GEMSS would like to thank Emma and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!
Emma is an enthusiastic 11 year old who loves to ask questions. As a 6th grade student in rural New Hampshire (USA), she is in regular classes. She has two older brothers and a sister. She is very comfortable in her home environment and loves to play with her pet dogs and dolls. “That is when she is happiest,” says her mother, Lynn. She likes listening to hip-hop and country music and is learning to play the clarinet. She learned how to ride a bike this year! Her older sister helps provide Respite to the family. She gets along well with the customers in her mother’s beauty salon and engages them in conversations.
Emma was diagnosed with Prader-Willi Syndrome when she was 18 months of age.
Emma has supports to help her keep on task and learning during school. Part of keeping her safe in school is making sure she can’t access other people’s snacks and lunches, as “food-seeking” is a daily struggle. This has to be explained in detail in new school situations, Lynn feels. For example, telling the school-based team that she is a food-seeker is not enough. Details such as ‘she will go into the garbage or even dumpsters to seek food’ really helps to drive home the importance of safety monitoring at all times. Another example of explaining the food-seeking behavior in detail is that 'Emma will have a hard time focusing in class if there is popcorn popping in another classroom'.
One day, Lynn read some negative comments in the communication book that travels between home and school, saying Emma was “defiant, not focused, and not paying attention.” Lynn did some great detective work by finding out what was happening in the school. She learned that snacks were taken out of all the children’s backpacks to keep them from Emma. However, they were still contained in a corner of the classroom, and even though Emma didn’t seem like she saw those hidden snacks, she did know exactly where the food was and couldn’t concentrate on her work with the competing food in the near environment. So, by changing the environment (locating the food in a distant classroom), the team was able to eliminate the ‘behaviors’ and the next day, all was well with Emma.
Academically, Emma is most challenged with math, social studies, and science, as some of the concepts are hard for her to grasp. Comprehension is an issue but her team helps her to learn how to problem solve. For example, if Emma has to know the population of a state, they might help her learn how to search for the answer by looking for a sentence that has the word ‘population’ in it. On field trips, Lynn says the other students help her to understand the tasks and they seek help if they are having a hard time conveying an idea. Emma is happy with her social relationships and says that “everyone is her friend.”
Medically, a challenge in school has been a ‘narcolepsy-like’ disorder which made Emma fall asleep in class. Now she is on a medication to help her stay alert and awake but they had to do some problem solving to figure out this issue.
Lynn has some advice for other parents and teachers and suggests to all that you, “expect the unexpected” as bumps in the road will happen. She says it is hard to find people who feel comfortable with Emma but she uses her resources and her older daughter has been exceptional in helping out. Lynn says that teams need to be patient and work together to make sure that the children are safe and comfortable in school. Using resources such as outside experts to help the team is fine with Lynn – whatever it takes to make sure people really understand her daughter’s needs!