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 He becomes a wandering, withdrawn little guy who would rather amuse himself by flipping socks in front of his face for hours.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”
Waiting 6 months for a kiss
In the last week Jack has used fewer words again than he has in a long time. The other night, I was feeling so discouraged by his progress, but I had another shift… Jason, desperate to connect with his son, had invented a new game that was apparently awarding enough to evoke a response from Jack.
“Give me five, Jack.” Pause…smack. I look up to see my husband, with Jack in his arms, jumping around in circles singing, “I got a five, I got a five. Whoo, whoo, whoo, WHOO!” He proceeded to offer this same reward as Jack gave each of his sisters a five, a hug, and even a kiss (we’ve waited 6 months for a kiss before).
Pressed, but not Crushed
So, how do you have a real gutty, honest conversation on a blog? I’ve been grappling with this lately, because I think Sara and I are generally a hopeful pair. Naturally, then, on this blog, the glass is always three-quarters full. But I have to be blunt: this has been a BAD couple of months with Jackson. His words are gone, the humming-bird speed hand-flapping has become almost constant, and he is hardly responding to us the way he was in the Spring. We’ve told you about the waves of progress and regress. This is the bottom of that cycle. At least I hope it’s the bottom. Continue reading “Pressed, but not Crushed”