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The Best Freebie I Ever Received – An Accessory for My Son’s Communication Device

Jamie Sumner
Special needs mom, author and blogger
03/29/19  1:22 PM PST
Communication Device

I own approximately two and a half things from Lululemon. The half is a scarf/wrap/shawl that I never know how to wear, but bought because it was seventy percent off and how could I not? The rest of the time I am a card-carrying member of Target, because you should always have the option of picking up a pint of Häagen-Dazs while also shopping for athletic wear.

You know what’s more expensive than Lululemon, though? An alternative communication device. My son, Charlie’s, Tobii is thousands upon thousands of dollars that luckily, insurance mostly covers. No matter how much it costs, however, we would find a way to get it. It has changed his life. Because of Charlie’s cerebral palsy and the fact that he had a tracheotomy until he was almost two, language has not come easy for him. Words get stuck. He knows what he wants to say, but his mouth as well as the rest of his body won’t cooperate. He must use all his strength to keep himself sitting upright. There is no spare effort left for speaking. I can put my hand on his chest and tummy and feel it constrict with the effort of short, one-syllable words. I can feel how hard-wrought his language is. The Tobii, now that he’s mastered it, has given him the freedom to speak easy. It is, in a very real sense, priceless.

But like any technical device, the Tobii can break. In fact it did. It slid right off his lunch table at school in a perfect parabola of disaster and crashed onto the unforgiving tile floor. The screen cracked one month before the warranty expired. It’s usually the other way around, isn’t it? The fridge, the van, the air conditioner all manage to hold on until just after their free time has expired. Thankfully, the timing of the Tobii crash worked in our favor and we were able to get it fixed, free of charge. Afterwards, however, when it arrived home encased in bubble wrap and plastic and we began to use it again, I caught myself holding it differently—like a vase full of flowers in my arms. It was fragile now in a way I had never considered. It was supposed to be indestructible, but nothing is, really. And so I began to offer it up to Charlie gingerly and cringe if he slid it across the kitchen table. On the first day it went back to school with him, I inspected its carrying case, the one provided by the company, that we had been using for years. Here’s what I saw: the shoulder strap had given way and was tied together in a hasty knot. The toggle on the zipper had vanished long ago, so that you were left tugging on a jagged piece of metal, similar to an unbent paperclip, to get it closed. It was horrifying. Would I buckle my kids into a fraying and half-broken car seat in the hopes that they’d come out alright? Of course not. And Charlie’s voice deserved the same care.

This is where Lululemon pays me back ten-fold for my scarf/wrap/shawl. It had come home in a bright red bag, which I had saved because it was re-usable. It had handy red nylon straps, a water-proof coating, and, best of all, a snap at the top. I dug it out of my closet and held it up to the light like a fine wine. It was the perfect size for the Tobii. I slid Charlie’s device in and felt the satisfying click of the snap. I lifted it on to my shoulder, swung it around a little like you would a purse to test the heft. The Tobii stayed put, solid and safe. It was, dare I say it, better than the original case.

And so my son goes to school every day with a bright red Lululemon bag in his backpack. It is precious because it holds his voice. It’s the best free gift I ever received.

child with special needs

Jamie Sumner is a mom of a child with special needs, author and blogger.

Read her blog, The Mom Gene.

Follow her on Facebook.

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