Julie Lyles Carr: The Year of Jubilee

Friday, February 8, 2008

The Year of Jubilee

Valentine's Day is just around the corner and we've been pounding the conversation hearts pretty hard around here. No nutritional value, no fat and plenty of opportunity to work on those phonics skills.

I love seeing all the hearts and paraphenalia this time of year and have already received one Valentine's card, one that will definitely rank up there in my favorites. This particular card is printed on a nice sturdy card stock in a deep red with little pink hearts across the cover. It has a larger heart down in the right hand corner. It's attractive and festive, but it's not the design that compels me; it's the contents of this card. It's an opportunity to let someone hear the words, "I love you."

4 of 8 was diagnosed 7 years ago this month with hearing loss. Our journey with her has been intense, amazing, difficult, rewarding. The myriad of decisions that have to be made for a child who is diagnosed with hearing impairment can be dizzying, particularly for families with no other incidence of deafness. Over 90% of children who are diagnosed are the only ones in their family with hearing loss, and so a major lifestyle shift occurs for all the family members. Should we learn sign language, is this child a candidate for a cochlear implant, who pays for the hearing aids, all questions that have to be decided and decided quickly in a vacuum of information. The language centers of the brain are considered most supple from birth up to about the age of 5, so those years are critical in supporting language development. We felt we were already coming to the table late, with 4 of 8 not being diagnosed until she was two and half years old. We scrambled to provide resources. We cried over the silly things things: she would have to wear hearing aids on her wedding day and how would that look with her dress? We cried over the important things: she had never heard us tell her we loved her.

We entered an unknown terrain and we were supposed to be her guides, completely unqualified and lost ourselves. Our first shocking discovery in this new land was that insurance companies do not pay for hearing aids. Yes, you read this correctly, insurance does not pay for hearing aids. Apparently in the minds of insurers, hearing aids are a vanity item, kind of like breast augmentation or a face lift. Mind you, they will pay for Viagra, just not hearing aids for deaf children. Hearing aids typically sport a price tag of $4000 to $8000 depending on the technology and quality. Hearing aids generally need to be replaced every 3 to 5 years. You do the math.

Shock number two in the Land of Quiet was the unfortunate inequality of audiologists. While all men are created equal, audiologists are not. Many audiologists are primarily trained to work with the senior population and the needs of an adult who after a lifetime of hearing is beginning to experience some hearing loss is a vastly different thing than a child who has never known meaningful sound. The first audiologist we went to happily ordered expensive hearing aids for 4 of 8 and we scrambled to find a way to pay for them. She was fitted in April of '01. They were shiny, new and completely inappropriate for a child needing to learn language. They would have been a godsend to your Aunt Thelma who has trouble making out the dialog on her favorite soap opera, but they were not the right technology for someone learning to listen. 4 of 8 hated them, I grew to hate them.

We continued to stumble in the mists for almost another year. We cried, we prayed, we researched, we fought (to no avail) with insurance. And then, through divine means, we were led to a magical place and to a magical group of people.

Hearts for Hearing is a group of audiologists and therapists who teach hearing impaired children to listen and talk. Through appropriate technology and techniques, children who a generation ago would have been functionally deaf can experience the auditory offerings of our world. The synergy of the technological, surgical and therapy interventions affords phenomenal outcomes and this trifecta approach at Hearts for Hearing is one of only a handful in the nation. We jumped in with both feet. Within a year, 4 of 8 had made unbelievable strides in her language development. Within two years, she was a convection oven of conversation. Now, after six years of living the Auditory Verbal lifestyle, 4 of 8 is within grade level in her scholastic endeavors and can keep pace with her peers. We have our hiccups; things do sometimes get lost in translation and some kids are not always kind. But overall, 4 of 8 is brimming with things to say and is not afraid to say them. She journaled this past week, "I love my life. I live in my life." I find that profound: 'I live in my life'...that sounds like something we should all aspire to.

Which brings me to my favorite Valentine this season: my card is from Hearts for Hearing. It is their goal to provide the first set of hearing aids, free of charge, to every newborn diagnosed in the state of Oklahoma, the only program like it in the nation. While we no longer are in the region, we believe passionately in what Hearts for Hearing is doing and we know their long-term goals will extend far beyond their state borders. We have the opportunity in this season to help provide donations that will go toward fitting those hearing aids on those babies. We have the opportunity to be a part of the ultimate Valentine's Day gift: allowing a deaf child to hear the words "I love you."

If you would like to learn more about Hearts for Hearing or if you are interested in helping fit deaf children with the ultimate Valentine's Day accessory, please go to www.heartsforhearing.org. Please feel free to also visit my scrapblog on our journey with 4 of 8.

Enjoy Valentine's Day. Enjoy the cards, enjoy the candy. And drink in hearing the words, "I love you."

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