Messy eaters and sloppy handwriting

Recently, in a meeting I sat next to a man in his 40s or 50s asking the moderator about what to do at a dinner meeting if you are a messy eater. As the moderator provided her response, I started watching the man. Since realizing that Essential Tremor is often undiagnosed, I wondered if this man had a tremor. As the meeting progressed, it became obvious.

He would hold his non-tremor hand with his tremor hand after he was done trying to execute an activity, even though his hand was not trembling. When he would write, he would pause sightly before beginning to write in an attempt to control the mild tremor. He wrote with concentrated effort.  While his tremor was mild, he seemed to be accommodating it unconsciously.

After the meeting, I asked if he had a tremor. He said, I am coming to believe that I do have a tremor. I explained that it may be essential tremor and that it appeared to be activated when he was executing an activity like writing, etc. I explained that my daughter had ET and so did my husband. I referred him to the International Essential Tremor Foundation website as a resource and explained that he may have options. He started to explain that many people in his family had a tremor; his handwriting was terrible, and he was a messy eater. I tried to reassure him that he was not a messy eater or a poor hand writer. He simply had a tremor that made those tasks more difficult.

At that moment, I was grateful my daughter had been diagnosed at an early age. This wonderful kind man had simply accepted that being a messy eater and having poor handwriting was a personality trait that he was either unwilling or unable to conquer. Essential Tremor is not a reflection of poor self care or carelessness. People with ET have an amazing inner strength and resilience that is executed everyday to overcome their tremor in completing the smallest of tasks.

This experience was important to me because ET should not be a reflection of the personality, simply a challenge that needs to be addressed. Our family does not talk about Essential Tremor and I am not sure that my daughter remembers that she has a tremor. She is becoming more proficient in her writing everyday and actually she is beginning to color inside the lines.

It is not all roses. Both my children's artwork seems less advanced compared to the other children. Cutting is extremely challenging for them. It is jagged and when they try to cut in a circle, it is worse. Yet, as long as the teacher understands their challenge and respects the effort they are exerting in attempting to complete their work, the sense of self-esteem is not damaged.

Someday accommodations and acceptance may not be enough but today it is enough.

Resilience comes naturally.

Resilience seems to come naturally for children. They think nothing of falling down a million times to learn how to crawl, walk or any number of activities.

Since the Essential Tremor diagnosis a year ago, my five-year old Leah has continued to learn to write letters and numbers. Her shake is less noticeable as she becomes more proficient at writing. Our neighbor is a neurologist and at a dinner party, she explained that initially, her shake was more pronounced because she was concentrating so diligently.

We hardly notice her shake in everyday life. Yet, there are days when she is a messier eater than most five-year-old children or her exhaustion from the day makes her writing a bit shakier. Also, she shakes when she tries to cut paper. Consequently, her artwork is a bit more jagged than the other children. 

Recently, the Kindergarten teacher had an interesting observation. Leah's twin brother is in the same class. Their teacher mentioned that Leah's brother also seems to shake when holding a scissors. He has not been diagnosed as it seems unimportant at this point.

When the shake is present, she works through the shake without mentioning it or even noticing it. Sometimes, she simply needs to take a short break before completing her task or homework. Her teacher understands this and simply allows her to complete it another day. The shake is most noticeable when she is trying to make beaded bracelets, which is a common activity for girls this age.  I watch her try and try again. Her resilience is only exceeded by her concentration. After some time, she often enlists her friends to help her. It never discourages her spirit. 

Despite these challenges Essential Tremor has been a minor annoyance for us. Thankfully, we have had wonderful teachers who have been helpful and understanding. They do not draw attention to her shake and she has thrived. 

Hopefully, the shake does not progress, or if it does progress, may it progress slowly into old age.

Little box of tools

Last week, I visited my daughter's school and her teacher was quite excited to show me the progress they made with my little sweetie.

The box was a magnetic school pencil box. On the outside of the box, the OT had drawn a picture on the box with a scissors, a bracelet, a gel-type mat and a weighted pencil that she made especially for her. The pictures indicated when she was supposed to use each tool. The hand weight is for cutting with scissors or when she writes over her head, which is a common trigger for ET tremors. The mat and weighted pencil are for when she writes her letters and words. Despite being four, she is learning how to write words phonetically.

The  weighted bracelet looked like a small, light hand weight that you would use to exercise. It was nothing fancy. In fact, I wanted to bedazzle it so that my daughter liked it better. I am not a bedazzler  but my girl likes things that glitter, shimmer and shine.

Leah uses the weighted bracelet to cut a circle with a scissors and when she is writing on the blackboard, and yes, they still have one of those in the classroom that each student uses to sign their name when they arrive each day. She uses the hand weight to reduce the shake when she cuts paper. Teacher Sara was so impressed with the results. My little girl cut like there was no wiggle, jiggle or shake.

The Velcro weight is on her pencil and it is used for when she writes. The last piece in her little box is a gel mat that allows the paper to stay in place. Teacher Sara was amazed at the difference in her writing and the progress she was making. It was rather cute that one of the other pre-kindergartners picked up the bracelet and gave it a try. The little girl's mom put it back in the magic toy box. We also have a weighted pencil at home now too.

Our doctor sent over a diagnosis to allow the OT person to help her now and over time as she needs it. We are coming to accept it and Leah is aware of it but does not let it rule her life. She calls it her shake. When we ask her who she is like, she says her daddy.

Thanks to Teacher Sara, my little girl was diagnosed earlier than most people. My husband was not diagnosed until he was in the office with my daughter's doctor. One of the goals of this blog is to connect with people and parents who are dealing with this or have dealt with this. There is so little information on ET in children that it can be challenging to parent a child with ET to help them flourish as they learn and grow. I encourage you to tell your story in this blog and join the conversation.