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.

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