For us, our biggest problem wasn’t the laundry list of issues that came with Angelman Syndrome, it’s doubts. Doubt undermines everything. There were years where Jess would attempt to work a simple shape toy, but even this was too difficult. Confidence erodes when you try and try and try again, only to not gain any ground. Complicating matters, Jess has complex communication needs, she couldn’t isolate a finger to point to a picture in a book, nor could she identify a body part on herself. What kept us going was we sensed that she understood everything we said. This made us question everything we were seeing.
The longer it took Jess to meet her milestones, the more anxious I became. Even now, when she uses her AAC, I watch her too closely. The days she doesn’t talk much, doubt creeps in and I wonder if she will ever build long sentences. Then there are days like today. We went to the bank and she used SFY to ask the teller to cash her checks and then she told the teller she wanted to purchase Play-doh*, go to Burger King and get ice cream. As far as Jess is concerned, these topics are all social pleasantries.
Just as no one can predict which grade-school classmates would not graduate from high school, or succeed in college, we can’t predict how far our AS children will go. We can’t rely on what we think we see, and we can’t rely on standardized tests either.
When my brother was in seventh grade, he had taken a series of tests to determine if he was college material. They suggested another path. When he was a senior, his guidance counselor advised him not to apply to college and based this on the tests taken years earlier. Either the 7th-grade tests didn’t match his learning style, or his hard work altered his course. Contrary to what had been predicted, my brother was an honors student and played varsity sports. To make a long story short, my brother did apply to colleges, was accepted at the school of his choice (Rutgers) and graduated second in his class. He then earned an MBA at Columbia University. His education led him to a successful career and early retirement.
For goodness sake, he ended up at an Ivy League school? Obviously, the testing was erroneous and it didn’t factor in his desire to succeed. This story about my brother reminds me that no one ever knows their path. This is what we need to keep in mind as we navigate this unpredictable road towards independence.
While Jess was in school, I thought the time was our enemy. I felt we were playing “Beat the Clock”. In hindsight, I should not have allowed this to be my emotional barometer. There was no need to be frantic. Jess was going to progress at her own speed. I could not will her to learn at a different pace than she was able, but I didn’t realize this at the time. Not until the framework for skill-building was set in place, combined with her emerging communication, did Jess show significant growth in all areas. When I look at photos taken a year ago, I can see Jess’s confidence and maturity. There still are days we battle doubt, but it does not have the same hold over us.
So many changes have occurred over the last couple of years. We celebrated last Friday night at a Gala for the organization that provides supports to Jess. There was a time the loud music would have made her shut down. However, now she accepts the volume, as well as enjoyed people watching like it was a sport. We made our way to the dining room, found our table and Jess set up her AAC device in front of her place setting. Before dinner was served, she leaned over and touched the arm of the woman seated next to her and the response directed to me was, “it’s ok, I have a five-year-old”. I’m sure this woman had no idea how this sounded, or that speaking in front of Jess as if she weren’t there was inappropriate. All I can say is Jess’s demeanor is deceiving. She’s more like an old dog that acts like a puppy than a five-year-old.
Jess has come a long way in a short period of time. We have no idea how far she will go, but I do know one thing, there is no doubt in my mind that she will continue to become more independent.
* Play-doh is not just a toy, it meets Jessie’s sensory needs
PS- I’ve come to the conclusion that standardized testing is about as useful as taking a Facebook quiz like: “Which Thanksgiving side dish are you?” Happy Thanksgiving!