I genuinely try to keep a good sense of humor about the things going on in our lives. I think that’s come through very well in the majority of what I write. There’s enough horrible things in the world that something like this – having a relatively high-functioning autistic son – is a minor speed bump in an otherwise pretty decent life. It’s not like we’re dealing with a fatal illness, with poverty, with hunger, with homelessness or the scourge of war.
No, it’s just a clump of small problems that tend to wander around as a mad little mob, waiting to pop out at the odd times.
I’m sure that this is something that most parents in our situation can relate to – few of our friends or family have children with real issues. (Most of them, thankfully, have beautiful, healthy, typically-developing-in-the-neurological-sense children.) I hear about or see sibling squabbles. There’s the discipline problems that just won’t go away. There’s the picky eaters who won’t contemplate ordering something off the children’s menu in a restaurant because it doesn’t meet with what they want for the evening. The one or two who absolutely, positively, don’t want to go to bed on time. There’s the children who are upset because they want XYZ toy and they’re being told to wait until their birthday. But that’s the limit of the ‘issues’ that their families deal with, and most of the time, it’s happiness and enjoyment.
I got over being jealous of ‘typical children’ a long time ago. It’s not where we are at the moment, and I learned through my life experience that sometimes we don’t get what we want, and you have to live with, and enjoy, what you get.
What I still have trouble with is feeling isolated.
My friends’ children are playing sports. They’re getting invited to birthday parties. They’re getting invited over to the yard next door to play on the giant inflatable water-slide-structure-thing on hot afternoons. And their parents are getting together at these things to socialize about how things are.
My family? We’re at home. We’re letting the Monster play in the backyard inflatable pool, or we’re going to the playground, or the JCC. When we do get invited to a party or whatnot, one of us is generally within arms-length of the Monster to ensure that he’s either playing nice or not going off in some random direction to places he’s not permitted to be in.
Which is not saying that we don’t ever get to go out with our friends. I lunch with one friend weekly, the wife’s in a Mommy’s group which has game nights and book club, and we do get out with a couple or two now and again. But… it’s not anywhere near as often as I feel like my friends, family or coworkers are getting out with their friends.
And the problem is, I don’t know how much of it is due to… whatever. This is the part that eats at me when I’m lying awake at night, trying to figure out how I can ‘fix’ the parts I’m able to affect. How much of it is because the people in our circle don’t know what to say or how to be around the Monster? Or if they don’t know what to do about their kids around him? How much of it is due to the fact that our Monster doesn’t make friends, doesn’t notice the other children his age who he spends half his day with? How much of it is due to our friends and family not knowing what they can or can’t say around us without worrying that we’re going to get upset? (And on that note, the wife and I have quite different thresholds/takes on what is and isn’t ‘safe’, which makes things probably even more confusing.)
I just miss not feeling like I’m on the outside, looking in.