Friday, July 27, 2012

The Wisdom & Confidence of Seven Years

I have a recurring dream about hearing aids. It starts with a shocking realization that I wear a pair of BTE aids just like Julia's. Then inevitably, I stress over getting them wet or losing them or some other tragedy.

This has replaced the "big contact lens" dream of my youth. Instead of a gigantic contact lens that couldn't possibly fit in my eye, I'm now wasting REM sleep dreaming about hearing aids I don't even have. Would it be too much to dream about basking in the sunshine? Or relaxing? Or just anything nice?

Even Tim had a dream one night. He was back in high school, he told Julia and I. A girl he was friends with had to get hearing aids. She was embarrassed. Tim knew he should talk to her, but didn't as so often is the case in dreams.

"Why was she embarrassed?" Julia asked.

Tim and I looked at each other. Julia is not embarrassed by anything. We've made a concerted effort to keep it that way. I had a moment of fear that letting her know a person might be embarrassed by hearing aids would make her embarrassed of her hearing aids.

"They shouldn't be," Tim said finally. "People are insecure."

"It can be hard to feel different sometimes," I added. "I remember being very embarrassed when I had to wear my scoliosis brace as a kid. It really hurt my feelings when people asked me about it in a mean way."

"Well, hearing aids are nothing to be embarrassed about," Julia concluded. "Besides, if you're a girl you could just pull your hair down over them or something. Maybe it's harder for boys."

That was it as far as she was concerned. Tim and I seized a teachable moment wherein we tried to boost her self-confidence by talking about how wonderful our seven-year-old daughter is. Julia doesn't mind when we do that. She already knows.

I hope she never forgets. That would make a nice dream.

Wednesday, July 18, 2012

Magic Ear Kids Sponsors Race Car

Sunday, July 15th, 2012 was a big day for magicearkids.org. My little web site entered the world of sports car racing by sponsoring the Slipstream Racing Riley Daytona Prototype in the Targa Series Pennsylvanian 150.

This was the first race of the Targa Endurance Championship Series, sixty laps at Pocono Raceway. The race car, sponsored by Magic Ear Kids and Hands & Voices of PA, was driven by world renowned driver, Tim Resciniti. Tim led all but a few laps of the race securing a first place finish. He seems to think his sponsors owe him a t-shirt.





The event was televised live on GlacierTV. You can watch it here on YouTube. The Magic Ear Kids car is green in the video. My sources tell me it will be pink as promised by The New York State Classic in September. Keep up with all things Targa Series by visiting GPLaps.

Friday, July 13, 2012

An Idiot's Guide to Ear Problems

A real breakthrough has been made this week in our child's swimming ability. Monday was the first day of swim class. The same swim class Julia took last summer complete with the same three instructors.

I've been sitting, relaxing even, poolside, while two out of three instructors repeat the instructions at close range. They check to make sure Julia knows what she should do. Julia is paying attention without any prompting. Her determination and the instructors' accommodations have made all the difference. After three lessons, Julia figured out how to swim on top of the water. She coordinates her little arms and turns her head to the side. It's slow, but steady, and close to accurate.

I am thrilled.

There's still that third instructor though. Last year, I figured him for a teenager. Maybe he's in college. Either way, he doesn't get it.

On Monday, Julia interacted only with the two accommodating instructors. I thought this might have been by design. The boy has lots of other kids to work with.

Shortly into the lesson on Tuesday, he came for Julia. "YOU. GO. DO IT!" he barked.

By that he meant, "please float on your front for five seconds and then flip on to your back and float for five seconds."

Julia looked at him quizzically and thrashed around in the water. He attempted some crude pantomime. More thrashing. The boy eventually grabbed her by the arm and moved her back into the waiting area.

She was back with the preferred teachers for a few skills and then as luck would have it, again with the boy. This time he indicated her turn with a forceful jab of his finger.

In three steps I was hovering over him, "Excuse me, she really needs you to repeat the instructions at close range. That pancake flip you took her for last time didn't go well because the communication wasn't there. The other two instructors have been having success making sure she knows what to do before they take her. You need to explain it to her again or maybe just let the other teachers take her. That would be fine too."

I turned back toward my chair. I'd said my piece. It wasn't really a conversation, but then I heard him talking.

"I know," he said. I turned around. "We've had kids before with cochlear implants."
"She doesn't have a cochlear implant," I said, possibly cutting him off. "It's not the same thing."
"Yeah," he shrugged. "I get it. She has an ear problem."

And you have an idiot problem.

Thankfully, his boss, one of the two preferred instructors, interceded and informed the boy that he should just repeat the directions.

It's been a good opportunity for Julia to work on her self-advocacy skills. "Don't go unless you know what you're supposed to do," I told her after class. Tim suggested we teach her to say, "Hey (insert alternate name for a donkey), I didn't hear you!"

That may be a little much.

By this afternoon, the boy was doing better during the few times he instructed Julia. It seems like Julia is much less inclined to guess at what she should do. She objects when she doesn't understand. It helps that she's getting the hang of her swim strokes. And that two of the instructors are really going above and beyond. Perhaps Meatloaf was right, "two out of three ain't bad."

Sunday, July 1, 2012

At last, I've found it!

In 2008, I attended my first support group for parents of deaf/hard of hearing children. Julia was freshly aided but still non-verbal. Her dad and I were in full-on panic mode. The Internet did not paint a pretty picture for late-diagnosed kids.

Tears came easily in those first months, and I was eager to connect. I learned two things at the meeting:

1. My daughter wasn't "deaf enough" for me to even worry about.
2. Hearing loss is overcome exclusively through the use of intense auditory-verbal therapy.

I left feeling worse than I did going in, burdened by the guilt of my daughter's residual hearing (other kids had much less) and more anxious than ever about those years of missed speech therapy. It wasn't what I had in mind when thinking of "support."

Over the years, I met many more families and read documents promoting every methodology. I attended presentations that chastised parents for not signing because the lack of a visual support to spoken language is something akin to child abuse. Total Communication alternated between being the holy grail of Deaf Ed and a non-existent, nearly mythical misnomer. I heard research eluding to the inability of signing children to learn to speak and that they would never learn to read. All around there were pronouncements of children being "too deaf" or "not deaf enough" for one thing or the other.

In spite of these hard and fast pronouncements, happy, healthy kids were all around reading and communicating.

During this period of self-discovery, I stumbled upon Hands & Voices. "What works for your child is what makes the choice right," is their motto. Here was an organization, finally, that showed me all of the options and advocated fiercely for the rights of every deaf/hard of hearing child. Hands & Voices is a network of families supporting each other to achieve the best life for their child.

I felt a great relief as I learned more about Hands & Voices. I think it might have calmed some of my fears had I found it a few years earlier!

Today, there is a growing Hands & Voices chapter here in Pennsylvania. Hands & Voices Guide By Your Side of PA is helping families with newly diagnosed children (birth-age 3) navigate the many decisions they face. We're working hard as a chapter to help families and professionals network throughout the state.

It is my hope that parents will have an opportunity to attend a Hands & Voices event and that the support they receive will be meaningful and unbiased. Together we can achieve positive outcomes for every child and make sure no family feels they're in this alone. It's a positive message, guaranteed to leave you feeling better after the meeting than before!