A New Year, New Battles

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.

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  • It was around two years old when Roo started his stims and when I also thought, “he seemed more autistic”. We also did a MRI and EEG at around the same age and this showed no sign of seizures. I know it’s hard and I still have sad days sometimes, but he will improve (both boys will continue to grow). The home therapy you do with him will make a difference. Some days may seem harder than others, but there will always be a good day to celebrate progress, no matter how small, right around the corner.

    That picture of John in the hospital is so sweet. Really, he reminds me of Roo at that age. Roo was also so trusting and happy all the time.

    John certainly has been through a lot in his short two years, but thankfully he has a wonderful Mom to be there for him. Hang in there! You’ll get through the tougher days and your two sweet boys will be just fine.

  • KAL, I’ve been trying to leave a comment all day, but Blogger kept freezing up on me. What I wanted to say is this:

    It’s okay to feel battle-weary sometimes. Just remember that you’re fighting the good fight, and that there are lots of us out here when you need reinforcements!

  • Kal,

    I want to give you a big {{{HUG}}} Gabe also had an EEG done this past year to rule out siezures. He would occasionally shake like he was freezing cold, but was completely aware of everything going on around him. His EEG was fine and we haven’t seen him shake like that in a long while. I have heard that the shake, like Gabe’s, can be an avoidance technique. Which makes some sense, because he did it when he mostly ate and Gabe did not like food then.

    Your little guy has gone through so much so far. He must be a very strong and brave little boy :o) I’m not sure if this will help ease your fears, but Gabe also goes through periods where his “stimming” seems out of control. He had been licking the back of his hand quite often the last few days and has recently stopped. It comes and goes. Maybe it will too for your little one.

    It will all come together soon, maybe not a complete puzzle, but there will be a place where you feel you can safely stand for awhile with both of your wonderful children.

    Kristin
    PS Email me if you would like to talk some more :o) I looked recently and can no longer find yours under my yahoo account.

  • Thank you all for your words of support and encouragement. I feel less alone knowing that you are out there and know what I’m feeling these days. It means the world to me.

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