ETB 52: The Adventures of Parenting Adrian: Balancing Anxiety and Homeschooling with Sweet Success with Susan Aguilar

ETB 52:  Have you ever wondered what it takes to raise a child with Down syndrome? Embark on an intimate journey with Susan Aguilar, a mother who shares the honest truth about the joys and challenges she's encountered while raising her son, Adrian. From the ease of his younger years to the hurdles of his adulthood, she paints a vivid picture of their undying resilience.

We unravel the secrets of her success in homeschooling a child with Down Syndrome, with Susan sharing her experiences of crafting and tweaking curriculums for Adrian. Experience the flexibility of homeschooling firsthand, and appreciate how it has allowed Adrian to hone essential skills.  We then shed light on a darker side of their journey, as Susan recounts their struggles with Adrian's anxiety, which ebbs and flows with  the weekdays and weekends. Our discussion about the impact behavioral therapist, Josie Avila brought, reveals the coping strategies that have been instrumental in managing Adrian's anxiety.

Lastly, we look towards the horizon as we envision Adrian's future. As Susan shares her dreams for Adrian's independence, we talk about the importance of a robust personal support network. Ending on an uplifting note, we introduce you to Adrian's Tasty Treats, a testament to Adrian's entrepreneurial spirit. This endeavor not only helps Adrian manage his anxiety but also enhances his social skills. We invite you to join us as we celebrate love, resilience, and hope in this unparalleled journey of parenting.

Adrian's Tasty Treats
https://www.facebook.com/profile.php?id=100088650903014

The Jet Pac
https://www.thejetpac.com/

Swallowing and Speech Services
https://www.swallowingandspeechservices.com/

Psychologist
https://www.drmgarcia.com/
https://www.psychologytoday.com/us/therapists/michelle-garcia-the-woodlands-tx/77407

A Good Life Book
https://www.amazon.com/Good-Life-Your-Relative-Disability/dp/B000W5TBH6/ref=sr_1_1?crid=28PO1Q01XYIOA&keywords=a+good+life+by+Al+Etmanski&qid=1693769736&sprefix=a+good+life+by+al+etmanski%2Caps%2C113&sr=8-1

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

Transcript

Speaker 1: 0:05

Hey there, I'm Sandy Deppish, and this is the Embrace the Blessing podcast. Each week, I talk with a parent who has a child with a disability. They share their biggest challenge, their greatest joy and their hopes and dreams for the future. You'll learn about resources available to you and discover helpful hints and tips. If you want to be inspired and encouraged, stick around. Let's walk the road less traveled together. Well, thank you so much for being here. I was just thrilled to have you on. I was thinking about it today. Your family was one of the very first families we met when we moved to Houston that had a child with a disability very well, same disability as our son had. I don't want to steal your thunder I'll let you talk about that, but I remember my husband coming home and saying I just met the greatest family and they live in our neighborhood and it made us feel like we belonged.

Speaker 2: 1:06

Yes, it was very, I would just want to say, maybe just a divine moment, because there wasn't anyone else in the neighborhood that I had met that had a child with a disability.

Speaker 1: 1:18

Yeah, yeah. And it just felt like a kindred, like we had a kindred spirit between us.

Speaker 2: 1:22

We did, we really did. It was amazing.

Speaker 1: 1:25

Awesome and the families were what like three at the time they are a year apart.

Speaker 2: 1:31

So Josiah is a year older than Adrian. So Adrian was two, josiah was three. Yeah, yeah, gosh and now look at them, I know.

Speaker 1: 1:42

So what I would like you to do is introduce yourself and tell us a little bit about you.

Speaker 2: 1:47

Oh, about me? Well, first let me introduce myself. My name is Susan Aguilar Aguilar. In Spanish, a series is Aguilar, right, yeah? So I well, I want to tell you a little bit about my family, if that's okay. Yes, I have. I've been married to my husband, julio, for 28 years now. We have two kids. My oldest is Juliana, she's 24, 24. And Adrian is my child with Down syndrome, and he is 20. And we live in the suburbs of the Houston area, the chaotic Houston area.

Speaker 1: 2:25

Yes, it just keeps growing and growing and growing. It does so. Tell us a little bit about Adrian, because that's why we're here. We want to learn more about what life has been like navigating this path with him.

Speaker 2: 2:37

Well, in the beginning, I mean it was really and I shouldn't say easy, but when they're little it was just easier. It was easier to navigate life with them. You know he was small, he was, you know he obeyed, he listened. When he got older it's we had issues with him as far as anxiety issues and we couldn't figure out what that was.

Speaker 2: 3:03

But for the most part, Adrian is just a very gentle yes, a gentle spirit, very gentle, just like his dad, and he's very laid back, loves music, loves to dance, loves meeting new people. I mean, he absolutely likes meeting new people. He likes going up to people and, just, you know, introducing themselves. If he sees a person with a disability, he'll say, hey, I know them from the center, or I know them, or he'll go up to those people with the disabilities because he feels like they're like him. Yeah, yeah, you know, and he understands, and so he'll go up, or he'll tell me, you know, let you know, or he'll point for us to go and introduce ourselves. That is so sweet, so, yeah, and so he does that. But for the most part he's just very, he's a very chill kid for the most part. He really is Well.

Speaker 1: 3:55

so let's back up to when, before he was born, did you know you were going to have a child with a disability?

Speaker 2: 4:01

None at all. I didn't know at all, and it wasn't until he was born, that we found out, Did they tell you immediately or did it?

Speaker 1: 4:09

oh the day, Okay yeah.

Speaker 2: 4:11

Well, they told me hours later because I had a C-section with him. And so they came in and before they even gave him to me, you know, the nurse was at the foot of my bed and telling me your son has a lot of characteristics of Down syndrome. And I was like, what does that mean? I had no clue, Sandy, no clue what Down syndrome was. I had a neighbor who her son had Down syndrome, but I yet didn't understand all of it. You know, I didn't know what he had. I knew he had a disability.

Speaker 1: 4:42

Right.

Speaker 2: 4:43

And she was a God sent. She really was. She came in and helped and just, you know, helped with a lot of information and encouragement and just told me it was going to be fine. But I didn't know. And when they told me that he had Down syndrome, my first thought was, like, is he going to die? You know, that's what was my thought. I did not know anything about that. I thought it was an illness. Right, that's really what I thought, and so I wasn't educated about it. So after they told me you know, no, they lived about 50 to 60 years and like, oh, okay, let me have no problem as long as he's not going to die and there's a story behind that that I can't go into right now, but it was. It was more of a reassurance. Okay Then. And then in my part I knew we were good and we could handle what comes down the road.

Speaker 2: 5:36

So, and I know a lot of people don't feel that way, but it was my journey and there was reasonings for that. As long as he wasn't going to pass away, we were going to be good.

Speaker 1: 5:44

Right, and so how old was the neighbor's child that had Down syndrome?

Speaker 2: 5:51

When Greg was probably in his twenties. Okay so she had a lot of experience.

Speaker 1: 5:57

That was a great mentor for you to live near it was.

Speaker 2: 6:00

It really was right behind me and in and when we lived in New York. You know, in the homes in New York no one has a backyard fence like we do in Texas.

Speaker 1: 6:09

Right.

Speaker 2: 6:10

And he was just my backdoor neighbor and we could, just you know, cross our backyards and go into each other's house and just you know, and that's when I had a better understanding what Down syndrome was and educating myself. Yes, after that you know, what it was.

Speaker 1: 6:25

What a blessing it was to have her right there. You know, when Josiah was, when he was diagnosed, when I was four months pregnant, we in Udero that we were going to have a child with Down syndrome and my reaction was kind of like, wow, this is going to be cool we have, for typically developing kids Like this will be fun to have a different adventure. You know, like I'm always up for adventure so I was thinking it was a fun adventure. Well, yeah, god laughed. But anyway, what was so interesting is the woman that lived next door had a grandson who was, I think, maybe six to nine months older, who had Down syndrome.

Speaker 2: 7:02

Oh, wow.

Speaker 1: 7:02

And so she said come on over, meet my grandson, meet my daughter, meet the family. You can see that. You know, he's just another child, he just has the medals to jump over, you know. So I love that God put people like that in our paths when we were just in that very new stage of trying to understand what it was going to be.

Speaker 2: 7:20

you know, and you know the funny thing about that before we had moved to New York you know we were my sister-in-law was praying over us. As she said there's going to be a woman in your life that's going to help you. Wow, and I'm like, okay, no clue as to what she meant and that was before you.

Speaker 1: 7:39

I mean obviously you didn't know you were going to have a child with Down syndrome or anything.

Speaker 2: 7:42

Yeah, yeah, yeah, and that was her.

Speaker 1: 7:47

That's amazing. Do you still keep in touch with her?

Speaker 2: 7:49

Oh yeah, oh yeah. She's one of our biggest cheerleaders with Adrian and us with Craig. Yeah.

Speaker 1: 7:55

It's really nice. Yeah, we still do.

Speaker 2: 7:57

She lives. You know we don't see her, but you know we're in touch through Facebook.

Speaker 1: 8:01

Yeah, oh, I love that yeah. So I know you have a lot of these because Adrian is an amazing guy, but share your greatest joy in parenting Adrian.

Speaker 2: 8:12

I would have to say when we homeschooled him, even though it was hard homeschooling him was hard in the sense that I had to modify all of his curriculum, but I think the greatest joy was seeing him graduate from high school. It really was. That was one of our greatest, you know, my greatest joy, because I knew that we had accomplished the homeschooling process, which is not easy in the first place at all, and then to have to modify his curriculum. But yet he had an understanding, a very good understanding of what was being taught to him and he enjoyed it. And he especially enjoyed science and history. And a lot of that was because it was hands-on. I mean, I think he could do without math and spelling and all of that, but because our curriculum was, I made it hands-on for him.

Speaker 2: 9:09

He really enjoyed those subjects and he still, to this day, he still has. You know, we can be going someplace and he'll see a planet or he'll see a certain fish or whatever. You know what we had studied and he'll say you know, he'll tell me what it is. So he still has memories, he still has. What do I want to say? He still has, he still remembers. He still remembers a lot of the teachings that we did.

Speaker 2: 9:35

And yeah his accomplishment when he graduated from high school was just really overjoyed. It was just a joy to really, you know, see him and he was proud.

Speaker 1: 9:46

That's what I was going to say. He was beaming.

Speaker 2: 9:49

He was.

Speaker 1: 9:49

I mean, he's always a pretty happy kid when he's out and about, but you know, to see him beaming at his graduation he was definitely so, so proud. It was just a huge, huge accomplishment.

Speaker 2: 10:00

It was a huge milestone for him. It really was, and for you too, I mean yes.

Speaker 1: 10:05

Homeschooling. You know, I homeschooled a few of our kids when they were very little, for, you know, four or five years and it is not an easy task. It's a daily grace filled get me through this journey kind of a thing. And those are typically developing kids, right, yes, but you throw in a child with challenges and, like you're saying, modifying the curriculum, like how did you know, did you? I mean, I guess what I'm asking is that was probably a very labor intensive process. It's not something you can do on the fly. You have to prepare.

Speaker 2: 10:35

And that's what I would do every night. You know, as often as I could, I would just prepare and we use curriculums that were, you know, like, for example, science, we use the apology and they have a junior book and so I use the junior book and yet through the junior book, I still had to modify, you know, to his level and just create. I mean, I was online a lot printing and cutting and just just it was. It was just it was a lot of work. It really was.

Speaker 2: 11:01

But you know, if, when I look back, I did, there was a point, I think in the 11th grade, where I did, I was just burned out and I remember just telling him that year I said this year we are just going to focus on your reading, your math and your spelling, you know, because it got to the point where I couldn't open a book again. Yeah, I just couldn't open a book because I was so burnt out, because it was hard, but we got through that year and he was okay with that. He was okay with that. So when it came through his 12th year, the grade, you know, we went back to it and it was better, but I was like, okay, last year, we're good.

Speaker 1: 11:41

But that's the beauty of homeschooling you can amend the days or the weeks or the year to fit what's going on in your life currently, and you needed a break.

Speaker 2: 11:50

I did.

Speaker 1: 11:51

And that was very wise of you to structure it that way, so you could have some break down time too. But here's what I think you need your own graduation party. Why don't we celebrate you, yay, you made it too.

Speaker 2: 12:05

I retired, but yet I didn't, because we still, three days out of the week, we still work on reading, phonics, speech skill and math, and it's just to keep his brain going, it's just to keep him not so much busy, but just to still have an understanding of you know and he can read and those are some very proud moments.

Speaker 2: 12:30

They're small books, they're still books of the first or second grade, but he does a really good job with those and it's just I'm very proud when he does that. I always just told him you're doing such a great job. His math. We've gotten to the point now where in his math we still continue to work with money, even though we're a society right now that doesn't use a whole lot of cash. But I, you know, he still knows, you know the bills and the coins and what they are. But now with math it's more of using his calculator.

Speaker 1: 13:01

Yeah.

Speaker 2: 13:02

So you know, and it works.

Speaker 1: 13:04

Yeah, exactly, does he enjoy doing the schooling now?

Speaker 2: 13:08

He does when it's because it's shorter. Yeah, I mean, there's times when he wakes up and he's like you know, what's on the agenda today.

Speaker 2: 13:16

And I'm like if you went to school and he's like, okay, let's just, you know, his attitude is like let's just get that out of the way, you know, because he wants to go do what he wants to do for the rest of the day, which is dance and play with his toys, or you know. So, yeah, I mean he, he tolerates it. I should say he doesn't complain about it, he tolerates it and he knows it's for a shorter time, it's only 45 minutes. Oh yeah, that's great.

Speaker 1: 13:43

I love that you're continuing to stimulate his brain and keep him active with the things that he needs to learn. That's awesome. So now I would like you to tell us about a time that maybe was really difficult for you guys. Think about what it was like when you walked through those moments, and take us to that time.

Speaker 2: 14:02

I want to say it was about two years ago, maybe two or three years ago, when he started having anxiety and we didn't know what it was. We didn't know why his hands would turn blue, his lips would turn blue, he would vomit. You know, just you know things that made him anxious. He would just throw up. We cleaned up a lot of throw up, but we didn't know what it was, even though, like, I took him to the gastrologist, I took him to different doctors trying to figure out what is going on with him. And I remember my daughter, juliana, telling me she was taking a psychology class. She goes you know that he's playing you. You know that he's manipulating you. I'm like, not, my sweet boy, he's not manipulating. That was hard for me to wrap my mind around. It really was. I couldn't believe that he would do that because, you know, then I started seeing a lot of it was behavior, because he'd be fine on the weekends, no issues, but during the week, you know, he was having issues and it got really escalated. We just, you know, started working with him and telling him you can't do that, but he would still do that, he would still have anxiety during the weeks. And finally, about a year ago, we were able to get a behavioral therapist, josie Avila, with Michelle Garcia.

Speaker 2: 15:36

Psychology came into our life and what a concept she was. She started working with him. She would come weekly and start working with him and it started helping because he started understanding that it wasn't just us trying to tell him. This behavior is not acceptable. She started telling him. She started telling him and she started giving us coping skills, giving him coping skills what to do. And it took a while. Still, it still took a while. He still had anxiety. He still had, for example, when I had a calendar and I would always fill his calendar up with all his activities and I guess just the thought of some of the activities when he would have to think that he was going to go do those activities it would just stir up anxiety in him and he would just be so nervous he didn't want to go. And trying to get him there was hard as well. But once we got there, he was fine. He saw that he could enjoy the activity, but he was getting him there. And so now what I do is I don't put all of the extra activities on the calendar anymore. I, just an hour before. I'll just tell him OK, let's get ready, let's get going. And that has seemed to work. And Josie was here yesterday. She now comes every three months. She doesn't come weekly. She helped so much with Adrian. She worked with him, she talked with him. She just really motivated him to be an adult. Use your coping skills. Learn how to use your coping skills to where, if you have anxiety, you're able to use those skills and come out of that. And it has worked. It has worked.

Speaker 2: 17:34

Yesterday we had an issue. Well, he didn't want to go run errands with me, but there's no one to take care of him at home, and so I had to go run the errands and so he started using them and he's starting to use them and he's starting to realize, oh, this is what I need to do and this is how I need to do it. And so she came in yesterday and we told her the story and she was just very proud. She just says I am so proud of you, adrian. She says you are becoming a man. And she talks to you. She goes you need to be a man, you need to be an adult, don't act like a baby. And he was just he was. He was really happy to see that. She was just proud of him.

Speaker 1: 18:14

Yeah, she was proud. Well, it sounds like he's made fantastic progress.

Speaker 2: 18:18

He has, he really has. So we still have our hiccups, we still have issues, but they're not escalated like they were.

Speaker 1: 18:28

Right, yeah, and you know what? It's interesting that you're talking about anxiety, because for years I had no clue that my child had anxiety.

Speaker 2: 18:38

Yeah.

Speaker 1: 18:38

And when I think about it now, it makes so much sense that I mean, we didn't have the same symptoms of the anxiety, but very clearly a lot of anxious thoughts or whatever was going on in his mind caused some behavior challenges. And you know, I don't know how I discovered that, I don't know. Maybe I read about it in a book or something, but it was like a light bulb moment, like, oh my gosh, it makes so much sense. And I think that if you have a child with Down syndrome specifically, and their behaviors are becoming a challenge as they become teenagers and young adults, that might be something you want to look at, because I was clueless.

Speaker 1: 19:20

Clueless, I mean, I try to research and stay on top of things and try to understand everything that's going on, and that was the piece that just fell through the cracks. And now I'm very aware and, like what you were saying, adrian was very calm on the weekends but very anxious during the week. What I noticed is with one of the caregivers that Josiah had had for a long time he's a different kid. He's very calm, very peaceful, and then when that person is removed from the situation, we have this bundle of energy that's spiraling out of control sometimes, and I realized that with that individual Josiah felt total peace.

Speaker 1: 19:59

There was like yeah, totally Like there was a confidence and security and I don't understand how it attached to that person, but it did, and if we could replicate that and sell it in a bottle would be millionaires. But we've tried to mimic whatever that was and it's just not there for anybody else so far. That doesn't mean that it won't be, but it's interesting to me that with certain people that anxiety completely is gone, but then when they're out of the picture they're back to lots of coping, trying to get through the limits.

Speaker 2: 20:34

And that's what happens with Adrian. Yes, and because his anxiety would subside because his dad was here, or because Julia was here on the weekends, or it could have been because we didn't have anything scheduled.

Speaker 2: 20:47

Or the weekends were fun. Do you see what I'm saying? Yes, and it could have been that too. And so it was. And again it was with the person, I mean his dad. Adrian is so glued to his dad that when he gets married he's like I'm going to tell dad or dad's my favorite, you're not my favorite anymore. It's like it's OK.

Speaker 1: 21:10

I don't want to be your favorite.

Speaker 2: 21:12

It's OK, I'm glad he's your favorite. He'll tell me, or he says he's my best friend and I'm like I'm glad he's your best friend. But yeah, it is, it is. It's with a certain person, it's a bond that they have.

Speaker 1: 21:27

Right.

Speaker 2: 21:27

And so.

Speaker 1: 21:29

I'm so grateful that they, that at least they have that with someone where they have those days of moments where they're peaceful and calm and not feeling that anxiety. You know, it's interesting that you mentioned about the anxiety causing causing him to vomit, because I just was talking to a grown 20 something like closer to 30 something woman the other day and she was saying that she was very anxious and every time she gets extremely anxious she vomits, and I had never heard of that, you know.

Speaker 1: 22:00

I mean I was aware with Adrian, but I hadn't heard of that from other people. So I mean that makes sense.

Speaker 2: 22:06

And to me, I think it was also a way that he couldn't really express verbally what was going on, and so that was the only way that he was able to express it. It was just hey, I'm not doing. Well, I'll show you.

Speaker 1: 22:24

Let me show you how bad it is. Oh God, bless him. Well, I'm glad you're on the other side of that. You know, and that had to be a really rough road. Do you have any helpful hints or tips that you use to keep a positive attitude when things get really hard, Like in those moments in those couple of years when it was challenging and he was you were cleaning up constantly. Yeah, how did you stay positive? How did I stay positive?

Speaker 2: 22:47

I cried a lot. No, I had to really just.

Speaker 2: 22:50

I had to just really run to an emperor and just, you know, because there was times when it was just like I don't understand this, this is hard, you know, I don't know how to get through it, and there was times when I felt like we were never gonna get through it. You know, because it was a daily challenge, a daily challenge, and I just felt and I would just, you know, just to be honest, would just run to God and just say I can't do this and just you know, being in His presence and in His word, I would, you know, come out calmer and with a better perspective and more clarity of mine as to how to handle it, because it was hard you know, it wasn't easy at all, especially having to clean up all the time.

Speaker 2: 23:39

I remember one time, you know, I would try to hurry up and get ready, you know, if we were going someplace and he was playing with his toys and I was getting ready and I came out and he had throw up all over him and he just looked at me like what are you gonna do? And those moments I mean it was just like and there was a lot of those moments like a defiant moment where he was being defiant on purpose, and that's why I knew it was anxiety, but I also knew it was behavior.

Speaker 1: 24:13

Well, it sounds to me like it was anxiety that caused him to be so to the point of vomiting. But he learned this delays us from going, or it stops us from going, because now I probably need a shower, I've got to have a change of clothes, We've missed the window to get where we're gonna go for the event we're going to. So he's smart and figured out oh, this is working for me, which not fun for you guys.

Speaker 2: 24:41

No, and we would clean up and we would have to go and continue to do whatever we were going to do. But believe me, I was feeling, you know, because those were hard times when you know you are ready to go, and he just does that.

Speaker 1: 24:57

So do you think that it was the behavior therapist that changed everything, or do you think, like he matured a little bit? I mean what he did he did mature.

Speaker 2: 25:08

I do believe that he was coming out of whatever that teen year or was, and he did, he did mature, he started maturing and with Josie coming in at that same time, it just worked together. Yeah, that's great.

Speaker 1: 25:23

Yeah, so I mean the takeaway from this, and this is why I always ask parents what's you know a hard season that you walked through and how did you get through it? It's because we never anticipate that things are gonna be hard, especially when they're little and like you said they're so easy and they're so cute, and that's not to say all kids are gonna do this, but there come seasons where it can be really, really hard, and what I want people to understand is it doesn't last forever.

Speaker 1: 25:49

Now it does, it's hard and you need support to get through it. You need that's what I said. I never spent more time on my knees than I did during the years when we went through major challenges.

Speaker 1: 25:58

But it brings you closer to God and it gives you such a stronger faith, and for me, I had to just let it go and go. He's yours. Like you got this kid because I don't you know, but I think parents need to know it's not gonna last forever. You will get through it and you'll come out on the other side stronger, and I think the plan is then that you reach back and help others who are following behind you to help them know you're gonna be okay, like the neighbor you had with a 20 year old.

Speaker 1: 26:24

She's like it's gonna be fine, you're gonna be all right with this, you know, which is pretty awesome. So do you have a product or a resource that you can share that has impacted your world in a positive way?

Speaker 2: 26:36

Other than Josie. No, I mean we go to Swallowing and Speech Therapy. Miss Elizabeth has really helped Adrien in his speech therapy where he's now working on putting sentences together. You know Adrien usually speaks with one word or two words and you know you have to kind of figure out what he's trying to say. But now we're working with with trying to put sentences together and yesterday when Josie was here, she's like I am understanding him a little bit more when she was speaking to him because she was just speaking to him and she's like his speech is much more clearer and he's speaking a little bit more in sentences versus where Adrien used to speak, you know, with one or two words he would ask him a question and or he would say one word and you had to decipher what he was trying to say. But Swallowing and Speech is a good resource.

Speaker 1: 27:39

I'm glad you mentioned that, because that was something I was gonna look into during the right before the pandemic started and then it's been out of my head ever since. So I'm glad you said that I need to look that up for Josiah. Yeah, that's good.

Speaker 2: 27:50

I mean. Well, we also attend the Jetpack, which is something that he has absolutely loved. They have a program for individuals with disability and they challenge them. You know they do challenge them every time that they're going to have a performance.

Speaker 1: 28:07

Tell everybody what the Jetpack is. What is that?

Speaker 2: 28:09

Well, the Jetpack is a theater, vocal and arts performance program and what they do is they put on a lot of shows. They put on a lot of drama shows, a lot of theatrical shows, and they have a class for the individuals with special needs and it's just. It's been really good. It has been one of Adrian's favorite activities.

Speaker 1: 28:36

You know, too, Does he get anxious before?

Speaker 2: 28:40

he goes there Not at all Wow.

Speaker 1: 28:41

And that's so interesting to me, because he has to perform and he likes it. No, he likes it.

Speaker 2: 28:46

That causes anxiety for most other people right, but not him. He absolutely likes it, never gets nervous. He never gets nervous when he goes there because it's one of his favorite things.

Speaker 1: 28:57

Yeah, yeah, that's really cool. I love that. What are your hopes and dreams for the future for Adrian Well?

Speaker 2: 29:05

short term is to continue to work on with his speech, to get him to communicate with other individuals where other individuals are able to understand what he is saying. So that's my short term goal with him to work that way. Long term, I guess it's just really to have him be more independent, continue to work on his life skills. That I really don't have a plan for long term just yet.

Speaker 1: 29:43

Right, yeah, I think that's the way a lot of us are. I mean, it's hard to think about the future for our kids. I mean, for me it's easier to plan for just the next week or the next couple of months, but to see way into the future is like ooh, that's a lot, because it's a lot to just get through the day sometimes.

Speaker 2: 30:02

I was going to say that just trying to get through the week, just trying to plan for the week, is a little bit challenging sometimes, and not always, but sometimes, and it had been in the past. But even the thought of long term where is he going to be? Whether is he going to be in a group home? I don't know. Is he going to be with his sister when we're not here? I don't know. So those are the things that I really don't have quite of a vision for just yet.

Speaker 2: 30:31

I think my whole thought on that is to just get him to learn more life skills, to be independent. Can he stay home by himself for several hours? Can he prepare a meal for himself, not on the stove or not turning on the oven, but just a basic meal for himself? Can he prepare those things? Those are some of the goals that I would like to see and that we are working on through his HCS program. So those are the only goals that I have right now. Like I said, I don't have anything that's just out in the future.

Speaker 1: 31:08

Right, yeah, and here's where I always default whenever people ask questions like that what's going to happen when he's over? I don't know.

Speaker 2: 31:17

I don't know God does.

Speaker 1: 31:19

God does and he'll work out that plan and he'll clue me in when I need to know. You've heard us talk about the personal support networks.

Speaker 2: 31:27

Yes, I have. Yeah, Jennifer, I met up with Jennifer at the Verne Cox Center. There was a swim day and we were talking and she was telling me a little bit about that. Amazing, really.

Speaker 1: 31:39

I'm reading the book that started that whole process. It's called A Good Life.

Speaker 1: 31:43

I'll share the link with you and I'll put it in the show notes. It's an amazing book about how so many people who initially were even resistant to the idea or just not sure they wanted to open up the privacy of their lives to their family, to others. But what happens is you're slowly releasing. That's what we do with our typically developing kids. We slowly release them from us and wish them their own independence and have a life of their own.

Speaker 1: 32:10

But then when we have a child with a disability, we tend to cling because we don't have anybody we can feel comfortable just releasing them to, and so the idea is to empower other people to get to know our kids and everything that they need to support them as well as we know those things, so that when we're no longer able to if it's even just for a short term maybe you have a surgery or something or for the long term, all these people know your child so well that it's like we got this. And it doesn't mean they're going to come in and they're going to take over and your child is going to move in with them. It means that they are empowered to be able to take next steps according to the wishes that you have, and it's a lengthy process. It's like a marathon, not a sprint, so you have time to think through things together as a group. I love it. I am so on board with this idea.

Speaker 2: 33:03

We're having.

Speaker 1: 33:03

Joe Sy's first meeting with his team next week and I'm just ecstatic because I'm like sit down and let me tell you what you need to know here it comes.

Speaker 2: 33:14

That's the beauty about what Jennifer was telling me is that it's just my husband and I that know all of Adrian's information, and she says her thought was, when other people know, like you said it, and we're not available or something happens to us, even if it's short term, all these other people know. They know his doctor's names, they know his appointments, they know his Medicaid, Medicare, whatever Social Security, they know all of more details about him in order to be able to care for him.

Speaker 1: 33:48

And it's so freeing to get that off your shoulders, like I'm not the only one carrying all that around in my head. Somebody else knows it too. And what I love about it is like if there's something you need to know, you can assign that or ask if anybody in the team is interested in hey, could you research this for me? I really don't have time, but I need to know about this. And then they can learn about that for you and share it with the group. And now everybody knows that. You know it's just, it's such a smart idea.

Speaker 2: 34:14

And I think it's a smart idea in the sense that, like you said, everyone knows the need Right. You're not the only ones.

Speaker 1: 34:22

And you know, what's really interesting to me is that Josiah tends to prefer to be isolated if he doesn't like to be in large groups. He doesn't like to be around a large amount of people. And at his very first meeting, which was just, you know, telling everybody what this support group is like so that they can make a decision whether one to be a part of his team or not, he stayed in the meeting the entire time. It was like two hours. He sat on the couch and listened. I was amazed by that.

Speaker 1: 34:52

And so the other thing about the personal support network sorry I'm laboring this, but I'm just so passionate about him is that it helps the individual, who is the center of this support network, understand that they are not alone, that they have people who care about them, and oftentimes our kids and us lead more of a life of isolation because of the disability, and now they have built in friends who are there because they want to be, not because they're paid to be. Exactly. And that really struck a chord with me is that it's gonna provide friendships for him, and I was like all about that.

Speaker 2: 35:30

Well, for him to stay there I mean he was just. I mean it has a lot of understanding, more than I think we all really realize and I think for him to listen and know that the different individuals were there. I think that made a difference. Yeah, yeah, that was pretty cool.

Speaker 1: 35:47

So if you were sitting with someone who was just about to step in your shoes, a new mom who was just about to have a baby and they were gonna hand that baby, before they hand that baby to you, they were gonna say, oh, he has all the characteristics around Tindra, she's about to walk the path that you walked. What encouragement would you give that person?

Speaker 2: 36:05

I would tell her it's going to be okay. It is going to be okay and I would say, embrace the blessing, like you would say, because it is a blessing and the life that one lives with a child with a disability has opened so many doors of not only meeting so many amazing families yes, and their child with a disability. You know what? I will go back into that and in a little bit, but I would just say it's going to be okay. Find a good support group. Yeah, find a good support group, because you'll be walking the path alongside with others who are going to have the same challenges or maybe a little bit different, but it's about the same.

Speaker 2: 36:50

And to have walked this walk with people with disabilities and the people that we have met and encountered, it's just a rich world. It really is. I mean, people on the outside probably look at us or look at the families and think, oh, they feel sorry for them because they have a child with a disability. But I think we, as a parent, I think we are their biggest cheerleaders. But not only that, we are the cheerleaders for all of the individuals that we meet. Right, you know, when they have these accomplishments, we really cheer them on as well, because we want to see them meet their goals or just meet these accomplishments, and I think that's a beautiful world. What I have noticed is that there is not in this community that we have been in, there is not any competition within each other.

Speaker 2: 37:45

I have noticed that, yeah, every parent shares the other individual's child right accomplishments on. I mean, we support them, we cheer them on, we're glad, you know, we embrace them and we just love on them. We really, really love on them and that's. You know. It's a beautiful world. It really is, and I'm so blessed to be in it. Would I ever had the chance to do it over again, I would want to be here Because, like I said, the people that you meet you know, and not only the people, the individuals, their hearts, yes, you know, they're just gold.

Speaker 2: 38:27

They really are.

Speaker 1: 38:28

They're just pure souls, just full of love.

Speaker 1: 38:31

I mean, you know, that's always the you know cliche people say oh, people at Down syndrome, they're just so loving Well, yeah, there's other sides to that as well but they just are so unconditionally loving that's probably the better way to say it, cause they have their moments too, but they just accept, and the parents as well. The parents are so accepting. You know like we don't always fit in because of you know the challenges that we have, but for my son I'm speaking. But he is so welcomed and embraced, no matter where we go, the moms are like we got this, we'll help you, he's okay, it's all right and you feel very welcome, even when internally you're thinking I need to just get out of here cause this isn't going well. No, there's, I totally agree. I think if we had not had a child with a disability, we wouldn't have met the most amazing people that we've encountered in our lives, people who are so genuine and loving and selfless and compassionate. And yeah, it's just, it's like almost like a secret club, you know.

Speaker 2: 39:35

Kind of yes, yeah, I have to agree with that, it's just, but it's just a club. Well, really it's not a club, it's just a community that just has changed lives. I mean, our lives have been changed, Our lives have been enriched by it. Really it has. I mean just, and not only meeting, you know, other parents with their children with disabilities, it's just the community. And I think the community is really starting to accept, not the disability community but the community outside that's watching, that's looking in, they're starting to really realize you know, hey, this is a pretty cool world to be in, yeah yeah, it really is so.

Speaker 1: 40:19

but yeah, I think if that mom had a chance to talk to you and she was about to walk that path, she would be so encouraged, because that's a great message and it's true. It's not something that you're just fabricating, that is your reality and that is truth. Yeah, Fantastic. Well, thank you. Wait, wait, wait, wait, wait. We cannot end this without sharing Adrian. This is what I thought you were going to say about his greatest joy. How could we skip this? Tell everybody about what Adrian does for his hobby slash business. Yes, he does.

Speaker 1: 40:51

Well, there's a couple things, but go ahead, tell us about the one, yeah.

Speaker 2: 40:55

Okay, so this started about what four years ago? A little bird whispered in my ear and I'm looking at the little bird. When you had whispered in my ear. Hey, you know, have you ever thought about having Adrian bake something? Because we were talking about right, we were at a vending show and we had talked about that and I just kind of thought why would he bake anything? Why would he even?

Speaker 2: 41:19

you know why would we go down that path? You know, I think that's the family. We still have some challenges with him, but anyways, we ended up giving Adrian a family recipe, and it was a family recipe that was very easy to make, and I knew that this was a recipe that he could, you know, work on, that he could make himself.

Speaker 1: 41:40

Right.

Speaker 2: 41:40

And so we had him and it's been four years I was looking at the data it's been four years. We had him start making Mexican wedding cookies and we came up with the name. That was called Adrian's Tasty Treats, and it has really evolved. It has. He started, you know, making cookies, selling them to friends and family, and then from there we started doing shows, a few shows, and I remember one time we did a fundraiser for the Step Up for Down syndrome walk and boy, that was a lot of cookies. He was like this is a lot of cookies. But the thing about the business is we don't like, for example, we will do shows in the spring and in the fall. We really don't do anything in the summer. It's just too hot and also the reason I do that is I don't want him to get burnt out on baking. He really enjoys it and I think the highlight for him is he likes he loves meeting his customers.

Speaker 2: 42:40

He loves meeting new customers. He really really does, and I think that's the reason why he's so excited about this and I think that really really does. And even when we do the shows, he is excited about doing the shows because he likes meeting new people and he's out there and he's selling them and we're teaching them, we're coaching them Okay, this is what you need to say, this is how much they are and so it helps with his social skills as well. It really really does. And so now I finally, after four years, put him on Facebook, on a Facebook page, because I just was a little, I'm just a little leery about, you know, social media, especially with my son, but he now has a Facebook page which is Adrien's Tasty Trees. And yeah, no, and when I say it has evolved, I mean we have new shirts now, new chefs codes and we just it's growing, little by little, it's growing.

Speaker 1: 43:38

And that's how I want it to grow. Do you ship the cookies?

Speaker 2: 43:40

We do. We do ship the cookies we do. We've had done that in the past. We will put the link down below we. I think the furthest they have gone is to Montana.

Speaker 1: 43:51

Yeah, yeah, I'm here to say that these cookies are amazing and you can't just get a dozen, because the first dozen is like the appetizer they just melt in your mouth. And then the second dozen is like now I'm really having my cookies. So two dozen minimum limit, yeah, for orders.

Speaker 2: 44:09

Yeah.

Speaker 2: 44:10

But, they're really. They're really. They have been very popular. We've tried adding a different cookie, like a couple of weeks ago we started because it was so hot outside. We said, okay, let's just go in and bake and see what else we can create, and we made these wonderful cookies and they came out so great, and then I was, we went in there to make them again. Just didn't turn out, I don't know why. And so you know, there's times when I feel like you know, I would like to add another product in there, but it just doesn't seem to work out and even if some of the products are has more steps in it. I think that kind of throws him off, because this recipe, this certain recipe for the Mexican wedding cookie, he knows it.

Speaker 1: 44:54

Yeah.

Speaker 2: 44:54

You know, he knows it, you know and he knows what to do, he knows the steps, and so when I throw in something else, it just takes him a while to adjust and to just really understand it. Right, you know so I think that's how their mind works. When they have something that they know how to do it. It's habit for them? Sure, it's habit, and so we'll see. We'll see if we continue with this other product.

Speaker 1: 45:22

Yeah, his cookies are amazing. I love them. The other thing I want you to mention is about his drumming. Is he still drumming?

Speaker 2: 45:30

Oh, yes, he still drums. We had to, you know, since we moved into our house, we downsized and so we don't have a whole lot of space. So his drums are in my closet right now, and so he does. He goes in there and he'll drum. The only thing is that, you know, it would be nice to have someone come in and teach him, but then again we don't have the time because he has a very busy schedule also, right. So, but yeah, he does, he still goes out there, he still drums and he still plays his music. He doesn't do it as often as he used to, but he still does.

Speaker 1: 45:59

And he I mean he was invited to at the One Vendor Fair. He performed on the stage to his drumming, which was amazing. I know he's done that a few times. So yeah, you know, if you have a young child with a disability, realize that their future can be very rich. They can become a musician, they can become a baker selling fabulous cookies. There's a lot of things they can do. So just because they have a disability doesn't mean they aren't capable of accomplishing a lot.

Speaker 2: 46:24

Exactly, exactly, yeah, awesome.

Speaker 1: 46:28

Well, thank you so much for being here, Susan. This was very enlightening. I loved having you on.

Speaker 2: 46:32

I'm so excited you're here with us today. Thank you so much. Thank you for having me.

Speaker 1: 46:37

Thanks for listening to the Embrace the Blessing podcast. Visit embracetheblessingcom slash podcast for show notes and links to any resources mentioned. If this has been beneficial to you, please share it with a friend or post it on your social media pages. Join me next Wednesday for more inspiring stories from people just like you.