Circles

Parents of children with disabilities/special needs/whatever will often relate their experience to the well-known five stages of grief. Personally, I don’t find that these stages express my own experience well. I’ve never gone through denial or bargaining with regard to Monkey’s challenges. As for the other three – anger, depression, and acceptance – I go through all of those, but not in any kind of orderly sequence. They are all sort of jumbled up together. One will predominate for a while, then another for a while, and they move in circles, overlapping, mingling.

I don’t grieve for “the child I expected to have” or “the parent I thought I would be” or any of those things that people often mention. I’m not neurotypical, I never expected to have a neurotypical child, and if anything I’m probably a better parent than I thought I would be (I had low expectations). Monkey is so much awesomer than any child I could possibly have conjured up in my imagination. In my darkest moments I don’t wish for a different child.

No, what I wish for is a different world.

It’s the world that I grieve over. Sometimes – often – Monkey is the catalyst for that grief.

For instance, while we were on vacation, we took Monkey to the park. There was a little boy there who was the same age as him – their birthdays were a week apart. The boy was zipping around on a little scooter thing; he offered Monkey a turn. Monkey tried, but couldn’t figure it out. The boy kept talking, and Monkey couldn’t keep up with him verbally. Then the boy started literally riding in circles around Monkey, who stood in the middle, bewildered, still, uncertain.

I grieved over this incident for the rest of the day. It was just too perfectly symbolic of what I see so often, and what I know will often happen in Monkey’s life – that others will run circles around him.

I had a two hour meeting with therapists and school officials earlier this week in which we all talked about all the things he isn’t doing, all the things he struggles with and needs. He will be in a special needs preschool classroom. He will get physical therapy, occupational therapy, speech therapy. He is behind his peers. He is developmentally delayed.

But that’s not how I see it. That is, I see the difference from his peers, and I see his struggles, but I don’t see those things in light of the value judgments that the world makes. I grieve because the world values people who are FAST, and people who are STRONG. People who are loud and flashy and attractive, who know how to lie and manipulate others. Those who can run circles. Meanwhile, the world overlooks, or disdains, those who are standing in the middle of the circle – quiet, thoughtful, slow, observant – the center, the gravity that makes the orbit.

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Things that go bump in the night (weighted lap pads, health care bills)

Well, I’m back. Back from a refreshing, wonderful, not-long-enough vacation to – whatever this is. “Real life”?

Monkey did much better on this trip than the last one we took (which involved self-injurious meltdowns, regression and dehydration). This time, we were prepared. We brought a binder full of visual supports, headphones, an iPad with his favorite games and videos, fidgets, a weighted lap pad with farm animals on it.

The lap pad was very calming for him on the plane. Unfortunately, it had the opposite effect on the TSA agents. On our flight out, they searched my carry on, questioned me about it and then tested the lap pad for explosives. On our flight back, I removed it from the carry on before sending it through the scanner. They still questioned me and tested it for explosives. (Behold the terrifying object: Find Me Lap Pads) Despite the hassle, I will definitely bring it the next time we fly, because aside from lowering his stress level, it’s the ONLY thing that keeps Monkey from continually kicking the seat of the person in front of him.

I tried hard to avoid thinking about Monkey’s doctor’s appointments, therapies, etc, while on my vacation. However, I have been following the progress of the AHCA in the Senate and have been continuing my healthcare advocacy on and offline, contacting legislators, speaking with human rights organizations. I saw the footage of protestors being dragged out of their wheelchairs and carried away by police. That’s our future if we don’t fight back – except that, eventually, the cameras won’t be there. So, once again …

CALL YOUR SENATORS! Especially if they are Republicans. Tell them to vote NO on the AHCA.