Last night, when we went into Eddie’s room to say goodnight, we found him sitting on the edge of his bed with his lower lip sticking out and giant tears quietly sliding down his face. We sat down on either side of him, but his continued silence and steady crying gave us no answers. Eddie is 12, and he still can’t tell us what’s wrong. He still can’t say if he’s hurt, why he’s sad, or if we can help him.
As I’ve shared hundreds of times, Eddie is blind, but he’s also autistic. He lacks most expressive language and what he says is often a repetition of something he’s heard, which is called echolalia. Most days, we can find out what he wants or needs through a series of well-versed questions. Other days, his bank of scripted responses is empty and frustration kicks in for all.
All parents experience these feelings before their children learn to talk. They know what it’s like to stay up all night with a crying baby and not be able to figure out what’s wrong. They know the feeling of inadequacy as they may call their friends, family, or pediatrician. What all parents don’t know is that for some of us those experiences carry on for months, years, and sometimes for a lifetime.
Communication struggles, to me, feel like the greatest barrier for Eddie. Without a way to express himself, he cannot share what he knows and what he doesn’t. He can’t share what he loves or what he hates. He cannot even verbally share affection for those in his life… like me. Instead, we’re limited to body language, memorized phrases, and the occasional unscripted breakthrough. These things are all helpful, but they keep his repertoire small.
I’d love to give him a way to express more with us and the world. Some kids with communication needs use systems with pictures or words and some use iPads with communication apps. Many communication systems that are even slightly complex require sight to access. Braille can make them more accessible, but Eddie only knows a handful of braille. So, what do we do for our kids? What do we do for Eddie?
We have used tactile symbols and objects in the past and a few braille key words with success. Now, we want to add more, we want to give him as much access to communication as possible, and we are creating systems ourselves. Even though I don’t know if our latest homemade creation will be successful, we have to try. Without access to communication, Eddie can’t fully speak up for himself… and everyone needs a voice.
So, we carry on and collaborate with speech/language pathologists, teachers of students with visual impairments, and anybody else who takes an interest in Eddie and in his future. Although the frustration can be overwhelming for us, it’s always worse for Eddie. I know that we will find a way to give him a voice, and then, we won’t have to spend any more nights wondering what’s wrong because he will simply tell us.