You Don’t Say…
This blog is about how our Angelman Syndrome
(AS), daughter is finding her voice. Jessie is using a brilliant AAC
App called Speak for Yourself
(SFY). Little did we know at the time how SFY would change the path of her life. Communication is the motivator for so many things.
Unfortunately, during the early years, Jessie’s body failed her and seizures were a major interruption. Even though we could see the light was bright in her eyes, we were held at arm’s length due to the effects of Angelman Syndrome.
Her educational path was one long plateau. At the beginning of every school year, I would explain to the new teacher that Jess’s receptive language was good, and to please treat her accordingly. Nearly all of her teachers had the same forced smile, glassy-eyed look when we shared insights about our daughter. By the time Back to School night arrived, the teacher had a completely different demeanor and would excitedly tell us how much Jessie understands! My response was “you don’t say!”.
Why is it that we quickly judge people based on their package? Unfortunately, Jess learned how to manipulate people. She understood how things should work, but she couldn’t get her body to cooperate. She learned it was easier, as well as amusing, to manage people’s expectations of her. At the time, she couldn’t even isolate a finger or say a word. Of course, all of this has changed.
Paperwork, it never ends; Jessie as Snow White and our little cowgirl.
We have been fortunate to find professionals that have taken a personal interest in Jess. We learned that just because she failed at something didn’t mean the door was closed. It just meant we needed to give it time and try again. We also learned that just because you do everything “right” doesn’t mean you get the result you want. The most important thing we learned was to not give up. You can’t find a new path if you start off feeling defeated. Finally, doctors and teachers can only tell you what they presently see. No one could have predicted the path that she is on now. She has a long way to go, but this is a marathon, not a sprint.
Now that you are here and if you want to read a little more, this will take you to some of my favorite posts.