I am the mother of a disabled child.
It took me years to openly say this.
Monster has a bi-lateral mild-to-moderate sensorineural hearing loss. He was born with this disability.
His hearing was tested at birth through the Infant Hearing Program. A lovely volunteer inserted a foam earplug in his ear, which produced sounds. The ear’s response to these sounds were recorded and he was given a ‘refer’ result.
Peanut’s hearing test had been a “pass” right off the bat, so of course I was a bit concerned.
The volunteer shrugged it off with phrases like “quick delivery”, “possible fluid in the ear”, and I was told to wait a few days and take him to the local Health Unit to have him re-tested.
A week later, I’m bundling up my wee babe, along with my nearly 2 year old and heading off to the Health Unit for a re-test. While Peanut played quietly in the corner, we had an instant reply of what had happened in the hospital. Foam plug in ear, quizzical look on her face, repeat test 2 times.
Then comes the questions:
“Was he delivered by c-section? (apparently fluid can stay in their ears longer because of less compression on the head during delivery)
“Does your family have any history of hearing loss?” Do my practically deaf Grandparents count? (I think that’s more for survival than anything…)
“Did you drink during your pregnancy?”
Ok, now I’m starting to take this personally. You’re telling me there’s something wrong with my baby and now you’re trying to blame me?!?! (yes, I got a bit defensive over that one.)
I was referred to an children’s audiology specialist.
Tests, tests, tests, questions, questions, questions…. blah blah blah “your son will have to wear hearing aids” blah blah blah
I’m sorry, I don’t think I heard you properly?
And that, my friends, is when depression set in. I’m sure that was the moment, because I felt my heart drop at those words. Also? I was not about to admit that there was anything wrong with my child. Wouldn’t that mean I had been a bad mother? I had already spent the last 6 weeks scouring my memory for anything bad that I might have done during my pregnancy… those few glasses of wine before I knew I was pregnant?
There’s something wrong with my child. I’m a bad mother.
So, at 6 weeks old, my little Monster was diagnosed with his hearing loss and the wheels were set in motion to get him his first pair of hearing aids. The world becomes a bit of a blur.
Now, I should explain that I grew up in a very small community and only ever knew one child that had hearing aids, and that was in public school many many years ago – and he was nearly deaf.
Being that my exposure to this sort of disability has been somewhat sheltered, I tended to ask a lot of apparently stupid questions like:
Will his hearing get any better?
Will he always have to wear his hearing aids?
Is there some sort of surgery to help him?
To which I got many eye rolls and gentle, condescending pats on the hand “No, dear. His hearing will never improve and yes, he will always need hearing aids. His hearing loss isn’t severe enough for a cochlear implant, so no, there is no surgery that can help him. His ears just didn’t form properly, I guess. Unless it was something during pregnancy.”
Again the accusatory comment.
Again, that stab of guilt at a young mother that has just learned that her child isn’t “normal”.
To top it all off, as I left one of the multitude of appointments that I had to take Monster to, I happened to see on a comment sheet that someone had written that “Mom is very difficult and will not accept the diagnosis”. I’ve never wanted to tell someone to go Eff themselves more than I did that day.
Excuse me if I have a lot of questions.
Excuse me if I worry that I did something wrong – but thanks for the reassurance that it is probably just hereditary.
Excuse me if I’m a bit overwhelmed at the thought of my little boy not being able to just have a spontaneous life. I want him to be able to run through the sprinklers AND hear his friends all at the same time. I want him to be able to play in the rain. I want him to be able to put in earphones and listen to music, not depend on an FM system and boots.
I JUST WANT A NORMAL CHILDHOOD FOR HIM.
So I spoke up. Which is not like me in these sort of situations. Really.
I spoke up and said “You know what? I think I’m well within my effing rights to want a normal childhood for my 2 month old baby. I don’t appreciate being called difficult, just because I have a lot of questions. And by the way, if I refused to accept the diagnosis, WOULD I BE HERE GETTING HIM HEARING AIDS???”
GAWD I hate people sometimes.
I’m a good mother.