Last week Cordy ended her final year as a preschooler. She had been through two years of half-day special needs preschool, followed by a year of full-day pre-K, and to celebrate a graduation was held for all of the kids in her class.

They all wore baseball caps that said “Class of 2010” and had gold tassels on the top as they entered the classroom and sat down in front of all the parents. The kids gave us a presentation of their talent show performance of “Eight Days a Week” and then the teachers spoke about the progress each child has made over the past year.

Each child then received a diploma.

We ended with a tear-inducing slideshow followed by cake. Because cake makes everyone happy.

Next up for Cordy is a mainstream summer camp at a local Montessori school, followed by kindergarten back at her current school. After the massive meltdown she had on the last day of school, I’ll admit I’m a little nervous about how summer camp will go, but I’m trying to remain positive and remember that the Montessori method was designed for kids like her, and she’ll likely have a few rough days at first but will then settle into the routine of a new place.

Cordy’s also on a new medication now. Our two week period of no-meds wasn’t the worst time of our lives, but it certainly wasn’t the best, either. Despite the side-effects of the previous medication, I found myself wanting to call up the doctors and promise to never complain about irritability from the medication again if it meant she’d sit still for a few minutes to read a book or do a math workbook or do anything other than demanding to watch TV every minute of the day. The flapping came back. Her lack of focus was painful to deal with. And I forgot just how out-of-it she could be sometimes.

But after speaking with the doctors, we’re trying a new medication that they feel will reproduce the positive effects of the study medication without the irritability. It’s the safest option of the medications available, with the fewest and least harmful side-effects.

The downside is that if it works, the study will be over in a couple of weeks and we’ll have to find some way to pay for the $180/month medication.

Yep, still no health insurance here. No private insurance will cover autism, remember?

(But OF COURSE we don’t need health care reform in this country. Ahem.)

One option could be to use the old generic of the drug – when it was originally used as a blood pressure medication – which is thankfully inexpensive. But it isn’t an extended release like the newly patented version, so we’d have to give her multiple pills a day (not too big of a problem) and hope it doesn’t create a roller-coaster-like effect throughout the day (could be a big problem) as a result.

So far, we’re seeing modest improvements in Cordy already. She’s back to reading books and doing math problems. She’s drawing again. And while they do still fight like sisters – as any kids would do – she is actually letting Mira play with her sometimes. Another week or so should be enough time to evaluate her response.

I’m being optimistic, but I think that Cordy is going to have an amazing summer of growth. She earned her graduation and I’m confident she’ll continue to impress everyone she meets.

Please, fate, don’t let me have to eat those words.

Cordy has spent much of her fifth year of life involved in a clinical research study. We volunteered her for this study of a known medication used to treat ADHD because we hoped the researchers were right and it might also help children with autism who have ADD symptoms. We knew it involved a lot of time on our part, and a lot of uncomfortable situations on Cordy’s part, but we also knew that something else had to be done to help her cope with her world.

It’s been a roller coaster of a ride so far – first we completed ten weeks of the blind study only to find that she was on the placebo during that time. Then we entered into the longer open study, where the medication has been slowly increased and then backed down when Cordy began to show a side-effect of irritability. Cordy has been amazing through all of this, happily swallowing her pills twice a day and enduring blood draws and cognitive testing with (somewhat) little drama every ten weeks. It probably doesn’t hurt that she really likes the research team and they fill her full of Annie’s fruit snacks and animal crackers at each visit.

We’re now nearing the end of the study and while her focus has improved and her repetitive behaviors have decreased, she’s still rating high on hyperactivity and impulsivity, and the irritability never went away. At Friday’s visit, the study doctor determined that she has only moderately improved on the study medication, and the irritability side effect concerned him. As a result, a decision was made to quickly taper off the medication and consider the possibility of a different medication for her. The catch? She’s going two weeks with no medication whatsoever before we’ll look into anything else.

It’s possible this will be a great two weeks. We may find that her improved focus and decreased repetitive behaviors have become learned behaviors and she will do just great with no medication at all. I would love for this to be the case, because while I’m open to medication I’d prefer if she didn’t need it.

But it’s the opposite end of the possibility spectrum that worries me. What if she goes right back to her old behaviors as soon as the medication is out of her system? She could regress to a point where she stares blankly at the TV and shrieks for more if we try to turn it off, or refuses to do anything that requires a sustained mental effort of more than 30 seconds. The flapping could come back full-force along with repeating phrases over and over.

In other words: I’m a little scared. I’ve seen her grow so much over the past few months, developing into a child who can now make friends at the playground, who can write entire sentences and read books and do math problems, and I don’t want to lose who she’s become. It’s already hard for me to accept that she will continue to be in a special-needs classroom for kindergarten next year (with some inclusion in a mainstream kindergarten), but the thought of losing even a little of this progress we’ve made…

Of course, it’s unlikely she’ll fall into that worst-case scenario. But it’s also equally unlikely Cordy’s behaviors will follow the best-case scenario, either. Which means we’re stuck somewhere on the spectrum (and yes, I’m including the double meaning of the word spectrum here), hoping to be higher than lower.

Her last pill is this morning, and then we simply wait it out. If she does regress, we will then meet with the study doctor to consider another medication that might produce the same effects of the last one without the unpleasant side effects.

Let’s hope this “detox” goes well for her or I may be the one needing medication at the end of these next two weeks.