My sweet husband Andy reads each of my weekly posts. After reading last month’s post “So Many Questions,” which was written about the challenges our family had been experiencing trying to obtain an updated and medically appropriate speech device for our son (whose current device has been malfunctioning for nearly a year now), he noted that he knew I had done my best to explain a very complicated issue in one post, but he was worried that many of our readers wouldn’t understand exactly what I was talking about. I find that the above media alert by the Autism Society of Greater Phoenix may make this matter more clear.

We spent seven months alone filing an appeal, filing grievances, and doing everything we could trying to obtain a medically necessary reevaluation for an updated AAC device. After finally being able to receive those evaluation services, two months after the recommendations were submitted to DDD, we still await a response. While we have not sought representation from the ACDL at this time, we may choose to do so if we too receive a denial letter.

Today is February 1st, the deadline for a response from the Division to the ACDL. Like all of the families effected by this, I wait. And I remember what it was like before we were able to start PECS (Picture Exchange Communication System) with Tony, and before he got an AAC device. Hours of meltdowns a day because he was verbally unable to tell us what he wanted. Hours.

I have lost track of all of the things Tony has independently asked for this day alone on his device- a bath, going somewhere else, ice cream, needing to use the bathroom, suckers, tons of different food and TV items….as I’m editing this, he literally just asked for Cars 2. He may not “test well” for many things at this time, but he is full of his own personality and he certainly knows what he wants and thanks to augmentative communication, he’s able to ask for it instead of screaming and smacking his head on the wall in frustration.

I said it last month and I will say it again. In my opinion, whatever policy change is making this process harder for families needs to be reevaluated and fixed, and clearly the ACDL agrees and has become involved for other families. We still remain hopeful we won’t have to walk down that road, but for now, we continue to wait.

*Please note, if you are a weekly visitor to our blog familiar with my posting habits, this is not my main weekly post, so feel free to keep on reading if you have the time… <3 Ariana