Wednesday, 3 August 2011

Thanks, but shut up.

I know that a few of you that read my blog have deaf children. I also know that most of you don't. Which means that most of you have NO IDEA what it feels like. I don't pretend to understand what it is like to have a physically disabled child, a downs syndrome child, an autistic child or a normal child. All I know is a child with a partial hearing loss.

And as a parent of a child with a partial hearing loss there are some things I do not want to hear (awkward phrasing I know).

  1. If I had a choice between being deaf and being blind, I'd choose deaf.
    • It's not a game. The point is he didn't get a choice. It's not like you have to have a disability and you get to choose. It's not any less sad because he isn't blind. He could have been normal. He could have been healthy.
  2. He'll grow out of it
    • No, no, no he won't. Unless I have explicitly explained what is wrong with him to you or you have independently researched dilated vestibular aqueducts, don't offer me hope, just shut up.
  3. Be positive
    • I AM POSITIVE. I can see the best case scenario. I know that we are lucky he doesn't have a more serious condition. I know we are lucky to have him at all. I spend my days laughing a smiling and marvelling at how wonderful he is. But that doesn't make him any less deaf and it doesn't make me any less heartbroken. And I am entitled to be sad about it every now and then.
  4. If you're worried about him being bullied, just teach him to fight.
    • Seriously?! I have two points to make here
      • Just because he is more likely to be bullied because he wears hearing aids doesn't mean that I am going to bring him up to be a bully or a thug.
      • If he hits his head (or someone else hits it) he will lose his hearing altogether - back to point 2 - if you don't know the full story, don't offer an opinion. Please.
  5. He doesn't need to learn sign language if he wears his hearing aids he will learn to talk
    • It's not a black and white problem. Deaf kid + hearing aids = hearing kid. I wish. The sounds he hears through his hearing aids aren't the same as the sound we hear and he still needs to learn to listen (not hear, listen) in order to pick up language. And there is the issue that he won't always wear his hearing aids. And more to the point it's our choice to learn and teach sign language - not yours.
  6. You shouldn't feel guilty - you are raising a gorgeous, smart, talented, funny, wonderful little boy.
    • I know. I don't feel guilty because he is not any of those things. I am proud of my son and everything he is, even his bad points (mainly because they are clearly from me! dramatic temper tantrum anyone?) I feel guilty because he is deaf.
The feeling I have most frequently and most strongly when talking to other people about Will's hearing is 'you just don't get it'. Because you don't. And that doesn't mean that you don't care, I get that. Or that you don't want to get it, you do. But you never will. So the best thing to do is ask questions. Ask how we are all getting along, how the hospital appointments have been, when the next one is. Ask about schools, playgroup, hearing aids, speech. But don't try and make it better because you can't. And you will just end up on one of my grumpy ranting blogs like this one.


  1. GOD I hate "you shouldn't feel guilty" or "don't feel guilty" or any other version of somebody telling me that what I'm feeling is wrong. It's what I'm feeling! Don't tell me I'm wrong for feeling it, things are hard enough without your guilt trips!

  2. EXACTLY!! Don't guilt trip me for feeling guilty!