Last week we started John’s 10-hours-per-week of in-home ABA therapy. It’s hard to say how it’s going yet, but I’m anxious for it to go somewhere. If this is possible, (and I know it’s supremely unfair to have Sam as a constant comparison), J. has become more “autistic” over the last month. He stims constantly: pressing his thumbs and forefingers together tightly then fluttering his hands about his face. Sometimes he looks like he will go cross-eyed from the energy it seems to take. He has also been waking pretty regularly between 4 and 5 a.m., very excited and very loud. When I pick him up, his limbs are rigid and tense. It can’t be very relaxing to be so wound up and his developmental pediatrician agrees: we’re scheduled for a 24-hour EEG in the next few weeks to rule out seizures.
Seizures. Can anything else be sent to this little guy?
When they were born and the pediatrician checked them out, the words He has a slight heart murmur were alarming but benign when followed by Lots of babies are born with them and are fine. But John’s wasn’t small and he failed to thrive. He had open heart surgery at just three months of age to patch a huge hole and I thought I’d never survive it.
Memories so clear: him lying in his little gown staring up at me from the cavernous, sterile crib, smiling up at me and everyone who came in to see him, so happy and so trusting. As he lay there, he would excitedly kick his legs and tense them, much the same way he does now, but at 4 a.m. standing in his crib.
He survived the surgery only to develop a staph infection in his incision site a few weeks later, requiring another long hospital stay and a month of super strong antibiotics delivered daily through a central IV in his chest. I thought HE’d never survive it: so many drugs coursing through his tiny body, this couldn’t be right for a little baby, could it? And don’t think I haven’t wondered if this in some small way has contributed to the severity of his ASD.
Now we are looking at potential seizures.
I am no longer an innocent new mom. I feel like I’ve already fought too many battles and they’re only two years old for pete’s sake. I’m battle-weary. And just a little bit battle-sad today.