All I want for Christmas is to hear my son speak

Communication is a skill we take for granted. Most of us don’t think about the words that come out of our mouth. We simply talk. Easy-peasy, as my grandson would say.

For my son, Josh, it’s not that easy. Birth trauma left him with Cerebral Palsy. His story is detailed in a blog titled, Walk With Me. The blog can be found under Notes on his facebook page: https://www.facebook.com/profile.php?id=100001731637294 or his website: www.ourhomestudio.com

He’s a bright young man and his level of communication astounds me. I don’t even quite know how to explain how he does it. I’m hoping my Weary book series, due to come out in May 2012, will help explain how a bright, non-verbal young man functions. But for the purpose of this blog, I’m simply relating my thought processes.

Josh’s most reliable communication skill is eye-gaze. He is 100% accurate when he looks at items. But the interpretation leaves a lot to be desired. One example: I returned home from a long day at Easter Seals in Peoria, IL. I stopped at the grocery store on my way home for deli items.

I set out a variety of containers that included one of Josh’s favorite foods. Baked beans. I started feeding him and he wasn’t cooperating. He’d clamp his teeth shut and he kept looking toward what I thought was the refrigerator. I started naming off everything I could think of. He’d shake his head no and kept an intense, unwavering stare toward the refrigerator area.

Twenty questions isn’t a game I like to play when I’m tired, hungry, and frustrated. But Josh was determined. I finally figured out what Josh wanted didn’t have anything to do with the fridge so I turned my attention to the counter in front. I started naming off all the items I saw and was surprised when Josh’s eyes flew upward when I said microwave.

So rapidly, I almost missed the movement, his eyes flicked toward his baked beans and back to the microwave. And just to make sure I didn’t miss what he was saying, he repeated the action two or three times. Mental head-slap. Josh was telling me, plain as day, that he didn’t want to eat cold beans. He wanted them warmed up.

If he could talk, it would have been such a simple, fast communication, but for Josh, not so easy-peasy. He persevered and got through to his dense mother what he wanted.

Over the years, we’ve tried various communication aids that ranged from a flat piece of plexi-glass with a hole cut in the middle so I could see his eyes, to a more sophisticated device that would scan various overlays. I had hopes for this device but the scanning was even more time-consuming than my twenty –questions, and if Josh missed stopping the machine at the right hole, he would have to go back through the scanning. He quickly got frustrated and gave up.

He tried an expensive eye-gaze computer but there were two big draw-backs. 1. It was too big to be portable. He had no hope of taking it anywhere and 2. Light bulbs interfered with the way the lens read his eyes. He had to use it in almost total darkness. Putting that device away almost broke my heart. I looked at it as our last hope.

Until this week. I’m super excited about the iPad. My cousin, Paul, made me aware of a 60 Minutes clip about Apps for the iPad that could help autistic children communicate. Josh isn’t autistic but communication is an issue. I watched the clip and the software impressed me.

While in Kansas for Thanksgiving, my niece, Nita, showed Josh her iPad. The touch screen was so simple. Why didn’t I think of it as a way for Josh to access a device? Josh reacted to the iPad with enthusiasm. And once again, I am excited about Josh getting a voice.

I’ve ordered the iPad for Josh. I have no clue whether it will finally allow him to communicate but I have hope. And it’s been a long time since I’ve felt this level of excitement over a communication device.

I don’t think this will be an easy-peasy kind of experience, and I don’t think Josh expects it to be. For me, I want to see my son interact with it. I know he can touch the screen. Whether he can learn to touch it in a consistent manner is another question but we won’t know until we try.

I’ll keep you updated as we experience the adventure. I’ll try to document with photos and video.

What I want for Christmas this year is to hear my son speak.

8 Responses to All I want for Christmas is to hear my son speak

  1. Marilyn Davis says:

    I am praying you get your wish. That Josh gets his wish of talking to us. He knows how to get my attention. I’d better get busy and make sure I get my gift done before next Christmas.

    • C. L. Roth says:

      I always know when I write something that comes from my heart. I tear up reading my own words. Every time I think of Josh being able to start a conversation and contribute, I get all emotional. I really hope this gives him a start.

      • Penny Pfeiff says:

        Oh Carol I know what you mean…and I am so excited to see how it works for him! I will never forget when Josh and I were hanging out waiting for you to get back from one of your workshops and I know he knew you were coming before you got there…but the way his eyes lit up when you walked in the room said more than any words could ever say! I will just be watching to see if you can make it until Christmas 😉

        • C. L. Roth says:

          I hope I can. He so loves Santa Claus. We have tried so many products. I’m hoping this one will give him a starting point. I’m worrying about it turning off automatically. On the Kindle I have to slide a button to turn it back on. Josh can’t do that. It would be too much to hope that he could wake it up by touching it. I’ll have to trust God on this one that it will be a tool that Josh can use. I don’t think it’s the end of the journey, but a beginning. I wish I could video tape his initial reaction to it and keep a record of how he interacts with it.

  2. Byl says:

    I so hope your experience with the i-pad are fruitful and he can make it work. If he can get any response at all I’m sure he will be excited. Meanwhile let him paint and be happy. love byl

  3. Byl says:

    Seems like when I was over yesterday, when you had all the g-kids. Josh had a look of much more confidence and determination when we talked about his I pad. I thought he looked good and healthy this visit. He must be working hard art or something. byl

    • C. L. Roth says:

      He has figured out a way to tell me when he wants to use the iPad. He looks at the computer and I know that means iPad. He works on it every day. This is the first item I’ve had that he shows an actual interest in. He wants it so bad I can feel it. I’ve bought two different wrist braces. Neither one of them does exactly what we need it to so we’re still looking. I found one in a medical supply catalog that I’m going to order next. My problem is not having anybody to ask questions to. I’m even thinking of setting him up with another seating evaluation and possibly a speech evaluation. Surely there are things on the market now that weren’t ten years ago. I want him communicating independently this year. It’s more than time for it.

      I also told him that when it becomes his voice, the grandkids don’t get to play with it. They will have to learn when it becomes his means of talking then play time is over. It’s a remarkable device. I’m still trying to find a better communication system. Tap to Talk has a lot of potential but I can’t figure out a way to make the squares bigger. I’m going to look around and compare products before I invest money in it. Josh is hopeful and I like seeing him work hard. It’s heartbreaking and inspiring to see the determination in his face.

      He’s gone from being so intent and excited that his arm goes into reflex to being able to hold his arm out and in the vicinity of the icons he needs to touch. He’s working on getting his hand to open instead of fist. Every day he does better than the day before. I don’t have words to describe how badly we want this.

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