Return to Articles Index

Rusty's Ramblings

Published:
1-July-2005

By Russell Turner

Those of you who have been receiving this newsletter know that my rambles usually are about my daughter Kari. She’s my oldest at 10 and she has Type 1 juvenile diabetes. This month I’m going to write about my youngest daughter Kristin. She’s 8.

Kristin has Tourette’s Syndrome. This is not something we advertise much at all. Kristin doesn’t want people to know she has it so they won’t notice her tics. Kristin was diagnosed before Kari so she’s been dealing with this longer than we, as a family have been dealing with diabetes.

I say she’s been dealing with this for a reason. She has been dealing with this by herself since she was 6 years old. The only time I ever spoke to Kristin about her Tourette’s was the day I told her she had it. She had been waking up at night with severe headaches. I took her to a pediatric neurologist. It took him about 30 seconds to diagnose her. I didn’t want to burden a 6 year old with a medical condition that nobody could do anything about anyway so I waited about a month to tell her. We agreed to tell the immediate family and no one else.

Two years later I’m lying in bed with her. I’ve been singing to her and blessing her at bedtime since the day she was born and it has become a nightly ritual. During this ritual we often talk about things that haven’t been discussed during the day for whatever reason. She brought up the subject about what I notice. I told her I notice everything about her because I’m her daddy. From there for the first time in two years the subject of her Tourette’s came up. I asked her if anyone at school ever noticed her tics. She told me one time just recently a friend of hers was walking behind her and she didn’t know it. One of Kristin’s tics is an obvious side step to the left with a little hiney wiggle thrown in. When she did this her friend said to her “that was weird”. Fortunately that was the end of it.

At that point Kristin began to describe to me how she has learned to disguise her tics while she is at school. One of her newer tics is when she sort of hugs herself. She explained to me how she keeps her hands in her lap when seated at her desk. “That way daddy when I tic my desk stops my hands from moving too far and nobody can see it”. She said this same tic presented a problem in the lunchroom. She can only put one hand in her lap; the other has to hold her sandwich. She went on to describe how she can control her facial tics for a short while when she is face to face with her classmates in a small group. “I don’t want anybody to see them when we’re real close”. Then she started to giggle and told me how she can allow her toes to tic to their hearts content because nobody could see them while she was wearing her shoes. She went on to explain several more techniques she has developed all by herself to disguise her condition.

Needless to say I felt miserable about my complete failure to help my baby. I had been thinking all along that by not saying anything or talking to her about it I was making it easier for her. In fact I was just making her develop ways of coping all by herself. Please don’t make the same mistake I made. Talk to your children about everything. Give them the opportunity to express whatever is on their mind whenever they feel the need. Coax them, or use conversational gambits that allow for anything to come out.

Kristin and I now speak regularly about her Tourette’s, how she feels about it and different and sometimes fun ways to cope. She still giggles about our little secret.

One of her more endearing tics is that she will nod her head yes and murmur uh huh at the same time. People who don’t realize her condition think she’s just the most agreeable little girl. This tic is especially noticeable when she is reading. One of my greatest joys is driving down the road with Kristin in the back seat. I can hear her behind me murmuring uh huh, uh huh, uh huh as we travel down the road. I know she is back there reading a Harry Potter book, content and feeling safe enough to let em rip.

God I love my kids,
Rusty

top