With Rett Syndrome, Changing Schools Involves a Learning Curve

How parents and school staff work together to address a child's unique needs

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by Jackie Babiarz |

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I was recently reflecting on the moments when my oldest daughter, Cammy, who has Rett syndrome, transitioned to each of her new schools — first from early intervention to an early childhood center when she turned 3, then to a new building for kindergarten through fifth grade, followed by the shift to middle school, where she is currently an eighth grader. 

During each of these transitions, I received at least three calls a week from the school, mostly from the nurse. It was aggravating and overwhelming because, selfishly, I just wanted a break from all of the medical concerns. However, the numerous calls and questions were both understandable and necessary.

I received three main types of calls during these times. The first was when I answered and heard, “Everything is OK. I just had a question,” or got a message from the nurse that started with “this is not an emergency. I just had a quick question for you. Call me back when you get a moment.”

At other times, the call described how my daughter looked or how she was behaving, and the staff left it up to me whether I picked her up. In times like those, she was safe and stable, but something was irritating her. No matter what the school staff tried, she remained uncomfortable.

Finally, there were times that were nonnegotiable, during which Cammy was unwell and needed to be picked up.

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Working With My Daughter’s School Team to Alleviate Her Stress

Ten years ago, Cammy was the first preschooler with Rett syndrome her teachers, aides, physical therapists, occupational therapists, speech-language pathologists, and nurses had worked with. She was diagnosed only a year earlier, so we were all learning about her unique needs together. It seemed I was constantly answering the phone to field questions or picking her up from school because she felt unwell.

I’d been told by other special needs parents and veteran special educators that it would get easier and the calls would lessen as the school staff learned about Cammy and as she built up an immune system to fight school germs. However, it didn’t feel that the load would lighten.

Having phrases like “risk of choking” or “risk of seizures” in your child’s individualized education plan — which is necessary due to the symptoms of Rett syndrome — is always at the forefront of school officials’ minds. The possibility of having to call an ambulance is always a concern.

Now that I’m back to teaching after spending 14 years raising my daughters when I wasn’t working, I feel so deeply for the medically fragile child, the parents, and the school team as they juggle these concerns, too. Raising Cammy has made me much more understanding and empathetic to students with medical conditions and their parents.

It’s all a learning curve for parents and school staff. A big reason I love Cammy’s current special education program is because she’s had the same teacher and team for a couple years. I believe it takes a full year for school staff to truly get to know my child, and also for my child to feel comfortable with them.

Cammy has been in school for 10 years now, and the calls have definitely decreased because the school staff members have had consistent chances to truly get to know her. And for that, I’m grateful.

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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