Monday, May 8, 2017

Our Continuing Journey on the Spectrum: Kirch Medical Center

* For new followers, my son, Zackary, was diagnosed as severely autistic at age two. Since then, he's been downgraded to moderately autistic, with an added diagnosis this past year of ADHD and Unspecified Anxiety Disorder. For a brief history, visit these posts.

Today we're visiting the Kirch Medical Center in Rochester. One of the resources we've always lacked in Zack's development has been a Developmental Pediatrician specialized in autism. Our family pediatrician has been wonderful and open-minded, and recently helped us in our decision in selecting medication for Zack. However, if it's one thing we've learned in the past ten years, it's that there's no such thing as too many resources as the parent of a special needs child.

The past three years have been filled with struggle, featuring many peaks and valleys. To be fair, we've seen lots of peaks in regards to Zack's personal development. There was a time when we feared he'd never be able to communicate at all. We wondered if he'd ever be able to interact with family and peers. We wondered if we'd ever see a unique and vibrant personality develop. Over the past few years, we have definitely seen that. Zack can be, by turns, witty and smart, caring and empathetic, and he approaches the world from a simple perspective which cuts through all the sometimes mindboggling complications of an adult world. He makes us see and experience the world in ways we probably never would've if he'd be been born "normal."

He's also frightfully intelligent, especially verbally. I'm amazed at the concepts and language he picks up from television, how he contextualizes it and turns around and uses it appropriately in conversation. He knows how to do things with the TV and the iPad WE haven't discovered how to do, yet.

And he loves his family. He interacts with them, plays with them, and knows them. This is perhaps the thing we value most.

We've also experienced peaks in his services. Two years ago, Zack received funding for a community habitation worker - someone who picks Zack up after school and takes him on after school activities. Zack goes bowling, swimming, visits our local Discovery Center and Science Museum, and plays on the playground. He's participated in Special Olympics volleyball, basketball, and bowling. WE can take him bowling now. He loves to shoot around and play HORSE with us. These are things we feared wouldn't be possible eight years ago.

School has been another matter, however, Three years ago, at our district's public school, we started seeing the first incidents of aggression and unfocused anger. At first, we simply thought it was because he needed to be in a more autistic-focused program. So, he switched schools and attended an autism intervention program last year in a different district. Suffice to say, after a decent start, the end of the year devolved into chaos. We clashed with the administration in their discipline choices, his teacher seemed far more concerned about him meeting Common Core standards than intervening regarding his behaviors, and, to put it bluntly, something in that room seemed to be triggering him.

It didn't help that Zack is the size of a burly fourteen year old. When he gets upset, desks get tipped over and things get thrown. People, unfortunately, get hit. Zack had to be restrained several times last year. As someone who used to work with that population and actually did that kind of restraining, I understood. Abby struggled with it, as a mother, especially. She feared for her son's safety.

Another problem: Zack had begun exhibiting additional symptoms not consistent with strict autism, more in line with ADHD and anxiety. This, it seemed, led to his aggression and anger.  We had him reevaluated over the summer, and now ADHD and Unspecified Anxiety has been added to his diagnosis.

Regardless, less year turned slowly into a nightmare. Our final CSE meeting ended with myself and the principal lighting into each other, and Zack's teacher leaving the room in tears. It was decided Zack would move to the Oak Tree center on campus at BOCES. Despite the fact we believed this to be the best choice, we couldn't help thinking this was a step backward.

However, after a much better, calmer, progressive year, we're in a much different place. Zack still struggles with his anger and obstinate behavior, but this year has shown a progression instead of regression, and unlike last year, we have complete confidence in his teacher and support staff. In an instant of serendipity: his monitor and I worked together nearly seventeen years ago, when we were both aides in an autism intervention program. We are completely confident Zack is in a good hands.

We've also reevaluated our  feelings about Zack's future. We would love it, someday, if he could live semi-independently, perhaps take a few classes at Broome Community College. But we've had to really think what's best for Zack, and realize a completely different standard for "success" needs to be used to measure him.

Zack now visits a counselor twice a month. This has been extremely beneficial, as we try to work through some of his anxieties. He also now takes Concerta, which has made a dramatic effect on his daily behavior. And today, we travel to Kirch so he can be evaluated by a developmental pediatrician. We don't know what to expect, but we're hoping we can add another "team member" to help us guide Zack in his journey. Maybe we won't learn anything new. Maybe we'll hear things we already know. Regardless...when you're a special needs parent, there is no such thing as too many resources.