by Sarah | May 10, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
I should have known better.
My first mistake was getting “comfortable”.
As comfortable as anyone can when you have three special needs kids.
Everyone was doing well, no major incidents for two years (*knocks on wood*). I was well-adjusted to our current status, our version of normal. Our version of perfect.
Were there hiccups? Well, sure. We have two girls on the verge of tween-dom and all the drama that comes with. Drama we’d been through with the now-teen.
But overall, we were good. We had things handled. IEPs in place, regularly scheduled doctors visits…in fact, we’d gone down in occurrences of those (from quarterly to every third, or half a year).
During our month of hell, part of the trauma was dealing with issues with Kennedy and Denver and their new doctor’s ways that we didn’t like and his poor poor choices. Situations we are still coping with, but wish so much up in the air, we are in a holding pattern (I hate holding patterns).
Then there is Molly.
Several months ago we were hanging around the house. I had my hands on Molly’s shoulders, and she moved. Immediately I noticed something odd. A very pronounced clicking when she moved her shoulder. I asked her if it hurt, it didn’t. I knew it wasn’t right, but with the chaos of all the crazy around this house it got pushed to the background.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
So I said, “I know this isn’t your area, but could you check out this weird thing?”
He checked her shoulder, had me do the same to look for a specific issue, then had her lie down and rotated it, checking everything. As she sat up, she decided to show him how she can bend her fingers in hyper-flexible ways. “Isn’t that cool?”
And so, the doctor explained to me that Molly has no connective tissue in her right shoulder. When it’s rotated, it becomes dislocated and pops back in. It is bone on bone.
Add in the hyper-flexibility in her joints…and he thinks we’re looking at a connective tissue disorder–one that we aren’t specifically testing for yet.
First step–we must go to an orthopedic doctor for her shoulder and determine the best course of action. She’s to stop goofing around with it (she finds it a neat trick), and take it easy on it, even though it doesn’t hurt.
As for the connective tissue disorder (he did not specify which as of yet)…it’s a wait and see. Deal with her shoulder first, watch for other symptoms (migraines, heart palpitations).
We are once again in the “hurry up and wait” world.
I hate being here.
With a white hot passion.
I was definitely stupid to get comfortable.
I know better.
by Sarah | Apr 2, 2015 | All About Molly, All of Us, Autism, Redefining Perfect, Special Needs
Today is “Autism Awareness Day.”
For some reason as I heard the words in my head this morning I immediately became amused. I understand that it’s about spreading awareness of autism, but I could only laugh and think But I’m aware of it EVERY day.
This is our face of autism. Those gorgeous ice blue eyes. The smile that has found its way to her face somehow. The personality that is growing every day.
Most would call us blessed, and we agree. Molly’s form of autism is mild enough that she will likely lead a “normal” life. A job, a family, all that a parent imagines for their child. That doesn’t mean she won’t struggle. That every day one quirk or another won’t rear its head to impede what would normally be an easy step into a careful shuffle of feet.
The little reminders that pop up.
The way she organizes her M&M’s by colors in a snakelike form before eating.
The way she delicately nibbles, trying not to let the grease or crumbs of food touch her lips or outside of her mouth.
The way we cannot break our established program or routine without a meltdown.
The way her hugs are strong but brief, no lingering touches or snuggles.
The way you see her mind processing and learning everything she cannot express verbally.
Leaps and bounds of progress have shaped our lives these past few years, a sparkling personality is emerging from behind the walls. A girl that wants to be a model. A girl that’s amazing at math and science.
With those she trusts she is bubbling and bright, even bossy…but the meltdowns still linger.
We are blessed.
All parents are blessed.
I hope today your awareness expands, but shouldn’t it every day?
by Sarah | Nov 5, 2013 | All of Us, Crap, Random, Special Needs
*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
*~*
*This post is a re-post from a couple of years ago. It’s still very relevant to us today.
My first mistake was getting “comfortable”.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
