Family Involvement
(Narrator) Above all else, families matter, they know their child better than anyone else. The deaf-blind transition institutes provide opportunities for parents to share their personal knowledge and strategies to get connected with programs and services. As they build relationships with other parents, they realize that they are not alone and are able to provide support and inspiration to each other. The connections parents form at the institute help them see that their child's dreams are attainable.
(Emily) "It's never too early to start," is what I would say to families, when you're thinking about transition from high-school. That might be an odd thing to say, especially if I'm talking to a parent of maybe a ten-year-old. But if I don't start building some of those self-advocacy skills, some self-determination skills, and if the parent, we don't help them to dream big for their young people, then they're as trapped as that young person may be. So I say, "Start early, have high expectations and let your child have an opportunity to try many different things so they begin to develop what their interests are, what their skills are, and help them to meet other adults who are deaf-blind, or even what I call near peer or mentors", someone who is about, they may be in their twenties or their thirties, that have recently gone through some of the same things that their young people are going to be going through. We as parents, we as educators, we can give them some idea. But you know, "unless you've walked a mile in my shoes you'll never know." So connecting them with adults and young adult mentors is so important, because then the young person can say: "Oh, there is someone just like me! And if they can do it, I can do it too." 
(Linda) The most important person in that team of support is... are family members. The most important people are family members, and so they are the ones that will be there the longest, typically, in somebody's life. So it's very important to have their thoughts and opinions and feelings known as you're getting to know that student and the student's thoughts and feelings. 
(Jana) And as a parent, here, have you been able to connect with other parents, do you feel like that's been a value also? 
(Martha) Yes, it has, I've already spoken to several last night and this morning, and it's been great. Our daughter actually has CHARGE syndrome.Ê And I got to meet another parent who has a child with CHARGE, so we got to talk some this morning and share. And it's been great to be able to connect with other people because it is a low-incidence disability so it's nice to have that, to be able to see what other parents have gone through and how they have, what they have dealt with and... So that's been very helpful too, to connect. 
(Colleen) I've connected with a lot of the families and a lot of the moms, and we are sharing our stories. And it's good that we can go back and connect and find different things that have worked for some people or give advice to other people. And that's a big thing, because it's all about connection, it's about learning about experiences that you can to help others or they can help you in some way. 
(Steve) The big thing that I've done this weekend is the fact that I have always been kind of holding on too tight, afraid to let go.
And this weekend they are making me, you know, let my son do his own little thing, and it's not that I didn't think he could do it, I just, you know, it's one of those protection things as a parent. 
(Jose) I think the biggest help here for him to, to help him to start to transition, is being able to sleep in the dorms with the other guys, I mean that, I can't say that enough, I mean that's awesome, and they made him feel so welcome. To have him go to that from always being clingy, always being next to us. This is the first night he has ever spent away from us and it's a huge milestone for us, it really is. 
(Steve) Brad, Brad has always said that he wants to go college. And getting some of the resources I've got here in the last two days I've learned who I've got to talk to, what I need to start finding about the schools that he wants to go to, find out a little bit more about the IEPs the, you know, the special requirement set, or required by law that they do, that I didn't know about. I mean I've been dealing with a little bit at home, but, you know, talking with the parents here, I have found out there's a lot more out there that I can be doing, that the school systems need to be doing, and the governors need to be really paying more attention to what's going on here. I mean there are too many people that keep saying that, you know, to me, you know, before this weekend, "Well, your son has got a disability but, you know, he'll always live at home and you'll be able to take care of him." And that's not what he wants, and now I'm seeing that, you know, he can go on and do whatever he wants.
(Colleen) It was kind of a very, eye-opener, this weekend, listening to everybody about, you know, like the independent living, and going to college, because he always thinks he is going to stay home and go to college or whatever, but my goal for him is to go to college even if its close by but have independent living, and just listening to something is really, a lot of fighting back a lot of tears, but I learned a lot from all the different groups of things that are out there to, you know, transition. 
(Tracie) Start learning about their child's disabilities from the time their child is first diagnosed, learn how to let go of the child, from baby steps onward, and learn how to help their child, support them every step of the way, but also to let the child make decisions for themselves, starting again with baby steps, moving onward to where that child is able to walk on his or her own feet. 
(Annie) That child is looking to that parent for knowledge, for understanding, for everything, they are reaching out to their parents for everything, but if that parent doesn't know what to do or how to go about doing it, that parent cannot help that child, so the more knowledge that the parent has, the better that child can be. 
(Jeremy / Interpreter) Definitely my family helps me. Like my brother, he'll explain different things to me and he is really good at acting things out, and he's very proud of me and helps make me proud.
(Interpreter and DanielleÕs voice are repeated by interpreters in the audience who are letting the deaf-blind audience members know what is being said)
(Interpreter) So Danielle 
(Crowd) So Danielle 
(Interpreter) how do your parents, 
(Crowd) how do your parents, 
(Interpreter) and your family, 
(Crowd) and your family 
(Interpreter) support you 
(Crowd) support you
(Interpreter) in moving towards your transition goals? 
(Crowd) in moving towards your transition goals? 
(Danielle) My parents and family. 
(Crowd) My parents and family 
(Danielle) were very supportive 
(Crowd) were very supportive 
(Danielle) they never held me back 
(Crowd) they never held me back 
(Danielle) and let me go different places 
(Crowd) and let me go different places 
(Danielle) and do different things 
(Crowd) and do different things 
(Danielle) such as 
(Crowd) such as 
(Danielle) getting on airplanes 
(Crowd) getting on airplanes 
(Danielle) and flying to other states 
(Crowd) and flying to other states 
(Danielle) to participate in camps 
(Crowd) to participate in camps 
(Danielle) even though 
(Crowd) even though 
(Danielle) they were afraid to let me go 
(Crowd) they were afraid to let me go.
(Melissa / Interpreter) I would tell parents to sit and talk with their children, research what resources are available for them, help them meet other deaf-blind role models, encourage your children to make their own decisions and to not always rely on their parents. Encourage them to make decisions on their own. They need to feel that they can be open to making their own decisions as they move forward in their lives, not having to depend on their parents. They should rely on their parents as a guide who can encourage them in a successful direction.