Over several observations of speech therapy (ST) with Nicholas, I come to better appreciate Michele, his speech therapist, and the work she does with her patients challenged in swallowing and eating. I realize how little I knew about speech therapy, and of course now in hindsight, it makes perfect sense to me. I’d watch Nicholas work to “eat” his strawberry yogurt, or a Pringle, or a goldfish snack cracker, listening to Michele coach him through the process: Where’s the food in your mouth? I see food in the front of your mouth – move it to the back where you can chew it. Use your tongue to shift it.
In one instance, I remember struggling to swallow myself as I watched Nicholas. Some may call it a physically empathic experience; others may know it as “sympathy pains.” Whatever you call it, I couldn’t swallow! As I intently watched Nicholas in his efforts, I silently cheered him on, almost willing his little tongue to operate as God intended it. Suddenly, as I’m watching with bated breath and hope to see Nicholas swallow, I couldn’t! I was paying so much attention to what Michele was telling him, I forgot how to swallow in my consciousness of it! My neck muscles tensed, my jaw locked up and my tongue froze! While it seems funny to me now, it wasn’t so funny at the time it was happening. How did that happen? After a few attempts to do so, and a realization I needed to relax the related muscles, including my tongue, I reclaimed my swallow. The strange experience woke me up to the reality others face with this challenge. I didn’t care much for it, and gave gratitude for having the ability to swallow my food, water, and saliva.
Some days were better than others for Nicholas, and from what I understand from Michele, the therapy sessions of late were more challenging because he’d recently had a tonsillectomy. As a result, the physical changes in his throat alter his sensation of swallowing. In other words, the procedure was two steps backwards to the one step forward in his therapy work up to that point. Michele has worked with Nicholas on his swallow since he was a one-year-old. Nicholas still has a belly tube through which he still takes his meals, but now, after he receives his tube feeding at school, he sits with some of his classmates and eats on goldfish snack crackers at lunch. It may not seem like a big deal to you and me but for a little boy who wants to run with his crowd, and be involved in the same activities as everyone else at school, it’s a huge deal.
During my last few observations, Nicholas seemed to be less and less cooperative in doing his therapeutic work. Bad days happen; if he’s too tired, or not feeling well as was the case for one session after being sick all weekend, he's just not that into therapy. You and I have similar days. And geez, the little guy is six! Concerned I was becoming a distraction, I excused myself after several observations. Later, I learned Michele and Nicholas had a “come to Jesus” meeting because he simply was not focusing on or committing to the therapeutic work needed to make progress in his speech therapy. As a result, I heard Nicholas was now more cooperative.
I feel for the little guy because we all get weary and discouraged during the “journey” that leads us to our goal, especially when you are not seeing significant progress or results. You become distracted, and sometimes, simply over it. I’m unsure if this was true for Nicholas, but I can understand getting discouraged doing the same thing over and over again and getting nowhere. If your heart isn’t in it, you don’t try very hard. But that’s when you pull up the boot-straps of determination, which activates the perseverance to keep you keeping on!
With a little pep talk from Miss Michele, and I’m sure a stronger one from his parents, he’s now back on track and working his tongue and jaw each week in speech therapy. In fact, I recently ran into Nicholas and he strongly invited me (meaning he wouldn't take "no" for an answer) to come to his speech therapy session. With Michele's blessing, I observed a very different session. Nicholas kept his hands in the "no trouble" zone which prevents accidentally pulling out his stim pad wires. He loves corn and despite missing his two front teeth, he was able to chew kernels off the cob. He also ate and swallowed a few spoonfuls of yogurt, but more exciting than that? Nicholas ate several small pieces of Dorito chips! Woohoo! It was awesome to see the progress he's had since my last observation several months ago. And my gag reflex didn't even flinch!
Yes, that was a good day for both Nicholas and me.
In the Next Blog Entry: Guest Blogger Michele Clouse shares her experience working with Nicholas in Weathering Storms Together - “Nicholas fought us, spitting food all over his mom, the technician, the equipment and me. . . .”
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