Tuesday, January 19, 2010

Is my kid special enough?

I was interviewing this very nice guy today. The Director of The Father's Network, a support network developed at the University of Washington 30 years ago, now the national model for bringing dads of kids with special needs together and making some very profound, positive benefits for their families.

If you haven't checked them out, you should, and can right here.

He was so awesome and knowledgeable and had been part of the development of the program from the beginning. He has his PhD in Special Education then moved to administration and was a principal for years. I mean the guy was just a treasure trove of experience and sane thoughts. And, yes, he is also a father of a son with disabilities.

Anyway, after all of my somewhat pedantic questions which he very graciously answered, he asked me a little about myself.

So, I launch into my short version. My son Shea, severe speech delay, Apraxia, blah, blah. I told him about the early intervention and the developmental preschool and that he really is doing great but it is and will continue to be a long road and it is sometimes really hard.

He said, "You know, there are many studies that show that parents of high functioning or border lines kids with special needs have an even higher stress level than parents of kids with severe needs because their needs are not as obvious, there seems to be less understanding from peers and the parents are constantly teetering on the differences between their child and typically developing peers."

Wow. I was sort of stunned. But, then a huge wave of validation washed over me and I have been thinking about what he said ever since.

On this journey of reaching out to other parents of kids with special needs, I have felt almost shy and awkward talking about my son's needs. Sort of like, "What am I complaining about? There are so many other kids who have much more dire needs." I felt I was sniveling, that Shea was not "special enough" and I should just feel glad and thankful that he is as high functioning as he is.

I felt guilt, in fact, that this pain and worry I have that just won't go away was somewhat unseemly because there are so many others who must be hurting more.

And, yes, there are many, many others who are having a harder time than Shea. My heart bleeds for them. And, for those parents.

But, my boy has a tough time talking. He may not look "special" but as soon as he opens his mouth everybody knows he is. And, even as we work hard toward acceptance, I guess it will always hurt.

I talk to my GGFs wondering aloud if Shea is a "lifer". Will he be with us forever? Will he be able to move out, go to college, have a lover, find and keep a job? No one knows and certainly no one will speculate.

So, that is the limbo we live under and probably will for some time. That is the added stress that wonderful Mr. Father's Network spoke of and validated for me today.

And, to think all this time, I thought I was just being a selfish shit.

Huh. Go figure.

1 comment:

Bluestem said...

Oh, hell yeah. Thanks for writing this!

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