Patty Heine has a son who uses AAC and she has been learning how to best prepare for a successful school year. In this guest blog, originally published on assistiveware.com, Patty shares several tips that other parents will find helpful.
This past summer we ramped up our preparations for Stephen to start the 2nd grade. We’ve been spending some time this summer reviewing math lessons and spelling words from 1st grade, preparing for more strenuous curriculum in 2nd.
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.
- Train. This might seem obvious, but make sure your team understands how to assist a student who is an emerging AAC communicator. This past school year, Stephen was assigned a paraprofessional for assistance during his inclusion time, and she had almost no experience with technology. The teacher said on multiple occasions that they were trying to get her to a training session of some sort for AAC support, but after a few weeks, the paraprofessional was as frustrated as we were, so we just took matters into our own hands, and had her over for a training session. I was able to show her where to find the vocabulary that Stephen was most likely to need modeled during class, as well as show her how to program buttons in situations where he might need vocabulary that wasn’t already programmed. So my advice to other parents is that you shouldn’t be afraid to take matters into your own hands if someone who is working with your child is receptive.
- Program. Again, this may seem obvious, but if you (the parent) are the primary person programming the device, try to have all of that vocabulary on hand and programmed/prepared before the first day of school. While I don’t anticipate I’ll be able to pre-program for the entire school year, or even the first semester, I’m hoping to be able to do enough to get him through the first month at least. If the speech therapist is the one responsible to programming, encourage them to have everything ready for the first day as well. And, of course, make sure you back up your programming to the computer or Dropbox if applicable. I do all of the programming for Stephen’s device, and back it up to my computer and then send in a small flash drive to school whenever I’ve made changes, and it gets moved onto the iPad that they use at school as soon as he gets there.
- Remember that you are part of a team. In the past, I’ve approached the school year with a feeling of dread, wondering, “how am I going to convince them to do what I feel is best for my kid?” But this is really the wrong way to look at it. I’m not saying that there aren’t teachers/schools/speech therapists who aren’t doing what they need to for our kids, but most have the best interests of our children at heart and sometimes needs to remember that we do to. I’ve found that approaching the situation with an open mind and an open heart can really go a long way.
I know it seems like a lot, but the truth is that no professional is going to be as invested in the communication of our children as we are, so we have to do a little more to prepare for each new school year. Hopefully some of these tips will help smooth the transition into a new school year with AAC, and good luck to us all!
~ Patty Heine