Down Syndrome: Growing Up With Down Syndrome
October 18, 2011 1:25 p.m.
Down Syndrome Series:
Monday:A San Diego parent shares her story.
Tuesday:Growing Up with Down Syndrome
Wednesday: Support, Resources and Early Intervention
Thursday:Treatments and Clinical Trials, Policy In Play
Related Story: Down Syndrome Series: Growing Up
CAVANAUGH: Is this KPBS I'm Maureen Cavanaugh. We began a series on Down syndrome yesterday, meeting collet Cosky and her eight-month old son, deb ter. A baby with Down syndrome. Collet hopes to inform - today we meet an advocate who's been working with people with Down syndrome for years. Jacky, welcome to the show.
J. HUSSON: Thank you.
CAVANAUGH: And Jacky's son Franky is here, he's 26 years old, he's grownup with Down syndrome. Franky, hello.
F. HUSSON: Hi. I am Franky.
CAVANAUGH: Yes, you are! And thank you for coming in. I'm going to be asking your mom some questions. And I want to ask our listeners too, if they would like to join in the conversation, please give us a call at 1-888-895-5727. Or you request tweet your comment at KPBS mid-day. Jacky, I'm going to bring you back about 26 years when you were first told that Franky had Down syndrome. You told us it was like someone whipped the chalkboard crime scene. What does that mean?
J. HUSSON: Well, you be, I was listening to collet yesterday, and I really related to her experience because although there's been a few decades between her experience and mine, they're not similar in that you know, it was all those anticipations, all those things that you didn't realize that you had already planned for your child's life, and that was kind of what the chalk board had on it. It had go to school, ride a bike at this age, go to college, you know, of course do great things in the world. And all of a sudden, when I received the diagnosis, it was kind of like somebody took that chalk board and wiped it clean because I really didn't know what the future held.
CAVANAUGH: This was back in 1984 when Franky was born. How much information was available to parents at the time about Down syndrome.
J. HUSSON: Well, of course we didn't have the Internet. Which is a huge factor. But there were a few antiquated books and things that were a little more frightening than informational and not very up-to-date. Our best source of information was through other parents
CAVANAUGH: So you advocate for educational opportunities for those not only with Down syndrome, but with all disabilities. What struggles did you encounter in getting Franky educated and being able to live independently the way he does now? Let's talk about his education. What was it like when he was going to be starting school and starting that adventure of going to school and meeting other kids and so forth. What was that like back I guess in the early 90s, right?
J. HUSSON: Yeah, it was actually in the 80s when we started, of course, when you have a child with a disability; you start at a very young age. And we started with early intervention. When we knot into the public school system, it was still a very segregated system. And we've made great progress, but we still don't have things quite as integrated as they should be. But Franky was in an isolated setting and very very unhappy. He wanted to go to school with his neighborhood friends
J. HUSSON: So we worked to get him into his neighborhood school. And he was one of the first children with Down syndrome included in a regular classroom.
CAVANAUGH: How tough was that for you?
J. HUSSON: Very difficult. Because once we did get in, of course the expectation was that nobody of wanted to educate him, and there were -- and I think the biggest hurdle to our kids is that there are such low expectations, and they are quite capable.
CAVANAUGH: Franky, I want to bring you into the conversation. I want to talk about going to school. Did you like going to school when you were a kid?
F. HUSSON: Yes.
CAVANAUGH: And what school did you go to?
F. HUSSON: Mira Mar ranch.
CAVANAUGH: Was it fun? Do you remember having a good time?
F. HUSSON: Yes.
CAVANAUGH: Your mom must have talked to you a lot about how important learning is. What does she say to you about that?
F. HUSSON: She told me to -- reading and writing is very important. And for other people to know expectations about how to do things and how do other things like math.
CAVANAUGH: Right. Right. Exactly. So this has been something that you've done, Jacky, for years. Is basically not only convincing Franky how important education is but you try to convince everybody around him how important his education is.
J. HUSSON: You know, when Franky was younger, we kind of had to look to the future. And you have to look at where you want them to be in adulthood, then you have to back up and say, okay, what skills is my child going to need in order to acquire that level of independence? And we became very aware at his young age. I think he taught us more than we taught him. He taught us what was important, and he always kept our perspectives in the right place. He basically told us he wanted to learn to reads and write, and that wasn't the expectation of the system. So that was critically important. We knew that if he were -- if you think about your everyday life without reading, you'd realize what an important life skill that is.
CAVANAUGH: How have things changed now that you've been involved with public education in San Diego for showing what changes have you seen come about because of you and because of Franky?
J. HUSSON: Well, I think a lot of parents, certainly I wouldn't begin to take credit for the changes that have occurred, but I've tried to contribute. But certainly doors are open now, and people understand that our kids have a civil right to be educated with their peers in neighborhood schools. I think expectations are slowly rising as well. And people understand with the success of people like Franky, he's an inspiration, and he kind of sets the war bar and says, look, we need to look at these children in a different light. They are capable. Of
CAVANAUGH: So after school, when Franky was growing up, what were your hopes for his adult life?
J. HUSSON: We always let Franky inspire us and give us a vision for his life. And he always wanted to be as independent as possible. He's a very strong willed young man as he's tapping me on the shoulder and telling me he wants to speak.
CAVANAUGH: Go ahead, Franky, what do you want to tell us?
F. HUSSON: Well, because of the kids' programs, that happened a lot with other people, and especially learning to do different things.
J. HUSSON: I think what was really important for Franky in terms of preparing him for adulthood were both his educational skills, his social skill, and his communication skills
CAVANAUGH: Exactly. What were some of the hurdles?
J. HUSSON: Again, low expectations. We had to fight to get him educated. We had to really fight long and hard, we had to file a lot of complaints and take a less than desirable road because it should be collaboration between schools and families. And I think we've come a long way. We have some wonderful inspirational teachers and leaders in education now, unfortunately we have some fiscal constraints, but everybody is facing those. So we've come a long way. We still have a long ways to go.
CAVANAUGH: One more question about education, because this is very interesting to me. Do all the teachers in classrooms that contain children who have Down syndrome; are they being trained in how to teach kids with Down syndrome in San Diego?
J. HUSSON: You know, this is a challenge. I think there's been a recent voice of San Diego series, and there have been a number of articles, and this has been in the press lately. That is one of the challenges that we all face, obviously training requires a collaboration between the teacher it is' associations, and the school district, and requires resources and time, so we aren't where we need to be.
CAVANAUGH: And since we are talking about the full gamut of Down syndrome, we're going to be talking about research and early intervention and a whole number of other things. I'd like you to mention some of the concerns you might have had about physical conditions associated with syndrome that crop up as kids grow up and become adults
J. HUSSON: There are a number of things, and of course we get more information all the time, and the Down syndrome association, and the national Down syndrome society have come out with a great list of healthcare guidelines to given parents some heads up. But kids with Down syndrome, often have health defects that are correctable, but that occurs at a younger age. And as they get older, there are a number of things you have to be aware of. Recurring ear infections really affects their speech and language abilities, which really affects your ability to read, and their whole education. And there are other issues with sleep apnea, and sleep disorders, and other things. And in adulthood, there's this ever prohibit link to Alzheimers
CAVANAUGH: So a lot of things on the physical side that you have to keep monitoring as well. Franky, you've been living away from mom and your family now since you were 19. And I want to tell everybody your age. You're 26. You don't mind that do you? Do you live with a roommate?
F. HUSSON: Yes, I do.
CAVANAUGH: And what's your roommate's name?
F. HUSSON: Brandon Boyatt.
CAVANAUGH: Okay. And you also have a support staff to do things. What things do you need help with?
F. HUSSON: Well, I need help to eat right. And to have a good life, like, to balance a meal. And transportation.
CAVANAUGH: Oh -- Driving
F. HUSSON: Yeah.
CAVANAUGH: Automatic okay. So somebody drives you around to your job and so forth?
F. HUSSON: Yeah.
CAVANAUGH: Now, you used to work at airgrocery store, right Franky?
F. HUSSON: Yes.
CAVANAUGH: Did you like that?
F. HUSSON: For two years. And I loved it. It was great. Great hospitality.
J. HUSSON: He learned a lot
F. HUSSON: And I learned a lot. Had how to do things.
CAVANAUGH: Right. But you got laid off. The economy stepped in in, and you don't have that jeep anymore
F. HUSSON: I know because --
CAVANAUGH: And you work now at your -- in a family business; is that right?
F. HUSSON: Yeah. I decided to open a business named shelter prizes, and we employ people with disabilities.
CAVANAUGH: And what services do you provide in your business?
F. HUSSON: Well, services, what we do is we print our T-shirts, or anything like your logo or your name on it.
CAVANAUGH: Oh, that's great. And how long have you been doing that?
F. HUSSON: A couple years
CAVANAUGH: Oh, okay. All right. That sounds great. Now, I think also, Franky, and you wanted to tell plea this a little bit before, I knowledge, that you have lots of activities and hobbies that you do. You ski. Yes.
CAVANAUGH: And fish?
F. HUSSON: Yes.
CAVANAUGH: And what else do you like to do? Dance?
F. HUSSON: I like to dance, I like to party, and I like to ride bikes. Skiing.
F. HUSSON: Bowling.
CAVANAUGH: Wow. Yeah. You're a busy guy.
F. HUSSON: Yeah. Yeah, I do like to go to the gym to stay fit, eat right.
CAVANAUGH: That's fabulous. I wish all of us could do that: Now, how do the needs of adults, Jacky, with Down syndrome, differ from those of kids?
J. HUSSON: I think as you enter adulthood, there are not very good programs out there. I mean, there are some programs, and we're -- the system is really trying, but the needs of the population are so vast, that it's very difficult to meet everybody's needs
CAVANAUGH: Sure. Right.
J. HUSSON: And job, housing, things of that nature.
CAVANAUGH: Now, Franky, where do you live in town? Whereabouts? In what neighborhood?
F. HUSSON: Scripps Ranch.
CAVANAUGH: Oh, okay. That's nice. All right. That's nice. So Jacky, is what you're saying is that you come up against misconceptions of other people? Is that also a challenge?
J. HUSSON: Well, society still hasn't come quite to where it needs to be in terms of understanding individuals with disabilities. And one of the benefits, when you become a parent, it expands your perspective of the world. You learn to look at things not just through your eyes but through your child's eyes
J. HUSSON: And when you have a child with a disability and an adult with a disability, you learn to look through their eyes. And you also have a mirror back from society, in terms of how society is reacting. You're much more sensitive and aware of how society is reacting to your family member. We we still encounter unfavor situations or people that are -- we just say they just don't.
J. HUSSON: And Franky is very capable, and he's a lot of fun to be around and has a lot to contribute
CAVANAUGH: I'm wondering, Franky, what's your message to others who are growing up with Down syndrome, they're going to be going off and living independent lives like you. What kind of advice would you give them?
F. HUSSON: What I would give them is to have a good life and have good opportunity to cook to have fun, and try to live on. So we can also live our dreams
CAVANAUGH: Oh, wow. That's great. Thank you for that. I wanted to ask Jacky, what kind of opportunities, what kind of services are available through your organization, the down association of San Diego, for other families who are hoping that their son or daughter one day becomes the independent adult that Franky is?
J. HUSSON: Well you know, of course we start with preand postin a little information for parents. Of the to get information out to expectant parents and parents of new-born children with Down syndrome. We have support groups for young families, and continual he tries to provide information, workshops, we have an education conference. A healthcare symposium. We provide and network with other agencies so we can do referrals. So we provide a lot of services across the lifespan.
MAUREEN CAVANAUGH: Sounds as if that chalkboard got filled up again with some pretty good stuff
J. HUSSON: Absolutely. Franky filled that chalkboard for me, didn't you, Franky?
F. HUSSON: Yes.
CAVANAUGH: Well, I've been speaking with Jacky Husson, who is president of the San Diego Down syndrome association, and her son, frank Husson. Thank you very much for speaking with me. I appreciate it. It was fun.
J. HUSSON: Thank you
F. HUSSON: Thank you.