Embracing Differences: Everyone Has Something!

Teaching Kids About CMT
Link to presentation:  https://www.youtube.com/watch?v=IdL3GHTlAgA

Yohan was diagnosed with CMT 1A at the age of 7. Neither my husband nor I have CMT, so Yohan’s CMT is the result of a de Novo mutation- the first person with CMT ever in our families. CMT just showed up one day on our doorstep as would a long forgotten relative, needing a place to crash. He crashed alright, and never left, but he’s DNA and we’ve accepted him and make the best of the situation…. most days.

Over the years, I’ve written articles and given presentations about our family’s journey with CMT.  Here’s one from 2006 which is still relevant today:

Embracing Differences

Why does Yohan have funny old man shoes? Why can’t he run fast and climb trees? And what’s up with all the sprained ankles? Why does he get rest breaks and we don’t? He’s probably just lazy. Right?

These are just some of the questions and comments we heard during the early years. Yohan’s classmates realized he had some physical differences, but from the outside, he looked more or less, just fine. Making matters worse, Yohan did not have the words to explain this somewhat complicated neuromuscular disease to other kids his age. We barely understood it ourselves.

After giving it some thought, and getting Yohan’s blessing, I decided to present CMT to the entire class in a very upbeat, interactive, and educational way. My goal was to have the students actually acquire some sense of what it might be like to have CMT. I wanted them to empathize with Yohan, understand him, and accept him—not feel sorry for him.

The day of the presentation arrived and Yohan was nervous. True to form, he had his hoodie on and sort of hid in the back of the classroom so he could pretend he did not know me and had never met me. In all honesty, Yohan liked the idea of this presentation because he was not being treated well by the other kids, but when the day arrived, so did a case of the nerves. How would his peers react? There was no way to know in advance.

Yohan is the one wearing a green hoodie! Found him!


 

 

 

 

 

At at the beginning, I spent several minutes explaining the meaning and origin of CMT, and then I involved the class in a discussion and some activities. We also talked about the peripheral nervous system and the differences between sensory and motor nerves.

 

CMT affects the nerves of the peripheral nervous system or all the nerves outside the brain and spinal cord.

 

Then I explained that kids with CMT may have problems with tasks requiring fine motor skills. To demonstrate how difficult it can be for someone like Yohan to perform everyday activities, I gave each student a button-down shirt and a pair of socks. I had them put a sock on each hand, and then I asked them to button their shirts up as fast as possible. I heard, “This is hard,” “I can’t do this,” and even, “I give up!” I also picked up on a couple of  “This sucks” and …well, you get the point. The good news is that this exercise led to a wonderfully animated discussion about how frustrating and challenging the simple tasks of writing, tying shoelaces, and buttoning shirts can be for people with CMT.

Next, I brought in a model of a 10-foot-long myelin sheath with nerves branching out at each end. I made this with a black hose, through which I threaded many different-colored wires. I showed how the myelin sheath protects the nerves and, in turn, helps them send impulses to and from the brain. Delicately avoiding negative terms like “damaged” or “abnormal,” I explained that the myelin sheath in people with CMT is “thinner” and thus less apt to protect and conduct as rapidly or as efficiently as the myelin sheath of someone who does not have a neuromuscular disease.

To illustrate how the loss of myelin affects nerves, I chose three volunteers and asked them to first run the length of the sheath four times and then hop the same distance. They all agreed that hopping was much harder and time-consuming. This activity ultimately gave them insight into why muscles in CMT get tired quickly and just how much more energy a person with CMT must expend to perform the same tasks as everyone else.

Finally, I divided the class into groups of four or five students. Each group (except my son’s group) was given a full bottle of glue. His group also received a glue bottle, but, they didn’t know it was filled with water. I declared that the first group to squeeze out all the glue from the bottle would be the winner. On “Go,” they all squeezed furiously, wanting to win the bags of candy I held out as the prize.

Of course, the group with water in their bottle won very quickly. Cries of unfairness and injustice rang loudly throughout the room, especially when I handed out the bags of candy to only five members of a class of 21. When one child blurted out, “Oh… I get it, in this exercise, we are the ones with CMT and even though we tried really hard to complete the task we could not. The non-CMT group won the prize.” The others reflected on what was just said and I saw light bulbs illuminating the entire room!

This exercise produced much empathy and insight, which in turn provided a deeper and more profound understanding of CMT. Finally, I reminded the class that everyone has some condition or obstacle to overcome, whether it’s wearing glasses or braces or hearing aids. I left them with the following thought: if we all tried to be open to the differences of others and learn to understand and accept them without judgment, this would be a much better, more tolerant world!

From that day on, the teasing stopped, and Yohan became just another kid at school. Yeah, he might wear braces on his legs, trip and fall a lot and feel too exhausted to run around, but the questions were answered and the mystery was solved. Education is a wonderful thing.

 To see the entire presentation, please click on the following link: https://www.youtube.com/watch?v=IdL3GHTlAgA
And please forgive my straggly appearance in the video. I thought I looked fine at the time….great even, but hair and clothing styles were different then. What was stylish then is definitely not cool today. And I hate watching myself in a video – dramatic much? Oh well. it is what it is. The message is the most important aspect of this whole activity. Enjoy.
One of the kids trying on an AFO

CMT BOOT CAMP

CMT BOOTCAMP 2017

It’s a rigorous agenda; and certainly not for the faint of heart.  Some end up here willingly, and others just happen to land here unknowingly, without a means to escape.  Yohan, a victim of the latter scenario, is counting down the days of this grueling summer when he flies free into the real world.

owlflying
Yohan: Determined to Fly Free

 

“Yohan, ” I venture, saying his full first name for the effect, “Once that walking cast is off, boot camp starts here at home – immediately – and comes to a close with your departure at the end of August.” He  furrowed his brows in annoyance and sounding more irritated than usual, he shot out, “OMG, what are you even talking about? You get weirder and weirder every day. Could you please leave now? I have to get ready to go.”

Well, that went well, I thought. Hmmmm…. Note to self – Plan B -must be more abrupt.

A couple of days later, the walking boot came off and I  cautiously began to implement and move forward with my cunning plan. If you want a sense of what his days have been like the past 2 months, read further for the highlights, and a few lowlights.

Rise and Shine!  It’s 11:00 am on a Monday morning, quite early for a gamer who plays World of Warcraft or League of Legends into the wee hours of the morning. I carefully crack open his bedroom door, wiggle my bugle into the narrow sliver of darkness and blast “Reveille” at a piercing tone, which only Yohan hears as most of the neighborhood moms and dads have already left for their 90-minute commute to work.

Click below to hear exactly what went on that morning:

 

“Time to GET UP! UP! UP!  UP! Today is the first day of the rest of your life!” I yell with parental satisfaction.

I hear moaning and groaning and a sudden thump of some hard object against the door. Uh, oh….maybe that was a bit over the top. I think I’ll retreat and let him sleep a bit longer. If he actually falls back asleep, there is a small chance that he’ll think that entire episode was just a bad dream.

Well, so much for that technique. Maybe a more gradual approach?

Yes, soldiers. Boot camp HAS changed since you were kids. Deal with it.  Firing off commands and expecting immediate action don’t work as well as it used to. Subtle manipulation really is the way to go.

Once Yohan started speaking to me again, we established a routine. Most days go something like this:

11:30 AM – Breakfast

11:45 AM – Ankle range-of-motion exercises

11:50 AM – Break

12:00 PM – 10-minute walk

12:15 PM – CMTA-related calls and work.

3:00 PM  – Lunch

3:30 – Ankle Range-of-motion exercises and 10-minute walk

4:00 PM Free Time

2-3am – Bedtime

And at 11:00 AM the next day, we start all over again. Honestly, I’m not sure how he does it all with only 9 hours of free time, but he manages to fit in all sorts of other activities too: allergy shots, physical therapy 2X/week, doctor appointments, play with the cat, bring out the trash, help around the house, etc…. It’s truely amazing.

Seriously though, he’s doing well. Very well. Although I may poke fun, I told him that his only real job this summer, besides his 2-3 hours/day working for the CMTA, was to take care of himself, get physically fit, and to strengthen his calf, leg, foot so that at the end of August, he can walk right out of this house and on to grad school in southern California.  And that is exactly what he’s going to do.

Dr. Pfeffer checks in frequently, for which we are all very, very appreciative. We’ve sent him pictures, video clips of Yohan walking, more and more pictures. At first, I was concerned because his foot still looked overly pronated. We were told not to worry about it…..yet. Healing takes a while and all the muscles in his foot and leg need to strengthen and relearn their own particular jobs. And, he has been walking without blisters, pressure sores, ulcers, pain, which is the best news ever.

 

In all of this, Yohan stood unwaveringly positive. Just last week, he again taught me a very important lesson about expectations.

Me:  Walk back and forth down the hall again. Geez, ya know, that foot still does not look straight to me.

Yohan: I’m walking pretty well.

Me: I know, but I wish the foot did not turn in like that.

Yohan: Listen, Elizabeth. I’m walking. I am not getting sores on the bottom of my foot. It’s not too painful. The pressure is evenly distributed across my entire sole. I’m getting orthotics next week. You just gotta’ stop worrying.  It’s not helping me. It’s not helping you.

He was right. Absolutely, 100% right, and I told him so, “Thanks for the reality check, buddy.” I constantly need to remind and convince myself that good enough trumps perfection. Always striving for perfection, a concept that is not even humanly possible, is defeatist – it will only lead to continual disappointment and dissatisfaction. I don’t want to live like that.  Why do I set myself for failure time and time again? Old habits are hard to break. As Yohan would say, “Your perfectionistic tendencies are a “you” problem. You should work on that…”

On second thought, kicking him out of the nest may not be such a bad idea.