About a year ago, I wrote a guest post for Rage Against the Minivan (which is a great blog, by the way), and then I kind of forgot about it. It was posted last week, when Ren was still in the hospital. The title was "What I Want You to Know About Having a Child with Austism." In it, I was trying to help people understand the hard parts of having a kid with ASD because, frankly, sometimes it's really hard. If you've been reading this blog at all, you know that life with a kid on the spectrum is also sometimes crazy, sometimes fun, sometimes heartbreaking, sometimes very educational. In other words, having a kid on the spectrum is very cool and it's also very hard. That's what my post was trying to express. You can read it here.
I've been surprised by some of the comments, especially the strong reaction to my use of the word "lucky." Apparently, it's not possible to say someone is lucky without somehow implying that I am unlucky. I guess that makes sense. But, that's not actually what I was trying to say. I was trying to say that people who don't struggle with ASD on a daily basis should realize life is probably easier for them (though, as you can see, this is a much wordier sentiment than saying they're "lucky"). This doesn't mean that I don't think other people struggle or that I don't acknowledge other kinds of diversity and difficulty in the world. Do I wish Sky didn't have ASD? You bet I do. Life is so much harder for him than for his peers. He struggles daily to figure out how to fit in and how to make good choices in a world he doesn't quite get. Do I love him any less? Of course not. I love that kid like crazy and wouldn't change anything about him except for the parts that make life so hard for him. Isn't it possible to have these kinds of complicated and nuanced feelings about life with autism without being self-loathing, un-accepting or un-supportive? I think it is.
One person commenting hoped my son would never see the post. I don't feel that way. Sky knows how much we love him, how much we support him, and how much we all wish ASD didn't negatively impact his life. He also knows we think he's a super hero and that we are extremely proud of his ability and willingness to work hard and to teach others about the good and the bad of being on the autism spectrum.
If you haven't seen it already, please go read that post and tell me how I could have/should have said things differently to make my point.
And then tell me whether you think I should just give up on this whole internet blog thing altogether.