It started with a sound. Or maybe it would be classified as a word. It was more like a garble of words than anything really comprehensible. If you recorded the words on one of those mini tape recorders--the ones reporters use--and played them back at 1.2 speed versus 2.4, you might have be able to make them out. I mean, listening to the words in slow motion. It sounded like he was saying, "I'm sorry for doing what I was just doing...I'm sorry, I'm sorry, I'm sorry." That's as close to a translation as I can remember. This was nearly five years ago, and we've lived through the progression of the disease ever since.
It probably started with a cough, or the clearing of his throat; misdiagnosed as asthma. Cyndi's had asthma since she was a kid, so we were not shocked when they proclaimed this to be true. We were on our first family road trip; the Midwest to East Coast and back. Cyndi had it all planned out: we would drive to our destination at night (besides the first leg), and hang out at cool, fun, and educational places during the day. We went to the Rock and Roll Hall of Fame, we went to a Space Museum, we visited an outdoor zoo where we were bused to the animals and viewed them from the safety of our vehicle, we went to Hershey, Pa, Independence Hall in Philly (with a brief stop at our old apartment in Blue Bell), toured the White House, went to Bob and Lisa Porter's wedding, had BBQ in Cincinnati.
It was a whirlwind vacation, peppered by what we no know were constant vocal tics. If there were sounds coming from his mouth--the noises, the words, the clearing--and we there were 30 minutes, he'd do them for 20-25. We were worried, we were scared, we were parents.
Frederic was diagnosed with Tourette's Syndrome in 2005. The medical experts we consulted knew what it was before the test results came back. He had all of the symptoms. It was clear to everyone, including us.
And it's progressively getting worse, in my opinion. The noises get louder, the sounds are unique. It's exhausting, mostly for our little boy.
For the most part, people are understanding. There was this one time when a little girl--at Bee Camp--called him names and said he should stop making those stupid noises. It was the summer after the diagnosis, so we were very ill equipped with how to react, and not over-react. He didn't want to go back the next day. He held his head down low, ran under the covers on his bed. He was too young to understand his neurological disorder was nothing he could control, and nothing to be sorry or embarrassed about. Over the years, we've learned how to cope. We've given him the confidence and tools (words) to handle people's curious reactions. And I'm proud of how he responds. Simply telling the inquiring person that he has Tourette's.
But sometimes, it's not that simple. Sometimes negative reactions happen. Like today, at Religious Ed. And maybe it's our fault. Maybe we didn't tell the teacher about his situation. Maybe we didn't take the five minutes we typically do to explain what might happen in a quiet classroom setting. Maybe we should have stood Frederic up in front of the entire class and talk with them. Maybe, but I'm sure we at least let his teacher know. It wasn't her that made Frederic feel bad. It was the classroom helper--her son. He "punished" Frederic for "making those noises." Punished him by making him read aloud; something that doesn't make the tics any less prevalent. "I was so embarrassed," Frederic said. "I almost cried."
Which is what I felt like doing.
This has been sitting with me since this morning. Normally, I would have gotten mad. Normally, I would have wanted to rush to this person, and put him in his place. Normally, but not this time. I explained to Frederic--tried to make it extremely clear--that he should never be embarrassed by what his brain and body need to do. I told him to hold his head up high, and never apologize for having a disorder. I told him to take the high road; to educate those who might not have the tools and knowledge themselves.
It made all of the difference in the world when he looked at me and smiled. When he knew his father would protect and defend him. I stood by his side and gave him the tools he needed. This will be a constant struggle, I am sure.
Parenting is hard. But when you can turn a negative into a life affirming positive, it makes it all worthwhile.
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