Like most parents of a child with special needs, I had a hard time thinking about the future. The problems of each day were enough to overwhelm my husband and me. Since just getting out the door to school every day was such a struggle, my imagination didn’t stretch to her having a job.
When it came time for my daughter, Laura, to start working, I knew she had some great skills to use. She is outgoing, helpful, eager, and friendly. She learns new tasks pretty quickly just by watching someone do them. After years of speech therapy, she can speak well enough to make herself understood, and has the self confidence to talk to new people. I knew she had the “right stuff” to do the job.. However, Laura has Smith-Magenis Syndrome (SMS), which brings with it many problems including hearing impairment, severe sleep disturbance, significant learning problems, hyperactivity, and speech impairment. I thought those issues could cause problems at work, but could probably be dealt with.
My BIG concern was the emotional/behavioral outbursts that are also a part of SMS. When a child with SMS is unhappy, the whole world knows. Loud, prolonged tantrums can be provoked by anything-fatigue, change, fear, or just by “not getting their way”. Although these tantrums appear to be “spoiled brat behavior”, they are actually caused by this genetic syndrome. Typical discipline techniques (punishment/reward) don’t help them through these “fits” because they lose control of themselves, and actually CAN’T get themselves to stop. Parents and teachers have to work together to come up with unique strategies for helping them to calm down.
We knew we had to be very careful when choosing a job environment for Laura. Her OJT teacher (Libby Fischer-Osborne) and I had talked about possible job placements, and settled on volunteering at a retirement village. Laura told us (with words) that she didn’t think she would like that job, and then she told us (with actions) that the job wasn’t working out for her. Her behavior told us we couldn’t continue to try. Laura kept saying she wanted to work at a toy store or Chuck E Cheese.
The school district had already talked to Toys R Us about hiring one of their students, but they had not been successful in placing a student there. Since it was so important to Laura, Libby decided to go there anyway. She spoke to a manager about a possible unpaid internship so Laura could learn new job skills in an environment that was positive for her. When Laura went for her interview, she told the manager, “Toys R Us would be the best job in the whole world!” She showed her wonderful personality, they also saw some of her limitations. James, the manager liked her, he liked her comment about “the best job in the world!!” She got the job! The manager then said, “If someone works in my store, I think that they should be paid”. She was originally hired for seasonal holiday help. In January, however, they decided to keep her on the payroll. Every Monday afternoon, she went and straightened her department, restocked all the batteries in the store, and sometimes helped customers. She would say “the hardest thing is when everybody wants a “Tickle Me Elmo” and we don’t have anymore, and they say, Laura, when will you get some in, and I say I don’t know, and Mom, that is so frustrating!” She was very proud of the customers she helped and counted how many there were in a day. The managers and other employees were always very friendly and helpful. They saw her as a vital part of their family. After Laura’s 1 year anniversary at Toys R Us she earned some paid time off.
Laura had a job coach for Toys R Us and also for her hospital volunteer job although they worked on fading more and more from her every week. They would coaching her along not just in the job itself, but employee expectations (e.g., don’t go get your paycheck until you clock out...no breaks unless your boss gives you one, etc). They expected her to call them and her boss if she is ill. She would bring a backpack to school (she was still attending high school classes) packed with her uniform, and an umbrella in case it rains (she found out the importance of that the hard way). On hospital days she would need her student ID and money to ride the DART bus. She learned to ride the city bus from school to the hospital and then had three transfers that she successfully completed to get home from the hospital in the afternoon.
Laura also had two other jobs during the summer school job program. She worked at Target (receiving a commendation from a customer for helping him and giving great customer service), and also at the RISD‘s Camp Rich, where she worked as an assistant to young children with disabilities. Laura learned to write out a plan for what to do if she feels stressed. She has never had a “tantrum” or even a need to use her plan at work. She takes pride in her work. She now works at a large grocery store chain and loves the work and the interaction with the customers. Each job placement (even the one at the nursing home that didn’t work out) has helped us learn more about Laura’s future in the workplace. Now I CAN imagine her future.
P.S. to find out more about Smith Magenis Syndrome, go to this website: www.prism.org