Wednesday, August 26, 2009

Giving better support

In my devastation when Julia's hearing loss was discovered, I sought to comfort and arm myself with as much information about the problem as possible. I read every bit of literature I could find on the subject of sensorineural hearing loss, went to a state sponsored parent education workshop and attended a parent support group meeting. Each activity provided me with endless opportunities for expanding my knowledge and my list of concerns.

Pamphlets and books were written for kids diagnosed as infants. They served to reinforce the importance of making the baby wear hearing aids all day long. They stressed that the first three years are the most important for language development.

The workshop and support group seemed skewed to the parents of kids with profound losses. My child only has a moderate loss. I felt a little sympathy and an overwhelming vibe that I should be skipping around celebrating that she isn't more deaf. "It's just a moderate loss, she'll be fine."

There I was with a toddler, nearly three years old, just diagnosed. I couldn't imagine how she'd ever speak normally. I needed something more than a brush off, "she'll be fine."

She is fine. Even back then, I knew she would be. But if I was approached by someone starting on their own journey as a parent of a child with hearing loss, I hope I would have something more to offer.

Commiseration is an obvious starting point.
It stinks to find out that your child is going to have a life altering, lifelong disability. It's not like wearing eye glasses. Eye glasses for your ears works to describe hearing aids to a preschool classmate, but it's not an adequate analogy for finding out your baby has never properly heard your voice.

Going to all of the IEP meetings, speech therapy, audiologist appointments, ENT appointments, testing - it can be tough. Even though a whole waiting room of parents were waiting on kids in much more serious situations than mine, I still had a tough time when Julia was under anesthesia to have the ABR test that confirmed her hearing loss.

There have been and will always be some problems.
I was deeply concerned that there could be teasing about the hearing aids themselves and the speech delay. I'd witnessed a kid in a grocery cart mocking my daughter and asking his dad why she talked like a baby. Once I had to restrain myself from pinning a boy's arm behind his back and whispering, "I'll break your little arm if you ever touch her hearing aids again, got it?"

I've read about adults with the same level of hearing loss feeling left out at parties and even family dinners. Leaving the table with hurt feelings because they missed the punchline of a joke. It's something we'll have to be cognisant of in the future. It will never go away.

These things aren't covered by a well-meaning catch all, "it will turn out fine." Sometimes better support comes from sharing the things that are tough and how over time it gets easier.

End of summer progress report

At the beginning of the summer I was geared up for a difficult time at the pool. There had been enough frustrating experiences with Julia misunderstanding and becoming frustrated while swimming sans "magic ears" that I sought help from various sources. No one responded to my question: what do you do when she can't wear her hearing aids?

Now the summer is winding down and swimming pool days are numbered. Without any outside help we've seen vast improvement. Even in this obscure area Julia has adjusted and is now thriving.

The change is in an awareness that she has developed. She tells me that she can hear people talking, but she can't understand their words. She reminds me several times, "You have to talk loud, I don't have my magic ears." She makes better eye contact. She is compensating.

This could be some sign to me that I can stop worrying. I doubt that there will ever be an end to my anxiety. But even I, the over-protective parent, have to admit she is a competent, autonomous little person.

Soon she'll be explaining to other kids all on her own how they can help her hear better and I'll sit back and listen from a lounge chair. She may even be able to train a swim instructor in the best way to communicate. Another battle is conquered.