Zack is having some downs. It seems like it started around Christmas. The screaming that virtually ended when we got the Arbaclofen (STX209 drug trial medication) dosage adjusted for him? It's back. He's making me crazy, and it's not even summer - he's gone most of the day. I get quiet a lot of the time. But that scream he does - it shreds my last nerve.
So obviously, something is bothering him. The question is, what? How do we find out, when he can't express himself any better than to tell me he wants "zoomi" (Team Umizoomi) or "juice" or "Comb" (Honeycomb) or "bed" (when he's ready to go to bed). (We do encourage him to speak in full sentences and he can, when prompted. But on his own, prompted by only his own desires, he speaks as few words as possible.)
So we look at what has changed in his life recently. He has gained quite a bit of weight in the last year. He outweighs AJ by 17 pounds. Zack is a strong, thick kid, and AJ is scrawny. Sometime I'll try to get a photo of them together without their shirts on, so you can see the difference in their chests and arms.
I'm not sure what else has changed. Zack has a lifelong history of needing a little more than AJ does. He's always needed a higher dose of the same meds. So it wouldn't be entirely out of range for him to need a change, when AJ does not.
For right now, we are going to try giving Zack his second Arbaclofen dose immediately after school. We are hoping that changing the time of day he receives it will be enough to help him level out his behaviors, and feel better. I don't have high hopes of that working, but I also don't want to increase any medication if we can at all help it.
Aliza has been having some extreme anxiety. Last night, after an hour and a half of dance and an hour of basketball, she realized she'd forgotten her poetry homework at school, and she had a meltdown. She shocked me, really. She suddenly bent over like she'd been punched in the stomach, ands began to cry and cry.
Some nights are busy. It's not that we keep her too busy running from activity to activity. Wednesday night she had nothing at all to do. Tonight her schedule is free. I think it's the way it is for all of us - adults and kids. It's normal to be busy some days and less so on others.
But last night - wow.
Somehow we talked her off the ledge and she cried herself to sleep. I emailed her teacher just to let him know what was happening. I don't expect special treatment for her. If her homework isn't done, she needs to suffer the same consequences as the other kids would. But I did want him to know what a basket case she was, over it. How bad she felt.
She is that proverbial child I can brag about - she plays basketball and dances several times a week, all while maintaining almost straight "A"s - and would, were it not for the fact that I have special needs children who don't accomplish anywhere near as much, and I know how it is on both sides of this fence. Special needs moms don't like to hear bragging about brilliant children. At least, this one doesn't. It makes me think wow, how sheltered and wonderful your existence is. Good for you.
Where did this perfectionist child come from? Not me. Not Mark (no offense meant. He's just more laid back than she is).
Planting 21/4/2018 #WotW #FragileX #Gardening
13 hours ago