Moving on to Middle School and High School & Learning Life Skills
By Laura Tofinchio, Shelton, CT.
(Ontheotherhand.org note: this essay appeared in the Spring, 2006 issue of 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.)
My daughter Brittany was born missing both her hands and part of her arms below the elbow. She has always been independent, but now she faces true independence. As I reflect on her middle school through high school years (ages 13 through 17), I would like to share with you some of the things we have learned, as well as her challenges and triumphs.
Transitioning from Elementary to Middle School
Going from elementary school (K through 6th grades) to middle school (7th and 8th grades) was a major transition for Brittany. Most children are nervous about the new environment both because in middle school they switch classes and they are not familiar with the school's layout. Brittany's concerns went beyond that. For the first time in 7 years, she would be entering a school where she would be meeting new kids. We weren't sure how students would react towards her. Quite frankly, I was more nervous than she was. As she was approaching the end of the elementary school, I began to toughen her up. We talked about how to respond to kids who say unkind things, and we discussed the fact that not all kids' disabilities can be seen. Fortunately, she did not have any significant negative feedback during those years.
Shortly after school started, I requested a meeting with her teachers, mostly because I didn't want her teachers to "walk on eggshells." I wanted them to understand that she was not to be treated "special", that she would ask for help if needed, and that they could feel free to ask her any question they had on their minds. I emphasized that she would not be insulted or feel awkward by their questions. This meeting helped the teachers to relax and be comfortable around Brittany, and also allowed them to ask me any questions they had.
Tackling Logistics: Carrying Heavy Books
One of the problems Brittany experienced was carrying her books. The books that she had to take home were quite heavy on her back and caused her back pain. Not having hands to hold them in front of her, all the weight was on her back. As a result of the meeting with her teachers, Brittany was given a second set of books to keep home so she would not have to carry them back and forth to school.
As time marched on, Brittany attended various dances the school had, interacted with other students with no problems, and lived life like a "normal" teenager. My only frustration with the school was that they did not place her correctly in math class. Her math grades were excellent, yet she wasn't placed in Algebra in 8th grade. Since I thought the school knew what they were doing plus Brittany was a little nervous about taking Algebra, I decided not to say anything. BIG MISTAKE!!! As a result, she was bored in her high school math classes. Since she is going to focus on engineering in college, she lost the opportunity to take calculus in high school, which was a set back for her. My advice to all parents is: if you feel your child can do the work, then challenge the school and fight for your child. You don't realize how much your child's placement in high school can affect her opportunities in college. Since that time, the same school tried to place my son incorrectly in high school. I challenged his middle school, I won, and my son is doing excellent in high school.
Life Beyond School
Life outside school became more complicated and challenging. Prior to Brittany's 16th birthday, my husband and I began to teach her to drive. We found that she had no problem securing the steering wheel and moving the stick from park to drive. Soon I was teaching her along with the driving school. Like many parents, my hair got grayer and my foot kept reaching for what I called "the invisible brake" on the passenger's side. The education portion of driver's education was no problem - it was the driving portion that could have been a problem. We were very fortunate that the woman who owned the driving school had worked with various students with disabilities and was willing to go out with Brittany to see how she did. We were quite thankful that we gave her driving experience prior to her sessions with her instructor. This experience helped boost Brittany's confidence, especially since she was nervous driving a different car that did not have the same kind of steering wheel she had. Her steering wheel had multiple bars going from where the horn is to the wheel, allowing Brittany to move the wheel from the inside. The steering wheel in her instructor's car did not have the same configuration, which made driving a little more difficult. By the time driver's education was over, Brittany did very well and was ready to take the test. The department of motor vehicles said that she had to go through the handicap division. We were totally opposed to this because they would classify her and try to evaluate her for special devices on the car. She was quite capable of driving without special devices, and we felt that she shouldn't be restricted to driving with devices. We contacted the owner of the driving school. She then contacted someone she knew at DMV who was able to take Brittany for her test. As a result, she got her license without disability restrictions. My advice to anyone going through this is to make sure that the driving school has worked with kids with disabilities and is supportive of them. If you have that, the owner will go the extra mile for you if you need it.
Another important factor is making sure your child drives everywhere during the time he has his permit. Brittany was much more seasoned than many of her friends. We took her on the highway, the back roads, and anywhere else we had to go. As a result, she was quite comfortable reading signs, going where she needed to go, and even getting lost at times.
Another consideration was the car she had to drive. We put a cover on the steering wheel that had ridges so that it was easier for her to hang onto the wheel. We had to make sure she could reach the ignition, could manipulate the console, reach the radio, and handle her seat belt. Some cars were more of a challenge for her than others.
Taking on Responsibility
Life definitely changed after driving. Brittany was handling money more frequently because she was going out with her friends to restaurants, movies, the shopping mall, and the grocery store. Yes I did say the grocery store. One of Brittany's weekly chores was to make out a grocery list and do the grocery shopping. This activity served several purposes. It made her conscious of store prices, taught her a skill that she would be using when living on her own, allowed her to experience challenges at a time when I was able to advise her, and got her out into the public. Her presence in the public was not only beneficial to her, but also to the public. On one occasion, a woman saw her shopping and approached her. She stated that she was so happy to see her and asked Brittany if she could give her a hug. Brittany did not know her, yet she agreed. Brittany didn't understand at the time what had happened, but I suspect that the woman either had a child or grandchild with a disability and seeing Brittany must have given her the faith that the child was going to be okay. On another occasion, I happened to go with Brittany to the grocery store and noticed that the deli employees and the fish employees were all saying hello to her. When Brittany went to another part of the store, a gentleman from the deli counter told me how amazing Brittany is, and that I should be very proud of her. Our children were given to us for many reasons, some of which, I believe, are to instill faith in others and make people appreciate what they have.
Regarding the handling of money, we found that a man's bifold wallet was best because it opened wide and was long enough to balance on a counter so that she could flip through the dollars. She never liked handling change, so she would let that drop to the bottom of her purse. I have made other suggestions to her for managing the change, but the bottom of the purse is what worked for her.
When Brittany went with us out to dinner, we always would cut her food. So that she wouldn't get embarrassed, we would swap plates, cut her food, and then swap the plates again. This worked well when we all went out to dinner as a family, but now that she was becoming independent, she needed to eat independently. Some foods she was able to cut, and she was comfortable asking some friends to cut her food for her. When she was in a situation where she didn't want friends to do it, she would ask the waiter/waitress to have the food cut prior to it being served. This eliminated any embarrassing situations, and also allowed her to order whatever she wanted without being concerned if she was able to cut it or not.
The next challenge was shopping at the mall. Since I didn't function well as a bank, I felt that it was time that I set her up with a checking account and ATM card. Although she wasn't yet 18 years old, I was able to setup a checking account as long as my name appeared jointly with hers. By doing this, I was able to teach her about money management, how to balance a checkbook, how to use the ATM machine, and also how to use the ATM card to make purchases and pump gas. Brittany earned allowance by doing chores at home, money by working over the summer, and she received money from birthdays and holidays. This gave her an opportunity to control her spending and understand the consequences of spending too much. Thanks to the Internet, I was able to login to the bank's website and observe her spending so that she didn't get herself into trouble. The only problem she ran into was with our bank's ATM machine. It wasn't what we call, "Brittany friendly", because the slot the card goes into has an indentation where the card must be pushed in and pulled out. She had no trouble pushing it in but couldn't pull it out. She avoided using that bank's ATM. However, we did come up with a solution: we attached one of those small black paper clips that fold down over paper. We clipped it onto the card, which allowed her to remove it independently. I also notified the bank, because by law the ATM is supposed to be accessible to all people with disabilities. Brittany's disability happens to be one they didn't plan for.
Along with grocery shopping, Brittany had to alternate setting the table, doing the dishes, emptying the small garbage cans, and doing her laundry. The purpose was to allow her to earn money, which enhanced her money management skills, and for her to learn life skills. Seeing the challenges our children experience at home allows us to assist our children with adapting, correcting mistakes, and recognizing their limitations if there are any. Once children move out, it is difficult for parents to advise, since they aren't there to witness. For example, teaching Brittany to do laundry before she went to school was challenging; she had trouble reaching the clothes at the bottom of the top-load washer. She would have to get a step stool and then put her head in the washer to grab the clothes. I am sure there are devices she could use to get the clothes out, but this worked for her. It also taught her - and us - that a front-loading washer is more practical. Handling the front-loading dryer was no problem.
Emptying the garbage cans was also difficult, because she had to put the entire garbage can into the waste bag. She was unable to hold the bag with one hand while emptying with the other. Again, this was another life skill that she had to figure out.
To help with the dishes, Brittany had to work the sponge to clean them in the sink so that she could put them in the dishwasher, and then she had to stand on chairs to put them away when the load was clean. Once again, she did it her way and got them cleaned. If the dishes that didn't go in the dishwasher weren't cleaned well enough, she would have to do it again with me watching so I could determine where she was having the problem.
Much has happened during this time period and we all learned a lot. I share all of this with you to reinforce the importance of communicating with teachers, fighting for your children, and teaching your children valuable life skills before they leave home. Leaving home is a major transition and will provide many challenges. The fewer new challenges that they have to deal with, and the more things they are familiar with, the easier the transition will be for them. As far as the parents nothing is easy when your child leaves home and nothing can prepare you for it. So enjoy having them home, because before you know it, you will be walking in my shoes.
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 18 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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