I’m suffering from FOMAM, “fear of making a mistake” disease. I’m afraid this is all too common with parents who have children with complex communication needs. More often than not, we don’t have one issue to decipher, but face multiple problems to solve. When I am overwhelmed, I often feel like a plate spinner, (like this link) moving from issue to issue. Even when I make a decision, I second guess my choice and stop like that person ahead of you in traffic that breaks in the middle of a turn. I hate that. Unfortunately, we live in real time, we don’t have the luxury of stopping.
When Jess aged out of school, we were fortunate to find a program that could support her needs. She was a newbie with her AAC device and only had Speak for Yourself for four months before the school made their exit. Initially, Jess had a buddy work with her to show her the ropes. She made slow, but steady progress under this model. Unfortunately, her support did not last and, she hasn’t found anyone to support her communication needs. This is not the fault of the program. They are not set up to give individual attention, however, they don’t view communication as important as I do and they put more focus on behavior.
I’m new school. I believe communication is the most important thing to focus on. I believe unwanted (or misunderstood) behaviors stem from not being able to communicate. I realize that most people don’t know what an AAC device is much less ever been exposed to a person using one, however, when it comes to these support programs for adults, there is a lot of education that needs to be done. Thank goodness there are many young families that are spreading the word and raising awareness. Hopefully they will have an easier time.
As a parent of an AAC user, I understand why people don’t understand how it works. Whenever I give an overview of SFY to someone who will be working with Jess, they give me that deer in the headlight look until they understand the mechanics. In order to support Jess, they need to stop, listen and wait for her to form her words. My goodness, it’s hard enough to get people to do this amongst those who are verbal!
So here I am at the crossroads. It’s with great trepidation to move Jess from a program that had been successful to one that takes a different approach. Where one focuses on work and social skills, the other focuses primarily on social skills, will introduce her to different work situations and is willing to have their staff trained to learn SFY. It’s a myth that baby birds are pushed out of the nest by their parents, however, this is exactly what I’m doing with Jess. With change comes risk. If she doesn’t fly, there is no plan B, at least not at this moment.
Jess just got off the van… her AAC device was in her backpack. Even though I’ve requested repeatedly that she needs to have her AAC at all times that by putting her AAC in her backpack is like parking a wheel chair in the garage, they simply don’t get it. When Jess uses her device, listening to her is similar to adjusting your ear to a person that has an accent. It takes a little while to develop the ear to understand what she is trying to express. At home, she is pretty specific, but with people she doesn’t know, she tends to ramble with her thoughts. For now, I expect that until Jess uses her AAC voice effectively, I will be the one leading the charge, however, I have faith that one day, she will speak for herself.