So, yesterday, we went to a baby naming and then to Sesame Place (since we were in the area).
Going to the baby naming meant getting up fairly early – the naming was in a suburb of Philadelphia, about 2 hours drive from our house, and so we had to get up, get everyone washed, and get our butts on the road before we’d normally be done with breakfast on a weekend morning. Obviously, that’s not going to do things that help the kids get into a “mood” to be cooperative, but we had hopes.
The Monster wasn’t, unfortunately, signed up for that game plan.
On the positive side – the majority of the folks at the baby naming already knew that he has Autism and is occasionally prone to meltdowns. Moreso, he was calmed down enough by just being allowed to walk back and forth, which let us pace outside the door to the room where the naming was going on (in case he threw a larger fit and I had cause to close it so he wouldn’t interrupt) in a manner that let me at least hear the entire thing, if not fully participate. Once the ceremony proper was done, he was able to be left to his own devices within the reception. (So to just be clear – things were fine at the baby naming, in terms of today’s topic.)
Sesame Place, though, was a different story. He very slowly but surely got into a mode where he was unwilling to cooperate with anything – it started off with whining and writhing, and moved quickly into screaming and hitting and kicking… and basically making a spectacle of himself. This was repeated on our drive home when we tried to stop for dinner at a Wendy’s restaurant, ending up with us changing to getting take-out and eating in the car on the way home.
I’m somewhat used to the meltdowns – I’ve gotten past the point where I have an issue with just throwing the Monster over my shoulder and carrying him out of a place if he’s being disruptive. What I’m never going to get used to is the staring that usually follows.
It’s bad enough that I don’t know why he’s melting down and that I can’t assuage whatever’s wrong to get him to calm down and enjoy whatever we’ve planned…. or to have him tell us what he’d rather be doing, or what would placate him. It’s worse that I have perfect strangers judging me as if I were a bad parent for being “unable” to control my child.
First, my child might be screaming and flailing, but it’s really not quite his fault. On the other hand, many of you who are judging me for being such a “horrible” parent… you have children who are well aware enough of what they should or shouldn’t be doing, and are still little hellions. You’re doing nothing to stop them, while I’m busy trying to at least reign in mine.
But more importantly, it’s just hurtful to feel like folks who have no idea what’s going on think they know anything about us. I think I could cope better if the looks were pity, or compassionate understanding… but especially last night in the restaurant, they were just looks of cold, “why can’t you do something about him” hatred.
Yes, Autism is an invisible disability. The Monster looks like any other child – albeit, a fairly large five year old – until you hear him talk and realize he’s not really that good at communication. Most folks out in public don’t hear him talking though, but rather only notice us, and him, when he’s having one of those meltdowns. They don’t see the times where he’s a happy, playful boy, or where we’re working with him quietly to try to concentrate on specific skills.
It’s times like these where I either wish I could send the Monster out in a t-shirt that explains that he has Autism… or that I could do what I really want to do. The latter, though, would likely end up with me in handcuffs and on the evening news for slapping stupid people…