Issues Way Beyond My Pay Grade

I am trying very hard not to make this an "all autism, all the time" blog, but let's face it, we're not even a year out from the diagnosis, so there's quite a bit of thinking about autism, talking about autism, worrying about autism, etc. in this house. Bear with me, if you will.

Before the diagnosis (I say that so often that I'm starting to think it warrants its own capital letters: The Diagnosis. Possibly it needs italics as well.), we were waffling about having a second child. Part of it was that Nate was just really awful for the first four, four and a half months. He was generally unhappy about life. And so was I. Because I don't care what kind of sunny disposition you've got, if you're spending 24 hours a day every day with someone who screams a LOT and is only halfway content when he's being carried all the time, even you will be moonbat, spitting cherry pits crazy after a time. I seriously think I had PTSD from this time period. For a long time, when I would hear a baby cry like that in public, I could feel my blood pressure rise and my entire body would tense up. Good times.

Once Nate was past that phase, he became this generally cheerful child, good at amusing himself and oh-so-much-fun. I was not especially eager to go back to the newborn phase. I was enjoying my son and not feeling any particular pressure to have a second child. My husband and I decided to table the discussion until Nate's 3rd birthday.

And then, of course, less than 2 months before that discussion was to take place, we got The Diagnosis. And we started reading (oh, lord, the READING that comes with an ASD diagnosis) and finding all sorts of information. Among the many, many things we digested in the days and weeks after finding out was the scary statistic that as many as 30% of children with an older sibling who is autistic will also have some form of the disorder. (I would link, but there's a lot of information out there, with statistics ranging from 5% to, more recently, 30%.)

Well, shit.

For a lot of people, 30% is not a formidable percentage. After all, 25% of pregnancies end in miscarriage. Not that having a miscarriage isn't a painful and heartwrenching experience, but the 25% statistic isn't enough to put most people off. But this statistic....do you know what's in that 30%? The struggles, the meetings, the therapies (or lack thereof)? And the terrifying possibility that a second child could be more severely autistic than his or her sibling?

We decided that, for us, it wasn't worth the risk. We couldn't bear the thought of bringing someone else into the world to possibly be saddled with the difficulties that autism brings. And I, for one, knew that I would not be a good mother to two children with special needs. A lot of the time, I feel that I'm inadequate to mother the one I already have (which, I have learned, is pretty much universal among mothers, special needs children or no). So, although you could just as easily say "Hey, there's a 70% chance a second child would be absolutely fine," we put aside our vision of us as a four-person family and went on.

And then came the anger. No matter my ambivalence about having a second child before The Diagnosis. No matter that hey, now I could use the third bedroom as a craft room/guest room. No matter that we could unload all the baby stuff I'd laboriously packed and carefully labeled, moving it from our old house to the new one. The decision had been taken out of my hands, I felt, by a faceless thing. I am not one to cry "no fair!" But this time, I did want to cry and wail about the unfairness of it.

I know that this is not the same as infertility, not at all. And it's not the same as miscarrying. I am not equating my experience with those, but for the first time, I felt that I could truly commiserate, even in just a small way, with my friends who struggled with infertility and miscarriages. To have a child taken from you, even just the idea of or hope for a child, by something beyond your control is a terrible thing. There is grief. There is anger. There is humiliation and hurt. I understood that before, but I think I have a greater appreciation for it now. We all want to feel that we're in control of our lives. To be reminded that we are not, that we are not guaranteed success of our best-laid plans, that we are all subject to the whims of the universe, can be quite a blow.

Of course, with this decision comes the fear of what we will say if/when Nate asks why he has no siblings. We're going to have to work out what we want to say before the issue arises, because the very last thing we want to do is to give him the impression that what he has, what he is, is so terrible that we couldn't bear to deal with it again. He is wonderful. Challenging, yes, but I've not yet met a child who wasn't in some way. He is smart and funny and affectionate and the thought that broke my heart when I started to suspect that he was autistic was that other people would dismiss him out of hand and never get to know how wonderful he is because of this label. But he will likely struggle with this all his life. To watch him struggle is hard enough, and we already feel guilty that we contributed to creating what makes him struggle. It wouldn't be fair to any of us to do it again, with potentially worse results. Neither Chet nor I could bear up under the strain of that guilt.

I have largely made peace with our decision. I don't have any particular desire to have a second child. Seeing other people's newborns doesn't fill me with a bitter longing. I feel very relieved, for example, that I will never have to potty-train another child. (That's another blog for another time, provided I survive. Ugh.) But every once in a while, I feel a pang of loss for the family I imagined I'd have. But, hey, three is a magic number.