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?
Wrong.
I sat her down this morning with the three dimensional human body book we have.
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.
It's something that the medical profession doesn't understand, I think, that those of us from families with dominant genetic differences grow up thinking we're normal. It wasn't until I was in my thirties that I started to understand that most people don't sit with their feet in their lap, and they certainly don't lie back and go to sleep with their feet in their lap. That other people didn't have some secret method for being able to stand in one place for more than five minutes without their knees buckling--that their secret was that they are built differently.
Posted by: yanub | September 01, 2008 at 02:05 AM
Yanub,
Yes. I was the same way. Had no idea normal people were so stiff.
That is why is it so important to learn and teach how to self-advocate. I was advocating for Grace automatically. They would say something stupid like "She has full range of motion" and I would say "How do you know? You don't know what her ROM is normally." The little fat guy got it instantly, but the older woman just looked annoyed.
That is the other thing: Some do get it when you explain, and some just never will.
-OSM
Posted by: One Sick Mother | September 01, 2008 at 12:30 PM
Yes, that's it, they are stiff. If I had had a normal child, instead of the flopsy one I've got, I'd have been concerned and gone to the doctor to find out what was wrong!
Posted by: yanub | September 01, 2008 at 07:27 PM
Normalcy is weird and extremely subjective.. i always thought me and mom were just, clutzy. we'd both injure ourselves. and mom would have weird complications from her surgeries and we both didnt heal on the timelines the doctors thought we should..
then i found out about EDS and we got diagnosed..
and everything makes since now!
i didnt know when i was walking, that getting random sharp pains (likely subluxations of my feet bones) in my feet wernt normal. I told mom, and she got them too so i figured it was normal .. same w/ knee issues and random "twists" and sprains etc.. my hip problems, flexibility etc...im still only now discovering all sorts of things that most people don't experience.. that i dont think twice about cuz its been normal for me my whole life.
its still facinating in some ways.
hard to convince others (medical professionals...) sometimes though...i wanna spread the news about it moreso at my job and as i get thru nursing school and once im a nurse...increase awareness and knowledge.
Posted by: Sara | October 15, 2008 at 02:49 AM
This thread is a litle old, and I'm not familiar with htis board-- but I'll give it a try. My son, 19ys, has Asperger's and is doing quite well now that he's in college, so it's time, I guess for my 16yr old daughter to have problems-- and the doctor suspects ADS-- she had problems with her elbows popping out when she was little, now it's her hips and knees and yesterday her finger, for no reason-- We rushed her to the doctor just so he could see it looking all crooked and believe her-- and mentioned that she, her dad and her brother all have horrible stretch marks on their torsos. But none of them are particularly flexible (Though my son has always had trouble not falling over, or out of chairs, if he forgets to focus on his body-- we thought that was all sensory integration/aspie stuff--)
So are these two "Syndromes" at all related? I am feeling uncomfortable with two syndromes in the family.
Posted by: amy | January 11, 2009 at 02:14 PM
Amy,
I don't know if they are related necessarily, but I do know that quite a few people with EDS do have an ASD as well. However with ASDs at 1/150 right now, it makes sense that there would be some overlap with ASD and virtually everything.
This may sound harsh -and I don't mean it to; but if there are two syndromes in the family, they are there despite your comfort level. Denial will only delay help for your daughter and compound the problem.
some links for you:
http://www.ednf.org/ (has a messageboard with membership fee)
http://www.ehlers-danlos.org/ (has a free messageboard)
-OSM
Posted by: One Sick Mother | January 11, 2009 at 06:03 PM
Interessante Informationen.
Posted by: lieben | March 03, 2009 at 04:35 AM