I've been thinking about this for awhile now. It was kind of floating around in my mind, a wisp of a thought, until an exchange on a popular baby site bulletin board solidified it.
It was on a "Mom's Over 40" board, and the discussion was about pre-natal testing. One of the posters relayed a story about another woman on a different board, whose pre-natal testing had shown nothing unusual but who gave birth to a baby with Down's Syndrome. The poster relaying the story described this scenario as her "worst nightmare". The couple with the affected child ended up giving her up for adoption. I posted that I thought that the whole story was sad, but that I took offense at describing this as a "nightmare" -- that I had a son with disabilities -- etc. We went back and forth, civilly, for awhile -- and another poster chimed in to say that she had worked with kids with autism, and thought that the parents of these children are "very special" and that not everyone is cut out for it. Hence, the adoption was not a sad thing. Parents who were equipped to handle it were adopting the baby. Happy ending for the most part.
But I don't know. I don't disagree with the adoption per se. But the idea that you have to be "special" to handle parenting a child with disabilities irks me somewhat. I remember when Henry was close to two years old, and his delays and issues were just becoming clear to us -- when the "A word" was first mentioned. I remember the self-doubt I felt, thinking "I'm not cut out to be a special needs parent!" I had some image of an endlessly selfless and giving woman, saintly and beatific -- which didn't feel like me. At all. The idea that I needed to be special, stronger, better in some way, to handle what was before us, contributed to my depression and anxiety. I wonder if this kind of thinking lead to the couple putting their daughter up for adoption: the belief that they couldn't handle it. That they weren't special enough.
But you never know what you can handle until you are, in fact, forced to handle it. In many cases, you haven't a choice. Things happen. Your three-year old is diagnosed with autism. Your father gets cancer. Your husband is injured in an accident. And out of love and care for them, you do what needs to be done. There's nothing that special about it: it's what anyone would do, anyone who's capable of love.
(I'm setting aside any people who -- for psychological reasons or deficits -- can't, in fact, move beyond their own fears, issues, whatever, to do what needs to be done. Those people lie outside the realm of what I'm talking about, and that would be another post.)
But there is something that happens to you, that has happened to me, since Henry's issues became clear. I am much more aware of people with any kind of "handicap" or difference than I was before. This seems completely natural, to me: some things just don't show up on your radar until you are personally affected by it, or work in a field where you see it. Though I've always been a sensitive person, I am more so now. And my feelings have moved beyond mere pity (which does nothing for anyone) to a much stronger stance of advocacy.
I don't do any official advocacy with autism groups and such, though I know people who do. But I have to advocate for Henry all the time, as any other "autism parent" does for their child. You're truly called upon to fight for your child, and the contentiousness of that battle has to do with local school districts and what services they provide (or don't provide), and what your doctors say, and what your health insurance covers, and how your family views your child, and how you deal with the insensitivities and prejudices of people and society in general, and your own feelings of doubt, anxiety, and inadequacy.
The latter is often the biggest struggle for me. I'm not that saintly, selfless woman, the ideal of the "special needs" parent. There are still days when I think about the future and am filled with fear and self-pity, when I feel overwhelmed, when I lie down on the bed and have a good cry. (Yesterday was one of these.) "It's a hard world for little things," as the movie has it, and it's even harder for people who are more vulnerable. Like Henry. There are times when I don't feel strong enough to forge ahead, when I let myself dwell on the difficulties and forget to enjoy the little triumphs. At these times, I don't feel special and I don't feel strong. I feel weak. And the world feels like a hard, hard place.
Another saying has it that pain is weakness leaving the body. Maybe so. Maybe special needs parents don't start out being special, but maybe we become special: stronger than we were before, despite moments or days of doubt and hopelessness. I do rally; I do get out of bed. I do what needs to be done, most of the time.
Does this make me special? Or am I no different from any other parent (including those of "typical" kids) who helps their child with his deficits, and applauds his strengths, and struggles to do what's right, and who feels overwhelmed by the responsibility of it all? Who thinks about running away, if only for a weekend, where no one demands anything of them, where they can have that good cry, or have a drink and eat "adult food", or watch some crappy, escapist television show, and forget -- for a little while -- how god damned hard it can call be?
I don't know if I'm special, but I know that Henry is. He is so beautiful, and so bright, and funny, and vulnerable, and he has called on me to give more than what I ever expected to give. And I do it, imperfectly and haphazardly, and often with a feeling of flying-by-the-seat-of-my-pants. And what I feel is an admixture of doubt, sadness, joy, and hope.
I'm not special for caring for and loving and supporting Henry the way that I do. I just can't help myself.
