I used to love the wind-up to "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 realized my sense of delight has 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 for children with disabilities to have full access to public education; individualized plans for accommodations. The "plans" ensure that children, like mine, have access, while at school, 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 "ablism". I had no idea that the rights granted to my, and other children, under the ADA (Americans With Disabilities) 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 the failure to fully implement IEPs, but just 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. How taxing it is for the 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 and try to find last year's bento boxes and figure out how to wrangle after school activities with illness and career; and schedule school-year weekly medical appointments; I am also securing "self carry" medical letters and second sets of prescriptions allowing my eight 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.
But there is the new reality that 'back to school" no longer means looking forward to helping the kids pick out binders and refreshing math skills. It means a return to daily advocacy, back to monitoring the implementation of medical accommodations, and back to the struggle to make school as normal and as accessible as possible for my daughter. And back to remembering and honoring all those living and learning with disabilities.
I wonder if this journey - all the illness and loss - has created a new emotional topography as visible and definitive as the landscapes revealed by other natural disasters; tsunamis and epic earthquakes. Tendrils of hope and tenacity amidst disorienting and alien tableaus taking root to create entirely new visages.
Or if the changes are merely temporary and I will rebuild familiar edifices upon the foundations of an old life, forgetting this new landscape of gratitude, as time smoothes over the rough edges of newness?
I still don't quite believe that we have found a balance and ballast in the face of the rough waters of loss that left us without the girls' dad and Amelia's health. That these moments of wellbeing are our new normal; not fleeting chimeras of promise. Sarah is really cured, I am no longer bed-ridden due to my spine injury, and we are all finding more moments of joy than sorrow.