Friday, November 9, 2012

Talking or some version of it

It's funny how a small chance meeting can set off a series of events that change your life.

Let's go back about 2 years ago. I decided I would attend a training on cochlear implants. I needed the hours. It sounded interesting but I didn't have a real reason to attend the training except that I'm a speech-language pathologist.

The training was taught by a speech-language pathologist (SLP) from Children's hospital. The same Children's hospital my daughter sees several specialists at. The SLP seemed so knowledgeable. I kept thinking that I should talk to her about my daughter.

I was so frustrated with my then four year old's language. She had a few basic words but signed hundreds of words. She could correctly sign colors and letters. She understood her shapes and was even beginning to sight read a couple of words. Yet, there were few words spoken after a few years of therapy from different SLPs and myself. I knew something else was going on because there was a significant difference between what Jaycee understood and what she said. This led me to one day seeing another SLP who worked in Jaycee's school district. She was considered somewhat of a local expert in our field so I talked to her about Jaycee. I told her my concerns and the signs that indicated childhood apraxia of speech. (Google this if you don't know what it is.) She assured me I was wrong. Jaycee was a typically delayed child with Down syndrome and low muscle tone. (Apparently, she missed the statistics that 10-15% of kids with Down syndrome have childhood apraxia of speech.) Be patient, she said.

I wanted to pull my hair out. Be patient while my daughter can't tell me basic needs? Be patient while she had a handful of people she could communicate with? Am I smarter than everyone else or is everyone right and I'm sooo wrong?

So, I found myself cautiously approaching the SLP from Children's at that training. Is she going to think I'm off base? I hurried up to the front to talk to the SLP before I lost my nerve. She was nice. I asked if there was any SLP at Children's who had experience with nonverbal children and could provide me some information. She put me in touch with her colleague.

Fast forward a few months. Jaycee is evaluated at Children's. She is diagnosed with childhood apraxia of speech, which was no surprise to me. That SLP gently encourages me to consider a speech generating communication device. Immediately, I resisted. I want her to talk. I want a magical treatment plan that will do something that hasn't been done in nearly 5 years now. I don't want her to carry around a device that will make her look different.

After the shocked mommy reaction, I stopped. I used my brain. I researched and read. I convinced myself this was the way to go. Ok, it's not what I planned but: no more signs, she can talk to EVERYONE now, no more of me trying to learn signs to teach her... 

Sometimes you have to recognize that someone may be smarter than you and take their advice. The process started to get her a device. That was almost two years ago.

Today, I watched my Jaycee do something amazing. During her school's tribute for Veteran's Day, she led the entire audience and school in the pledge of allegiance using her device. I sat there thinking about how far she's come in two years. Because of her device, she's had opportunities come up that have allowed her to participate with peers and in the community that would have been otherwise impossible. Every time she orders at a restaurant using her device or answers a question someone asks her, she's connecting with people and opening their minds about her.

It's amazing to think that one small act of courage to talk to an SLP at a training resulted in Jaycee doing a regular kindergarten school act today.

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