Friday, July 18, 2008

Autism Adventure: Part VI

It was fitting that our autism adventure would bring us to Chicago. Marc and I were both born in the suburbs -- in fact, Ryne's school was just minutes away from the home I spent the first three years of my life. Both Marc and I moved away from the Chicagoland area as young children, but we both grew up with a great sense of pride in our first home. So when Marc accepted his first job out of college in Chicago, we were both thrilled. It would be another year-and-a-half before we were married and I joined him in the windy city, but we had a ball as a young couple living in a tiny loft a mile west of Wrigley Field. We only lived in Chicago for a couple of years, but I think we always felt like we'd be back again someday.

When we arrived for our first meeting at Ryne's new school, we were a little shocked to find that Ryne was one of only two students in the school. I had a quick moment of panic, thinking we had made a big mistake, but as we met the staff my fears quickly subsided. We really had an amazing opportunity being one of the first families in this school. How many home ABA programs have more than enough qualified therapists and a certified consultant on-site? While the school was certainly expensive (about the cost of a year at Harvard at the time) it was a bargain compared to what many Chicago area parents were paying for a home program. It was more than we had been paying for our home program at the blue house, but we had only been seeing our consultant about 4-6 hours a month. Now we seemed to have almost unlimited access.

Ryne adapted very quickly to his school. He had awesome therapists who genuinely loved him and loved working with him. The school itself was not very big, but very cheerful looking without being overly stimulating. Word about the school quickly spread. More students were added in the fall and continued to be added over the next couple of years.

Having a consultant on-site turned out to be a huge factor in Ryne's success. He was a quick learner, so his programs needed updating quickly, which is often difficult when you're having to communicate with a consultant by phone or email. It also allowed staff to work together more effectively. Instead of communicating through written notes over days at a time, a therapist could walk ten feet to the next therapist to discuss something.

As with most ABA-VB programs we used the ABLLS to guide and track our programming. This is what the language portion of his tracking sheet looked like his first year or so at the school.

The gray portions are what skills he had when he started at the school (June 2003), and the colored portions are the skills he learned by October 2004. As I mentioned before, he had quite an extensive vocabulary before he started at the school. This is reflected in the "Receptive Language" column (red arrow). If I asked him to get the cup off the table he understood the command and could even say cup and table. But if we pointed to Anna and said, "Who is this?" he could not answer. That is reflected in the "Labeling" column (orange arrow). "Intraverbals" were severely lacking (blue arrow). Intrarverbal behavior is what enables a child to have a conversation, so that was our primary focus with Ryne over the next two years. An example of something we started with was, "Who's your sister?"

Gradually Ryne gained more and more language. When he started at the school he would have just said, "Cracker," as a request, but he eventually was able to say, "Momma, can I have the square crackers, please?" Within a year he would see his little sister crying and spontaneously make comments like, "Gracie is sad because she is tired." And by the end of year two he was asking people questions (unprompted)and then responding appropriately -- for example, he'd ask someone when their birthday was and then tell them his birthday.

We also worked on things like potty training (within our first month at the school he was diaper free during the day), fine and gross motor skills, play skills, social interaction, and group instruction. The majority of his day was one-on-one instruction with a therapist. But the day would be broken up with short "circle times" with the other students. Here's a clip of him singing some of the songs he learned at circle time.

Ryne became a whole new kid while he was at this school. As his language developed, so did his social skills. He was interacting with his family more and more, especially his sisters. He developed some sweet friendships with a few of the kids at his school. He was approaching kids at the park and actually playing with them. He was doing well in a regular Sunday School class with the help of an aide. Toward the end of the second year he went to summer camp and a gymnastics class with the help of aides and did great. Tantrums became less and less frequent. We no longer had to lock bedroom doors at night to make sure he didn't wander off or keep a death-lock on his wrist any time we went out in public to keep him from running off. He slept in a bed, sharing a room with his older sister, instead of collapsing on the floor after pacing his room for an hour. He started swallowing pills on his own (we tried for a year to get him to do this, but it only took his therapists one day), which enabled us to start on a biomedical program again.

At the end of two years at the school, it was clear he was ready to attend a regular kindergarten classroom. But it would not be in Chicago. A lot had happened to our family outside of our autism adventure during our two years in Chicago, including the blue house never selling. Marc was offered a promotion with his current company back where the blue house was, so we said good-bye again to Chicago. One of the hardest things I've ever done was picking Ryne up from his school on that last day. He loved it there (so much so that for the next year he would say he wanted to go back to Chicago and go to his old school). I was in tears, and so was the staff. As I was about to buckle him into his car seat, a car rushed into the parking lot. Out jumped one his therapists, tears streaming down her face. It was not her scheduled day to work at the school, but she just had to say good-bye to Ryne. That was the kind of experience we had at this school.

So why haven't I included a link to the school? Sadly, it doesn't exist anymore. It's not easy operating a school. The business side of running the school apparently got to be too difficult, which led to the school closing. But a new school rose out of it's ashes, run by two of the ladies who had worked so closely with Ryne. The new school is in a better location, has much better facilities, and has an incredible staff. We visit quite often, and I'm just amazed at the things they are doing there.

The more famous Sinatra tune about this great city says, Chicago is one town that won't let you down, and it certainly did not let Ryne down. We will be forever grateful for the blessings God gave Ryne during those two years.

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