The ability to Communicate

A year and a two weeks ago my Little Miss was diagnosed with Childhood Apraxia of Speech.

Her God given right, her ability to communicate was locked inside of her mind, unable to come out.

At four years old she had 6 consistent words.

Six words and a lot of heartbreak.

Six words and a lot of tears.

Six words and a hundred signs.

Six words and a million things to say.

 

Day after day, hour after hour our hearts broke with her frustration and her failure to communicate to us the simplest of things.

Sign Language became a gift from God and we learned all that we could. We'd spend hours trying to figure out what she wanted and once we did, we found the sign for it. She picked up signs so quickly, she'd remember ones I'd taught her before I truly had them down.

 

I knew we were drastically behind where we should be, but when she was finally tested and identified as severely Apraxic, my heart fell. I lived with the beautiful girl every minute of everyday--I knew her troubles better than anyone and yet the label was like a punch in the gut. The therapist that tested her proceeded to tell me that she would need a sign language interpreter when she went to school, that she would not communicate for a very long time. I asked how we would know if she were learning in school and she replied that we wouldn't. That it would most likely be years before we'd know if she could even read.

I started to sob in her office.

A million fears running through my brain.

 

That was the day I truly learned what it means to advocate for someone.

It was the end of the school year and the therapist wouldn't be returning the following year. We left that day with zero summer therapy plans and no idea who would be helping us in the future.

And then I remembered Tammy.

I had met Tammy, a speech therapist a year before and had mentioned to her Sydney's problems. I was helping out in the nursery at my church and so was she. We were both serving in a place where we don't normally. Sundays are Tammy's family days, but she is kind and when they asked her to come in and help, she did. It wasn't my calling, but they asked me to help too and I will be forever thankful I did.

Tammy mentioned Apraxia when I talked to her about my Little Miss a year previous. I had forgotten the strange foreign-to-me word until my girl was diagnosed.

So, I called her, fully expecting her to not remember who I was at all. I needed someone who knew Apraxia, I needed someone who knew how to help us and I needed someone right then, that summer--just this last summer. We couldn't waste 3 more months.

I called, ready to offer to pay her whatever she required with money we didn't really have, hoping she could meet with us at least once a week.

Tammy did remember me from our brief meetings, she even remembered my girl's name.

What an answer to my prayers.

She was contracting out with the CDC and within a week she had Little Miss's IEP amended to include summer therapy, not once a week but 3 times a week. She knew the correct therapy to use and she studied Apraxia more that summer, she went to a conference all about Apraxia.

 

Summer was long, we gained a few more words, like "moo" and "boo", but not a lot. Her vowels were a mess and training her brain to say them correctly was hard and so much work.

I was so thankful we didn't wait until school started again and yet I was scared. If everything took this long... But then the first SLP had told me she'd need a signing interpreter.

Later Tammy told me that a sign language interpreter wouldn't be ideal for Syd. She wasn't fluent after all.

That's when we invested in the proloquo2go app.

I'd never spent money on an app before and this thing was just under $300. I had a minor freak out. --What if this didn't help?

We also needed an ipad to go with it... which aren't exactly cheap. Amazingly, our local Wal-mart donated the ipad to our girl. And a dear friend even donated 50$ to our app fund.

This would be her voice at school.

She loved using the app. She loved pressing the buttons and having the device say the words. Even when nothing made sense, she wanted to hear the voice in her control.

And with so much repetition, it taught her too.

She even started spelling words she couldn't yet say. She'd go to the keyboard section on the app, spell the names of the members of our family and have her device say the words--it was her way of calling us and herself each by name.

 

School started this past year and we now have two wonderful therapists! Tammy in our home three times a week and Christy in an office down town once a week.

 

Our determined and strong willed girl works hard. Sometimes the work feels too hard and she wants it to be over. But she is doing it. This is where we're at--therapy 4-5 times a week.

And everyone, our family, our friends, her therapist, we've all been amazed at her progress. She's come so far in such a short amount of time. With help and love from kind, gifted people.

This past January, late in the month at 4 1/2 she said her name for the very first time. --And then she said it a dozen more times because I needed to hear it again and again from her lips!

And now she has well over 300 words.

 

So, yeah, one year ago she had 6 words.

  But today she read me a book.

Miracles people.

Things we weren't sure would ever come to pass.

There is a light at the end of this very long tunnel.

And in the end it will be so much better and so much brighter because she will never be a person to take for granted something so priceless as communication.

She--and all of us, will always be grateful for something that we often don't realize is such a gift.

 

--On a side note, this Saturday, May 14, Apraxia Awareness Day I will get to watch my beautiful niece, K, graduate from college. So that she can begin the journey of graduate school and become a speech therapist and bless those like my Little Miss.

My heart is so full and so very grateful.