Imagine you are going out to a restaurant. You have been working all day and are looking forward to that giant 12 oz steak, baked potato, and monster salad. You're starving. You dress up and go out. Then you get to the restaurant and the waiter asks you what you want. You open your mouth and no sound comes out. You try again but this time all that comes out is weird sounds. "Rgumpha". To you it sounds like steak. But everyone looks at you funny.
Your companions step in to save the day. "She wants fish, rice, and soup." WHAT?!?!? You clearly wanted steak. You don't even like fish. You try again and get louder. You companions laugh and say "Isn't that cute? She's really hungry." By this time you are really ticked off. You don't LIKE fish. You start picking up silverware and throwing it, you tip over all the waters at the table and begin to scream and cry. At this point you are told to be quiet by your companions and they shove bread in your mouth in hopes to appease you. You have been broken. Your wants have been ignored. A part of you is raging and the other part is hurt and confused.
Were you listened to? Were you validated? Were you acknowledged as a human with rights? No you weren't. Would you like to live this way? I wouldn't. I'm glad I can go to a restaurant and order my steak with pride.
But it is estimated that 1 in 100 children have communication issues. For some it is finding the right words. For some children, like my daughter, they are classified as totally nonverbal.
When we adopted my son at 18 months he came to us with a rich sign language vocabulary (his foster father was profoundly deaf). He only had five words. Within the next year his vocabulary exceeded the average toddler. We surrounded him with conversation, books, music, and Kipper the Dog (so not my choice but he loved it). He blossomed.
When Cary Lynn came to live with us I made the assumption that yes, she would be a late talker but surely she would blossom as well. We did the same things. But we had such different results. Where Marvin talked within months Cary Lynn was struggling even to make simple sounds. She understood sooo much but the words just didn't come. So I tried harder and pushed more. She was such a smart kid.
But the brain bleed that triggered all my daughter's health issues also robbed her of something very precious. Her words. But somehow we still made little inches. I learned to recognize what her sounds meant. When she moved a certain way. She and I could generally work together and get her needs met.
There came a day though that we spent over an hour of tears, tantrums, and the biggest meltdown over what toy she wanted. Try as she did I couldn't understand what my kid needed. And it killed me.
We were in Early Intervention and they pushed sign language and words. I started pushing back. Then we were introduced to our first communication device. The big mack.
Cue the angels. I loved it. We programmed I want that in there and Cary Lynn took off. She was now able to tell me, well she wanted something. It was pretty good. And it worked for about a year.
But several months ago she put the brakes on. Cary Lynn refused to use the switch. She would throw it, grumble when it came up, and just balk. So I started to wonder if it wasn't enough. After all, only being able to say one thing over and over is rather limiting. So her therapists suggested two switches. I was like seriously? Don't you have anything else?
So I started asking questions. Doing research. I am lucky. I have friends who love alternative communication. One amazing human presented me with a PODD book
So then I got excited. What else could we do? I then looked at the IPad. At this point we only used it for learning games. What if I added some language. My rock star communication and tech peeps came through again. We started with Go Talk Now.
But for my daughter I would slog through anything. Including technology. We also invested in PODD for the IPad.
It's not perfect. She still has CP and somedays the movements aren't there even with lots of trying. So I teamed up with UVA (our hospital) and worked with a speech therapist and the Tobii/Dynavox people. Cary Lynn was able to trial devices. We found that she really liked a nice communication device. She was able to demonstrate competence and had a lot to say.
With speech comes freedom. Freedom to tell her mama to go jump in a lake, refuse to work, and demand endless episodes of Peppa Pig (once again not my choice). In other words to be three.
Yesterday she melted down. We had about two weeks of killer back to back appointments. Next week is also going to be busy. By pulling out PODD she was able to say that she was sad and tired. A year ago that wouldn't have happened. I would have just pushed her on. Today I pulled the plug. No appointments, she is still in pjs and is happily rolling on the floor trying to grab at her balls as they roll around and is squealing with joy.
As I said, this is not perfect. Because I'm not perfect. Somedays we never crack a device. Her CP gets in the way or she isn't interested in trying. We get busy with other therapies. Little does she know we are going to be walking in a bit.
But bit by bit our new way of talking is falling into place. Now a days the experts push for communication devices at 18 months for children who they target with speech delays. I worried about putting one in her hands because I was afraid it would stop her from "really talking". But if anything I now hear more noises. More sound. More garbled language, but language none the less.
My daughter has found a powerful tool. She has found her voice. Someday she will be able to order steak, watch what she wants on tv, and be able to connect with the world around her. And most important of all be treated like someone who has value and worth. I have no idea where we will be in another couple of years but I look forward to my daughter being able to tell you all about it. In her own words with her own voice.