Down Syndrome Series: Support & Resources

CAVANAUGH: This is KPBS Midday Edition. I'm Maureen Cavanaugh. In our series on Down Syndrome this week, we've talk said with parents who told us that learning their child had Down Syndrome forced them to imagine a different kind of future for their children. And that future may be determined by how much support and early help they can get for their child. San Diego's Down Syndrome community is made be of activists who work to make sure that training is available for kids and family who is need it. My guests, Joyce Clark is a board member of Down Syndrome association of San Diego. Joyce, welcome to the show. CLARK: Thank you. CAVANAUGH: And follow Erin Grettenberger is an infant development specialist, parent support training. Hello. GRETTENBERGER: Hi. CAVANAUGH: Now, let me start with you, Joyce, because I think it's your son, Luke, that's the reason for you getting involved in this community. How old is he now? CLARK: Luke is 22 years old. CAVANAUGH: And how does your personal experience allow you to help others seek resources through the Down Syndrome association? CLARK: Very early on, I realized that I had a need for information and support and resources. And actually, when Luke was born, the doctor that diagnosed his condition had a personal family friend who had an adult son with Down Syndrome, and he asked me that day if I wanted to meet her to put some perspective into our new situation. And at first I said no. And the doctor actually didn't listen to me and fortunately, he did send this mom in, and she made a whole difference in my life. She came in and she was the first more than who said congratulations. And no one had said that to me, and I did have a new baby, and I lost sight of that. She also asked me typical questions such as how much did he weigh, and oh, look at his blond hair and his blue eyes, he's beautiful. She normalized the situation the best that you could possibly imagine in just one moment. And not that it corrected everything, but it certainly started me as being a true believer in peer parent support, and I became involved in the Down Syndrome association soon after. CAVANAUGH: What did you know about Down Syndrome before you got that fortuitous visit from that other mother? CLARK: Part move I background is I have been in nursing for 25 years. Well, at that point not quite 25 years. But I did take care of some kids with Down Syndrome who had cardiac surgery. I thought I had a perception of people who had Down Syndrome, and I actually had a very clinical conception of the health condition, and some of the stereotypes possibly too. And becoming a parent completely changed me. It showed me the human side of Down Syndrome. I realized I had a baby. And Luke right from the very beginning was so easy to love and made such a huge difference in our life. It changed me as a nurse. I find it's very easy in the clinical settings to be someone Aseptic in terms of talking about patients and impersonalizing them, calling them by their diagnosis, you know, it's the gallbladder in room 12. And so talking about a baby first and foremost or an individual first and foremost was hugely important, and it's what started me with working with can both the Down Syndrome association and the family resource center. CAVANAUGH: You found out firsthand what just a lot bit of support, reaching out, a conversation looking at things in a different light, how that could change your whole attitude toward having a baby with Down Syndrome. Tell us about the support services that the Down Syndrome association of San Diego provides. CLARK: We have a home -- hospital to home family support program, and that includes a relationship with most of the major hospitals in San Diego County, and they have our materials and their social service workers provide those materials to families at birth. And it occurs both prenatal and postnatal. And our packet includes a comprehensive book on Down Syndrome, a guide to babies with Down Syndrome. A DVD, the first 18 month, which is a collective vision of scenarios from parents and professionals. It also has a welcome baby kit. A cooler bag, and a hat, and a T-shirt. And we package it in such a way so that it looks somewhat like a present, just so that we can help normalize that situation. It also has information about our support groups and healthcare guidelines. And we find that some people are very -- most people are very appreciative of it, but a lot of times it requires that follow-up with a peer/parent mentor so they can sort out that information. Parents are bombarded with a number of situations. They they're going to connect with public service agencies to provide for those early intervention services that Eric is going to talk about, they have insurance concerns, and they have an amount of paperwork to sort through. We're there to be that peer/parent mentor, to help them work through those issues and start that process for them as well. CAVANAUGH: This package that you give parents, moms in the hospital or when they contact the Down Syndrome association, you start the learning process for the family. Who early should parent start looking for help and access to resources for their baby with Down Syndrome? CLARK: Every family is different. And at the exceptional family resource center, we have a parent to parent training program. We encourage our parents to recognize that, first and foremost. It's a different process for each parent. I think the earlier the better. Because there are time lines in terms of completing the paperwork, and the process to approve these services, and once families come out of that emotional part of this journey, they really want to do thing for their kids and they're anxiety to get started, and if they haven't started the process, that does have the early intervention services connection, then they're a little disappointed that they have to wait another 90 days to get going. I think that's the most reassuring things for families. Once you find that you've learned a little bit about Down Syndrome, you have a general understanding of the services and supports, and you can get those services in place for your child, you feel a whole -- so much more comfortable, and you feel that you're able to move forward and there is that light at the end of the tunnel, that it's not as difficult the as you might have perceived as birth. CAVANAUGH: Let me bring Erin Grettenberger into the conversation. I think this is when you enter the picture, when parents are beginning to reach out and looking for an infant development specialist, which is what you are. What do you do in your infant development program? GRETTENBERGER: The infant development program, the one that I work for is run through the San Diego unified school district. And when parents reach out for help, many times they're -- we talk to regional center. They'll make a referral or they can call the program themselves. And we work off the individual family service plan. That's something that we sit down with the families together and it is regarding what the parents' concerns and priorities are for that child. We guide them through the plan, we develop goals, and when I go into the home, we're working on those goals with the child. CAVANAUGH: Now, you, I believe, work with Dexter. He's an eight-month old boy that we met earlier week. He came in and spoke with his mother Collete. What kinds of things do you do with a baby that is so young? GRETTENBERGER: Well, I think it's really important when we look at babies, and we look at babies with Down Syndrome that I try to follow tell the parent, he's your baby. He's your baby first. This is not a project. This is your baby. And when we look at what other babies are doing at this age, and so there's different activities. Many babies Dexter's age are just starting to eat. There's a lot of things that you can do when you're feeding a child to help develop certain muscles that will eventually lead to some speech. For instance, and people ask me this question all the time, just certain things when you're sitting down, we might do side to side feeding because side to side feeds help with lip closure. These are tools I have learned from my support system, which includes speech therapists, occupational therapists, we really collaborate as a team. And with that team support, we help support the family, and through different -- instead of, like, a therapeutic, we're in the home, and look around the house, and say, we can use this couch cushion, we can use this to prop on, we can bring the toy closer. Just little things. And I play for a living. That's what I do. I help the patients play. I help them develop a routine that they can get this stuff in during that routine, the child's routine. CAVANAUGH: Is it difficult for parents to have a stranger come into their home and basically tell them what they should be doing with their child? GRETTENBERGER: It's very difficult. And that's why it's really important as an early start interventionist is to kind of wait, and wait for the parent, and the parents' questions. I might have my agenda Abut that's not what the family's agenda is. So I have to really wait and be this to answer their questions, and go with whatever their need is that day. I'm a reminder, when I knock on that door, often I'm a reminder that their child might have special needs, and that could be very hurtful. CAVANAUGH: How do you deal with that? GRETTENBERGER: I wait. I might start visits once a month. Then as they get comfortable, they might -- I said, you know, you're very welcome as a service provider, you could have a visit every week. And I just wait till they're ready. The most important thing, I think also is that I try to get parents to reach out to other parents because I don't have a child with Down Syndrome. I can't tell you, I know how that feels. But other parents can. And just reaching out for friendships and community resources together, and I think a really important thing is early on, a very inclusive environment. You know, do things in baby groups out in the community. It doesn't have to be separated. But be included early on. CAVANAUGH: I want to ask you both, Joyce, let me start with you, how do parents pay for this? CLARK: Programs and services are funded through the federal government. Individuals with disabilities education act part B and part C. Part C provides for early intervention services, and also part B provides for educational services. California also has what's called the Lannerman act, which provides for services that are administered through our local San Diego region center, which funnels through the department of developmental services and down to San Diego, and it's dispersed through the education system, and then to other service providers in San Diego. CAVANAUGH: Sounds like there's a lot of paperwork involved with this. CLARK: Yes, and no. For early start, there is it a common process between a relationship between the education regional center, and the exceptional family resource center, families can fill out the paper one time, it has lots of information on it, then it goes through a process. But it can be complicated with all the other additional things that families are looking for in terms of they might need assistance with Social Security or health insurance. So it certainly can be daunting in that respect. Our services at the Down Syndrome association are free for the most part. We do our funding privately. We also partner formally with the exceptional family resource center, which we see as funding from both the federal government, and the state government. And they serve families of children birth through life, who have exceptional needs. Also their services as a formal point of entry can facilitate this process. CAVANAUGH: It would seem to me there probably are some families that really struggle to get the proper training for their children because they just really don't have a lot of extra money to throw around. GRETTENBERGER: Again, our services are free. I think a real important factor to look in early intervention is culturally, every family is different. Every family has different unique dream enforce their children. And some of the families we have yet to be able to reach because of cultural differences or because of the inability that that child hasn't been referred for various reasons. The but families that bond together -- and I had a group of parents that decided that they wanted to establish a clinic like what was going on at Stanford in Chicago. And these -- these families met in the kitchen, I think 3 or 4 years ago, and they just started Down Syndrome action, which they worked hard together and helped fund the Down Syndrome clinic now that is at Reidy's. And families really make pay difference. And I think as a teacher, it's really important that we understand that families do have different needs. And that we're a visitor in the home. CAVANAUGH: Now, you are an infant development specialist. And you kind of end your program at the age of three, is that what I understand? GRETTENBERGER: At the age of three, or starting at the age of 2 years 9 months we start looking at transition for all the children that we serve 'cause we serve children with all different special needs, and we start planning for the individual education plan, which would be the i.e. P, and then again as a team we start collaborating with the family, and start planning about what is going to happen at age three. And that's what, unfortunately, the individual family service plan where we are able to serve the family in all their needs, that's when it starts changing because the i.e. P, we're just in charge of the educational portion, whereas the region center, and the other centers may have the other support. CAVANAUGH: Joyce, you've been through this from the time your son was a baby till now, he's an adult. Tell us about how the needs of the family with a child with Down Syndrome change as that child grows. CLARK: Well, they do transition at different points in time. And I think as in the beginning, as you can imagine, it's very overruling, then you get comfortable, and you find the resources, and you figure out that system, and then you're moved into yet another system. I think once you get into education, the family support component that Erin is talking about isn't quite as evident in our education systems. And this is where Down Syndrome association and our support groups, and our parent education program can fill in the blanks for that. It's a learning curve, but I think each area that you transition into, whether it's from preschool to kindergarten to high school, families become informed and empowered. We don't want to do the jobs for families, we want to give them the tools so they can do it for themselves. And they will have the to do so. I think in terms of the funding, families do put in a lot of resource as well. Programs are there, be and they are limited especially in times of economic challenges, which we're facing now, programs have been cut. And so these services have dwindled. So it's really important to look to our community and to our benefactors to continue to fund the other areas and it is a challenge. What I have seen today for families as what's different today, 20 years ago, there was one book, and it wasn't a very positive book that was accessible to parents. Today, there's a plethora of information. It still requires sorting out as families move forward. Especially in the adult area, I would say that's probably an area that really needs to be looked at because we don't have the same protective mechanisms and services in place, and public benefits are very limited, and that's something that the Down Syndrome association is actually very involved in at this point in time to look at some programs, and how can we bring the same level of service up to the adult world? CAVANAUGH: My final question to you, Joyce, is we hear an awful lot about that word, support. Families need support, and supportive services and so forth. You can tell us from your own experiences how important is it to have support from other families and groups that you can know that you can turn to because raising a child where Down Syndrome is challenge something how important is support? CLARK: It was instrumental in my life. I have developed the most incredible group of friends, peel they would embrace whether we had a child with Down Syndrome in common. But it also helped to be a guide post for me. I have friend, Jacky who was here with her son Franky, is certainly my icon, and they illuminate my world in terms of find my path for my son. Jacky helped tremendously in terms of the education of my son, and inclusion and so forth. CAVANAUGH: We are out of time. But I really enjoyed speaking with you. Joyce Clark, board member of the Down Syndrome association of San Diego. Erin Grettenberger, infant development specialist, and parent support trainer. Thank you very much for coming in and speaking with us. CLARK: Thank you. GRETTENBERGER: Thank you very much.