A year ago, we started looking at seizures as a possible cause for Jackson’s severe regressions. Every child seems to regress generally when routines are disrupted (say during summer months when not in school) or structured times and schedules are not in place. Jackson is no exception to this rule, but he doesn’t flip out when not following a routine…he just meanders. He becomes a wandering, withdrawn little guy who would rather amuse himself by flipping socks in front of his face for hours. He needs directed play to remember that: oh yeah, people and toys CAN be fun. Continue reading “The big, bad “R” word: Regressions”
Head-Banging Isn’t Fun
About a month ago, Jackson started hitting his head again. He hasn’t done that since his “catatonic stage” when he first showed signs of withdrawing and regression, pre-GFCF diet. The bumper of the van, the corner of the dresser, every doorpost in the house planted their mark in the middle of his forehead, and before long, the school was sending notes home asking about the giant purple bruise on his head. We, of course, were disturbed by this self-injurious behavior and interrupted the head-banging as soon as possible, but after one or two hits, Jackson looked like the loser in a boxing match. Continue reading “Head-Banging Isn’t Fun”
I Hear Your Voice
Wow…we left this blog on a downer for three whole months. Yikes. Thank God we’re back with hope in our hearts. It’s been a rough go, but Jackson has indeed risen again. He is using more spontaneous language than ever before. Hurrah! Continue reading “I Hear Your Voice”
Autism debate
A few weeks ago, I dipped my toe into rougher waters in the world of autism. I attended a parent advisory meeting at Jackson’s school. The discussion had turned to providing more training for parents, equipping them to reinforce their children’s training at home using the same methods employed in school. One mom’s response revealed a new side of the autism debate of which I had been blissfully unaware. Continue reading “Autism debate”
How does he see the world?
I’ve only had a handful of migraine headaches in my lifetime, just enough to feel sympathetic to those who deal with them all the time. All of them begin the same way: I suddenly realize that movement is lost in a strobe-light effect, lights flash, black spots dance across my field of vision, and I have a hard time concentrating, and sometimes my speech is slightly slurred. This lasts for 20-30 minutes, then the pain begins and lasts for about 5 hours. Last week, as I struggled through visual distortions of an ophthalmic migraine to concentrate on Jackson making a breakfast request, I wondered if my visual symptoms are similar to what he experiences.
I am able to focus on Jackson’s left eye, but the rest of his face is fluid, moving, jumping. My brain feels mushy, and my lips thick. I focus hard on that left eye, trying to hear what he’s whispering, “I want….” What is my prompt again? So hard to concentrate.
Is this what you feel like most of the time, love? I wish I knew. I’m glad I had a headache today if only to remind me to slow down, be patient, wait for your response. Remember that your efforts are valiant. Your victories worth celebrating. You’re a tough little fighter, buddy.