Two Children, Two Vastly Different Experiences of Middle School

First days vary for girls in 6th and 8th grade, as one has Rett syndrome

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by Jackie Babiarz |

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I have two middle schoolers. My oldest daughter, Cammy, is in eighth grade. My younger daughter, Ryan, is in sixth grade. They’re in separate schools because Cammy, who has Rett syndrome, requires more services for her education than our home school provides.

Cammy’s condition affects her entire body. Cognitively, she understands everything, but she’s locked inside. She’s unable to walk, talk, and use her hands. She relies on an individualized education program (IEP), her special education teacher, a one-on-one aide, therapists, and nurses to provide her access to her education.

I give Cammy’s staff a several-page “About Me” book about how to care for and interact with Cammy. Ryan, my neurotypical child, doesn’t go to school with a guidebook.

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A few aspects of their morning routines are similar, but their school days are drastically different. While they both eat breakfast, Cammy’s goes through her feeding tube. They both get their teeth brushed, but I brush Cammy’s. Ryan might rifle through several outfits to pick one that suits her mood. I generally hold up two choices for Cammy to pick from with her eyes because of my decision fatigue.

Ryan enjoys styling her own hair, while Cammy is stuck with me putting it in a ponytail or half up. They both take a bus to and from school. Ryan walks onto a large bus and chooses her seat next to a friend. I push Cammy onto the lift of her bus, where there is one spot for her wheelchair.

At school, Ryan has a locker in the hallway, which she accesses between classes. She walks to each class, raises her hand to participate, and fulfills all the lessons like a neurotypical child should. She’s in the general educational classrooms most people are familiar with. Ryan chooses where and with whom to sit at lunch. Nothing about her day is adapted.

On the other hand, Cammy spends part of her day in an excessively large classroom that can fulfill her requirements and those of her classmates. There are mats where students are stretched, several assistive technology devices, and large tables that serve as desks. The walls have pictorial aids to assist students with everyday routines and directions.

Sometimes more adults are in the classroom — aides, therapists, and other specialists — than students. Cammy is wheeled to her other classes by her aide. She has a preferred lunch area. Ample adaptations need to be made for Cammy to receive an education.

I know that both my children are in exceptional hands at school and on their buses. On some days, like the first day of school, it hits me in the face how drastically different their experiences are. Ryan reported every single moment of her first day, while I only received glimpses of Cammy’s as I relied on her team to report back. But there’s one thing they have in common: Their school year is underway.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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