A Mommy Story

Just before Christmas, Cordy finished the first ten week segment of the clinical research trial I took gamble on earlier in the fall. The study offered us the chance at parent training in behavior modification and/or a medication that can help attention-deficit symptoms in children with autism. In our case, we were randomly selected for the medication-only group, not knowing if we had the actual medication or a placebo.

At the end of ten weeks, the results were less than encouraging. Cordy’s behavior was practically unchanged. Still unfocused. Still unstoppable energy. Still struggling to finish a task without becoming distracted. But there were a few small changes that showed a glimmer of hope. In that ten week period, she stopped hitting herself, and although she switched to verbally abusing herself instead, it was still an improvement. We also noticed a slight decrease in the amount of “flapping” she does, too.

So did we have the medication? If we had the medication, I felt it was a big, fat failure. I mean, I wasn’t expecting miracles in a pill. I knew it could help calm Cordy and help her focus so she could accomplish more, but I knew it wouldn’t turn her into a typical kid. But I was expecting a little more than a couple of stray behavior changes.

At our last meeting, the doctors in the study looked through all of the data and determined Cordy was a non-responder. As a result, the seal was broken to find out the truth: it was the placebo.

I was a little disappointed that I forced Cordy to go to weekly visits, endure two blood draws (not fun for anyone involved) and take a lot of pills for no benefit. But honestly, it wasn’t that bad. Cordy quickly loved going to “the office” as she called it. She loved “her work” and the student assistants who work there became her willing slaves. All of the staff have been incredibly kind to her. While at each meeting, she was given an unlimited supply of organic fruit snacks, animal crackers, juice, toys, markers and adoring fans. Hell, I kinda wish I got all that stuff instead of a big stack of papers to fill out each week.

But it doesn’t end there. That was just part one of the study. Knowing that she was on the placebo, we are now entering the open-label phase of the study, allowing her to start all over with the actual medication this time. (Those who were on the medication in phase one are allowed to continue on the medication for phase-two.) The dose will be increased ever-so-slowly and we’ll watch her closely for any improvements as well as any side-effects.

I’m back to being excited at the possibilities and yet again a little nervous about medicating my daughter. Only this time I know for certain it’s the real thing. We’ll see what happens.

To end on a cute note: I was told by Cordy’s teachers today that all of the boys in her class are in love with her. Not just love her – are actively IN LOVE with her. They’ve been back from winter break for just two days now, and apparently the boys pester Cordy all day with, “Do you still like me, Cordy?” She’s the queen of the classroom, with five little boys willing to do anything for her. I love that about her – despite her social difficulties, she has an aura that attracts people to her, even without trying or encouraging them in any way. It’s an amazing gift to have.