This week I attended an excellent presentation by Sarah Birnbaum of New York Special Needs Support. The topic was navigating the “Turning Five” process, i.e., getting a child into New York City special education for kindergarten.
It was a tough evening for me, emotionally.
There was a time when I thought that Martin might be ready to join a mainstream classroom as early as kindergarten. (Martin is not yet four years old; he is scheduled to begin kindergarten in autumn 2013.) Although we have made much progress, particularly in healing Martin’s gut and easing atypical movement and behavior, we still have a long way to go in language development and attention. We won’t try to place Martin in any classroom more advanced than his current skill level; because we are committed to lifetime success, we’d rather coddle him for an extra year or two than see him flounder because we shot too high.
So we’re looking at special-education primary schools. And so I related when Sarah said something like (I’m paraphrasing), “You may find it upsetting to visit these schools and fill out applications, because it’s not something you ever envisioned yourself doing, not a place you ever expected your child to be.”
But did I relate in the same way that the other assembled parents did?
I think Sarah meant that it can be hard to accept that your child is not suited for a mainstream classroom. And she is right—perhaps particularly so in the context of parents who do things like attend presentations on kindergarten admissions sixteen months before their children are due to start kindergarten. No one really wants to admit that his or her child has special needs, right?
Therein lies my thought for the day. I’ve read, in multiple sources, that the parent of a child with autism should grieve, i.e., should mourn the loss of the child who was expected, in order to better accept the child who is.
Adrian and I expected a high-achieving child, no doubt about it. From his earliest days, Martin was photographed wearing onesies and caps with the logos of our alma maters. We as parents debated topics like whether to speak to Martin in two languages or three, at what age he should begin music lessons, and whether the risk of concussions meant he should not play hockey. If we had a great fear, it was whether a spot would be available for him at the mainstream private school of our choice.
It’s been two years since we first began to notice signs of autism, and more than eighteen months since the diagnosis. Yet I have not allowed myself to mourn the loss of the child we expected, because I do not believe we’ve lost him. Martin is recovering, however slowly. I refuse to accept that he will face limitations based on autism. I admit that Martin has special needs now, but I do not admit that he’ll have them for long.
I do not grieve.
Nonetheless, as I sat in a presentation on finding the best alternative classroom, I found myself hiding the fact that I wanted to cry, and I wondered:
Can this hope actually make things harder?
My little superstar getting some exercise.
Finding My Kid 
I have two special needs children, aged 8 and 6. I have never grieved the loss of the children that may have been… my life has been filled with the children they are. And I think you have a valid point. I find myself hoping one day… one day… soon… they will do this or that, that my 6 year old will speak in sentences, that the violence will lessen. Maybe it’s time to take myself to a therapist and have them help me through this. As it is, I cry a lot, I compare them to other kids their age— I can’t help it— and I think maybe this will be my child one day. But it won’t. I think you’re right. It has been very hard for me, and hard ON me… maybe it’s just time to let those might-be-would-have-been children go, and settle on settling in and accepting the wonderful, eccentric kids I HAVE. Thanks for the post.
Yes! The thing is, to “accept” what I have feels too much like giving up on what I believe may be. I believe in recovery, because I’ve seen it happen. So I don’t want to settle for less. Hang in there.
I’ve never grieved either. But I got angry. If I’m being honest, my son is 8, and I’m still angry. I’m not angry with him. I’m angry at how hard it is to get him the education he needs. I’m angry at all those mothers of “normal” children who give me dirty looks when they see my son’s behavior, because, to them, I obviously don’t know what the hell I’m doing as a mother. But I also eventually found him a good school. I also have found a lot of– believe it or not– humor in my and my son’s situation. Life goes on and it has been going much, much better. I feel that it will for all of you too.
Robin, I struggle a lot with anger. A lot. I think it’s a little different from what you experience. I do of course get ticked off when I feel judged by other parents. (Incidentally, having a child on the spectrum has taught me a lot about not judging other parents. The way I see it now, we all have our issues to deal with.) But most of my anger comes from the “why us?” question. We tried so hard to do everything right for Martin: healthy pregnancy, nutritious foods, 21 months of breastfeeding, proper sleep environment, and so forth, and so forth. And yet it’s my son who ends up with autism. When I see parents who are so casual about everything, who feed their kids fast food and take them on the subway at midnight, I wonder why they got off so easy and why this burden fell on us. Those times I feel angry at the world. I go back and forth on whether it’s a healthy emotion. Does it make me want to get up and go for Martin, or does it just leave me wallowing in my own self-pity?
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