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Community & Internet Resources

Disability Experiences: Conversations on Disability



Welcome to our first Conversation on Disability. We hope to feature new conversations on a variety of topics each month. Please do not let the conversation end. Visit our NHU Community Forum to engage in this and other important conversations with your peers.


Finding a Common Voice - A Conversation with a Mother of Adult Children with Disabilities

Parent: I think one of the big things that people aren't aware of, is the fact that a family with a child with a disability has little communication with other families. [Many families] have no information to help them get where they need to

NHU: Because nobody wants to talk about it.

Parent: That's part of it, but I think it is just that they simply do not know. I mean, how are you going to know where [to find] the next family. You have nobody that you can discuss this with, and ask them 'how did you do this?' or 'how did you do that?'

The standard things don't work the way you teach children to tie their shoes or the way you teach them to find their way to school. None of these things work. So you have a unique situation and [each individual family] has to find their own adaptation. If these things could be shared, if ideas could be replicated by other families, life would be made a lot easier.

But we don't know where [other families] are until you get into a school situation, when you have orthopedic schools and there were people being taken by bus. You still just don't have the neighborhood family that is in the same situation. That's where isolation begins, number one. But that's also what limits the child's opportunities for social development.

NHU: Yes, it's multifaceted; it's social development, it's understanding, it's a system, it's knowing you're not alone in the world with the situation, it's not having a common voice because you're so isolated. Without a common voice [among families], one issue can immediately branch out into many, many issues. You turn over one stone and there's ten more stones to turn over. And turn over one of those ten and there's ten more. And it keeps going on and on and on.

Parent: And that's a magnification of each family's situation. They find that they're restricted in their time and energy [all the while] trying to be fair to their other children and trying to survive in a world that's so unreal without even taking into consideration the great concern and the affect on that child in the years to come.

Trying to put it all together sometimes is overwhelming and I think for a family to be able to draw from a website other people's situations you think, 'Well, I guess I'm doing okay, I'm not the only one in this situation.'

NHU: It's trying to find someone that understands and has lived your situation.

Parent: Yes, many families have relatives that don't understand. Though sometimes they have relatives that do understand and they're so lucky, but that's the way the world is. And there are also families that will help and families that won't. There are husbands who have left wives because they could not tolerate or could not cope with the situation. It was beyond them. There are many, many things that never reach the surface because people don't want to read about a negative thing.

NHU: So how do you get out to the families that need to do something really constructive?

Parent: That's what a website could do, enable people to go to that website and say, 'I really need to find a solution. I wonder what other people have done about this particular situation and what's out there.' You no longer have to really reinvent the wheel. That's the way I see it. Each child with a disability is so different. You can have children in the same family and each one is so different. One will have a problem with speech, one will maybe have a problem with involuntary movement. So even what one child can do, you can't learn the lessons from that one, there's just not broad resources to draw on.


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