Preparing for another (school) year with epilepsy: Five tips to make this your best year yet

In the next few weeks, many of our kids will be heading off to school. This can be a stressful time for any family but especially so when you have a child with special needs. We have all heard horror stories, and some of you may have even lived them, about the IEPs that are not followed and schools who do not provide the education our kids deserve. We also know that there are great teachers out there who are dedicated to making sure our kids succeed. It is easy to feel overwhelmed by uncertainty about the care your child will be receiving at school this year. As we count down to the first day of school, here are five tips to making this the best year yet for your child at school with epilepsy.

Build your team

Make an appointment with your child’s teacher before the school year starts. Meet the teacher night works great for typical kids but not for those with special needs. You need time and space in a relaxed atmosphere to meet the teacher(s) that your child will be working with this year and discuss plans. I always try to assume that each teacher wants to do what is best for my daughter so I approach this meeting as a team building one. This is not the IEP where we are in a battle between budgets and needed services. This is simply a meeting between two people who want my little girl to succeed.

During this meeting I provide information about PCDH19 Epilepsy along with any other diagnoses. I explain what Alyssa’s seizures look like, what triggers them, and how the staff needs to react in the event she has one at school. Even professionals are often unaware of basic facts about epilepsy or the impact it can have on a child’s education. I try to clear up any misconceptions and address negative stereotypes in a nonjudgmental way so the teacher knows I want to be a resource and team member, not an enemy. I also make sure to include links to the Alliance and the American Epilepsy Foundation on the information I leave with my child’s teacher so she can research farther. While I’m there, I try to talk about what has worked well for us in the past and I always offer myself as a resource in whatever ways I am able.

Set realistic expectations

If I ran a school with unlimited resources, an entire staff completely devoted to my child, and all of the newest innovations, it would probably look quite a bit different than the campus my kids go to five mornings a week. Sometimes it is helpful to purposefully remind myself that I need to compare what my daughter receives to what she is actually entitled to, instead of comparing it to the mythical utopia I dream about. Every child in America is entitled to a free and appropriate education. They have the right to be treated with respect and receive accommodations to help them learn. Unfortunately, schools are not required to go over and beyond to make sure our kids have every available resource or are able to reach their full potential. It is important to advocate for what is in your child’s best interest while also recognizing the real world constraints.

Research your local laws and regulations so that you know what the school is obligated to provide.

We all want our children to succeed but the truth is that teachers aren’t miracle workers. Talk with your child’s doctors, therapists or even last year’s teachers about realistic goals for this year. Ask what accommodations would be the most helpful and how feasible it is for the school or teacher to provide them. Starting the year understanding what your child’s goals are and the help they have been promised allows you to better gauge if the school is keeping up their end of the bargain. There may be a time when you need to consult a parent advocate, or even a special education lawyer, but first you need to know what you should be expecting. When goals are evidence based and realistic, you may have an easier time insisting that the school work towards them and you’ll be especially excited when your child exceeds them.

Start a communication log and save everything you need addressed in the IEP

I believe in starting each year assuming that the school staff have the best of intentions. I also believe in parenting with eyes wide open. Misunderstandings happen and sometimes staff members aren’t a great fit. Many parents find themselves in he said / she said situations. It’s also possible that the school could treat any complaints as isolated incidents instead of recognizing patterns that need to be addressed.