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School Age

Looking back in time … Moving on from Daycare to the Elementary School
By Laura Tofinchio, Shelton, CT.
(Ontheotherhand.org note: this essay will appear in the Helping Hands Foundation Newsletter. Laura Tofinchio was kind enough to allow us to post the essay on this site. The essay has been modified slightly for this format.)


Intro
In this essay, I discuss some of the triumphs and challenges that my daughter Brittany has experienced as a congenital bilateral, below elbow amputee. In other words, my daughter Brittany was born missing both her hands and part of her arms below the elbow. Brittany is now 19 years old. The years I am going to reflect on are from age 6 through age 12. When Brittany began elementary school she started in the first grade. She attended kindergarten through the daycare center, which will be covered in another article.


School Experience
Before Brittany was ready to move on to first grade, I met with the elementary school principal. I shared with her Brittany's experiences and my concerns. As a result, the principal allowed me to observe each first grade class to determine which teacher I felt Brittany would work well with. The principal gave me her recommendation but also allowed me to make my own assessment. We both agreed on the same teacher. This teacher was quite innovative and open minded, which are what you need for a child who has to adapt to her environment.

When doing math, Brittany was given an abacas for counting since the children normally use their fingers. Brittany could have also taken off her shoes and socks and used her toes, but she chose not to.

When it was time for cutting paper, Brittany used adaptive children's scissors. This was the only adaptive device she needed for school. The school purchased the scissors from Sammons Preston Rolyan. This company has a tremendous selection of adaptive tools such as kitchen utensils, desk tools, bathroom accessories, and so on. You can see the products in their catalog at www.sammonspreston.com. Over the years, we purchased a variety of things on our own, such as knives, forks, cutting board, and adult scissors to name a few.

When Brittany went into third grade, one of the art projects was to make a knitting ball. The students competed to see who could make the largest ball. Because fingers were required for this project, Brittany's art teacher worked with her husband and created a wooden device that allowed Brittany to be able to knit. We were overwhelmed by the art teacher's determination and kindness. Brittany was so excited that she was able to participate. It is particularly rewarding to see the interest teachers take in their students at such a young age. We were grateful and appreciative that Brittany had such wonderful teachers.

The other challenge we had was finding a lunch box Brittany could use. She didn't like the metal lunch boxes and the thermal bags were too narrow for her to get both her arms in to get the food out. We looked around for some time, and finally found a cloth lunch bag that was wide enough for both her arms to fit in.


Clothing and Shoes
For some time, Brittany wore pullover shirts and sweaters, stretch pants, and Velcro shoes because she was unable to button and tie laces. One day she asked to wear jeans. I explained to her that it is important that she be independent. If she wanted jeans, she needed to be able to manipulate a zipper, snap when needed, and button the top button. We provided her with educational dolls that had all those things for her to practice. When she felt she was ready, I took her shopping and told her that if she was able to put the jeans on herself, zipper and snap or button the top button, then she could have the jeans. As a result of her determination, she was able to accomplish this. She was ecstatic, and from that day forward, she never wore stretch pants again.

Her next request was to get sneakers with laces. Once again, I explained to her that she could get a pair if she was able to tie her sneakers. My husband and I worked with her the best we could to show her what to do. The rest was for her to figure out, and she did. Between using her mouth and arms she was able to do it. To this day I couldn't begin to explain how she does it - but she does.

As a result of her accomplishment, the elementary school kindergarten teacher asked her if she would show the kindergarten class on a Friday how she tied her shoes. Brittany was so proud to do this. The teacher emphasized to the class that if Brittany could do it so could they. By the following Monday, 50% of the students who couldn't tie their shoes before came able to tie them

Additionally, to keep Brittany comfortable in her clothes, we regularly visited the tailor. He shorted the sleeves on her sweaters, jackets and shirts. He did such an outstanding job that you would have thought the clothes were made that way. The only restriction Brittany had was that she couldn't wear clothes that had zippers and buttons in the back.


Sports and Games
At home, Brittany was determined to learn how to ride a bike. This was quite a challenge, since she could not grip the handle bars. We never found anything that she could fit her arms into, but what we were able to do was to swap the handle bars the bike came with, with another set that curved closer to the body so that Brittany could reach them. She took a number of falls but was able to steer and eventually ride a two wheeler. Her riding days didn't last too long because when she would hit a bump, the wheel would jump and she did not have the control that most kids have to keep the bike steady. As a result, she fell more times than desired. Eventually she did give it up.

From first grade through high school Brittany played soccer. This was a great sport for her, since she didn't need to use her arms. She loved the sport, it provided team interaction, she did well at it, and it was a great boost to her self esteem.

One of the things Brittany liked to do with friends was to play cards. There were so many games that involved cards. We found a card rack in the Sammons Preston Rolyan catalog that allowed Brittany to place all her cards in the rack where other children would hold them in their hand. To this day, when she plays cards, she still uses the rack.


After School and Summer Camp
Having to work full time, I needed after school care for Brittany and to enroll her in summer camp. She attended excellent programs. They provided sports activities, field trips, and arts and crafts. The great thing about these programs is that it kept her interacting with other children, it allowed her to adapt to whatever she needed to do, and the counselors were great working with her. As with her school programs, I met with the counselor staff ahead of time to advise them and reinforce the importance of Brittany asking for help. I emphasized that they should feel comfortable asking her questions without feeling like they would offend her.


Emotional "Why me?"
As Brittany moved into the 5th and 6th grades, she became more conscious about her dress and appearance. There were times when she would be upset or cry about not having hands, not being able to do what everyone else did, and not being able to wear certain clothes that she liked. When these times happened - which were very few and far between - I would hold her and tell her that it is okay to feel bad or angry. And believe me, there were times when I wanted to cry with her. I also explained that feeling bad wasn't going to change things, so it was okay to feel bad "today" but tomorrow was a new day. I also explained how lucky she was to have her elbows and that life would have been more challenging without them. We talked about children in wheelchairs and other children who were worse off. Usually this helped her appreciate what she did have versus what she didn't. As she got older, we talked about the positive impression she has made on others and how she makes other people appreciate what they have.


Summary
One of the things I found to be important in Brittany's development is communication. Communication was important with the people who would be interacting with her and communicating with Brittany. I always reinforced to others that they should feel comfortable asking Brittany any question, and that they would never offend her by their questions. I also emphasized that she wasn't to be treated special and the importance of her being independent. At the same time, I reinforced to Brittany the importance of her being independent and that if she needed help, she needed to ask for it.

As I mentioned in my last article, if anyone is interested in speaking with me directly, I can be reached in the evenings at 203 925-0446 or via email at . Brittany and I have had 19 plus years of challenges in our lives, and we wouldn't change a thing! We would be happy to assist you in whatever way we can. My best to all of you.

© 2004. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy.
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