I trust the system to do the caregiving when I can’t

Learning to appreciate those who see my daughter first, then her disability

Jackie Babiarz avatar

by Jackie Babiarz |

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My daughter Cammy has profound special needs due to Rett syndrome, which leaves me terrified when someone else has to take over her care and needs. But I’ve learned to handle it.

I do as much as I can to prepare myself, my child, and her caregivers, which include school staff and other members of her care team. Then I trust the process. I do that because I assume that everyone in education or therapy has the same reason for choosing these careers — to educate the whole child in a safe, nurturing, and inclusive environment, providing them the tools to be successful.

Cammy has received therapeutic services since she was 1. Over the past 14 years, I can say with certainty that the teachers, therapists, and other school and therapy staff members that she’s connected with the most are the ones who truly see her, not her disability. They’re the ones who, despite the uphill battle against Rett, see her as a person with all the incredible qualities she possesses. They presume her competence, provide a safe environment, and set her up for success. They also allow her to be vulnerable when she’s having a bad day.

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Questions that worry me

Still, questions are always swirling in my head. Are other students coming into her school with trauma, violent behaviors, inappropriate language, or needs that staff members can’t meet? As Cammy is nonverbal and nonambulatory, what happens if there’s a crisis around her? Is there a guarantee that Cammy won’t be struck or further traumatized as a bystander?

Without a way to escape a situation or defend herself, she must rely on having a fully staffed classroom to keep every single child safe. We also trust that supports and safeguards are in place for the staff.

Even after we’ve spent 14 years as a special needs family, it’s still my responsibility to make sure my child is in a safe environment. I communicate with the staff regularly about her needs, any changes, and any support I can offer at school or therapy.

I take advantage of my right to observe the school and classroom to see Cammy’s environment. I can seek out the special needs advocate’s advice if I question anything. I can also request a meeting of the team behind Cammy’s individualized education program at any time.

Fortunately, in the past 14 years, we’ve only had positive experiences. But there’s still a long way to go in her schooling, so I’ll always keep these things in the back of my mind.

I know caregivers and school staff love our children as if they were their own. They take on their traumas, victories, and defeats. Educators take on all the emotions a child goes through when they’re in crisis, as well as the hard conversations about the child’s progress or regression. I hope that all school staff members, especially in this time of teacher shortages, are given what they provide for my child — a fully staffed and safe environment, proper training, emotional support, and the tools for success.

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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