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Why 'Back to School' Means More Than Buying Pencils as a Special Needs Parent

I used to love “back to school” when I was a kid. As much as I loved summer, I eagerly anticipated the smell of freshly shaved pencils, the cool breezes of autumn, and seeing my friends. I carried that sense of delight through the decades into the school days of my children.

However, I’ve realized my sense of delight has now been sullied by the harsh realities of back to school days filled with IEPs and 504s. For the uninitiated, those are the acronyms tied to the rights of children with disabilities to have full access to public education, including individualized plans for accommodations.  The “plans” ensure that children like mine have access to the medications that keep them healthy, schedules that accommodate their illnesses, and other forms of support to ensure access to education.

Before I had sick kids, I was blinded by the privilege of my ableism. I had no idea that the rights granted to my children under the ADA (Americans With Disabilities Act) and other laws would need to be battled for on a daily basis. I was incredibly naive; I had assumed if I did my part, the school district would do theirs and implement the IEP, make the medical accommodations, and otherwise ensure full access as afforded by the successful battles of disability rights activists. I was wrong.

This is not to castigate the school or our district — they are not unique in their violations of the ADA and failure to fully implement IEPs — but to reflect upon how much my privilege afforded me access to a perspective that is now lost. Perhaps my new perspective is for the better. I have an understanding of how hard “back to school” can be for a child like mine, and how stressful it can be for parents and families to never know if their child’s medical needs will be met while they are immersed in the childhood anchor of school.

Now while I pick out backpacks, search for last year’s bento boxes, and wrangle scheduling after-school activities around illness, career, and weekly medical appointments, I am also securing  “self carry” medical letters and second sets of prescriptions allowing my 8-year-old daughter to administer her own medications. Last year, despite repeated meetings, the involvement of advocacy organizations, the engagement of lawyers, and repeated assurances from our principal and higher ups at the district, the school staff failed to provide regular access to medication and medical accommodations as mandated by IEP. There are no villains in this story; there are no school nurses at our school, nor are there any real resources to accommodate kids with illnesses and disabilities.

In our new reality, “back to school” means more than just looking forward to helping the kids pick out binders and refreshing math skills. It means going back to daily advocacy, monitoring the implementation of medical accommodations, and doing everything I can to make school as “normal” and accessible as possible for my daughter. And most of all, going back to remembering and honoring all those living and learning with disabilities.

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