Once I’m on the other side of a struggle, it’s a lot easier to see it as a positive experience. In the middle of it, it can feel completely and utterly hopeless.
Today I write thinking about mothers of newly diagnosed toddlers. I remember going to an autism support group, crying through the whole meeting and getting several knowing “ooh, you’re newly diagnosed” comments. At the time, I was like “what difference does that make?!”. It does make a difference.
Now that my son is becoming successful in many areas and the challenges aren’t nearly so obvious, I’m thinking back to some good decisions I felt I made. When he was a toddler, all I thought about were the things I did wrong like: I didn’t read to him enough (never mind he wouldn’t sit still and “reading” sessions were more scream fests than pleasant interactions); I didn’t eat well enough when pregnant (never mind I was 19 and trying to adjust to a new marriage that was already rocky and getting through college); I didn’t spend enough time talking to him (never mind I was trying to be a stay at home mom with supplementary income to pay our bills); the list went on…
After the initial slap of having all my worst fears confirmed by professionals who seemed to know less about the disorder than I did, I stopped viewing my son as broken. I started seeing him as a little person with needs, different needs than many other kids his age but no less worthy of having them met. I was fearful he’d never pass for “normal” but learned to see that as a gift instead of a curse. I prepped every educator and therapist on his ability to memorize the order of flash cards and test their boundaries. If you let him get away with getting on top of the table and running around the room humming when doing therapy, he’d do it EVERY TIME.
I insisted that anyone working with him:
- not ask him a question unless he had a choice in the answer (don’t say “do you need a kleenex?”, say “you need a kleenex, wipe your nose”)
- if you asked him a question, insist on him giving an answer and respect whatever he said (see first request)
- if you wouldn’t accept a behavior in a “normal” kid, don’t accept it from him but give him the tools he needs to be successful
- model/teach him how to ask for what he needs (if he needs to have a “free to stim” break, LET HIM HAVE IT when he asks for a break).
Today, I see the blessing in our journey so far together. In many ways, my son freed me from the bonds of social mores and performance based self-worth. He made the life I have now possible and I am eternally grateful for that!