For the first 14 months of Leah's life, Rachel lived in a state of bliss. She sang songs, read countless books and experienced all the joys of becoming a first -time mom. Leah was a bright child who was always alert and watchful of everyday happenings. Rachel had no inkling that her life, and what she thought she knew about Leah, was about to change.
At her regular visit to the pediatrician, all was well. Toward the end of the visit, the doctor casually asked if Leah was talking. Rachel realized with a start that Leah was not expressing any words. The pediatrician reassured her that they would watch and wait for another month. Shortly after that visit, Rachel's sister was taking care of Leah for the day. She turned on the CD player with the volume accidentally on full blast. Every single family member jumped at the sound. Everyone, that is, but Leah, who continued to blissfully smile and play. When told of the incident, Rachel began to think back at other situations where Leah's responses seemed unusual.
"I remember taking a shower one day," said Rachel, "and could hear Leah whining and I was talking her through it saying, 'Honey I'm coming, I'm almost done.' When I came out of the bathroom, she was standing by the baby gate to our kitchen, straining to see if I was in there."
Rachel took Leah back to the doctor, and he discovered fluid in her ears. This came as a relief, because she thought a two-week round of antibiotics would clear it up. A follow-up visit to the doctor showed no fluid. "At that point," said Rachel, "it was quite puzzling because Leah still didn't seem to hear."
After an inconclusive tuning-fork test done by an ENT, Rachel had to demand a hearing test. Rachel learned of her daughter's hearing loss over the phone. "All I could remember from the conversation was the words 'severe to profound,'" said Rachel. "They were the strangest words to me, like I had never heard them before and had no idea what they really meant."
Rachel continues: "What hit me hardest was that I thought I knew her so well. I thought I had experienced all these cool things with her and the whole time she didn't hear a bit of it! Not one song, not one story, not "I love you", and she didn't know the names of anything."
Rachel tried to imagine what life had been like for Leah. She tried to put herself in her position. "I imagine that for her, she woke up and saw me and we got in some thing (a car) and drove somewhere and there were all these nice people who played with her and hugged her and took care of her (extended family) and then we got back in that thing and arrived back to where we stay most of the time (home) and that guy came home who wrestles with her and makes her laugh...Of course she related to us all more than that, but to take away the names of everything - this just blew my mind!"
Rachel and her husband Aaron mourned the loss of the "perfect" child they had known. They cried, read books, and debated what to do. "Everything changed for us," says Rachel, "but nothing changed for Leah. We recognized that she was the same happy little girl who slept over at grandma's house, played with cousins and played at a friend's house. Why should that change, why should we change how we view her or what we thought she was capable of?"
Leah was fitted with hearing aids and the family began to learn American Sign Language through books and a community education class. "Communication was important to us, and sign seemed to be the logical choice at that point," says Rachel. With the help of a Deaf Mentor provided by their early intervention program, their sign skills began to take off. Within a short time, Leah was expressively and receptively ahead of her hearing peers.
Her sister Lucy was born and diagnosed with cerebral palsy and spina bifida. Doctors predicted that Lucy would have difficulty with speech and not be able to communicate. Lucy picked up signs and the two sisters began to communicate.
Rachel's sister, Emilie, came up with the idea of developing a musical video. Rachel used to perform in a band, "We the Living," and had put her musical talent aside when Leah was diagnosed. An idea began to brew. Why not develop a video that could teach kids to sign and set it to music? The idea was to spread the use of sign so that Leah's friends could learn it easily from the videos and be able to communicate with her.
Today, that idea has grown into six volumes of "Signing Time" videos and music CD's. The first few videos were sold through a simple website and by word of mouth. Rachel began to hear from families who were using the videos with their children, and a trend began to grow. It wasn't just families of deaf and hard of hearing children who were buying the videos, but families of children with Down Syndrome, apraxia, and even families who wanted simply to give their children some early communication skills or to learn a second language.
Rachel set up a Yahoo Group called "Alex and Leah," ( http://groups.yahoo.com/group/alexandleah/ ) and it has grown to nearly 900 members that email each other on a daily basis. More videos are in the works as well as other products. Rachel reports, "We receive 20-60 new customers a day, and most of them learn about us through word of mouth."
Just a year ago, Leah embarked on a new journey with a cochlear implant. "For years," said Rachel, "I was so sure I would never, ever do that and I felt somehow ashamed to even consider doing it. Did I somewhere, deep inside, wish Leah was hearing? Would implanting her be admitting that? Would Signing Time sink as a company if I "betrayed" the very thing that brought the vision to us?"
Rachel sat down to talk to Leah about the implant and explained the surgery. To Rachel's surprise, Leah asked, "When can I get one?" Leah adapted to the cochlear implant with relative ease. Whereas in the previous years, the family focused on ASL, their focus shifted after the implant to include helping Leah make sense of the sounds around her. Leah began to use the phone and even listen to music. She now attends her neighborhood school with an interpreter.
"She is the same kid, loves the same things, she has always felt comfortable with deaf or hearing. We have never talked about deafness as a negative thing or a disability. For example we say: 'Mom is short, dad is tall, you are deaf, and Lucy cries a lot!'"
Rachel continues: "She will always be deaf. We will always sign. I always remind myself, 'easy come easy go.' It is just a piece of technology, an electrode and batteries that could fail, be rejected or simply stop working. When she swims, or sleeps, takes a bath, or when her batteries die, we can still communicate fully. For however long it lasts, it is a little miracle that we get to share."
For more information on Signing Time go to: www.signingtime.com .
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