her living with us or sometime when we're not able to care for her, I think she would do great in an adult community with other adults with disabilities.
 
EMILY: It's a blessing and a curse how they see the good in everybody. So it does make me nervous as well sometimes. 

SHERRI: It is. And she never sees bad, which is a really beautiful thing. It also makes you nervous as a parent, because all you have to do is the stranger can come up and go, hi, Allie. And she acts like she's their best friend. We don't know that person. But she's, yeah, she only sees good, which is really beautiful trait too. 

EMILY: So, I remember at the conference, somebody put a phone up in front of her with a mom that couldn't attend and she's like, hi, new friend. And that meant so much to me to see her do that. I was like, oh.

SHERRI: I never saw that. That's so cute. I didn't realize she had done that. She is she's so outgoing. I mean, she wants to meet everyone and get to know you. And like, like I said, social is her is her strength. 

I mean, she just loves people. 

EMILY: Okay. And before I let you go, anything that you that I didn't touch on or you have any other advice for parents of younger or recently diagnosed kids? I just say never set limits for your child. 

Kids are amazing. And there's so many things that over the last 14 years, we never thought were possible. And she continues to do them. I mean, never set limits because they can always accomplish it. It just takes a lot of effort. And sometimes the progress is slow. 

And sometimes you feel like it's never going to happen. But eventually it does, like swimming was a perfect example. I wanted Allie to learn to swim her brothers a competitive swimmer where around water, she just won lessons for seven years. At one point, I was like, just throw her in the water. 

And you know, I just and then now and then once she got it, she got it and she's on a swim team now. So it's just the process is slower, but they can always get there. It just takes time and you just have to be patient. 

And it will happen. I also will say, you know, we were we were pretty intense with therapies, we still are. We've done a lot of things and there's no question that therapy does help, especially, you know, it was really anytime. But those fears for you first few years, I mean, my recommendation would be do as much as you can, because it really does change the outcome for her. 

It did it for her anyway. Children amazing, they see the world in such such a beautiful way. I mean, we've often said she's just inspiring, no matter what she goes through, how hard things are, you know, she's always has a smile on her face. 

And we all can learn a lot from our kids. They don't get sad. I mean, she doesn't get sad. She doesn't get upset. She's the hardest working, hardest working person I know. And she always is happy. So.

EMILY: Perfect! Well, thank you so much for all of this. 

SHERRI: You're so welcome. 

PODCAST EXIT: Thank you. 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 skdeas.org to learn more about Scrabin-Deerdorf syndrome and consider making a donation to fund research to help our kids. Talk soon.