Chapter 10: Challenges for Parents Today

14:45:53:14 - 14:52:40:18

Lisa: So, in your opinion, Dr. Edwards, what do you see as some of the most pressing issues facing parents of kids with disabilities today?

Dr. Edwards: Well depending on the severity of the disability, the past parents get older, they're very much concerned about what'll happen to their children when they're gone. That's a, that's a... that's really a major, uh, the uh... And I'm aware of the, uh... there is a movement afoot to try to make connections for special needs citizens once their parents are gone with actual families. I know that that's gone on. I have not been active in that. Uh, the... I think that... you know, uh, as a parent, as Graynle's parent, I think more about community living arrangements. Um, but the issue there is will he be placed in a home where folks are caring and provide him with the same if not identical, at least enough experiences where he feels comfortable? I mean, because right now he's a spoiled little dude (laughs). And I don't expect all of those kinds of things to happen for him, uh, you know, when I'm gone. But one of the things I've noticed about him is that people like him. And that makes me feel a little more comfortable as to how he might fare in my absence. The, uh, I'm reminded of what a gentleman shared with me - and incidentally he shared it with me shortly after what you had shared with me about how parents would like to see their child leave here before they leave here, uh, because of the fear of... that same level of care will be in place when they're gone. And I understand that - I really do. I understand that. But as I said before, I'm comforted by the fact that so many people like Graynle, you see. And, uh, so that that... the community living arrangements is not the worst possible thing that could happen to him. It's not the best, but it's a long shot from the worst possible thing that can happen. Uh, the, uh... so, you know, the antennae are up in terms of what organizations are providing the best kind of support in that domain, and uh, continue to, uh, talk to individuals. Then one of my, uh... one of the persons I lean on is Steve Kinsey, because he, you know, he was in that field. Uh, I'm leaning on him to get the best possible directions as to how to go about that next stage. I haven't finalized anything yet but that's a concern. I know that's a concern. Another concern for a number of parents is respite. The, uh, while there's dollars out there to provide respite, what's interesting is that there are a number of people who do that - there are some people who do that - you don't feel comfortable with, you see. Um, and the fees are... are not bad. They're not bad really, when you think about it, uh, for twenty-four... twenty-four hour period, something like a hundred and seventy dollars. Now that doesn't come directly to them because the agency gets a piece of that action and there's tax - taxes - but you're not working twenty four hours by a long shot, you see. People do sleep. Um, the, uh... you do have an opportunity to sleep during that twenty-four hour period. So, uh, let's say it's a sixteen hour deal, and even doing sixteen hours you're not totally engaged. So it's not a bad paycheck as I see it, but the problem, though, is that there are... we-we-we (tries to find words) we have great difficulty in getting the kind of folks to do that - to provide that kind of service. Um, so that's another concern. Respite. Another concern is the, uh, the appropriate health care. Um, the, uh... you really have to be on top of it all the time in terms of being assertive, being aggressive about what your child needs. Um, the uh... so that's another area where you, uh... a great level of concern. And, I guess the fourth one is how people relate to your, uh... to your... to your children. And, uh, I've personally experienced that. There's some family members who relate to Graynle as if he's a normal human being. Other family members, you know, they will... it's not, tolerant might not be the best... might not not be the best word. Uh, it could well be that uh, will, uh... what's the word... will coexist. You know what I mean, you know. He has a right to be here on the planet just as myself. But not overly aggressive in development of of real positive relationships. So there's variations even within the family.

14:52:40:18 - 14:53:55:02

Lisa: Is that wounding as a parent?

Dr. Edwards: Oh absolutely. Sure. Sure, the, uh... the - in fact that brings on certain levels of isolation. Certain circles don't even want to take him because of the way some individuals relate to them - relate to him. Uh, the uh, you see, parents - all parents want people to see their child as a great human being. I mean that's... that's natural. You know, the uh... Often times I'm reminded of the story of the—the ugly duckling, you see. And the—how the other ducks responded to the ugly duckling, you see. And that happens in the human species as well. Some individuals have difficulty relating to individuals who might be different, you see. The, uh—and, uh, so yeah, it's painful when you see—when your child's in that environment and people are reac—are relating to him in that way. You don't like that at all. Yeah.