Friday, March 20, 2015

Rinse and repeat

Walking into Gus's conference two weeks ago, I felt confident. This would be the one. Issues addressed, ADHD symptoms helped with medication and other interventions, Mark and I could finally enjoy a conference where we'd hear all that's wonderful and amazing about our son rather than what's difficult about him.

Mrs. S. began by asking us if there was anything we'd like to ask or discuss before we began. Mark piped in with something we'd been wondering about for a few weeks: Gus's medication seemed to be losing its effectiveness a bit, but we hadn't heard any negative feedback from his teacher.

"Oh, thank God you brought that up," Mrs. S. exclaimed. "Things haven't been going so well.
Sometimes he's all over the place;
others he shows uncommon focus.

And just like that my hopes for a glowing review of Gus's accomplishments evaporated. It's amazing to me that I can continually trick myself into believing that any one intervention will somehow make Gus's journey through school simple. 

I know that medicating for ADHD is as much art as science, that the meds are unique in that doctors don't determine dosage based on a child's weight but rather on how well they're controlling symptoms. When Gus started meds four months ago, Mark and I were surprised, relieved and a little incredulous that we hit on the right dose, which happened to be the lowest dose possible, with the first try. We expected it to be a bit of a process.

Everything worked beautifully for a few months. Gus's teacher raved about the turnaround. I may still be waiting for that conference with gushing feedback, but for the first time ever, Gus received 3s for his behavior on his report card (oh, how those 2s used to pain me). School was going smoothly, and Gus was still Gus. I was lulled into complacency and magical thinking once again.

The conference brought me thudding to the earth once again. It never stops being painful, hearing that my boy is struggling. It never gets easier to suppress the useless impulse to be defensive of him, to make myself sit and listen to what the teacher is saying without mentally overreacting.

I walked away from yet another conference filled with worry. The next day, we called the pediatrician's office and upped Gus's dose. On one hand, it feels like a blessing to be able to make an adjustment and see quick results – they were quick indeed. Yet, it's not simple to me at all. I know his doses won't be ever-increasing, but the process makes me fretful.

I'm well aware of how controversial ADHD meds are, but I am thankful for them. Still, they're not a panacea. They're complicated. With too high a dose, kids can turn a little zombie-like – losing the real Gus is something I can't accept. Even when the dose is right, you're still up against side effects. Some days Gus won't eat more than a bite or two at lunch. Some nights, it takes him an hour or more to nod off. 

When I think about the next many years, it sometimes feels incredibly overwhelming. I read about all the difficulties, all the risks, all the comorbidities people with ADHD face, and my stomach churns. 

Time and again, I'm reminded that this is a curvy road we're walking with Gus, and oftentimes we can't see what lies ahead. Acceptance is a process. Accept, regress, rinse, repeat. 

Back to Gus's conference, I don't fault his teacher for anything. Though I'd like to hear about how well Gus reads (he's pretty amazing) or his math skills (even more amazing), I know she has a short window to convey to us the most pressing issues.

Since I missed out on reveling in how special Gus is, though, I'll share a bit here.. As we drove to St. Louis on Sunday, he asked how much longer until we arrived. I told him five hours. "So, 300 minutes?" he asked. What kindergartener even thinks about such a thing, much less calculates that five hours equals 300 minutes?

After taking the elevator up to the Arch, we headed to the small theater and watched a 30-minute documentary about the building of it. I worried Gus would be bored. To tell the truth, I was a little bored. I looked over at him, though, and he was enthralled. "I could build that if I had enough gray Legos," he leaned over and whispered to me.

Gus has incredible gifts and potential. Helping him break through his barriers will be part of my life's work.