Raising a child with hearing loss has changed me as a parent. Out of necessity I have become an advocate for my son. While I am also engaged in the life of my daughter (who has typical hearing) it does not have the same level of attentiveness associated with it. I am on the lookout for my son – to make sure that he has access to the language he needs to learn at school; to hear the instructions that his hockey coach shouts to the players; to understand the giggles his friends share on the playground.
But as he gets older I also need to remember when it is time for me to pull back. It is his hearing loss after all, and he is the one that needs to learn how to live with it, I can’t live his experiences for him.
It is a fine line between over-protecting and advocacy when you have a child with special needs. So with the new school year still fresh on our minds I make the following pledges to my son so he may begin to take ownership of his hearing loss.
- Give Him the Language: My son is good at telling people what “those things on his ear are” and what they do. Beyond that he doesn’t know much about his hearing loss. Greater understanding not only will make him feel more comfortable, but it will also help when people make comments like “I thought only old people wore hearing aids”, or “Hearing aids are for dumb people”. A great resource we have started to use is Knowledge is Power. It’s a program designed to help children understand their hearing loss.
- Let Him Speak Up: I have a bad habit of translating for my son. Mainly I do this when we are around strangers or around someone that isn’t that used to him. It grew out of my desire to facilitate his communication with others – I wanted him to feel like he was connecting and conversing with other people. Only now the time has come to stop. He needs to learn how to navigate a conversation. What to do if he can’t understand someone and what to do if they can’t understand him. Depending on the situation I try not to engage that much with the other person. Someday my son will go into a restaurant or a store by himself and the staff will have to figure out what he wants. He is learning that he needs to pay attention to what he is saying, that he needs to make eye contact, to speak up and to be polite about it. It’s a work in progress.
- Let Him Decide How to Wear His Hearing Loss: My son is 6 – so far it has been gray hearing aids and clear ear molds – sometimes he puts on stickers. But, as he gets older there are some other decisions that he will be able to make – Colored ear molds? Colored hearing aids? Longer hair? Baseball hat, or not?
- How to Share His Hearing Loss: As a former teacher I have always respected the space my son has at school as his own. While there is a part of me that wants to rush in and read the class a book about hearing loss and lead a discussion, I also know that’s not my son’s style. Last year his teacher briefly spoke about his hearing aids and how they worked with the FM. This year (new school district) his idea is to work on a book of his own story that he can present to his class (along with his teacher of the deaf). I’m not sure what next year will bring!