So, no word from Floating Hospital about this sleep study. Meanwhile, he gagged and cried so hard last night after waking up gagging that he has petechia (little red dots where tiny capillaries broke from the force of his coughing/gagging/crying) all around his beautiful eyes.
The hardest part? Not the throwing up. Not the cleaning up. Not any of that. It was the fact that I could not tell what the problem was. My son could not tell me what was wrong, only that something WAS wrong and then the guessing game ensues. Trial and error, trial and error, all while this poor child is fearful, in pain, etc. It is about the most discouraging part of all of this stuff.
Now, do not mistake me. Every experience teaches a little about what the causes COULD be, and yet, inconsistency can be king somedays. A parent in my parents group notes her child to be “consistent at being inconsistent” and ya know, that’s exactly how I am learning autism to be for my son.
One day, he’s mister present. He’s engaging in his own way, completely involved in whatever therapies are happening that day and truly delighted to be alive so it seems. Then there’s the other days, where stimming and regression are king and it feels like nothing positive can get done at all. And then, there’s days that are a combo of the two. Most days tend to be a combo, though one always shows more heavily than the other.
Today is more positive than negative, for which I am grateful, but man do I ever need to get a response on that sleep study so we know where we’re going and what we’re doing. I want him to have relief, and I want the answers others can give me for him right now.
The lessons I learn:
J cannot tolerate sitting in a regular shopping carriage and if allowed to run free will do just that. He’ll stim on the carriage, at peril to himself, and stim on everyone else’s too. It’s frustrating but hey, he’s overwhelmed in big stores. I understand why he does it. There are more days than not right now where, if it’s available, I can use one of those impossible to steer mega carts with the forward facing bench or kid seats and we’ll enjoy GREAT success. He’s happy, able to feel secure while interacting with me when we shop and I’m happy cause I can get the shopping done without being so worried about him.
Today he was very dubious about shopping carts at all. I let him pop up into the seat on his own and buckled him in and he wasn’t too keen. He had a little meltdown at the pharmacy and couldn’t settle. So what’d I do?
Strap his cat in beside him.
Why didn’t I think of this months ago? I wish I had a picture. J in one seat, cat in the other as we cruised Target. I could have shopped all day, he was so comfortable and content.
My life is all about whatever gets us through the day.
God help us all if anything ever happens to Fat Kitty. We’ll all be screwed, then.