By Leslie Lindsay
About a month or so ago, my family read Who Was Helen Keller by Gare Thompson. It’s a small book, designed for kiddos in the 1-4th grades. You may know Helen Keller as the deaf and blind young woman who became quite famous for her writing and later appearance in the movie “Deliverance.” You may not know much at all. And that’s okay, too! Grab your notepad, it’s time for a history lesson. (image source: Amazon.com 4.22.13)
With my two girls snuggled on my lap after bathtime and a busy day, we dove into Helen’s dark, silent world.
Born in 1880 in Alabama to a farmer/newspaper editor and a housewife, Helen was a beautiful–and bright baby. She learned to speak early. Her first words were “tea, tea, tea” and “wah-wah” for water. If she didn’t know words for things, she made signals to show her mother what she wanted (sound familiar?)
But just before Helen turned two years old, she became very sick with a fever. In fact, her doctor thought she wouldn’t make it. But, Helen’s fever broke, and all was well.
Or, so we thought. Her mother realized Helen could no longer hear when the dinner bell was rung; Helen didn’t blink when objects moved close to her eyes.
I paused reading, and looked to my daughters, “Wouldn’t it be hard if you were blind-folded every day, all day and everything looked like night?” They nodded, their round eyes growing big.
I asked, “And what if your ears were stuffed with cotton balls? That’s how Helen felt all the time.” Kate and Kelly cupped their hands over their ears and closed their eyes.
And when I read this sentence in the book, “Imagine if you could not see, hear, or speak. How would you let people understand you? How would you ‘talk?'” my voice caught. I pulled from what I knew: Childhood apraxia of speech (CAS).
[CAS is a neurologically based motor speech disorder, making it hard–or impossible–for children to articulate their expressive language. It does not have anything to do with being blind or deaf.]
I snuggled my girls closer and read on, “But Helen was smart. She clung to her mother’s skirt and followed her everywhere…Helen found ways to communicate.”
By the time Helen was five years old, she had devised over 50 signs of her own. She pulled at her mother and father and that meant, “Come with me.” For “bread,” Helen acted out cutting a slice and buttering it. To say “small,” Helen pinched a small bit of her skin in her hand. She spread her fingers wide and brought then together to show them “wide.” (image sourc: Wikipedia, 4.22.13)
That night, we closed the book and promised to read another chapter the next day. The girls were intrigued.
As promised, Helen’s story continued. “The family tried to understand Helen, but it was not easy. She had a terrible temper. When Helen did not get her way, she threw a tantrum.” (Ah yeah, another familiarity). “Helen knew people talked with their lips, but when she tried moving her lips, no sounds came out. She did not understand why. It made Helen so mad. She kicked and screamed in frustration.”
At this point, I handed the book to my husband, “Here, you take over now.” It was as if I slipped into a time warp. Although my daughter is now 8 years old and doing just fine in regards to her apraxia, reminders of those early, days was a truth I was not ready to handle. I thought I was reading a biography about a blind and deaf woman, not reliving painful memories of my daughter’s own inability to communicate.
Kate cocked her head as we read, “Did I do things like that because of my apraxia?”
I sighed and explained. “You did. But it must have been really hard for you to have all of these wonderful thoughts, ideas, and needs inside of your mind with no place for them to go. We knew you had lots going on in there, it was just hard to pull it all out.” (image source: personal archives)
Kate nodded, “Yeah. It was.”
“And that is why we took you to see Miss Jen and Miss Sylvia. They helped you find your voice and now we don’t have to worry about that anymore.”
There wasn’t much more discussion about apraxia as we continued the story of Helen Keller until I aske Kate if could borrow her book. She looked up from reading one of her comic books (The Adventures of TinTin has made an appearance in her world). “Why?”
I shrugged, “Well, it reminds me a lot of how our life was early on with apraxia.”
“Oh, that,” she said flatly and then nodded towards Helen Keller sitting in her nightstand, “Go ahead, mom.” (image source: www.misspriss.com 4.22.13)
While those early years may have made an impact in my life, I can see that for Kate, it barely phased her.
Children, like Helen Keller are resilient and can overcome great obstacles. They can even learn and grow from these things…who knows, maybe some day our children with CAS will grown into speech-language pathologists and help other children find their voices.
Thank you for this post! Today was a difficult day for us…we had a lot of frustration during and after therapy today. Days like today are tough for mama & daughter. I know she is strong though and we will be on the other side one day soon! 🙂
Awww…hang in there! There will be days like these, but they make up for it in the long run. You will be on the “sunny side of the road” in no time, as Van Morrison sings. –Leslie : )