When a child is living with pain and chronic health issues, back to school can be a time of mixed emotions and added logistics for parents to navigate.

Back To School Means Time To Advocate

I woke up this morning, ignored the pit in my stomach and made THAT call.

You know, the call to the Special Education Director to give an update on my child’s health status and to let them know that “yes, we are most likely going to be a huge pain in the ass again this year with our chronic unpredictability.”  I use my most friendly tone as I share my thoughts about potential accommodations and ideas I have to help make this year go smoother – as if ME being likable might magically make her feel more invested in wanting to help my child.  We both know that my daughter has a right to an education and is protected under the law, but exactly what that education consists of in terms of the curriculum and how it is delivered is often open for interpretation.

Public schools are not well equipped to support children with chronic illness. We have a 504 plan, but let’s face it, so do so many other kids these days. Over the years I have found that often times the 504 isn’t always immediately shared or maybe completely understood. So my back to school routine includes touching base before school starts with the school nurse, guidance counselor and teachers to proactively explain my child’s situation. At this level, details and educating on the specifics of her condition and how it affects her both physically and emotionally seem important because these are the people who she will interact with day to day.

When we were first diagnosed, I wanted to protect my daughter’s privacy. I quickly realized it was a mistake the day she went to the nurse complaining of high pain and dizziness and was told (in not so many words) to suck it up sally and get back to class. I now go in fully armed with information. This is my daughter’s condition and this is how it may impact her attendance and her ability on any given day. I don’t usually get into the role of medications or how hard it may be for her to concentrate on high pain days (let alone concentrate or test on certain pain meds!) because if she is going to attend public school, she is going to have to swim with the fish regardless. That is life. We are not asking for any special treatment, just flexibility.

As my daughter has gotten older, I have had a few teachers tell me that they would prefer that she explain her condition and advocate for herself. I agree self-advocacy is an important skill for our kids to develop (and I am well aware that I am setting myself up perfectly to look like “that helicopter parent”) but I also know that her embarrassment and her desire to fit in with her peers often overrides her understanding of why detailed communication is important.

Bottom line, I would rather risk taking the hit and having everyone on her educational team informed about how to best support her and help her succeed.  Our kids have so many challenges that they must deal with behind the scenes, is it wrong to want to pave the way and try to minimize the stress of school?

Do you agree in paving the way? What extra steps do you have to take to help prepare your child for back to school?