This all sounds pretty typical, right? The truth is that Stephen really isn’t all that typical when it comes to managing his education. At 17 months old, our precious first-born son was diagnosed with a very rare genetic disorder called Rubinstein-Taybi Syndrome, which affects his gross and fine motor skills, cognitive abilities, and has caused him to be functionally non-verbal.
Much of our preparation revolves around his use of AAC, more specifically, his use of Proloquo2Go to communicate. Stephen has some signs, many of which he has modified to adapt for his fine motor challenges. He has been using Proloquo2Go for 3.5 years now, and we have learned quite a lot about how to prepare for school with that in mind. So, without further ado, here are what I believe are some helpful tips to help other parents who are in a similar position.
Ask for a team meeting before the school year starts and additional meetings throughout the school year
Rather than waiting until your annual plan meeting, go ahead and schedule one early, before the school year starts. And if you want, go ahead and schedule a few more throughout the school year, just to check in. For us, communication is our biggest challenge, so I like to check in and see how everything as going multiple times during the school year. In the initial year of AAC use I had assumed, naively, that everything would just happen and I would program everything, and it would get implemented. Now, of course, I know better, so we have meetings prior to each school year to set out our expectations for how Stephen’s “talker” will be used during the course of the day. This is also a good opportunity to go over any changes that have been made that might affect communication.
Visit the classroom
This is important for all children, but particularly for children who rely on alternative communication methods. There may be classroom-related vocabulary that needs introduction (perhaps learning some new signs, or new PECS pages, or new vocabulary added to a speech device), and if there are other disabilities present, ensuring that the classroom environment will be safe, or determining if there are any physical accommodations that need to be made. I realize this specific suggestion isn’t AAC-specific, but the classroom environment isn’t always set up for children with disabilities.
Involve your child, if it’s appropriate
While this is not our first year having Stephen in a team meeting, previous meetings have found us encountering negativity about our presumption of his competence. We are hoping that this year will be better, and have already informed the team that he will be attending. This year, we have been collaborating on a Pictello story with Stephen that will allow him to tell his team all about himself, and let them know the things that he thinks are important. So far, he has determined that they need to know that he loves candy and running, and that he is a good swimmer.