Sitting in my living room, I watched my son slumped on to the couch like a ball of slime. No strength, not the usual hyperactivity, not the random sounds he makes, just silence, dotted with a few groans of discomfort and some whimpers. As I watched him, I wondered how it must be to not be able to tell what hurts. Here is this little boy, lying listless, probably wanting to tell me what’s going on with him but has no way to, so he just lies there and gives out little cries to let the pain out. I watch helplessly. This is not the first time and this will not be the last time. Everytime I keep guessing if it’s a headache, nausea, stomach ache, sore throat, exhaustion or none of it and he is just plain cranky. I cover my helplessness up with a Tylenol. Everytime !  If there is one time that I really miss words and wish for it more than ever it’s when my son is sick. To sit and watch him feel miserable and not know what it is that I can do to relieve him is a feeling hard to explain. I hug him tight and tell him unconvincingly that it’s going to be ok, not knowing what exactly it is that I’m hoping would be ok.

When he has a meltdown and everyone is branding him as aggressive or “difficult” or having a lot of behaviors, that’s when I wish with all my might that he had words. I wish he had the words to explain himself and tell those around him the reason for his frustration. Instead of having the ability to tell people that he is not ready for a task yet, he is overwhelmed, he needs a break, he is emotionally at the threshold or that his sensory systems have gone on an overdrive, he uses what he has to communicate- his body, instead of his words. When words are missing from an expression, not many have the ability to listen. It makes it difficult, very difficult to be understood in a world that thrives on words.

When people are talking to him like he is a 6-month-old, I wish he could stop them and tell them that though it might not look but he is smart enough to understand more than that. His words fail him so many times and he fails to tell the world his story because stories without words are hard to comprehend.

Occasionally when a certain kid catches my son’s interest and there is this eagerness in my son to make friends with him, he will get really close, sometimes uncomfortably close to the unsuspecting child’s face. As expected, the child can get startled, and if the parents are around, they get protective. While my son watches all confused, his prospective friend walks away, probably not wishing to have another encounter with my son. In these moments, I wish my son had a few words so that he could make friends; so that other kids didn’t squirm when approached by him; so that he was not as lonely and friendless as he is.

We, as a family, have settled into the relative soundlessness of our home. The absence of non-stop kids questions, or endless chatter does not bother us so much anymore. We have stopped overhyping words. However, sometimes it hurts to watch how not having words can change my son’s life experiences for the worse. How the sounds that he cannot make put him at a major disadvantage. They say words don’t matter, they don’t anymore for us, most of the time, but some days, all I want for my son is for him to have his voice, just to take away that nagging feeling of helplessness, just so he can be accepted and understood better. Sometimes this soundlessness is deafening and I want to shut it off.