You always wonder what your child’s first word is going to be. Mom’s always hoping that “mama” is first, dad’s always hoping “dada” is first – and don’t get me started on the extended relatives! But when your child is non-verbal, the reality is you’ll take anything they can muster to say on any level.
For the last 3 years or so we have been hoping to hear more than a breathy “hi” or accidental (what sounds like) “lub you” or “ma” from Gavin. Don’t get me wrong, he can communicate with his body – there is NO denying when he sees someone he knows. Literally his entire body gets in on the process of saying “hi”. He flashes that bright smile, legs start kicking, arms start to push on his stroller – if he could he would propel himself out of his chair towards his intended target. Conversely when he gets upset, the bottom lip comes out, head goes down while his eyes look up (almost puppy dog-ish) and depending on the upset, screaming and crying follow. These are extreme emotions and easy to read. But when he is in need of something or in pain or just wants something, it can be harder to determine. He can eye point to tell us what he wants but if we’re not looking at him or in the same room we miss the sign. And pain? – forget it! Unless it’s something we can feel (i.e. gently squeeze his arm, leg, foot) we’re outta luck. He will make noises to get our attention but even then we can miss what he is telling us. I can’t tell you how frustrating it is to know that he understands me but that a lot of the time I don’t understand him. His body is shouting that something is up and I can’t hear it.
Well last week that changed. Gavin had his first of several communications sessions in Boston. This was a 2 hour intensive assessment. And for the first time, with purposeful intent, Gavin was able to TELL us what he thought!! In response to a question asked by his therapist, he thought the process was going “slow”! Using some super awesome technology, Gavin was able to look at a computer screen that contains two cameras that track his eye movements. On the screen are a slew of different programs with a ridiculous amount of responses/conversations/questions/etc. When he was asked the question, he was able to look at a picture of a snail (with the word underneath it) and respond that he thought the process was “slow”. Using his “talker” he ASKED his therapist how she was doing!? He got to play games, locate specific cartoon characters (with the exception of Barney – we had to say “find the purple dinosaur”) and make computer screen bubbles – ALL WITH HIS EYES! Seriously, technology can be so cool sometimes!
We have known for a long time that Gavin’s receptive vocabulary is off the charts – but when it comes to productive vocabulary we had no idea if he was even ON the charts. For the first time, Gavin was able to interact with us and TELL us what he was thinking. We didn’t have to question him or make assumption – we understood him loud and clear. October 10 was the day that became a game changer in how we communicate with our son. He has a few more intense communications sessions but by the end the hope is to determine what device he will need and put into place a program with set goals.
His therapist was impressed by how quickly he picked up the technology – he is obviously MORE than ready. We will need to pace him, since his eyes will tire out at first (think of when you learned a new instrument in school – until your fingers were used to the placements, they were tired. This is no different.)
Based on how chatty my other two kids are I have a sneaking suspicion that once Gavin is up to speed on how to use this device that he will be just as chatty (please send ear plugs!!) I’m also pretty sure his siblings aren’t going to appreciate this new device as there will be more competition for mom and dad’s attention but I can’t wait to hear how his day went or what he is feeling. I can’t wait to finally have a two-way conversation with my son.
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