Every now and again I chat with the other Autism moms or sick people about how it would be nice to have a totally boring day. I mean a boring day in the sense that most normal people would define one: running around with the family shopping or doing errands, grabbing lunch out, maybe catching a movie or dinner out. Or in! Just one of those hectic "normal" days that most families just do without thinking it is weird (to some of us).
Most of my friends don't have normal days like that. They are either too sick to run around. Boring for them is genuinely bored. My other friends can try, but they usually run into some of the less fun parts of Autism at the Mall and the "boring" myth is shattered by meltdowns and unhelpful bystanders.
Yesterday I thought I had a normal boring day. We pottered around the house in the morning. Then we grabbed lunch, went to the mall for sneakers, jackets and other back-to-school necessities, did some shopping and browsing, ate dinner, came home, watched a movie together and generally had a pretty "normal" day; -which was extrodinary for us. No meltdowns, no fighting, Mom wasn't sick, in pain or seizing and all was relatively well with the Universe.
It lasted until 10pm.
Grace was sitting on the bed getting ready to put on her jammies, and I gently pushed her down so as to "bless" her belly -as one does with young children. Her hip subluxated. I didn't hear it, but "ow-owed" and told me her bone had popped.
Then she said something that shocked me: "I can get it back in" and she stood up and started to twist herself around. I was shocked because it had obviously happened before. More than once, and she had never said anything to me. I guess she always got it back in. Well, not last night.
We ended up going to the emergency pediatrician.
They had heard of Ehlers-Danlos Syndrome (they claimed) but had never met anyone with it. They didn't know what to do with Grace. The hip was not completely dislocated, and she could move it and bear weight. They were looking at me like she was making it up, but I know better. She told us it "felt wrong" and I backed her up. She does not -CANNOT make up this stuff. A joint can be subluxated and pretty functional -except for the pain and feeling "wrong". You can take that information to the bank.
They were going to take x-rays, but I talked them out of it. I didn't want her exposed to all that radiation. With a lot of prompting from me, they examined her everywhichway, and finally on one of the last tests- the squat, there was an audible click
She told me later that the click had been her joint going back into place.
"Why didn't you tell the doctors that?"
"Well. I knew YOU would know. Your bones click all the time. I hear them" (oh.)
Yes, but we were not there for me, we were there for you. And me or the doctors can't feel what goes on with your bones. Only you can feel it. You have to tell them and give them that information. The more they know, the better they can help you.
The I realized something huge. Grace doesn't know that having EDS is not normal. That this stuff does NOT happen to everyone. Grace thinks that the doctors, nurses and everyone should just know this stuff. Because it happens to everyone, right?
This is what it says about ligaments. (and by happy co-incidence, it used the hip as an example!):
A ligament is a strong band of tissue that holds two bones together without stretching. Since ligaments don't stretch, their position at the front of the hip keeps the hip joint in place and makes sure it doesn't bend too far back when you stand up.
I explained to her that even though that book mentioned TWICE in a short space that the ligaments don't stretch, that was only true for most people. It is not true for us. She Joe and I have stretchy ligaments. So do my sisters, most of my cousins and most of *her* cousins. It is just how our family is. But most other people have the non-stretchy kind of ligaments, which is why they can't do silly tricks and their hips don't click.
I think the penny is starting to drop.
I also told her there are some things she can do to help herself, like "hooking" her fingers to push buttons, and not locking knees and elbows. That was enough for today's lesson, but I know I need to do a lot more.
For starters, I need to get MedicAlert bracelets for both of them. As a friend pointed out: I was lucky they docs believed me when I said she had a rare condition as I had volunteered that I had been the one who had caused her injury. Also I was able to prove it was genetic. If Himself had been in the same position, he couldn't prove the genetic link by hooking his leg over his shoulder. He might have been arrested!
The other thing I need to do is get my kids started on self-advocacy. For both the EDS and their developmental issues. That is a more difficult proposition. How do you teach an Aspie kid how and when to respectfully stand up to an adult and tell them they are wrong?
I don't know either. But I am going to try. Afer all, advocacy is my big thing. If OSM can't teach her kids to self advocate, then she has utterly failed.