Normal, Whatever That Means

Every so often, something will happen--at school, therapy, wherever--that throws our whole vision of the world into question. Sometimes it's a cool thing, like the other day when Isaac spontaneously said "All three friends!" during a session with his therapists (they nearly fell over), and, later, "I want 10 friends!" Or he'll look impishly at me and announce, "I want to pee on Daddy's hat!" So silly, so four years old, so not what I want him to be saying, especially in public (but so age-appropriate, for which I am PROFOUNDLY grateful.) But then, for no reason we can see, he'll refuse to go into the bathroom at OT, or melt down at the drop of a hat (not Daddy's), or start turning in circles, or we'll get a message from school that he was running the perimeter of the room today and the dread...creeps...in.

It's lovely, this feeling of lightness when he's so connected and happy and silly. But the "symptomatic" stuff still freaks us out, I admit. I know, I know, he needs vestibular input and all that stuff. We get it. And we do what we can to give him the right "sensory diet" and guide him into a more regulated frame of mind. But I wonder: Is it possible that we haven't fully accepted this diagnosis? (We'd better have--I have a whole blog about it, for heaven's sake.)

We were in the car the other day, and J. was telling me about a message from school that Isaac had been acting unusually disconnected, and out of the blue I said, "I think we have PTSD." By which I mean that the diagnosis was so traumatic that, whenever we see something that "looks autistic," all those feelings of fear and worry and dread come rushing back. And we have this this hair-trigger reaction to a behavior, or a look, or a word, and we go right back to the feeling of numb terror we had in the developmental pediatrician's office. From my armchair, this looks a lot like post-traumatic stress.

Have you ever looked at skin under a microscope? The smoothest, youngest skin baby skin, when magnified, looks like the surface of the moon, with huge craters and crevices and....yeecch. It's like that in those moments: everything is magnified out of all proportion.

So if ASD is a spectrum disorder for the child, maybe it comes with the added bonus of a perspective disorder for the parent. We have become so accustomed to looking at our children under a microscope that we are in danger of losing our own sense of proportion. This blog, this community of us, is a place to try and get it back.

Comments

[kristen]

Brilliant. I think you really captured that feeling that all of us parents have. I love this. Thank you Susan.

[Niksmom]

Susan, This is so accurate! Yes, you did capture it. I often feel like I have some mild PTSD and cannot figure out why. Duh, I've never thought to look at where Nik is and how he is doing when those feelings come up. Thank God we have each other to share thoughts, feelings, ideas, laughter...

[Christine]

PTSD is something I think a lot about. Every time I enter a store with my son my heart beats faster and my breathing becomes more shallow. We don't have a lot of tantrums anymore but my body is preparing for one anyway. And perspective disorder? Yes, yes. What an apt description.

[drama mama]

I am having my own case of PTSD myself right now, for the last week or so. I'm finding it hard to stop.
Thanks for a great post.