
Last weekend in Dallas City Park. Sam loves to swing. Miranda was dodging the camera.
It took about a month to get the appointment, but last Thursday Samantha had a doctor's appointment. She hadn't been to a doctor since I had to do an emergency fly-in to Juneau a couple of summers ago to get the end of a Q-tip removed from deep in her ear. "Ear balls" she'd called them. And she had kept using Q-tips to try to remove the "ear ball", thereby pushing it deeper and deeper into the ear canal. That was an $800 trip for ten minutes in the doctor's exam room, most of that time spent talking about fishing and Southeast Alaska.
Last Thursday's visit ( Thursday evening, to be more accurate, and one reason why I love this particular clinic--open until 8:30 pm for appointments and on Saturdays, making these visits much easier on working parents and kids who decide to get sick after 5:00 pm), was productive. And hopeful. Now there is bad news, but it depends on how one processes these things.
Mick and I have talked and written extensively about Sam refusing to go to school and how little we can really do about it. She is big and strong. She's a lot less reluctant to make a huge scene than the average person. She won't hesitate to rip off her clothing in order to stay home. In other words, when Sam decides she's not going somewhere, there really isn't anything we can do to make her. Which is why she has only gone to school for two weeks since Christmas Break.
So we've asked ourselves, "Why? Why? Oh, please, WHY?????? And what can we do about it?"
Maybe we should have answered the "why" first. But it's important for kids to go to school, even autistic kids. Of course the main obstacle to this problem is part and parcel of autism itself: the inability to communicate effectively. Simply, she couldn't tell us what was wrong.
So we guess. We look for clues. All parents of autistic kids go through this. They can't tell you where it hurts. They can't tell you if they are scared or nervous or anxious or if th class room lights bother their eyes or the furnace hurts their ears or what. Asperger kids, maybe, but even they have communication challenges. Plus, Sam doesn't have Aspergers. She is definitely autistic.
We knew she had had difficulty with the numerous changes in her life this year. Mick and I going to work outside the home is a big deal. Her dad being the one taking care of her during the day with me gone is a huge change, though one they have both adapted to and have grown closer because of it.
Changes at school, not all of them pleasant. A bit of trauma and the problem with that, she couldn't tell us just how significant that trauma was to her. Yes, people make mistakes and I think quite a few people from the school felt some regret and even remorse for mistakes make with Sam. And frankly, autistic people aren't very forgiving of mistakes. At least Sam isn't. Great memory, too, which doesn't help the situation.
So we kept focusing on strategies to get her re-interested and re-motivated in school.
It didn't work.
What we forgot, and I'm not sure why, perhaps blinded by guilt and the numerous changes and challenges Sam has faced this year, we forgot that behavioral changes are OFTEN a sign that something medical is going on. That is how our autistic people tell us. They change their behavior.
So I wasn't surprised, no, I wasn't surprised at all, when the doctor told me her strong suspicions. We had talked at length. I had told her all my concerns and had described everything that had been going on in Sam's life. I had talked about her weight being our biggest concern. We'd talked about her irregular periods, her lying around in bed a great deal, but dancing and going for long walks as well. We had talked about mood swings, her absolute refusal to allow anyone to stick a needle into her. We talked about the difficulty with dentistry, hearing tests, etc., etc.
In fact, the only way to give Sam a thorough medical exam is to knock her out, put her under.
So that is what we're going to do, once the doctor gets everyone coordinated.
"Do you think she'll let me listen to her heart and lungs?" the doctor asked after our long conversation.
I looked over at Sam who was lying on the exam table examining herself in the mirror, making faces at herself and really enjoying herself.
"Sure," I said.
Sam did let her. It was very cute because Sam was trying to do those things she thinks a patient is supposed to do, those things she has seen on TV.
The doctor stopped and turned to me. "I think we're there," she said.
"What do you mean?" I asked.
"I think we're there. I think I can go ahead and arrange to have her put under at Day Surgery and I'll just have to work on coordinating everyone so we can get as much done as possible, but I think...you know how the skin on Sam's neck is velvety?"
"Yeah, the skin there is really weird, kind of layered."
"Yeah, that and the patch of soft hair on her chest and chin, those are strong indications of Type 2 Diabetes. I think we are there."
"Oh." I digested this for a moment. "Hey, do you think that that is enough to, well, make her not want to go to school?"
"Do I think it could make her feel just cruddy enough that she hasn't wanted to go? Oh, yeah! Yes, I do."
"Ah, I see."
And I do. Things are falling into place.
[I MUST DIGRESS: JUST WROTE FOR 40 MINUTES ONLY TO LOSE EVERYTHING THROUGH AUTOMATIC UPDATES AND OTHER CRAP. CRAP CRAP CRAP!]
So now I’m going to speed things up before it happens again. Actually, it’s been that kind of a day.
Mick had worked that night and i became aware of him at 2:00 a.m. o i just groaned, rolled over and went back to sleep. I called him from the relative privacy of the bathroom th next day at work and filled him in on the appointment.
He wasn’t surprised either, but expressed a lot of regret and disgust with us for allowing things to reach this state. I don’t disagree, but I don’t want to waste time on should-haves. It’s time for action.
So there are locks on the refrigerator and cupboard. Annoying, yes, but we’ll get used to it. I’m used ot this set-up from work and feel that it is necessary. I’m hoping that the inconvenience will keep me from grazing so much, too. Sam tried to cut off the lock with a pair of scissors, but after a lack of success, she gave up and seem ok with everything.
Our respite worker, Anusha, is being paid by another program through the county to help Sam where school is concerned and is taking her out into the community at this point.
Eventually, Sam will return to the classroom, I’m sure. In the meantime, I will try to chronicle our journey. It will be a family adventure. Hopefully we will all benefit.