I’ve been struggling with writing this blog- not sounding whiney or spoiled. For the reality is that I DO know that I’m incredibly lucky- I get to work in a gorgeous place doing what I love- absolutely love- to do (heck, even having a job is cause for celebration these days) and I have a family I wouldn’t trade for anything. Life right now is pretty easy. Life right now is pretty good. It’s a stark contrast to times past….
But every now and then I remember that I’m in Switzerland.
I applied for a great big federal grant this past July. My first grant. It was a really good idea. It would have meant tremendous relief for me and my program. It would have paid teachers for the fantastic jobs they’re been doing. It would have been… really nice. And I didn’t get it.
For a while I wanted to blame all kinds of things… my college who is not used to big grants and couldn’t help me; the “system” that rewards big colleges and their well-oiled machines; some inherent conflicts of interest …
The reality came down to the fact that I was inexperienced, and didn’t know “how” to write for these things- the forms alone require certain statements might as well be in a foreign language. I realized, after collaborating with another university for another big grant this past September, that my first efforts were awkward, stilted, and not as complete or thorough as they could have been. In other words, I needed to do one in order to learn how to do one. Everyone’s reassuring me- “It was your first one… now you know what to do…you’ll learn… you’ll learn.” And they’re right.
But what hurts me is that I look at my friends who went through the same program I did… and I know that I’m “behind”. I finished 10 years ago, and was all set to change the world. All set to launch. Only… autism and job losses and family issues kicked in and there I remained- ready to launch. I’m proud of my friends; I’m honored to know them. I use their books in my classes and I reference their articles and papers and I see them at conferences. I watch them get awards and grants and titles and I’m thrilled for them. Really and truly thrilled. Only, I’m not with them… I’m only on my “first” grant- which I did not get, while so many of them are on their fourth or more grants- that they did get.
In my book- which was really more of a labor of love than a professional achievement- I talk about how having a child with high-functioning autism is like landing in Switzerland. Emily Perl Kingsley has a wonderful, wonderful essay “Welcome to Holland” about how having a child with a disability is like preparing all of your life to travel to Italy, but you land in Holland instead. It takes you a while to appreciate the beauty of Holland, but your whole life, you will watch your friends going back and forth to Italy and remember that you were supposed to go there. It’s a fabulous piece.
Having a child with high-functioning autism is a bit like landing in Switzerland. It’s close to Italy- so close that you can see the edges of the country and some of its landscapes. It’s not so far away that you can’t relate to your friends who are enjoying Italy. But it’s not Italy. The food is different; the pace is different, and ultimately, it’s a different country.
I’ve thought through this analogy in respect to the grieving that parents do when they compare their children to others. I know this grief. But the recognition that Switzerland also applies to my goals for myself isn’t something I regularly face.
And I do know how lucky I am- how I am able to return to work; how I have been able to get back on the track that I left. I stepped out for four years and I have been able to find a place for myself. So many, many autism mommies can’t. There’s recent research that finds that autism of a child dramatically affects a mother’s career path and earnings (I call this DUH research). But I’m now at a different place on the path, driving a different vehicle than I was 10 years ago.
I was sniffling about it this morning, and James, my husband, who completely understands this path I’m on, gave me a huge hug and said “It’s tough when you’re benchmarking yourself against what you could have been. But you’re doing a good job on your own bench.”
And so I’ll dust myself off. I’ll recognize that I’m grieving, once again, for what could have been. I’ll look around at Switzerland and I’ll appreciate it once again. But every now and then, I just have to say- Autism sucks.