My Daughter Is in Good Hands at Her School

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by Jackie Babiarz |

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At every single curriculum night, parent-teacher conference, and Individualized Education Plan meeting, I cry. But I’m not crying for the reasons others might suspect. Instead, I cry tears of joy and appreciation that my daughter, Cammy, in in such good hands at her school.

Handing over a child with profound special needs to someone else for care is terrifying. Having a child with Rett syndrome who is unable to walk, talk, or use her hands to communicate makes things especially worrying. But entrusting a child to professionals who wholeheartedly embrace her and use every bit of knowledge, creativity, and tricks they possess to ensure her success is totally liberating.

I sit in Cammy’s classroom on curriculum night. It’s filled with chairs, adaptive equipment, and augmentative and alternative communication devices. I listen as the curriculum is reviewed and each therapist speaks, and am shown how each day in the classroom unfolds. This is very different from my able-bodied daughter’s curriculum night.

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Later, the occupational therapist asks if she can show me a few things. She opens Cammy’s locker and pulls out a mitten that looks like a mop. After snack time, when everyone is cleaning dishes and silverware, Cammy’s job is to dry, she says. The tears start flowing. Brilliant. Put that kid to work!

The occupational therapist brings me to her office to show me two other devices that she and the physical therapist are developing to help Cammy perform other tasks. I can’t close the floodgates and give her a huge hug.

Some teachers seek me out to tell me how well Cammy waves at them when she greets them. This means the world to me. I have never walked into a meeting or curriculum night feeling sad about what my child is not doing. Instead, I know I’ll leave in tears hearing about her new friendships, how happy she makes people, how hard she works, and that she is learning new skills that will help her thrive. I cry happy tears.

We are so lucky to have a team that is all in when it comes to Cammy. I imagine that they go home each evening and brainstorm more ways to improve her therapy. Their work on behalf of my daughter must be a labor of love. My husband and I are so grateful that Cammy leaves our safe, well-oiled machine at home each morning and arrives at another one each day at school.

Follow along with our journey at cammycan.blogspot.com.

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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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