My son recently acquired his very own eye-gaze communication device. We have always known that he is incredibly sharp. He is funny, friendly, caring, and smart. Having this device has given us an even greater window into his incredible mind and heart.
It has been a pure delight watching him use this device as a megaphone for the voice we knew he already had. However, many people have seen it as a change in his worth. It is as if now that he is “verbal” he is worthy of being acknowledged, spoken too, and included. Honestly, it’s been disheartening to see the switch that has taken place in people’s perception simply because he gained new equipment.
Those who used to ignore him because they “didn’t know if he was cognitively aware” are now willing to consider that he might be a human being with thoughts and feelings.
The thing is, his awareness was quite obvious before he ever had the device, as he has multiple other means of communication. Simply put, people didn’t see worth in putting forth the effort to get to know my son.
Now that he has a device they are intrigued by the technology and the fact that this precious boy might have thoughts and opinions to voice. But those who took the time to truly know my boy before he had the device speak to him the same way now as they did before. They already knew how amazing he was and now they get to hear him a little louder. They chose to see him and hear him regardless of what technology he did or didn’t have.
I must admit, I love that my son can now show off his cognition more boldly.
He has been telling friends, family, therapists, nurses, and anyone else he runs into all kinds of things. He has been advocating for himself. He frequently says “I can understand everything you say” or turns the volume louder when people continue to ignore him. He tells knock-knock jokes and requests certain people and activities. He also refuses to speak to a number of people. At first, this was frustrating to me because the people he refuses to speak with are the very ones who seem to need spoken proof of his intelligence.
Since having his device, when those who ignored him in the past try to speak to him now, my son will say “bye” or “I don’t want to talk right now” or simply power off his device. My frustration with these instances didn’t last long. I quickly realized that my boy is so in tune with others that he can tell who has changed simply because he has a device. He knows he has nothing to prove to them. He knows he shouldn’t have to earn his worth or his preciousness as a human. He couldn’t be more correct.