Ep. 14: Down Syndrome Regression Disorder [TRANSCRIPT]
Abby Rose Esposito, MediSked (00:11):
Hello and welcome back to the MediSked Podcast! I am your host, Abby Rose Esposito, Senior Marketing Strategist at MediSked. Today I’m joined by Alliet and Stacey Shearing. Alliet is a 21 year-old individual with Down Syndrome who has volunteered to share his story along with his mother. Stacey and Alliet are learning about Down Syndrome Regression, a little-known condition that results in a significant change in mental acuity around Alliet’s age. They’Re here to advocate for more research and education about this condition, as well as discuss the conundrum they’re currently in as they figure out next steps, now that Alliet is no longer eligible to receive services at school. Alliet is also one of 5 million people in the United States who cannot rely on speech alone to be heard and understood, so for the first time, we are recording this podcast as a video as well! The video format will be available on YouTube. Alliet and Stacey, thank you so much for being here.
Stacey Shearing (01:04):
My gosh. Thank you for having us. I appreciate it. We so appreciate it, <laugh>.
Abby Rose Esposito, MediSked (01:07):
I’m so glad. Yes. So Alliet, we wanna get to know you first. So could you and your mom share a little bit about yourselves? What are some of the, your favorite things to do? What are some of your goals? That kind of stuff?
Stacey Shearing (01:19):
Yes, we are happy to do that. So Alliet’s 21. He is the youngest of our three children. He has a 26 year old sister named Jordan. She is a special education teacher in Corning, New York. He also has a 23 year old sister named Chloe, and she’s an occupational therapist in Newark, Wayne County, nursing Home <laugh>. And she also works at Thompson Hospital. So he’s impacted. Yeah.
Abby Rose Esposito, MediSked (01:45):
So you’re all involved. It’s amazing. It’s so great to have such a good circle of support.
Stacey Shearing (01:49):
It is. So we have lots of extra, extra help for sure with siblings. Alliet graduated from Holy Childhood this past June. He was there since first grade.
Abby Rose Esposito, MediSked (02:01):
Well, congratulations, <laugh>. So that’s exciting.
Stacey Shearing (02:04):
Exciting. That was exciting. It was, he worked really hard for a lot of years. The school was wonderful. It was a great, a great place for him to be for quite some time. So he graduated from Holy Childhood once the regression started because the program that he was in really was a little bit too advanced. Mm-Hmm. <Affirmative>, he was struggling. Had quite a, quite a breakdown at one point. So we, we had to remove him from the program. It was a lot with Covid, obviously, that did a lot of restrictions cuz the, the program that he was in had where they, where they would go out into the community and do jobs and such. And everything was shut down and <laugh>. It just was, it was really tough. So we removed him from that and he graduated once he graduated.
Stacey Shearing (02:53):
Now he attends Cobblestone art Center over in Farmington. And that is an adult dayhab program that focuses on arts and music and dance and theater. Cool. It’s a really cool place. <Laugh>, how do you like it? Do you like cobblestone? Do you like your friends over at Cobblestone? You dance and do music, huh? Yeah, that’s what I thought. Nice. That’s better than, than what we were doing. <Laugh> good. That’s for sure. He gets on the bus now with, with much more of a smile. Good. So that’s, that’s a positive thing. So Alliet lives with myself. I am a medical laboratory technologist. I work at a local doctor’s office. I’ve been there for 23 years. So I’ve been there forever. And my husband, Jeff his dad, he works for John Deere equipment does construction equipment. So his, you know, sister’s no longer reside at home, it’s just the three of us.
Stacey Shearing (03:56):
Yeah. <Laugh>. He has a dog and named Larry and Larry, a cat <laugh> named Burk. Right. Wow. So we stayed busy. He, so Alliet was born with Down Syndrome when he was five months old, he had a heart repair. It was an atrial ventricular repair. And then at 10 months old, he had what they call an anular pancreas repair. So he’s had two, he had two huge surgeries his first year of life. Yeah. After that he’s had several minor surgeries, you know, tonsils and ear tubes and tubes and all kinds of crazy things, tonsils out. And by the age of six, I had noticed he just wasn’t developing like my network of friends with other children with Down syndrome. His speech was not coming. Things where I was like, I think he might be autistic. So we put him in a research study at Strong because Oh, you know, 20 years ago.
Stacey Shearing (04:56):
Yeah. There wasn’t a lot about autism, you know? Yeah. I mean, it was just kind of get getting the diagnosises and such. So we were able to do that. We put him in a research study and yes, he ended up being classified with autism <laugh>. Yeah. Some of Alliet’s things prior to his regression, his favorite things that he was doing, he’s always been very active. Like I know I’ve shared videos with you about him. Yeah. Jumping and dancing and always silly. He loves to boat. He loves basketball. He loves to go camping. He has an adult tricycle that he love to ride. We do horseback riding. Ooh. He is really good at darts and pinball. Yeah. Curious, athletic. Yeah. He’s very athletic. Yeah. He was very athletic. Ping pong swimming, bowling, loves music. Loves his iPad. They’re used to <laugh>, but this is all things that prior to the regression that he was doing. And of course he loves to shop. He’s got two older sisters that <laugh>
Abby Rose Esposito, MediSked (05:59):
Who doesn’t, you know, <laugh>
Stacey Shearing (06:00):
Instilled that very well. So, and when for relaxing time, you know, he used to like to watch his movies and that sort of thing. Yeah. So, yeah. But you know, as of late we’ve lost a lot of those skills. You know, there we are back to learning a lot of things over again. We, we have lost our ability to feed ourselves. He still can use the bathroom independently, but just needs assistance reminding, getting him in mm-hmm. <Affirmative> helping him with his pants and such. He, but he is doing better. I mean, he’s trying, at least he’s trying. And, you know, it’s been a long journey of searching of what was going on. <Laugh>. Yeah. Yeah. Yeah.
Abby Rose Esposito, MediSked (06:46):
So for our listeners who probably haven’t heard of Down Syndrome regression Yes. Because I hadn’t before I met you. Right. could you explain what you’ve learned about it
Stacey Shearing (06:56):
And Yeah. So one of the first things that I found was a checklist. I got involved on Facebook. There was a social media page for mm-hmm. <Affirmative>, people with done syndrome, aggression disorder, a lot of parents explaining, you know, potential treatments, that sort of thing. I came across a checklist and, and a podcast actually <laugh> from Oh, great. Dr. Jonathan Santoro. The podcast was fascinating. Like, we, when we, when my husband and I heard it, we were like, he’s checklist for all of this. So one of the, some of the reported symptoms that they found were social withdrawal from friends and family, which was, we were, we got to a point we couldn’t get him out of bed. Mm-Hmm. <Affirmative>, you know, he was in the dark a lot. Didn’t wanna get up, couldn’t get him on the bus. Lost or diminished language.
Stacey Shearing (07:51):
We already had that. Anyway, so that was, but he would babble. Like, he would always try, he would try to speak, you know sometimes it would just be hard to understand him. But he would try to at least do that interaction with us. He also had a, a voice box. You know, he has a, a software at home that were with pictures and stuff to help him speak and make choices. So but he completely stopped using that as well. And the other things is loss of previously acquired developmental milestones. So, which we had made so many and he was doing so well and gone like, just completely diminished. They also, I mean, Alliet was already diagnosed with autism, but they are finding that the kids with the regression disorder have a tendency to also be dually diagnosed and have the autism as well, which would be decreased eye contact, decrease of empathy and emotion. Anger and frustration behavioral outbursts repetition of body movements, like ticks, you know mm-hmm. <Affirmative>, those were things that we were seeing, or extra movements that were not purposeful. Anorexia LA it’s lost almost 20 pounds since we’ve been going through this. So that’s been probably one of the toughest things for me. Cuz he is always been very fit and strong. Yeah. And muscular. And we’ve lost a lot of tone. Unfortunately with, with Covid everything went virtual. Yeah. So nobody
Abby Rose Esposito, MediSked (09:27):
Stayed in shape. <Laugh>? No.
Stacey Shearing (09:28):
<Laugh>. No. And the services were tough. He was falling asleep. Yeah. Yeah. He wasn’t participating. I have a non-verbal kid in a classroom that he can’t even talk and participate with his classmates. Right. Yeah. So it was, it was tough. Insomnia, difficulty sleeping. That’s, he’s always had that. But again, you know, it’s a struggle. <Laugh> to Yeah. You know, that’s always been though. And of co and of the obsessive compulsive thoughts and activities. You know, those are, some of those are just some of the things that we learned about listening to this podcast where we were like, oh my gosh, this is, yeah. This is him. You know? Yeah. So. Yeah. Yeah. Yeah.
Abby Rose Esposito, MediSked (10:14):
So you’ve been advocating for more research and education about Down Syndrome aggression. Yes. What are you hoping that our listeners and others who spread the message will learn about it?
Stacey Shearing (10:26):
I do feel that it’s imperative that parents and caregivers of individual with Down Syndrome be told about this disorder. I mean, it’s not a disorder that’s been talked about much because it’s new, you know. So I think it was like 2018 I had read someplace that was like the first of being where they were doing research and trying to figure out, you know, what is going on with these kids. You know, they, unfortunately, there’s things that they’ve been treating for, like major depression bipolar Yeah. You know, a lot of psychiatric, you know, stuff that, and I kept telling the doctors every time I would go to a different one <laugh>, that it’s difficult to explain to somebody that didn’t know Alliet before this happened. Right. You know, all I have are videos to show and say, this is what he was, this is where we are.
Stacey Shearing (11:23):
And, you know, to, there’s, there’s so many other links with Down Syndrome. There’s Alzheimer’s, like that’s another big thing that can happen. So to diagnose this disorder is difficult. They feel that it is an autoimmune disorder. A lot of the kids that have this it’s be, they have something called Hashimoto’s Encephalopathy, and it is a thyroid Yeah. Condition. So Alliet does have hypothyroidism. His sister has it. His grandma has it. <Laugh>, you know, my daughter has Hashimoto’s. So it’s like, we’re very familiar with it. And to learn about all these, these things with Down syndrome regression has been, it’s been a really wild ride. And being medical, I of course have like poured myself into it because it, it’s fascinating. Yeah. To me. So we had him tested for the Hashimotos, it came back negative.
Stacey Shearing (12:27):
We, you know, it wasn’t a problem. Good. You know, good news. We, he has psoriasis that’s also an autoimmune disease. And so we were immediately like, well, it’s gotta be some kind of inflammatory thing because I have this child that is looking at me. He’s clinically depressed. Yes. Yeah. But I think he’s depressed because he can’t do what he was doing before. Yeah. Yeah. He has a tremor. He feels weak. Yeah. He has anxiety. Like all these things that he never had are now peaking. And of course, I get Prozac, I get Lorazepam, <laugh>, I get all these, you know, drugs that are being pushed upon him that basically now are even, I felt numbing him even more. Mm-Hmm. <Affirmative> in a lot of ways. So when I heard about this I V I G therapy, it, it was really fascinating to think that, you know, we can give him a human product.
Stacey Shearing (13:23):
It’s ig, it’s a antibody. It’s, it’s the good antibody that helps to attack the bad ones that are attacking his body. Yeah. So when I got through all the testing, he had to have a spinal tap. They did that. They did lots of blood work. And they wanted to do an MRI of his brain, but we were unable to do that. He has a pacemaker lead in his heart from his open heart when he was a baby. Yeah. So we weren’t able to get a good picture of his brain to see if there was inflammation. But all of his inflammatory markers came back normal. So at that point, the immuno neurologist who we were so lucky to it, it was a whim of being able to really meet her because he was phasing out of 18. All of his behavioral doctors at Kirsh were rate one was retiring.
Stacey Shearing (14:18):
He’d had all along, he’s over 18. They really don’t treat PEDS anymore. Mm-Hmm. <affirmative> complex care centers that I was getting referred to were full. They weren’t taking new patients. The psychiatrists were not calling me back. Like we, it was horrible. We’re just trying to find some help. Like, we didn’t know what was going on with him. So to get finally we were directed through his doctor at KRS Center. After I had heard the podcast, I reached out to him and I said, listen, do we have anybody at Strong who is doing research on this IgG therapy for Down syndrome regression disorder? We really feel this is what Alliet has. And I’m at this point ready to go to California <laugh>. I’m gonna take him there and, you know, seek out Dr. Santoro. Yeah. So we ended up getting hooked up with a neuro immunologist at Strong.
Stacey Shearing (15:11):
And she did all of the, the steps that was necessary. Of course, insurance denied our first round of gama, the therapy for Gama globulin. Yeah. Because it’s so new. Because it’s so new. Yeah. And that clinically proven yet. Yeah. So she did go to bat, did a face-to-face and was able to get the approval to go through. Wow. So that was amazing. And that’s incredible. Yeah. It is incredible. So we had our first infusion, actually the 24th of last month. We had three separate ones oof. For his starter dose. They’re tough. They take two to three hours to do
Abby Rose Esposito, MediSked (15:53):
That does not sound fun.
Stacey Shearing (15:55):
No. Takes two to three hours for the infusions. Right.
Abby Rose Esposito, MediSked (15:58):
You have been through a lot my
Stacey Shearing (15:59):
Friends. It has been is it
Abby Rose Esposito, MediSked (16:02):
Helping?
Stacey Shearing (16:03):
It is. Yeah. Like it’s hard, you know, here he’s right. Gonna be
Abby Rose Esposito, MediSked (16:09):
Even more quiet. I’m a stranger. <Laugh>,
Stacey Shearing (16:11):
He’ll be even more quiet. But yeah. Remarkably last year or this past the, the break here that we just had for Easter, he was home all week and my husband was home doing some things with him. And he got up and put his shoes on, went outside, played basketball, which is the first time in two years that he has made any effort to even make a choice of something like that. Wow. So that was really amazing. And we had some beautiful weather. So he played basketball. Yeah. Every day by himself. Independently. We took a bike ride and took his dog for a walk the other day. And that was the first he’d been on his bike. And
Abby Rose Esposito, MediSked (16:52):
So you have been enjoying this nice weather. Me
Stacey Shearing (16:55):
Too. You like the sunshine. Right.
Abby Rose Esposito, MediSked (16:57):
We got a few more days of good, nice weather. So gotta make good use of it. That’s gonna get cold again.
Stacey Shearing (17:04):
Exactly. Exactly. Yes. So, but yeah. So like, is it working? Yes. Is it gonna take a lot of time? My understanding is sport is six months before you see a true turnaround. And
Abby Rose Esposito, MediSked (17:18):
How often do you do these? Right
Stacey Shearing (17:20):
Now it’s once a month. Okay. And he’ll go two days at the end of the month for any infusion. Got it. Because of his cardiac issues. They feel that it, you can, it’s a lot of fluid for him to take in. So they are pacing it out. Got it. A little bit for him. So he gets the two infusions. He feels like garbage after he has them. Yeah. I, I like to think it’s because the good antibodies are attacking the bad antibodies. It’s almost like he gets flu-like symptoms. Okay. So but Alliet had gotten sick. Oh, he got sick in November and February this year and ended up in the hospital both times. He had the flu one time and then he had that neurovirus and he had That is horrible. He’s awful. He got so dehydrated. That, you know, he had to go in for fluids.
Stacey Shearing (18:12):
Ugh. So that knocked him, you know, it was like every time we started making times like he would get knocked down. Can’t, can’t catch a break. I know. And we started physical therapy about four months ago with a wonderful PT that’s local to us. She’s amazing with him. So it’s been nice to see him building some qualities back up with that. We actually have an occupational therapy evaluation later today. Ooh. So we’re hoping to, you know, get him back in for that mm-hmm. <Affirmative>. Yeah. You know? Yeah. To get some more positivity of what he can do. Cuz we’ve lost a lot. That was something else that we lost a lot of, was his confidence in himself. Yeah. Well, I’m glad to hear you’re finding some joy in getting outside. We are. That’s good. The other thing I was gonna mention too as far as educating others Yeah.
Stacey Shearing (19:02):
About all of this is there’s so many signs that looking back now that we had from Alliet that if I would’ve hindsight known Yeah. One of the biggest things is they, they associated this regression disorder with trauma. Like, and what is trauma to our kids though. Right. I have a nonverbal child. He can’t come home and tell me, you know, we had a yucky lunch today. You know, this person didn’t talk very nice to me. You know, we, we don’t know. Every day I’ve handed my son off two strangers. Yeah. With my fingers crossed that, you know, positive things happen. So, you know, his sisters graduated from college and moved out. They feel that that was, you know, and, and these are life things that happened that we can’t prevent, but there are other things that we can modify Yeah. In their day to maybe accommodate for those losses.
Stacey Shearing (19:58):
So he lost his sisters. He had a therapy dog that passed away that was really hard. That is for both of us. The worst. That was the worst. He had a, an aide on his bus with him that had been with him for 15 years who broke her leg <laugh>. Oh wow. She was unable to come back. So that was really hard for him. Graduating, you know, just Yeah. Like what he’s comprehending about not being back with his peers, you know? Yeah. so those are all things that, looking back on now, we were like, well, we have no control over this. But when Alliet was refusing to get on the bus and we were forcing him to go, and then we would get him there, and then they would call and say, we can’t get him off the bus mm-hmm. <Affirmative> and then have to bring him home and, you know.
Stacey Shearing (20:44):
Yeah. He was so defeated. Like, he’d get off the bus and you could tell, you know, and I just kept telling him, I said, we’re gonna try to, we’re gonna find something else for you to do. It’s just we need time. I mean, I have a job. Right. God has a job. We have to go to them. Yeah. <Laugh>. Yeah. You know so, but it has made me go back Now, I’m, I’m, I’ve reduced my hours at my job now. So I’m more available to be able to accommodate where, where I need to, you know, I mean, I’m not gonna force him and push him into things again to Yeah. Further push the regression <laugh>. Yeah. You know? Yeah. Yeah. Wow.
Abby Rose Esposito, MediSked (21:22):
So school services Yes. Typically stop at
Stacey Shearing (21:25):
- Correct. What is your plan
Abby Rose Esposito, MediSked (21:28):
For the future? What
Stacey Shearing (21:29):
Options are available to you guys? So we actually just had our last CSE meeting the other day. That was, that was quite interesting. To be done with that after 21 years. Wow. You know, of, of meeting with many wonderful people. Holy childhood was great. Like I said, it was, it was quite a, a wonderful place for him to be, are we boring? You?
Abby Rose Esposito, MediSked (22:00):
<Laugh>
Stacey Shearing (22:01):
You gonna take a nap?
Abby Rose Esposito, MediSked (22:03):
<Laugh>, these chairs are pretty comfy. They’re very
Stacey Shearing (22:06):
Comfortable. They’re super comfortable. Get back to that question. Oh, when school ends? Yes. Yes. Yes. So it’s another world <laugh> with, with school and individuals with disabilities. A lot of, a lot of programs have stopped. You know, yeah. There used to be a lot of dayhab programs. ARC used to ha they just don’t offer things anymore. So the state has gone to a program called Self-Direction. Yeah. Of which we’ve been in now for about four years. It’s a great program. I I do like it. It’s great that we can hire our own staff. Yeah. it’s great that we can join clubs and organizations and we have the funding to be able to do that. Yeah. That’s huge. Yeah. You know, there’s obviously categories in his budget. You know, he went from a budget of about $60,000 as a school age student to like $110,000 budget as an adult.
Stacey Shearing (23:10):
Which seems like wow. This is like a tremendous amount of money. And it, and it is. But the big thing is we have to have a team. There’s a financial intermediary, there’s a care coordinator and there’s a broker. I love my team. I have a beautiful team. I’m, I’m one of the lucky ones. But it, the shortage of the people that are doing the jobs, it’s hard for people to even get into self-direction. Yeah. so that, that was a Yeah. A struggle. We live in Naples. Mm-Hmm. <Affirmative> beautiful country. We love it there. My husband and I grew up there. We, we raised our children there. We can’t say enough about it. The school has been amazing. They’ve offered opportunities to Alliet that most schools never would have done. Yeah. And they’ve worked with us very well. So I feel extremely grateful for all of that.
Stacey Shearing (24:07):
But like with the budget now, we have like, we are allotted like $3,000 a year for gas mileage reimbursement. Yeah. So, and we can’t use it for doctor’s visits. We can’t, like there’s these stipulations Yeah. That are like Yeah. Difficult <laugh>, you know. Yeah. We, you know, as he comes into an adult now they said, you know, oh, well you can charge him rent because we obviously have a, an adult who is not gonna have a job, who is not gonna have health insurance, who is not, you know, they’re not going to be able to go on and, and have their own apartment necessarily self direction’s designed so that yes you can mm-hmm. <Affirmative> like you can now, but Alliet needs 24-hour care. So what do I do if I have him in apartment someplace and mm-hmm. <Affirmative> by person calls and says, Hey, I can’t make it.
Stacey Shearing (24:59):
You know? So, you know, being 21, you know, and having the self-direction, I do feel like there’s going to be more opportunities opening for him. But we have to now gain back, you know, some of our losses and hopefully we’ll be able to gain that back. I mean, does the tough thing with, with this regression disorder now is we don’t, we don’t know treatment. Mm-Hmm. <affirmative>, it’s where Guinea pigs Yeah. In this cycle. And you know, of course after the first few sets of infusions and I saw how yucky he felt, I was like, Ugh, is this the right thing? Am I doing the right thing for him? You know, because we are Guinea pigs <laugh>. Yeah. But at the same time I was like, we ha we, what other choices do we have right now? You know, I’m not, I I want him to be outside.
Stacey Shearing (25:49):
I want him to enjoy his life. Yeah. I want him to meet people just like we do for any of our kids, obviously. Yeah. But I’m not gonna set the bar so high anymore. Like I had been that so that he feels defeated in any accomplishments. You know, I want him to feel like everything he’s doing is an accomplishment cuz it is. Yeah. Every day he is making huge strides in one way, shape, or form. So just to get him back would, would be a beautiful thing. And like I said, we are seeing some promising, at least we can even get him out and about now. I mean, we had a, we had a time we couldn’t even get him out of bed. Yeah. He’d just sit in the dark. So very sad and not knowing why has just been so hard.
Stacey Shearing (26:33):
And my biggest thing is I’ve just been wanting to get people to understand that this is out there. There’s potential treatments. It’s difficult to diagnose, you know, like I said, we, we’ve had everything from behavioral therapists to, you know, trying to find a psychiatrist, which we never did. Our general practitioner, he’s been great cuz he just listens to me and <laugh> helps me. Yeah. You know, go, okay, yes, we can do this. You know? Yeah. And we’re fortunate. I mean, he is not, he’s not difficult. He doesn’t lash out. He’s not completely an angry, you know, he’s just very relaxed. <Laugh>
Abby Rose Esposito, MediSked (27:13):
Yes. See that <laugh>.
Stacey Shearing (27:16):
And we just want him see him come back to life. You know, we want, we miss him dancing and singing and doing spontaneous things that he used to do. Yeah. Yeah. Yeah. But I do think that, you know, with school ending that it’s going to almost be better for him. That we’re gonna be able to do better matches for him now and not have to feel like, well we had to send him to school because the school’s saying that we have to send him to school <laugh>. Right. You know? Yeah. Yeah. We can start adulting and we can start living life a little bit more. Like, you know, I wanna get him volunteering in our community. Last year he did some, we have a little wayside market Joseph’s wayside market and he was going down and helping, you know, deadhead some of the plants and watering and, you know, things like that. Yeah. He, you know, he loves those, those sorts of things. Yeah. More quiet and Yeah. Independent.
Abby Rose Esposito, MediSked (28:09):
So right now it’s probably pretty tough for him to communicate what he wants to be doing.
Stacey Shearing (28:17):
Very.
Abby Rose Esposito, MediSked (28:18):
So you’re at the point where you’re just kind of going based off of what he liked before.
Stacey Shearing (28:22):
Yes. So, or seeing if we can get that through. I mean, he used to be like in a bowling league. Yeah. He used to love to go bowling. That was our big winter activity, you know. Yeah. we’ve tried multiple times to get him skiing, but he just does not care about skiing at all whatsoever.
Abby Rose Esposito, MediSked (28:39):
<Laugh> Me neither. You know, we’re pretty similar. <Laugh> <laugh>
Abby Rose Esposito, MediSked (28:44):
It’s cold, it’s wet.
Stacey Shearing (28:47):
<Laugh>. Yep. We there’s a program up at one of our little ski resorts that’s really great. It’s a youth ski club at Hon Hollow, and they provide free skiing opportunities for kids with disabilities. Cool. Or financial, you know, difficulties to give them the opportunity. Well the, the last couple years we’ve gotten slides to Nice. Be able to take the kids out. And so we’re hoping that, you know, maybe now, you know, we, we didn’t do it this year for obvious reasons. We didn’t wanna startle him because Yeah. He, he does have more’s been a tough year. It’s been a tough year. Yeah. He’s got a lot more anxiety than what he used to have. So but maybe next year, you know, maybe next year we can get him on that slide and maybe he’ll enjoy that. So we just keep trying new things, you know, he, like I said, he does enjoy it outside except for the cold. I said, we’ll have to pack up the RV and go away for two months next winter. <Laugh>.
Abby Rose Esposito, MediSked (29:44):
Yeah. <Laugh> sounds good to me.
Stacey Shearing (29:48):
More warm. Right? Right. On post someplace warm. Find a beach. <Laugh>. Yeah. <laugh>.
Abby Rose Esposito, MediSked (29:59):
Well, as advocates, do you have any information from your experiences that you’d like to share with other individuals and families that can help them in
Stacey Shearing (30:09):
Their journey? Yeah. so one of the big thing, you know, it’s funny, I, technology sometimes makes me nuts. You know, like there’s so much with phones and mm-hmm. <Affirmative>, you know, seeing people on them all the time and that sort of thing. But I gotta say, without technology, I would’ve never found out the information or the support groups that I found. I’m so grateful for the support groups I found on Facebook. You know, I mean that was, that was huge for me. To be able to get the knowledge Yeah. To be able to go advocate for him and figure things out. Podcasts obviously, you know, <laugh>. Yeah. That was, that was huge. That was, that was the light that went off for us. So, you know, we, I did spend a probably way too much time on the internet researching, but I did find out a lot of information.
Stacey Shearing (31:00):
So, you know, we, we do have that beautiful resource. I have made it a point to always talk to Alliet no matter what, you know, I mean, I don’t always get a lot of feedback, but he understands Yeah. So much. And I’m trying to be very respectful now of his space. And I can, you know, tell by the way he looks at me sometimes just with his eyes of when he is had enough and, you know, when we need to keep trying harder mm-hmm. <Affirmative>. So, you know, I, I told him myself, I’ll never stop believing and you and I will, we will do whatever it takes to make sure that we can get you to a better place all the time. So you know, I guess I can tell parents that, you know, if it doesn’t, you know, feel right in your gut, it probably isn’t.
Stacey Shearing (31:51):
You know, I mean, there was a lot of doctors that just were so focused on telling me that he was just clinically depressed. And I’m like, he is, but there’s a reason why he’s clinically depressed. Right. This, this doesn’t happen. I mean, in eight months my son became a shell of himself mm-hmm. <Affirmative> and it was a horrible thing to watch. But I do, you know, have hope. I’m not afraid now to ask for help <laugh>, you know, I, I do, you know, parents need to ask for help. Yeah. When they need it. For sure. Go to your schools, go to your doctors, doctors, please become aware <laugh> of this disorder mm-hmm. <Affirmative> so that we can find the right resources for them. Schools. Oh my gosh. Like holy childhood, they, they have 85% of their children there have down syndrome you need to know about Down syndrome, aggression disorder.
Stacey Shearing (32:45):
You need to educate the families. And when you, when the schools and the teachers, they have our children the best eight hours of their day. Right. Yeah. So if you’re starting to see them pull back and doing things, you need to reach out and let us know mm-hmm. <Affirmative> because we don’t know. I have a son that, you know, I can I ask him every day when he comes home, did you have a good day? What did you do? Yeah. Every day. And I just keep hoping one of these days he’s gonna tell me <laugh> and I will always ask. But yeah. You know, we need to keep talking to them and we need to just reassure them constantly, you know, that there’s gonna be more and there needs to be more awareness. There’s a lot of, there’s a lot of people out there that you can reach out to for support and find that. So yeah. As as much ugly in the world as it seems there is right now sometimes there’s also definitely a lot of positive beauty, you know? Yeah. There’s some people out there that are remarkable to bring us all up together. Yeah. That’s the biggest thing I think. Wow. Right. We have a lot of friends. We have a beautiful community that adore him. That’s the really nice thing about small towns <laugh>.
Abby Rose Esposito, MediSked (33:59):
Yeah. Yeah, for
Stacey Shearing (34:00):
Sure. I post videos constantly of his improvements and his successes and you know, I’ll have two, 300 people, you know, cheer on him on. It’s amazing. <Laugh>. It is amazing. Well,
Abby Rose Esposito, MediSked (34:11):
I’m one of them now. <Laugh>. I’m very excited to hear how all of this goes.
Stacey Shearing (34:15):
Me too, me too. Like I said, we’re only into first, first round of treatment, but I think I have high hope. Oh, I have high hopes that, you know, like I said, just seeing him put his shoes on and go out and play basketball was just like Yeah.
Abby Rose Esposito, MediSked (34:30):
<Laugh> Yes.
Stacey Shearing (34:30):
Is working. Yeah. That’s amazing. You know.
Abby Rose Esposito, MediSked (34:35):
Well thank you so much for coming in. I’m sure this is not the most fun thing you could be doing. <Laugh>.
Stacey Shearing (34:43):
Thank you. Don’t mind very much. Hey, can you say hello? You were having a tired day today. He did have a rough and was sleep last night. Hmm. Huh. So I think you’re very tired. Yeah.
Abby Rose Esposito, MediSked (35:00):
Well please keep us posted.
Stacey Shearing (35:02):
We will. Absolutely.
Abby Rose Esposito, MediSked (35:04):
We are cheering you on.
Stacey Shearing (35:06):
Thank you. Thank you. And maybe, maybe we can come back with your, with your tech device and your talk chat and we can get you going and wanting to do that again. Yeah. And share that. Yeah. Because that’s a pretty remarkable thing for kids to have, you know, cuz with autism and, you know Yeah. Syndrome, all of ’em. They, it’s, it’s really cool how some of ’em have become successful with Yeah. Sharing their thoughts and their emotions. So
Abby Rose Esposito, MediSked (35:35):
Yeah. Yeah. I forward to someday hearing all about how you’ve been feeling through all this. So,
Stacey Shearing (35:43):
You know, we went to PT the other day and we were taking a little hike in the woods and we came back down and all of a sudden he just threw himself on the ground and rolled down the grassy hill <laugh>. And we were like thinking like he tripped and thought speak together, like Oh yeah. And he jumps up and he was like, Hey. And I was like that that’s the stuff he used to do. Yeah. Like that. He was always so silly. He’s always acting out a movie or something in his head. Yeah. And so just to see those moments Yeah. Coming back are, are, are really awesome. So I, my fingers are so crossed that will continue this path. Yeah,
Abby Rose Esposito, MediSked (36:22):
Yeah, yeah. I think it will.
Stacey Shearing (36:23):
I think so too. I think so too. Like I said today, I just know we’re very tired because he didn’t sleep much last night, and the hour ride over in the sunshine. Everything’s been crazy.
Abby Rose Esposito, MediSked (36:37):
Well thank you guys so much.
Stacey Shearing (36:39):
Oh my gosh, thank you so much for having us. I so appreciate you sharing our words.
