Thursday, January 20, 2011

OT for ET

Today, when I dropped my daughter off at school, her teacher explained her plan to help my little Leah. The goal is to help her without drawing attention to her Essential Tremor shake. Essential Tremor is inherited and causes people to shake. It is not something that they can control and when they concentrate on stopping the shake, it can actually get worse. So, for my four-year-old, learn to write letters is a challenge. When she learns new letters, her shake is worse. She has a happy attitude and doesn't talk about it much. The doctor said she seemed to be unaware of the shake that is in both hands but I know she knows. Her Dad has a milder case and we told her she is just like her Daddy.

While painting her nails this weekend, I accidentally said, you may not be able to do this when you are older. She replied "because of my shake." I backpedaled but maybe not so well. Strengthening my filter will be necessary to not draw attention to her disorder.

At school, the Occupational Therapist will observe her without drawing attention to her condition. Then, they plan to slip in the tools to help her with her shake -- weighted pencils, etc. I will be buying some of the tools for home.
Here is to an interesting journey.

Saturday, January 8, 2011

Finding your happy place

 Leah's picture of winter with icicles on the house, snow clouds, snowflakes and snowballs. She wrote "Winter" across the top. Her shake is evident but her letters are legible.

While talking with my mom on the phone, I was discussing the struggle and the challenge my daughter had before her. I was coming around to acceptance after a short bout with grief and shock at the fact that I could not fix this for her no matter how hard I might try. We were discussing the drawing she made in pre-Kindergarten that is posted above. With slight sadness, I said something like she will never be able to make her circles perfect without her shake. Just then she peaked around the corner from another room and I realized how wrong I was in making that statement and in failing to frame her ET with a positive attitude for the rest of her life. She believes in magic, Santa Clause and that everything is still possible and it is.

I will never forget those sweet eyes peeking around the corner looking at me as if to say, "Are you talking about me?" I decided I could not take the chance of talking about it around her and especially in those terms.  It weighed heavy on me as I pondered what it is that I could do? How could I foster a positive attitude, especially, when you are working with a condition that gets worse the more you try?  I remember the doctor saying the harder you try to stop the shake, the worse it gets. As the doctor is speaking to us, I noticed her own hand shook from an ET tremor.  I said I guess she will not be a surgeon and the doctor said that is why I am not a surgeon.

The next morning I woke up to my little girl wanting to have her snow globe story read to her. With the pillows up against the wall and the two of us on her bed reading, we talked about school. I simply told her that I had a secret to how to do well in school -- take deep breaths and have a good attitude. Also, when she got frustrated she should go to her happy place, which she decided was her bed. Later that morning when she was leaving for school I asked, "What are you going to do to day?" She said "Take deep breaths when I get frustrated and go to my happy place." She left with her bright happy attitude beaming as she left for school with her dad and twin brother.

A couple days later while I was making dinner, she said to me, "Today, I went to my happy place. When I got frustrated with my brother, I went to my happy place."

"Did that make it better," I replied.

And she said, "Yes, it made her happy."

I am glad that it worked for other situations besides for ET.  Now, I will be researching which weighted pens and grips that work for children. Children who write in big bold colors with crayons and markers.  Any suggestions? Please post a reply or send an email to essentialtremor@hotmail.com

Thursday, January 6, 2011

Coloring Outside the lines ~ the journey with ET begins.

Coloring Outside the Lines is one parent's journey raising a child with an Essential Tremor or ET. I used to think that ET was a cute little alien from the movies until last week. My husband and I sat in a pediatric neurologist's office hoping our daughter did not have brain cancer. Our pediatrician had told us she had an Intention Tremor. A quick internet search later and brain cancer or a brain lesion were the best we could hope for.

After the neurologist tested her by having her stack small cones, line the cones up, and write her name, she asked my daughter to draw a stick person. Leah replied in the cutest little girl voice, "that's hard." She tried to draw it with a distorted circle and mangled legs an arms. She finished it with a smiley face. She is a bright and happy child who loves to make other people happy.

After testing my husband, who had a slight tremor as he raised his hands above his head, the neurologist diagnose my daughter with Benign Familial Essential Tremor. Naturally, we asked what we could do only to find out that there was not much that we could do for her. Acceptance and accommodations was all she said. I asked, how do you do that? By providing weighted pencils and supporting her. Also, exposing her to keyboarding early to accommodate her tremor.

Most of the information on the web is for older people not four-year-old little girls. The little information that is available is either informative in nature or not very positive.

My hope is that there are more parents of young children out there with ET. Parents who have helped their children overcome ET. Maybe you had ET as a child and overcame the tremors you experienced.