We experienced every possible reason, no, I need to say, every possible excuse as to why our daughter could not use a high-tech AAC device. Today’s post by Speak for yourself sounds like our story. What I want to emphasize is “your child is never too old to learn”. You may have to change their way of thinking. You will have to change your way of thinking too.
During the seizure years, Jess learned at a very slow rate. It was very difficult to watch her peers reach milestones, much less watch younger children do all the things she couldn’t with ease.
When Jess moved to the high school, her seizures lessened. The side effects of the meds were more invasive than the seizures, so we decided to take her off the meds. Our neurologist saw the logic in this and advised for us to contact him if her condition worsened. It is now five years later, she is still off meds. It should be noted that when she gets sick, we do see an increase in the absence seizures (only when she was very young did we see tonic, atonic and complex partial) and she becomes very confused. Just last week, in fact, she had a stomach virus. It wouldn’t have mattered if she were on meds or not because they would have come up anyway.
Even though the seizures had diminished, we were now left with the damage. In all intents and purposes, Jess had been stuck in a developmental delay. The seizures interrupted her development. She was so highly distractible, it was difficult to know what she had learned. All we could see was her inability to attend to a task.
If we only knew then what we knew now, we might not have been stuck on this plateau for as long as we had been.
We had two game changers that altered our course. First, when we moved Jess to the OTC, they had a more effective behavior modification system than the school. Jess needed to have consequences and be held accountable. The director of this program also believed in raising the bar, something that had rarely been done in our traditional school setting. Second, we found an AAC app, Speak for Yourself (SFY). Up until now, she had no means of communication. Jess spoke “Jessie”. This worked for our family, but like sign language, most people don’t know it.
Jess’s behavioral issues were roadblocks. The ability to communicate is the key to unlock the doors. Without being able to speak for yourself, how can anyone grow? To complete the circle of learning, information needs to be shared, back and forth. Fortunately, even though Jess had no output, she did have ability to take information in.
A behavioral modification plan (and I’m not referring to a rigid hardcore plan) was put in place for Jessie, but we had to be retrained too. My husband and I also needed to be rebooted for this new emerging version of Jessie 2.0. We had been stuck in the same pattern for years. It would be an understatement to say that things got worse before they got better. Jessie fought us with every fiber of her being. She was familiar with how she manipulated her environment, and she didn’t want to change.
As Jess’s ability to communicate increased, the negative behaviors dissipated. Up until now, Jess had done everything her way on her time schedule. Change is frightening, especially when you believe there is only one way to do something. However, as Jess gave up her control, she stopped fighting us.
She had been told “no you can’t” all these years and now we had the supports that not only believed in her but showed her “yes you can!”.
Technology is changing at an exponential pace, to a lesser degree, as is what we are understanding about cognitive learning. Don’t be afraid to push back and ask why not!
PS- Within two years of implementing a non-traditional behavior mod, and giving her SFY, Jess went from the abilities of a toddler to a young woman that is learning what it is like to be her age. We believe the best is yet to come!