January 1, 2008
SCHUYLER'S MONSTER: Making a New Kind of Family
Transcript:
Rob: Being in a family with a special needs family member, particularly a child, it's very difficult. It's very hard on a family, it's very hard on a marriage. The divorce rate amongst couples with a disabled child is incredibly high, it's very depressing. And it's... it's hard because I think when you're in a relationship, you know, sometimes when things are hard you want to have that person you can turn to. But when that person is also in that same situation, you think that that's an ideal situation. And you know what? Sometimes it's not, sometimes it's the opposite. Sometimes two people fighting the same demons, they just, you know, it's so hard to be sympathetic, so hard to get out of your own head and out of your own world. And it's very difficult for families.
I think for a family to make it work, for a family to work out the issues inherent in having a special needs child, I think the secret is you just have to take all the narrative that society's handed you, all the expectations, and you just have to blow them away, start with a clean slate. Because the rules for your family and the rules for your child are going to be completely new. They're going to be, they're going to be... You've got to find your way, you've got to find your way, because they're not going to apply to anyone else.
I can write this book. I've read a lot of books, and I'll continue to read books, by other special needs parents. But the thing that strikes me is how every one of these stories is different, every single person has a different reaction, every single person, every single family member has a different way of dealing with it.
And that's fine, that's the way it should be, but you've got to find your own way. Because the standard rules aren't going to help you, they're not going to help you at all. They're just going to make you feel bad, they're going to make you feel like you're doing it wrong. But you're NOT doing it wrong, you just have to find the right way, and no one else can tell you that but you.
So it's hard, it's hard to find that, but it's also very rewarding. I can't think of anything in my life that's challenged me more or has made me grow more as a person. So it's worth it. It's hard, but it's worth it.
Subscribe to:
Post Comments (Atom)
7 comments:
Thanks for sharing these videos, Rob. I find the message in this one particularly moving.
Whenever I've worried about whether I'm doing something (as a parent) the right way, I recall something my mom said to me shortly after my son was born: There are a lot of ways to do it right. I think that's true for any family and probably especially when you have a child with special needs. You have to do what is right for your family. I'm glad you and Julie are finding your way.
Yes, you'd think that two people parenting a special needs child would be a perfect match, but it is hard - you become more like old war buddies. My husband and I have different ways of dealing with it all, and we try not to judge each other but...well, it's hard, what else is there to say. Guess we both have post-traumatic stress disorder and that's not a match made in heaven!!
Love your videos.
This is wonderful and so important for other families to hear/see. I agree wholeheartedly that each family must find their own way of coping, but it's comforting to learn that other couples struggle (and sometimes break) and how they deal with it.
I think this is my favorite video of the bunch...I remember when we fist got our diagnosis, one of the most devastating things for us was that we felt that, in addition to everything else, we now were a "part" of something, a club of sorts, and that we'd be expected to participate.
We'd never been "joiners" (my husband's phrase) and the thought that we'd have to become such people seemed like one of the hardest things for us to accept.
Well, of course, we know now that there are as many ways of parenting a child with special needs as there are parents. And while we all share a deep, abiding love for our kids, that love can manifest itself in any number of ways.
It's liberating, and refreshing, to allow ourselves permission to be whatever kind of parents we need to be.
I love what you said here.
My heart goes out to you and your beautiful daughter. I too have a special needs child and struggle with it daily. My daughter was diagnosed at 20 months with severe hearing loss, but with the help of hearing aids is now able to speak. I pray that new developments in medicine may someday help your daughter. God Bless.
I know exactly what you mean by the "normal" rules dont apply. I just wish the rest of the "normal" world could recognize it.
My daughter is 15. Since she was diagnosed in the 1st grade, I have walked on egg shells between school administration, other parents, sports related activities etc . . . I am so scared all the time that a move I make will hurt her in the long run. . . If I push too hard or if I dont push enough she will suffer.
Post a Comment