Yelena House: Reminding us that raising a SKDEAS kid is a marathon, not a sprint, and our kids will constantly surprise us

Hi everyone!  Please enjoy my conversation with Yelena House as she talks about her son, Andrew.  Andrew went most of his life without a diagnosis and is now a thriving 19-year-old that is proud to be part of the Skraban-Deardorff community.  Yelena shared lots of stories from Andrew's life and reminds us that we should never underestimate our rare kids since they are constantly surprising us with what they can achieve.  I said many times throughout this conversation that Yelena and Andrew fill me with hope for our SKDEAS kids.  

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

Transcript

PODCAST INTRODUCTION: This is Emily Beauclair and you're listening to the Smiles Included podcast, navigating through life with our rare disease superheroes. Hi everybody, welcome to Episode 8. Today I'm interviewing Yelena House, who is the mom to Andrew, who is 19 and has Skraban-Deardorff. 

And I've actually been wanting to talk to her for a while and that's because of something we even talk about in this podcast, is when I first got the diagnosis for my son, and I went down that path of trying to figure out what this meant. And of course, googling and reading everything about Skraban-Deardorff is quite depressing and not very helpful. And then I found the Skraban-Deardorff Facebook group and probably spent hours on that and was scrolling through it and found a video of Andrew cooking. 

It was actually, basically he was filming a cooking video, where he was walking through how he was making cookies, what ingredients he was using, you know, what he was doing along the way. And it was just so amazing to see, you know, somebody older with the same thing that my son had. And it's just a perfect example of why I love that people are so willing to share their stories. 

That was the first time that I had hope that my son will be able to speak. And we all need that. So, so I want to officially thank Yelena for sharing that on Facebook, but also for talking to me for this podcast and sharing her story and Andrew's story with all of us. And I hope it does bring some hope to everybody of, you know, some of the great things that our kids can achieve. I think, she just gives so much great advice of, you know, keeping our head up and keep going. And I think a lot of us need to hear what she has to say. Please enjoy my interview with Yelena. 

EMILY: Hi, Yelena and welcome to the podcast. Let's kick it off the way I normally do with you telling me a little bit about your family. 

YELENA: Yes, absolutely. Well, first of all, thank you so much for having me here. It's a pleasure to be here. So, a little bit about myself and my family. We live in Pacific Northwest, in Washington state. My husband and I, we are raising two boys. Our younger one is Nick, he's 17. He is a neurotypical child. And he's older brother is Andrew, who just turned 19.  And he's our special child. 

EMILY: So, tell us a little bit about Andrew. 

YELENA: So, Andrew's 19 now. 

EMILY: How old was he when he was diagnosed with Skraban-Deardorff? 

YELENA: It was only two years ago in 1920. I'm sorry, 2022 😊.

EMILY: It's hard to keep track of the dates. So, does Andrew have anything else other than Skraban-Deardorff? 

YELENA: He has a number of diagnoses actually. It was a very long journey to get to where we are right now. Well, let me take a step back. When Andrew was born, he was born pre- mature. He was delivered through C-section at the 37 weeks. We spent a week in the hospital in intensive care. 

But then when we came home, everything seems to be normal. He was a happy baby. He ate well. 
He slept well. He gained quite a bit of weight. Even though he was born 5 pounds, 8 ounces, by the time he was 3 months old, he already was in 75th percentile. As the time goes by, I started noticing that maybe he is a little bit delayed. He wasn't sitting when he was supposed to. He wasn’t crawling … and at 9 months old, we of course go to our primary care physician on the schedule, I was expressing my concerns. But I was told that the development scale is very long and he is just at the other end of it. That was going on until he was like a year and a half. A year and a half, I said, look, he wasn't crawling until he was 12. We actually took him to physical therapy and started working with him on crawling. At the 14 months, he actually started walking. He started walking fairly fast. 

We went for the evaluation with a neurologist at a year and a half, who didn't express any concerns. Then 6 months later, we ended up with a different neurologist. 

Andrew was 2 at that time. Suddenly, we got the diagnosis, Global Development Delays. I was completely devastated. I was just giving the diagnosis and it was like, there you go. 

Nothing, no suggestions, what to do, where to go. I just couldn't believe how is it even possible to see all those doctors all these years and not a single concern. Suddenly, you have this very bad- sounding diagnosis of Global Development Delays. I started researching what we can do. 

I started looking for the resources. We ended up in a “birth to three” program, but Andrew was almost turning three at the time. We were only there for two months. From that point, I started looking into the further diagnostics, different doctors. We signed up with Seattle Children's Hospital. We waited for nine months to get in and I actually was very excited about the appointment when I was thinking we will be evaluated by multidisciplinary team and we will get the answers. Nothing really came out of it either. We got PDD-NOS, which is Pervasive Development Delays, otherwise not specified. Then later on, we got atypical autism, which I was very much frustrated with as well. Andrew was very social. He was very much interested in people. He was non-verbal. He did have stereotypical behaviors, but then later on I realized those behaviors actually came because of his OCD and anxiety. It really felt like he didn't really fit in with this diagnosis. 

That was helpful in a way. We at least started looking at how we can help with all of the challenges that he was experiencing. He was delayed in speech, he was delayed with his motor function, with fine motor, gross motor. He had sensitivity issues.

EMILY: It's interesting your experience being 15 years before mine, but still very similar. I hate that you had to wait so long to get your diagnosis, but it's like even just getting the global delays. That diagnosis so late meant that you couldn't get into the birth to three program until really late, which that's unfortunate. Then did you put Andrew in regular school? How did that work? 

YELENA: So, because I wasn't realizing, well I didn't know to what extent he's affected, right? I was really hoping that with extra work, with extra therapies, with maybe private tutoring, he could catch up. And actually a lot of doctors were saying, we don't see…, there weren’t saying, there's nothing wrong with him, but they were saying, “we feel like he can catch up”, you know, “you still have time, right?” 

When he was three, like he's still... 

EMILY: Yeah, I'm not surprised they were saying that to you. 

YELENA: And especially Andrew was raised in the household where there are two languages, like specifically for speeches, that don't worry, he will start speaking sometimes soon because he has to learn two languages. Well, I know that some of my friends, they're kids, they learn two languages and they're already miles ahead of him in speech. So, I held him back for kindergarten and we got him ABA therapist who worked with him at home. And then when the time came to go to school, I looked at the options… in public school, they offered him a class which wasn't inclusive. And I really thought that was crucial for him to have typical peers. Because Andrew was such an observer, like he would be very much hesitant to initiate activities, but he would just stay and observe the other kids. And it's normal because that's how he learns, right? 

So, I thought, if I would put him in a class where he won't have typical peers, it just might put him even further behind. 

EMILY: I mean, this is like Twilight Zone because I'm feeling like this is... If I didn't have the Skraban-Deardorff diagnosis, I was going down the same path that you were. 

I kept thinking like, I'll probably just leave him behind a year and then he'll be with the... Then maybe he'll be fit and better. So the fact that it's just... Like I'm thinking that you are where I would have been if I didn't have the diagnosis. 

YELENA: I think, really getting a diagnosis was... to us, was a huge relief. 

EMILY: Tell me a little bit more about his story going, I guess, because there's so much time between where you are and getting the diagnosis. What was his life like? 

YELENA: Yes, so let me finish about school and I will..

EMILY: I'm cutting out, I'm so interested [laughs] 

YELENA: [laughs] I know, I'm jumping all over, I apologize. So yes, so we put him in a private school. We were fortunate, we found a school. It was a very small school run from someone's basement. Actually a group of Microsoft parents, they organized the school for their kids and that's how we got in. What I really like about the school was one-on-one attention and they were planning to expand. 

And then in fact they expand quite quickly and in his class he did have typical peers which served as a role model for him and other kids. But also this school was under ABA umbrella. And that was kind of a good of both worlds because insurance would actually pay because it was our insurance covered ABA. 

That was very helpful. Otherwise the private school was very expensive. We still had to pay out of pocket but it wasn't as much as it would be without insurance. Yes, and so that's where Andrew was until he graduated. He graduated two years ago. 

He didn't get a high school diploma, he did get the certificate of accomplishment. But it really was our choice because we thought that it might be more useful for Andrew to work on lifelong skills versus academics. 

EMILY: And Andrew can speak. So, when did he get his voice?

YELENA: I'll share the story with you. Every time I share the story I cry, I try not to. So, I will tell you a little bit about what we did and … just sequences of events. I don't want to make any claims because other parents might take it in the wrong way. 

I guess what I'm trying to say, and you will understand why I’m saying that, I don't want to give people false hopes. Because honestly, just a step back, we've done so many things with Andrew. We did mainstream therapies, we did biomedical interventions, at some point we even did steam cells, we did hyperbaric oxygen therapy. And every time we did something we've seen improvements, we've seen results, did it really correlate to specific therapy? I can't really say that. Sometimes it might be coincidental, we never know. In fact, one time we decided to do the biomedical protocol, I already got all the vitamins and I decided to start him. But then I changed my mind and a week from that he had a huge developmental leap. And I was talking to my husband, I said, Rob, if we would start him on these vitamins, we would think this is the miracle and that's what exactly did it. 

So I really have to be careful with claims, I think, or correlating things which might have nothing to do with one another. But in our case, since you asked me, we did hyperbaric oxygen therapy with Andrew. Back then Dr. Rossignol, Dr Neubauer, Dr. Hirch, they would become hyperbaric therapy experts. There was some research in certain areas, I know that hyperbaric, at least what I read, helps people with cerebral palsy. 

I read some other things, so we decided to try. I believe it was Dr. Neubauer protocol, 90 hours with a soft chamber, I still have it in my garage, it's a soft - shell chamber. And we had to dive in there for 90 hours, it was hour and a half in the morning, hour and a half at night. I think it was 30 days straight. 

So at that point Andrew was four, he was nonverbal, he had three words in his vocabulary. It was “help”, “daddy” and “mommy”, that's it, nothing else. After we did the protocol, probably a week, a week to ten days from there, I was cooking breakfast for Andrew, I was in a hurry, I burned his pancakes, I put the plate of pancakes in front of him and I said. “Andrew, I'm so sorry I burned your pancakes” and he said, “mommy, don't worry, those pancakes as beautiful as my beautiful mommy”. 

EMILY: Oh my God. 

YELENA: And I just started crying. 

EMILY: All of those words at once? 

YELENA: All of those words at once, it's a whole sentence, it's so well put. And I was thinking like, oh my goodness, what was going on in his little head? He has all these capabilities of speaking, putting together such complicated sentences, he wasn't able to get it out. But then again, I would never say if anyone asked me, was it the hyperbaric therapy that did it, I can't really say if it was. 

It's of course easy to call it and say, oh my God, we've done it and look at the results, but there is no scientific proof to it. 

EMILY: Yeah, wow. So you're making me cry because I just know my son has all these words inside of him and I always want to know what he's saying and the fact that your son just went from a couple of words to just a sentence. So after he said that, was he just speaking? 

YELENA: That's interesting. He was, but not to the extent that suddenly he started speaking in full beautiful sentences and everything was cohesive, no. So, it still took him a long time. I think, the biggest problem for him was to construct the sentences. A lot of times he would start speaking backwards, the end of the sentence would come first. 

And of course it's work. He spent years and years in speech therapy. 

EMILY: How old was he when the pancake incident? 

YELENA: Yeah, he was four. 

EMILY: He was four? Oh, I was imagining him older. Oh, wow.  So he got his speech at a younger age than a lot of the Skraban-Deardorff kids. That's okay. So, explain to me. So, hyperbolic chamber. Hyperbaric…Hyperbaric oxygen therapy. 

YELENA: Hyperbaric oxygen therapy. And I can send you links once we're done. It was a long time ago… I've read so much... I bought a book, like a thousand pages… it actually treats a lot of off-label diseases. So there is a soft shell chamber. There is a hard shell chamber and they supposed to have a different indications.  And there is an indication for the hyperbaric therapy for certain poisons and wound healing, I believe. It's approved. 

EMILY: Wow. So then when he was going through school, he was able to communicate pretty well. 

YELENA: Well, I would say yes and no. He could. But then again, because I know he had a lot of things inside of him, a lot. And there was a lot of built emotions and maybe it was attention or maybe it was something else. I don't know. But when he would come home from school, he wasn't able to tell me what happened at school. He actually sometimes wouldn't even tell me what he had for lunch. In fact, I gave him lunch and that comes home and I said, Andrew, what did you have for lunch? He had no idea. 

All right. So we had another interesting story when Andrew really opened up for me that was maybe a couple of years ago. We did the acupuncture. 

I read somewhere that acupuncture is really good for releasing emotions and Andrew is a very emotional guy and I thought maybe that would help. And so we did the treatment and after the treatment, he came home and it just started pouring out of him. He started telling me all of his experiences when he was young, when he was in school. A lot of it was negative experiences. 

No one brought it to me ever at school. But I think because he wasn't really able to communicate that back to me and release those emotions, he started telling me what happened like 15 years ago. 

EMILY: Was it and those negative experiences was just like how he was treated or how he was treated? 
YELENA: Yeah. 

EMILY: I hate hearing that and I'm like, I keep hoping that the world is a better place now. But I don't know. I hear mixed things. But oh man. So are there any other just. out of the box weird therapies that you tried that may or may not have been successful? 

YELENA: I think we tried everything with the reason that I was able to find. We did tomatis listening therapy. We did therapy to help him with sensory issues, it was more like OT, it was in OT. 

EMILY: Are there any therapies that if you could do it all over again you would have totally avoided?

YELENA: I would say I wouldn’t avoid the therapy, but I definitely would be more mindful and selective about people who I'm hiring to provide this therapy. 

Because really if we think about it, say ABA therapy, it's a great therapy, it's a great approach if it's done correctly… but who is implementing it? It really depends on the person who implements the therapy. Just looking back, some of the providers that we had just weren’t the right fit for Andrew.

EMILY: Yeah, yeah, that makes sense and that's definitely good advice. Sometimes I do wonder, when I can't be there what's going on behind closed doors because I also, again, my son can't tell me. So, I do worry when he gets a voice later on that he's going to say, oh, that therapy was the worst, why'd you waste all my time? I'm like, your time? [laughs]

I wasted hours driving you there. But hopefully nothing too negative but again, that's why I'm just desperate for my son to speak. So I'm very jealous and very happy for you that Andrew has found his voice so young. Did anything change for you when you got the diagnosis? 

YELENA: I would say definitely, yes. It was such a long journey. It took us 17 and a half years here to get the answer. It was a huge relief for us, it was important, but I think it's even more important for Andrew because when he was able to understand his challenges, identify himself, compare himself to others, he started asking me, he would come home and he would say, mom, such and such has a Down syndrome. 

But what do I have? I don't have Down syndrome. Like, yeah, you don't have Down syndrome. Such and such has autism… What do I have? I don't have autism. I said, yes, well…and I didn't really have a good answer for him. I was saying Andrew, everyone is different and you have just your own differences. And when we got diagnosed, I told Andrew that he has a Skraban-Deardorff syndrome and he went and he googled it, he read about it, he looked at the pictures of kids, he wrote it down, he went to school, he proudly shared with everyone that he has a syndrome. He was proud of it! [laughs]

EMILY: Oh, I love that. I love that. That's amazing. And I think that's, yeah, you joined the larger community of Skraban-Deardorff, you know, kids and adults.

YELENA: Exactly! It's really, finally, I have a feeling of you belong somewhere, you have a community. It's important. 

EMILY: Yeah, I think that's amazing. And I guess, can you walk us through a day in the life of Andrew right now? So right now, Andrew, he is in transition program. 

It's a work-to-school program from 18 to 21. Every morning, we get up around 7 o'clock, he has breakfast. His dad walks him to school about 10 minutes walk. Then Andrew spends his time there from 9 until 3. He works on life skills, they teach them how to manage the budget, how to write a resume. 

And more importantly they take them as volunteers. He goes to Salvation Army, he loves Salvation Army. He loves to work at the store and sort things. The sorting is his thing, or cleaning is his thing. He loves cleaning. And then he comes home. We have a snack, we go for a walk, we read. He watches shows, he listens to music, he loves singing. And that's how our day goes by. 

EMILY: How independent is he? For instance, I guess, when Andrew in five years, do you ever imagine that he'd be able to, or 10 years even, just live on his own, or maybe in an assisted living place, or do you think he might always be with you? 

YELENA: Yeah, Emily, it's a great question. I think it's a question no one knows the answer for. I have to say that our kids are amazing. And things that Andrew is capable of today, I never thought he would be, just even four years ago, honestly. You know, what's amazing about our kids is that they don't develop as typical children. And definitely we shouldn't have expectations as for typical children. Those families who have siblings who are neuro-typical, they could definitely see that you almost don't have to put a lot of efforts in a child. We do a lot of things for granted, right? With our Skraban-Deardorff children, it's a different story.  

You put so much effort just for simple things, right? Like when they're little… feeding or walking or crawling. But they also develop at a different rate. I actually, …let me share one story very quick, if I have time. When Andrew was two we taught him how to ride a bike. And it took us probably a year and a half. We would put him on the bike, we would show him how to do it. We would tie his feet to the bike and then we would do the motion, so he would learn how to do it. But no matter how hard we worked with him, every time he looks at the bike, he had no idea what to do with it. 

We really have to sit him down, tie his feet. And we're looking at Andrew thinking, he will never be able to ride a bike. And so with that kind of feeling, we go to work, we come home, and Andrew rides his bike, just going in the circles around the kitchen island. And my husband and I were absolutely blown away because that morning was no indication he even knows what a bike is. 

I actually talked to a neurologist about this. And he said one interesting thing. He said, imagine a building a highway. And then your highway has five lanes. You build the lane one, lane two, then lane four and five. And you cannot use it, there is nothing happening. And you build the lane number three and suddenly your whole highway is in full power and motion. And that's how his brain works. 

You might think he's not acquiring a skill, even though he already has this four lanes built. There is one gap left. It might be filled overnight. Maybe not overnight, but in a very short period of time, suddenly you see the skill comes out. 

EMILY: I love to hear you say that because some of the questions that I hear from people that listen to this or they ask, is this therapy actually working? I feel like I'm not seeing any results. And I think sometimes you don't see those results. And then all of a sudden it just clicks. But some of the therapies might not be doing anything. As you mentioned, you might have thought that one of your therapies caused a whole lot of success, the one that you didn't do. But I think one point when we were doing speech therapy when my son was two, I'm like, do we get this up? 

Because he is not speaking. But we're just going to continue pushing this for hours a day, or hours a week, I guess. But we should just keep going and you never know what they're absorbing. 

YELENA: Absolutely, absolutely, absolutely. I think, well, when Andrew was five or six years old, I remember myself, I got to the point where I was absolutely exhausted driving him from one therapy to another. He was in 20 hours plus therapies a week. And I didn't see any results and I was so frustrated. And then I've heard a phrase from one of the parents whose child had autism. The child was 17 and he was doing okay. He was actually going to college. And that parent said, just remember with our children, it's not a sprint, it's a marathon! 

And that's exactly what it is. I would say, don't get discouraged when you don't see results. You might not see any improvement for a year, maybe even for a couple of years. 

Don't give up, just keep going. And then one day this child will surprise you. Andrew is 19, he still surprises me. And the biggest progress he ever made, you might be surprised, in the last four years, from 15 to 19. I look back, four years back, he's totally different person. He is very mature. He is very much involved. He's totally different. I never thought he would have this level of maturity, understanding as he has today, just in four years... 

EMILY: Okay, because you answered another question, I had for you was, do you think he's still developing? It sounds like, I guess they're globally delayed, so maybe they're developing later on in life. 

YELENA: Absolutely. The curve is just…, yes, they will develop longer than other neuro-typical children, I believe.  I see Andrew easily is a proof of that. 

EMILY: Yeah, and you mentioned you have another son. How is their relationship? 

YELENA: So, when they were little, they hung out together. They were good brothers to each other. Of course, any siblings, they would pick in one another, especially I would say Nick would pick on Andrew, because Nick realized later, even though Andrew is older brother, he kind of felt that he is older, maybe. Then we went for a very long period of time, I would say sort of darkness in their relationship, because Nick always felt that Andrew gets more attention, even though, and that naturally happens, right? 

I mean, if there are 20 hours of therapy I have to take my child, it's a 20 hours that my other child get less of my time. I tried to involve Nick, until he really understood that Andrew has a problem. He did have a lot of jealousy going on, and even poor little guy, because we took Andrew to so many doctors, and Nick didn't need any, he would start pretending he has issues, he would start complaining about his heart, his heart hurts, I had to take him to a doctor, of course there's nothing there. [laughs] I actually did sign up Nick one time for therapy as well, well Andrew was in the therapy, and Nick wasn't, I thought it wouldn't hurt and insurance covered..., so. 

EMILY: You do what you have to do, that's actually a pretty good idea. Yeah, because I think some of us have two kids, we worry about that, and yeah, I could see your younger son, feels like the older son, and also could feel left out. 

YELENA: We had a conversation with Nick when he was a little bit younger, maybe he was 15, 14, when he already started to understand that Andrew has an issue, that we love them equally, and that's the truth. It's just Nick needs way less guidance, and way less time, and Andrew needs more time, and more efforts, and it's kind of, it always fluctuates, like whenever I said, “Nick, whenever you need more time, my time, dad’s time, we give it to you, right”, and give him an example, and I think he got it. 

EMILY: Yeah, man, so okay. And even now, do they hang out, or does Andrew have a group of friends that he hangs out with? 

YELENA: Unfortunately, he doesn't. Andrew was always gravitated towards adults, I think because he was nonverbal for a long time, and even when he starts speaking, he actually does have a speech impediment, he stutters quite a bit, he's aware of it. And I think, it holds him back, and also Andrew has very specific interests, like Andrew, for all his time, he was into Kardashians. I don't watch the shows, I don't have time for that. I probably wouldn't mind, but I don't have time for that. He loves housewives, I don't watch the shows, and I didn't introduce him. He is all about relationships and drama, and I think Andrew learned quite a bit about relationships in those shows, maybe not through the great examples, but... So, you know, a lot of kids his age, they are into the gaming, Andrew is not. He always, felt more comfortable with women, rather than guys actually, I think maybe because women are more patient, maybe more nurturing, and maybe because through years of therapies, he had mostly female providers, maybe that has played a role, I don't know. 

But what's interesting, the school he went to, they had a paraeducators there, which were phenomenal, they provided such a great support. You know, my biggest fear always was that no one will show up at Andrew’s birthday. So, he had 19 birthdays, it never happened, we always had people, and Andrew called his teachers teacher- friends. And so now he calls them friends. Andrew is 19, they're actually, in their 30, …and so they even have things in common. 

Now they can talk about housewives shows and Kardashian’s. So, they still stay in touch, they left school a long time ago, one of them left school about five years ago, the other one, I think three. But they still keep in touch, and they show up at birthdays every year. And Andrew calls them, they call him back, and he considers them his friends. 

EMILY: That's amazing. And just even you telling me that he calls them, it's just, that is just something that I can't even imagine for my son. And it's just, like, I love hearing that. So, he's actually, you know, talking on the phone. That's amazing. [laughs]

YELENA: But it really, really took a long time. 

EMILY: Yeah, I'm sure. And you've just given so many great stories and so much great advice. I don't know if there's any other advice that you have not already given that you still have for other parents that you want to impart on us. 

YELENA: I would say I really would reiterate the phrase that I've heard from a parent with the older child when I was frustrated. Just keep going. Remember, it's not the sprint, it's a marathon. It's really helpful to think that way when you find yourself in the corner, when you get frustrated, when you get discouraged. Because sometimes it takes a long time to see the results. 

EMILY: I think that will resonate with a lot of us. So thank you. You just gave me a lot of hope and I hope you gave a lot of other listeners hope of just sticking with it and you'll see some success. And maybe we won't see as much success as Andrew has had, but it does give me hope. I mean, it's even amazing that you're still seeing results now. 

YELENA: Absolutely, absolutely. And just remember, your child will surprise you. You will be amazed. 

EMILY: Your son just sounds very similar to mine. Your experiences sound very similar to mine. So it does give me hope because communication is like the biggest hurdle right now. 

Because I know there's so much in his head and we just can't get it out. 

YELENA: How old is your child? How old is your son? 

EMILY: He is four. He's about four and a half. Yeah. He's got a couple of words, but he won’t say it. He will not repeat it. 

YELENA: We actually went through that period of time as well. And also, I should probably mention that maybe that will be helpful for someone. We also went through the period where Andrew used, what the doctors called is Jargon, he basically would pretend he speaks. He's go you know, it's like he would pretend like it's a speech. 

EMILY: My son could have a whole conversation like that. 

YELENA: Exactly. Exactly. And it's a wonderful, wonderful sign. Because as I was explained, it's actually the sign that speech is coming. 

It's like, it's a babble like a two year old, a year and a half, you know, when they start babbling. I actually, I was slightly frustrated with this, and I was trying to tell Andrew to use words and to say things, but it was so cute. I remember kids were little and Andrew was going through this jargon. And I told Andrew in the car with his brother, I said, Andrew, stop, you need to use words, say this. 

And Nick said, Mom, don't do that. I understand. I know exactly what he's saying. I look at him. I said, what is he saying? 

And he goes, blah, blah, blah, blah, blah, blah. Yeah. Exactly what he was saying. Yeah. 

So, so, so it's a really good sign. 

EMILY: Okay. Okay, good. I like to hear that because there's a lot of, there's a lot of that like whole conversations of babbling. 

YELENA: Yes. Yes. So, yes. Okay, good. It’s a sure sign of the development of speech.

EMILY: So, another thing that I have to mention is when I first got the Skraban-Deardorff diagnosis for my son and I went on Facebook on the Skraban-Deardorff page and was scrolling through it. I stumbled on the video of your son and I just, I was like, I ran upstairs to show my husband. I was like, he's speaking. He's having, he's like doing a cooking video. He was actually doing a cooking video for people. And I was amazed. 

YELENA: I put this video out there for other parents to get encouragement, because I was exactly in your shoes and it's just the parents who just started this journey. And I remember how much frustrated I was, how much, you know, how much I didn't know. I didn't know what to anticipate. And when your child doesn't speak and all the other children his age speak, it's hard to believe your child will, right? So, so yes, things happen. And things will happen to your children as well, to your child. 

EMILY: I feel badly for you having to go through so many years and you're the trailblazer for all of us and you have more unknown of head of you where at least some of us with the younger kids are looking at you and be like, at least we know what the next 10 years might look like. So we're just going to keep watching you on how Andrew progresses. 

YELENA: And I will be happy to share. [laughs]

EMILY: Okay, well, thank you so much. 

YELENA: Oh, thank you. Thank you for having me here. 

PODCAST EXIT: 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.