June 1st, 2002
Written by: Tofteland, Marcia T
Real Living with Multiple Sclerosis
I'VE WONDERED if my physical abnormalities have brought embarrassment to my son. At times, I've felt awkward around his friends and I'm sure they have felt awkward around me.
The challenge seems to be in making our children and their friends comfortable around us. Can we find a way to put everyone, including ourselves, at ease with our "different" appearance? The answer, in my experience, is a resounding "yes."
Ideally, this process begins early in our child's life. However, I recognize that this may not be possible depending on the ages of our children at the time of our diagnosis. I want to share with you the successes I've had with my son. I hope the details of my experience might help you, too.
I was diagnosed with MS shortly after the birth of our son. For the first 3 to 5 years of his life, my MS was externally invisible. I didn't appear to have any physical problems that made me different from other mothers.
By the time my son was in kindergarten, I'd begun to use a cane for my balance and gait support. At the same time, I became more of a presence in the lives of my son's friends, who were becoming more a part of his life.
I didn't want my son to be embarrassed by me. I wanted to be sure his friends would feel comfortable around me in public or in our home. After thinking about how to accomplish this, I knew I had to directly confront the issue.
Early in my son's kindergarten year, I asked his teacher if I might come to her class to talk about my MS. She was delighted.
The first time I visited Joshua's classroom, I walked in with my slightly unsteady gait, using my cane for support. I realized the first question the children would ask would be, "Why do you use that cane?" I told the children that I used a cane because my legs didn't work very well and the cane helped me walk with more safety and comfort. They asked, "What's wrong with your legs?"
I'd thought at length about how to explain MS to a classroom of 5-year-olds. The answer I found has helped me explain MS to people of all ages.
I asked the children if they had anything in their homes that used a cord that plugged into the wall. I got an enthusiastic show of hands and loud calls of, "Yes-a lamp, a toaster, a radio."
I then asked the class if they knew why plugging the item into the wall made it work.
Many of the children knew the answer was electricity. For those children who did not understand electricity, I asked the class if their parents had ever told them not to put anything into a plug. Every child had experienced that.
Most had been told they could get hurt if they did. I told them that it was electricity that made the lamp, toaster, and radio work. Now, we were all on the same page.
The next topic was the cord that had to be plugged in so the electricity could get to the lamp. I asked if anybody had a lamp with a cord that was broken.
Immediately, a little boy said, "We had a toaster with a cracked cord." He continued, "Sometimes it worked fine, but most of the time it just burned the toast. So we got a new toaster."
"You've just described MS!" I responded. They seemed puzzled. I continued. "Think of our brain as where the electricity comes from and think of the cord as the inside part of our body that carries the electricity from our brain to the part of our body we want to move." I explained that the wires inside the cords were okay, but the frayed covering was causing the wires to not work at their best. There were short circuits and sparks. In my case, the electricity, or the signal, did not get to my legs and feet very well because my "cords" were frayed.
To end the explanation, I told them "My legs are fine and my wires are fine, but my cord covering is frayed!" Then I talked about the little boy and his toaster. I said, "Sometimes my legs work and sometimes they just `burn the toast,' but I'm sure that I won't be replaced by a new mom for Josh just because my cords are frayed!"
I was happy to explain to Joshua's friends why his mom was a little different from other moms. He actually became somewhat of a kindergarten celebrity.
Helping our children have positive feelings about our MS is crucial
for them and helpful to us. Next time, I'll talk about how I helped the
children not only feel comfortable with my canes, but actually anticipate
seeing which of my numerous canes I was using. I'll also share some of
the mistakes I made with Joshua and his friends as he got older.
© 2002 Real Living with Multiple Sclerosis