For the last twelve months, I’ve not kept up with this blog. In my defense, I had been asked to write a weekly column about Jessie’s life with Angelman Syndrome. I’m amazed that I was able to complete a year but I’m finding, at this stage, I don’t have as much to share as I once did. There was no Facebook when Jess was born and there was no such thing as blogging. There were so many challenges, I wouldn’t have run out of things to say so quickly!
Not until Jess turned 13 did we learn her true diagnosis. Even so, it was another seven years before I found other Angelman parents and realized there was a community, All that time, I felt as though we were forging the road alone. I followed the lead of her teachers and doctors under the belief they knew what to do because they were the experts. I was just an overwhelmed mother who had no idea how to help other than take Jess to any and all therapy that we thought would break the spell.
Long ago I learned about auditory learners, visual learners and people like me who needed to be hands on. Jessie had a smidgen of all the above but not enough of each style for her to make much progress. Couple that with being non-verbal, we had no idea what she was thinking much less understanding. Sure, as a mom, we get pretty good at anticipating needs but this is far from having the ability to read a person’s mind.
To add to Jessie’s complex learning style, there was a complete disconnection with motor planning. Though I could see that she knew what belonged together and what was needed to make something work, she had no ability to get her eyes and hands to work together to make it happen. No one recognized that her depth perception was severely compromised (due to her right eye drifting, it should have been obvious to the trained eye, no pun intended. If you asked her to tap a picture of an apple, she tapped a photo of a puppy instead, it was assumed she hadn’t a clue what you were talking about. Being that hindsight is 20/20, she didn’t have the eye-hand coordination to touch the apple (but touched every picture around it in a perfect circle, yet again, this should have been an obvious clue) and so ended up touching something that interested her.
Oh, how frustrating those “old days” were. However, today is a new day and we have resolved many of the barriers that held her back from learning.
Though Jess isn’t a typical 20-something, we are witnessing her grow into a unique and lovely young woman. Though this isn’t the life I would have chosen, I am grateful for what I’ve learned because of her.
When there isn’t a road, you need to make your own. Don’t fall into the trap and let others predict your child’s fate. For us, we had to break away and go rogue. If something isn’t working, it’s crazy to keep thinking that doing the same thing over and over is going to change the outcome. I know that has been said so many times before but it is so very true.
I wish I could say I’m working daily on her independence, however, my effort is better compared to a roller coaster. There are days we work diligently and then there are days we coast. Twists and turns can be scary, however, more times than not, we find ourselves coasting in at days end with little drama, ready to begin the next day with joyful anticipation.
Though Jess has (and will always have) a long way to go, we are pleased with the progress she has made. She has transitioned to where she helps me more than makes me work. No longer does she resent me for asking more of her and the end result is we both have more freedom to pursue what makes us happy. It’s odd to say but I feel blessed that Jess has been my teacher. Hopefully, she feels the same way.
Sometimes Mama needs rest and sometimes she needs a cocktail but most of all, we moms should not be too hard on ourselves. There’s always more to do than time. Some days we are able to cross out items on the todo list, and other days we find ourselves going nowhere fast. As Scarlett O’Hara said, “Tomorrow is another day”.
It doesn’t matter how long it takes her to get there, she will in her own time.
PS- I don’t really know where “there” is, I can’t see around the bend but as she needs me less, I feel as though we are getting closer to our destination.
