I wrote very recently that I had had The Big Conversation with Joe about having Ehlers-Danlos Syndrome. He took it well at the time. In fact, for a ten year old boy with Autism, he took it very well. I had a feeling he would process a lot of this slowly and he may NOT be OK with it soon and for a while thereafter. I figured this process would happen slowly, maybe over the course of this calendar year, and then he would accept and carry oon with his life.
However, events conspired against me.
The first event was that Joe fell spectacularly during Gym a couple of weeks ago and got hurt in several places. Everything righted itself, except one. He complained of continuing pain around his hip/buttock. I told him not to worry, we were seeing the pediatric rheumatologist last week, and she would have a look at it.
Ther rheumatologist visit was the second thing. First off, it involved taking them out of school early, which messed with their routines. Then when the doc did look at his sore bit, she said if it was still hurting on Monday (today) to call her and she would arrange for an x-ray. Joe was quite put-out at the thought of an x-ray. He mentioned this to me at the time (he has had some prior bad experiences, which are not documented here on OSM). I thought I had put his fears to rest.
Many people don't know this, but a lot of people with Autism suffer with anxiety. Joe is one of them. And while a lot of autistic anxiety manifests as whining, nagging or ritualistic behaviors, Joe tends to be a bottle-it-up-then-explode kind of guy.
He exploded at 11pm the following night. Over this time, the concept might need an x-ray had morphed into WILL need surgery and will be permanently disabled and need a cane in Elementary school (and all the kids will laugh at me).
It just so happened that Himself was not home that night. Joe got very angry with me "It's all YOUR fault. I got this from YOU!" and locked himself in the bathroom. I ended up on the floor outside, trying to talk him down through the door (I could have opened the door with the little thingy, but decided against it). Eventually he came out to talk, but he was still very upset and self injuring.
I got him calmed down and we talked for a long time. I explained that an x-ray does not mean automatic surgery. It just means taking a picture, and that even if they saw something wrong in the x-ray, that probably would just mean extra physical therapy outside of school. I promised him he would not need a cane in elementary school. -I don't like to make promises like that, as I can personally make no guarantee but he only has a few months of elementary school left.
So Ehlers-Danlos Syndrome meets Autism and worlds are colliding in my little house. Joe is still having quite a lot of fears about EDS -particularly the x-ray and it's implications, but he has not had another meltdown about it.
I don't know how many other moms have gone through this. I know I am not the first, but this feels like uncharted water right now. I am doing the best I can for us -that is all I can do as every case is different, and I hope it is enough.
I will update you on the x-ray. He still hurts today, so I called to arrange it. I should tell you guys about the time he had a CT scan, then you will have some idea how much I am NOT looking forward to this... *sigh*
Maybe that can be tomorrow's post.