The Unsettled Path to Acceptance

This is a most unsettled state I’m in tonight. Adam is frustrated – trying to talk, not being understood (he slurs his sentences). Also, he’s turning four next week and I am finding a new desire for independence – a desire to do everything on his own, pretty much. He resists my care of him – brushing teeth, brushing hair, getting ready for school. In some ways, he reminds me so much of my youngest stepdaughter when she was four. I remember a lot of whining, tantrums, and lots of hitting. While I remember her being much more articulate than Adam, I do see similarities in behaviour. So that should make me feel okay, right?

But it doesn’t. Adam is growing up, and I find myself nervous. I want to teach him how to use the computer – he is already typing his own words, but in the same way that he labels things. My team of therapists suggest it is “too early” to teach Adam the computer for communication purposes, and that baffles me. If Adam has a skill that he’s inclined to use and benefit by, then why is it too early just because the other kids aren’t doing it?

At school, Adam’s teacher notes that despite his words going down, his skills are going up – again that time of acquisition, of processing and for me, of waiting. I wrote before that I find these transitional times difficult. Logically, I know that these periods are necessary, but I wonder if I’ll ever stop worrying.

I find extracurricular programs so difficult to find, as the music class I had enrolled him in became very “verbal,” entrenched in pretend play. Long diatribes of being a pirate on a ship bored him, and he eventually got up and wandered around the room. So many “teachers” really don’t know a thing about autism. Adam is expected to sit and respond.

There is a lot of talk about these ideas of acceptance and just wanting one’s child to “function” in the world and “have all doors open.” Today, I wanted to pack this all in, all this blogging, learning about science, this struggle with friends, my lonliness in this struggle as there seem to be no more friends out there who really care about me, or want to understand what this is all about. No parent thinks they will be engulfed in controversy about autism. No parent has any idea that they will have to advocate for their child every single day from schools, to the doctor’s office to a nice little music class. No parent realizes that all privacy is lost with therapists coming and going from the home every afternoon. No parent has a clue that there are people who want to tell you how to raise your autistic child at every turn – that they think they know better. No parent banks on getting involved in autism so deeply in order to improve their child’s future, that it becomes their new career.

But I know of many.

No, acceptance is not easy, friends. It is not standing idle.

It is about recreation. It is about creating new friends, and new communities who will teach and support us and our children. It is about creating a new awareness what difference, autistic difference means, and supporting it, and supporting success. It is about investigating our notions of well-being and happiness.

If this is rebirth, I think I’m in labour.