At 6 years old, my daughter Jaycee says about ten simple words. Most of those words came with hours and hours of practice and work. She desires to speak but cannot. Down syndrome and severe childhood apraxia of speech have left my daughter with a mostly silent mouth forcing us to look for other options.
Knowing that delayed language development is associated with Down syndrome, sign language was started before she could walk. It took two months of modeling for Jaycee to use her first sign independently. The day she signed “more” with her two small hands was so pivotal because it showed me that she could learn a language system.
But a few months later, there were no new signs despite watching hours of signing movies and employing several teaching strategies. As a speech-language pathologist, I have had other clients that have gained signs this slowly. With her delays, it could almost be expected. But, this was my child and I had a very personal investment in what she could learn. The excitement of that first sign was long gone. Disappointment slowly moved in like a light morning fog that unexpectantly became thicker and thicker making it difficult for me to figure out my next move.
On a whim one day, I played a CD of music from her signing movies. At first, the music confused her. She ran to the television expecting her favorite signing characters to appear on the screen. They weren’t there. Large tears formed from her small almond shaped eyes.
The cheerful music soon pulled her out of her emotional crisis. Then she began signing words that I had never seen her sign before. With the visual of the television gone, she finally showed me everything she had adsorbed. The fog lifted and I knew which direction I needed to continue with her.
Sign language became a regular part of our life. There were some problems with it though. Signing in the dark proved to be next to impossible. Because signing involves the use of your hands, signing while holding an object requires some adjusting.
Signing in the car was another difficult situation. Jaycee would softly say “uh, uh” until I turned my head to look at her. Taking my eyes off the road, I saw Jaycee sign “motorcycle.” It was great to see her label objects in her environment but it was dangerous for me to converse with her in this scenario. I once missed traffic breaking quickly in front of me because Jaycee was enthusiastically telling me about the “water” she could see from the bridge and how she would like to “swim” in it. The smile she brought to my face quickly turned into a grimace as I slammed on my brakes just in time.
A few years later with a signing vocabulary surpassing 300 words, Jaycee progressed to a speech generating device. By touching an icon on a screen, the device could say a variety of messages programmed on it. Once Jaycee got the device, the strangest job I had as a mother was to pick out her device’s voice. Should she speak with a British accent? How about a voice that sounds like a robot? With the touch of a button,the voice could be changed from male to female, extremely fast, or extremely slow. Ultimately, I ended up choosing the one that was the easiest to understand.
Her seven pound, pink and black device was the solution to talking in the dark and in a vehicle. Beyond that, she could now talk about all sorts of things that she couldn’t before because mommy didn’t know the sign. Anyone could talk with Jaycee now, not just a few people who knew sign language. The device was that next breakthrough we were waiting for.
Shortly after receiving her device, Jaycee started telling us about her preferences. When she kept saying “pizza” on her device at every meal, I realized that pizza, not chicken nuggets, was her favorite food. It must have been frustrating for her to have food placed in front of her for years that she ate but didn’t necessarily want. Similarly, it became apparent that green was her favorite color. I stopped buying items in purple, which is my favorite color, and chose green. When the only thing she requested on her fifth birthday was a “green balloon,” I was conducted a frantic search in my small town for one.
Like signing, I soon found the device had its limitations too. As I gave Jaycee a bath one night, she signed “dirty.” Seeing her sign while sitting in water full of soft white bubbles made me realize that her device was not the one and only answer. You can’t put an electronic device in the bathtub, swimming pool, or any place with water. Well, at least not if you want to use it again. I thought our signing days were over the day Jaycee got her device. Clearly, signing would still have its place in our lives along with any other method that helps Jaycee communicate.
Whenever Jaycee says a word with her mouth, hands, or device, it feels like a small victory. Every time silence is broken, Jaycee shares with me her thoughts, needs, and interests that I am desperate to hear. Maybe one day I too can appreciate and long for silence.