It's been a bad week on the autism front. Can I confess if I haven't already that every couple of days we have a stretch that is so great I still entertain thoughts that maybe T doesn't really have autism? But it's like he turned 3 and it just flipped a switch.
We have been on a NEARLY (not quite) total media blackout with our kids, but as they got older I have let them watch videos just a couple of times. More on that later. But after seeing Bob the Builder maybe 3, 4 times? -- 2 days ago T started reciting, over and over again something like: "hey kids! you can join our fan club by calling 1-888 [repeats entire phone number missing like 2 or 3 digits] or go to www dot bob the builder dot com.
While lining blocks up in the window sill.
On THAT day, I was able to more or less keep my humorous outlook.
But at the beginning of this week the major meltdowns started. I THOUGHT we already had meltdowns, but this is a whole new level. Screaming like someone is torturing him while a stream of unintelligible and garbled words emanate between racking sobs.
And yesterday, the self injury commenced. First he was trying to hit me, and I said, no hitting, and then he just starting hitting himself. It was like ... a really really bad dream.
I gotta tell you that was pretty close to the worst moment I've had since this whole frakking nightmare started.
But I hate to leave this so dark, so I'll tell you that the day ended a little nicer.
Last night, as on so many nights, T just could not fall asleep. He was so tired he was even SAYING "you want to sleep," "you want to lie down," but then when I lay down with him he would nurse and nurse and nurse and then stop and gyrate around and then sit up and spout some of his favorite scripts or something he thought was funny ... until I had to call my husband in to get him. (I can't carry him in to my husband or he has a meltdown when I leave. But often he can leave me okay.) I had to give up because he's keeping S awake.
So we take out the melatonin again. Because it's been 2 hours since he has been obviously read to go to sleep but unable to.
After S falls asleep, part of me just wanted to leave T out there with Daddy, which I sometimes do. I'm just so tired. But that causes problems in the middle of the night. (another story)
So I go to get him. He looks like he's already asleep (as is Daddy) and I stare at him for awhile. I automatically note for the thousandth time his skinny little upper body and everything I've learned about hypotonia and lack of postural stability, and all my questions about how that has anything to do with the rest of it race through my brain again. And I wonder again what I need to be doing to build up his upper body strength and get him to lift his head up off his chest and look up and look around and it all just kind of whirls around in there until I push it aside.
I pick him up to carry him to bed and he cracks open his little eyes and smiles the most beautiful smile as he says, "It's Mommy."
And I guess it's going to be okay.
Thoughts on Newtown
5 years ago