Episode 24 – What do Latinx parents wish they knew when they received their child’s Down Syndrome diagnosis?

2021-10-27_LatinXperts

Daisy: [00:00:00] Hi, my name is Dr. Daisy Morales Campos. I’m a research assistant professor who. Cancer prevention and disparities research with Latinos here at the Latino research Institute. I’m also the mother of a 10 month old little girl who has down syndrome. Her name is Marla, and I’ll be hosting this week’s Latin experts episode in honor of down syndrome awareness month.

Today. We have the honor of talking with Mary Ann and Belarmino Castellanos, who are parents of nine-year-old Luke and Norma and Jose Urbino who are parents of three-year-old Elías about raising a child with down syndrome. So I’d like to welcome you.

Belarmino: Thank you very much. Thanks.

Daisy: So we’ll get started with our first question of the evening. First off, what do Latinx parents need to know about supporting a loved one with down syndrome? [00:01:00] Norma, Jose, you want to go first?.

Phone Guests: To support a loved one with down syndrome, is to treat the child the same as any other kid. Don’t make them feel any different. Don’t make the child feel like they’re different because if you do that, we feel that that’s how they gonna grow up feeling and that once they get to a certain age, they’ll probably feel isolated, they’ll feel left out in other words. We really do encourage parents to treat them the same like your other child[ren]. they’re not any different, you know, they’re just special needs, but that’s about it. Just treat them the same. As welcome as you would any other.

Daisy: Belarminoand Marianne?

Marriane: Yes. To let others know that you’re not alone, that this is a wonderful community that you have just joined and that there was no better time than now as resources, tools, services are more available now, more than ever.

Belarmino: Yeah. And I, and I agree with everything that everyone is saying here. Um, Luke, um, one of the things that we’ve learned in our community [00:02:00] here in San Antonio is there are all these resources, but the other families and everyone out there is going through a variety of different circumstances. So one thing that we need to remember is that everyone is going through a different need for their child. And to remember that you may think you’re the only one experiencing something, but to keep on talking to your fellow fathers and mothers and parents and guardians and grandfathers and grandparents and uncles, and just friends of the community and just ask them, what is it that you’re going through?

Because you’ll find that someone out there has something that they’ve experienced that will help you. So it’s just really about keeping that communication line open and you’ll find that you’re not alone and you’re all in this together.

Daisy: So what resources helped you the most? Like when you were first started on your journey with your child, Norma and a Jose? I don’t know if you want to go first or whoever [00:03:00] wants to answer the question is perfectly fine.

Phone Guests: The Down Syndrome Association from Central Texas, that was one of the groups that we actually joined. And that really helped us a lot because they made us feel that we were not alone. It’s a down syndrome association where we used to meet monthly. And I do get the opportunity to meet little ones too, with them and you get parents. Conversate with them and you learn from their experience. And also want to add, just like the other parents that are joining us today, joining the down syndrome association, we’ve learned from each other. And we learned the different abilities that our child’s having at what age that they start walking, what age they start crawling, just doing different things in their life.

It really does make you feel that you’re not alone and it makes you feel that everything’s going to be just fine. You know, it’s just a matter of having patience walking along with your child.

Daisy: Great. Belarmino, Marianne, do you want to add any other resources that were useful or helpful to you?

Marriane: Yes, definitely. When Luke was in the [00:04:00] NICU our nurse actually was assigned to Luke. Um, she was part of the DSA STX here in San Antonio, and she actually helped us get the resources that we need. And we actually went to a playgroup, um, while Luke was in the NICU and we got to meet other parents and talk to other, just other families and just watching their children play and just gathering all of, and I know in your time, your pace, just like our children, right. When you’re ready for all of that information, just to always remember that it’s

there. And for us, the playgroups, the moms groups, the dads groups those types of resources were very helpful, especially in the beginning.

Belarmino: Yeah, absolutely. The Down Syndrome Association of South Texas was very helpful in connecting us with other groups from Any Baby Can to the ARC. But certainly, just understanding, where everyone was joining and going to and, what [00:05:00] resources were available that aren’t off the internet necessarily, but certainly the type of things that you find out sometimes two or three years down the road, they were able to help us find out early on. When we found out that that Luke was going to go through a different journey than we expected.

So it’s been really helpful to start off with the DSA.

Daisy: Thank you. That’s great. Thank you for sharing. I know a lot of parents are gonna appreciate it, knowing what’s out there that they can access. So for our next question, what’s one thing you wish you had known when you received your child’s diagnosis?

Belarmino: Well, Norma and Jose, I don’t know if y’all had something top of mind.

I’ve got to say that from our experience, y’all heard that Luke, he’s almost going to be 10, he’ll be 10 in December. And what’s unique about Luke is that he is a nonverbal. Like he really says a very few words, like one or two words that he has said over the course of the years.

And up being [00:06:00] non-verbal, we found that speech is absolutely an interesting dynamic that whenever he was in school, his first two years at age three and four,

we didn’t know that Luke was going to have such a prolonged period of not necessarily speaking with his words, if he does communicate through other means, but we found that, boy, does speech impact the ability in the school system for someone to be able to really be included in all those support groups and all the different, avenues and tools and just the channels that are provided in the school system. Speech is as critical as it comes. And, and that’s what we’re working on with Luke. And that was the one thing that we didn’t realize how critical.

Speech does impact the educational route that a student would have within the school system, special needs or not. So that was something that we discovered.

Marriane: And also, for Luke [00:07:00] he’s homeschooled right now, playgroups are different. And I hope that a lot of other families know that our goal, I think for our children is just for them to become the best version of themselves.

And for Luke, it’s a different path than other children in the community. And we’ve learned that through the years. We love all the input, but then we take that with us and we put it to Luke because he’s a little, he’s an individual.

And we’ve learned that all of that just makes him that much more special or unique. it’s just the community. You take all of those things in and over the years we’ve learned that it just helps us kind of make our plan for him and to helping him become the best version of him.

Daisy: Awesome. That’s great to hear. Norma and Jose?

Phone Guests: For us,Elías. He was born before time, 31 weeks. He was in the NICU. The struggle that we had with him, he was mainly feeding [00:08:00] all his formula. that’s been a little bit challenging. That’s something that we had to learn. He almost came home with a deep tube, but he was able to manage before he went into surgery.

He started eating like he had never eaten before.

With time we just took a little bit longer to feed him. So we had to be a little bit more patient with him. And the Olympia ration three years old, it’s not very solid when. He eats anything that we can put on a blender, blend for him. He’ll eat it and he has trieddifferent meals. Pizza, tamales, and anything when we can put in the better, he can,So I’m reall y hoping that with time he would develop feeding skills and hopefully one of these days he’ll start eating all by himself.

As far as his learning, how to say words, I think he’s doing great. You know, it came to a point where I was like, this is not going anywhere. He’s not learning how to pronounce words, but it was just out of the sudden [00:09:00] these kids, they are so great.

They’re so smart. And now even say words in Spanish and English. That’s one awesome thing about being bilingual is you can say that we were hoping that as he gets older, he can also be bilingual himself. I think that will be. Great for him and his life and that he started to say more and more words and we’re happy to see that.

Daisy: No. That’s awesome. Cause I know when the children are born, sometimes they have like say heart issues or anything like that. Did either of you have any experience with that or were the kids pretty, pretty healthy?

Phone Guests: Well, as far as the Elías, he’s been healthy a hundred percent, you know, he’s three, he’s almost four and we’re proud of he’s only had fever once in his life and it’s probably less about sea days. And other than that, he’s perfectly healthy.

Belarmino: That’s wonderful to hear about Elías.

We’re very blessed that, he has several friends that have had heart issues, and other [00:10:00] diagnoses, but what impacted Luke was more, um, the low muscle tone related to his ligaments did lead to the hip dysplasia and he did have hip surgery. Something that we would like to remind folks is that, um, that we, I wish we would have known this early on.

You know how, when children like to sit down on their knees and have their two feet out, almost like an a w shape as cute as that looks, that is actually pulling apart those hips. And when you have a child with down syndrome, that’s something to watch for. Luke wouldn’t do that very often, but it was certainly something that impacted his walking until he started walking around four and a half, but that little clicking sound we heard, we took him to the orthopedicsurgeon and they discovered that he did have a need for surgery.

That was a, the only thing other than some minor hearing loss. And of course some vision, but he’s very healthy. We’re very blessed in that regard.

Daisy: That’s wonderful. [00:11:00] Now, moving on to the next question. Was there anything that you learned the hard way, like through the journey with your child, with your loved one with DS that you’d like to share with other families out there?

Marriane: Well for us, for Luke,

I would just love to tell other mothers just trust your instinct. You’re going to get a lot of opinions, feedback, and try to take it all in, and you know, your child best and you know, what works for your child. And I know we put a lot of pressure on ourselves, just period as parents, but when it comes to your child who has special needs, it takes on another type of feeling. And so, uh, just want to trust your gut. And appreciate every milestone, every small milestone. We know in our community, those small milestones, those are really big to us, and just to celebrate. And know that your child will reach those milestones at his or her own pace.

Daisy: Very true very [00:12:00] true..

Phone Guests: I totally agree with her.

Daisy: Uh huh.

Phone Guests: You know, when, when having a special needs child, everything, they start learning. Everything they do is assigned to celebrate. There’s nothing that I see, like a struggle and he just takes a little longer for them and anything they do, and like holding their own bottle or taking their first step, or even like blowing a candle out all that this is time to celebrate every milestone they reach it is the celebration and they make it a very unique and it makes it very special.

far as for me, what I can share about that. It’s, the hardest thing that I will probably say that I went through it, as we mentioned, Elías was in the NICU for, for three and leaving him behind every day, going home every day knowing that your baby is not coming home with you.

But I think the hardest part was when they told us he was ready to come home, I was so used to him being taken care of by professionals, that once they say, you know, he’s ready to go home, [00:13:00] I’m like, okay. So what do we do now? What if he’s not, what if he’s not ready? Is he going to be okay? As a father, as myself, that back then was like, is he going to be okay?

What did we can’t feed him the way they taught us. But as time went by, like other parents say, it’s very true. Every milestone is celebration time now. I wish we knew even more parents that were going through what we went through back then, and we can share our experiences with them and we can let them know it’s so awesome to be a parents of special needs children.

It’s a blessing. It’s awesome. And you’re not alone out there. There are support groups out there and it can be done. It is possible.

Daisy: No thank you for sharing. And that was one of the main reasons we wanted to do this podcast to help other folks out there by sharing your experiences. I want to say, add to that.

Belarmino: Yeah, certainly. Luke has four older siblings and you don’t the milestones are going to be different for every child to the extent of when you have a child with [00:14:00] down syndrome. So you do tend to relish in every milestone differently.

But one thing that I have learned in meeting other dads, especially a brand new dad, or if it’s their first child and their first child happens to have down syndrome, it’s just understanding that there are so many folks out there that will help and the financial. That is certainly a big concern that comes up every time that I speak to a new parent and they’re in there thinking, how am I going to be able to support a child with special needs?

How am I going to support this financially? And especially in our community, it comes up more so, and just know that is something that at the beginning yet it makes your heart tremble. But you can do it and it’s very possible. And you will find that the resources are there, but everyone comes to help and you’d be surprised.

It just all happens to fall into place. And that is something that you have to learn through experience of how [00:15:00] to maneuver through the governmental agencies, but also just learning that the needs are different, but they’re not necessarily. Something that you would have be overcome, um, uh, families, uh, financial structure to that extent.

So that is something that you just have to work through. And that’s something that I found out later, right. As the years went by. So I just wanted to share.

Daisy: No. Thank you. I know that’s something that does come up a lot. I know my husband and I had talked about that too, when Marla was first born too. So we’re actually kind of close to our closing time. So I’m going to go to our final question. So what message would you give your younger self at the birth of your child now that you’re where you’re at today?

What would you say to yourself back then?

Phone Guests: Me and Norma, I would to do whatever it takes and support your child so that heartbeat can continue beating you. Not going to be the only one. There’s plenty of help out there, you know, by [00:16:00] yourself and just say, whatever it takes for the heart, not to stop beating,

Daisy: Beautiful.

Phone Guests: I would say the same thing, just do whatever it takes to not only keep the heartbeat. To make everyday count for pretty easily to one, to make everyday count and to make them as happy as they can be. And, , if I may add this, if any parents we’ll be listening out there, if you ever feel that things do get hard, just get in their world, going they’re whirling.

See, and you’ll see how everything just turns around real, real, easy and real quick.

Daisy: Thank you for sharing

Marriane: yes, definitely to, that was, um, another thing, what he just said when things are really hard for us, I just get a hug from him and it’s just everything, everything just becomes. Okay.

Belarmino: The joy of this journey is something that when you start this path that you don’t know how much. [00:17:00] Joy and love

for everything in life that is going to come about. And, and that’s something that I wish I would have just known because that’s what we’re trying to advocate every day is to just let everybody know that you’re going to enjoy every moment with your child as you any of your other children and that this is just a different journey. And I, uh, I wish I would have heard that more so from even the doctors that I always spoke to as nice as they were, um, just knowing that everything’s going to be a great new journey for you, but, uh, but thank you Daisy, for this to appreciate you.

Daisy: No. Thank you. And thank you for sharing about your children and your lives. I know that this podcast will help parents out there that are just starting out in their journey. And I’d like to thank Marriane and Norma. Two of the first people I met when Marla was born and y’all talked to me and answered my questions, and I really appreciated you back then.

And I’m so happy that you were able [00:18:00] to, to join us today for this podcast and be able to pass on that knowledge to other people. So, thank you. all.

Phone Guests: So, thank you. Thanks for having us.

Belarmino: Thank you.

Phone Guests: Thank you so much.[00:19:00] [00:20:00] [00:21:00] [00:22:00] [00:23:00] [00:24:00] [00:25:00] [00:26:00] [00:27:00] [00:28:00] [00:29:00] [00:30:00]