by Mrs. Johnston’s 4th grade class at Orcas Island Elementary School
Microcephaly Awareness Day was Sept. 30, and we’d like to tell you about a student, Emma Sheridan, in our 4th-grade class with this condition and how she makes our world a better place.
In case you’re not aware, the word Microcephaly is made of the prefix “micro” meaning small, and “cephaly” meaning head. Babies born with Microcephaly have a skull and brain that did not develop as expected. The heads of people with Microcephaly are smaller than usual. The brains of people with Microcephaly are often smaller, as well. Emma was born with a small skull and brain, and neither is able to grow. Therefore she deals with seizures, learning delays, movement difficulties, and does not speak. Microcephaly can run from mild to very severe but is very rare. Emma’s condition is in the severe category. Only about 1 in 4,000 babies are born in the U.S.A. with this condition (according to the Center for Disease Control and Prevention). The reasons for a baby having Microcephaly can vary, but in Emma’s case it was caused by a mutation on her DDX3X chromosome. There is no cure.
According to her mom, Linda, Emma will never drive or hold a job and it will always be necessary for Emma to have an assistant, even when she’s an adult. However, even though Emma works her way in the world differently than the average 4th grader, she matters to us and is a big part of our classroom community. We wore yellow on Sept. 30 to celebrate Emma and all that she’s brought to our lives.
On a typical day, Emma arrives at the doorway with her adult assistant just after we’ve gotten seated. She reaches for her wrist button that helps her communicate, “Hi.” We all say and wave hello to her (we’re trying to teach her to wave) and then she takes her time to meander through the room, making her way to one of her tables. She has two, one in the front and one in the back because she often likes to see our faces from the front, but other times needs the larger space in the back to move more freely. Emma spends about 80% of her day learning with us. The other 20% is spent getting therapy for her specific needs.
Each day a student in the class is fortunate enough to have “Emma Duty.” When it’s their turn for this opportunity, they get to read to Emma during silent reading and walk with Emma whenever we transition to another location. At some point in the day, they also get to invite another friend to join them in a game with Emma. She loves playing with blocks. Actually, she really just loves knocking down the towers that we build for her. When we’re working on our 4th-grade material in class, Emma is usually working on her goals with her adult assistant or practicing balance and walking by cruising the room, pausing at our desks to say, “Hi.” She never uses her voice, but we know this is what she’s saying. Emma is a very happy girl and she loves her life.
You might be wondering what a person with Microcephaly is able to learn from an environment such as a 4th-grade classroom, but we’re here to tell you that although Emma IS learning, most of the learning taking place is Emma teaching us. In her time at OIES, Emma has managed to learn the following: walking, using stairs, moving from a sitting position to a standing one, using several buttons to communicate her wishes, looking toward a voice when her name is called, knocking over towers of blocks and listening to a friend read a story. She’s quite amazing and very determined. We like to think she’s learned many of the things above because she’s motivated to be with us.
Emma’s physical and mental achievements are stupendous, but they don’t hold a candle to the gifts of learning she has given us. As one student in the class put it, “Emma has taught me that there is a language between people, a language that doesn’t use words. And if you spend enough time with someone you learn their language and then they become your friend.”
We all agree that Emma helps us to remember how fortunate we are to run, climb, read, write, speak and draw. We know we need to be grateful that these things come easy to most of us. It feels ridiculous to complain about having a challenging school task to complete when Emma is unable to do the task but would jump at the chance to learn as we do if she could. As Emma’s friends, we know she has helped us to feel very comfortable around people who are differently able.
The most important thing Emma has brought to our classroom though is helping us remember that we’re all unique and we are all valuable, regardless of our abilities. Mrs. Johnston, our teacher, reminds us to learn from each other and the more diverse our classroom, the more people we can learn from, the more ready we’ll be to work with people in our futures. We feel lucky to have Emma in our class at OIES.