Friday afternoon I ran into a woman and her little boy, 4 1/2 years old, just like my little Henry, 4 1/2. Her son was excited to see Henry because he saw Henry’s two bright blue hearing aids. This little boy, we’ll call him John, wears one. He has normal hearing in his right ear.
It’s amazing how much you can learn about a stranger in a five minute conversation. This woman and I have vastly different views on a number of things, from cochlear implants and hearing aids, to the school systems, to the way we view our boys. Because her boy has normal hearing in one ear, our situations are different, but it is always good to meet a mother who know a little about hearing loss and the struggles associated with it.
We got on the subject of FM systems (which are basically microphones that a teacher or other adult will wear to pipe sound directly into the hearing aid), an accomodation which is commonly used for hard of hearing children in our county schools. I told her that the school provides them for the children to use, and that she could have it written into John’s IEP when he enters school.
Because John didn’t qualify for services, she didn’t think he would have an IEP. I told her that my Henry also had age-appropriate speech and language comprehension now, but that he qualifies for services simply due to the fact that he has a disability.
“You see, I don’t think of John that way” she said. And though I know she was not trying to be hurtful, for some reason it felt like an insult…that I had just used a dirty word to describe my son. That the term ‘disabled’ meant the equivalent of damaged goods. She approached me because we had something in common, but it seemed now like she was trying to put some space between us, because we were not the same. Because her son does not wear the disability label that mine does.
It reminded me of myself when Henry was first diagnosed as hard of hearing, and how I couldn’t wrap my arms around the idea that he was disabled. We lived for two years thinking he had not a problem in the world, and then all of a sudden we find that we have a hard of hearing child. Even still, it is hard to think of him in those terms. Because on a day to day basis, if you’re watching from the outside, he is just like all the other boys.
I remember thinking that my son was hard of hearing, but didn’t have a disability. I didn’t want to admit it. I didn’t want to accept all the ways that raising a child with a disability would change my life. I didn’t know anyone with a child with a disability. I didn’t know anything about this club, and I didn’t want a membership. I wanted what everyone else had. I wanted “normal.” I had just been through months of struggle with my first son, and wasn’t ready for another struggle, let alone a lifelong struggle. So I tried to deny, for a while, that I would have to deal with it.
I remember listening to his speech grow, his comprehension increase, and thinking he’ll be just fine, you wait and see. And yes, he is just fine. But he still needs help, accomodations, repetition, focus.
I remember that every time he mastered a task, another larger, more complicated task lay ahead.
And I slowly began to realize that this hard of hearing business was more than something that we could just work hard on and conquer. It was something that we would live with, that he would live with, forever.
And as he gets older, I continue to grow in understanding the disadvantage he is at when compared to other children.
I understand that he doesn’t pick up the incidental language near as much as my other children did…he needs to be deliberatly taught. And he needs repetition.
I understand that the complexities of the English language will trip him up as he gets older.
But I also understand that he is smart, and that he will make it.
He will be just fine.
But he’s going to have to work.
Because he does have a disability.
I can say that now, and believe it, and love that about my Henry. And I embrace this club I’m in. And how dearly I love it’s members.