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.

I recommend that you keep a journal of all communication with the school and any observations about your child’s reaction to school. I like to use a simple calendar that I can add important papers to. Last year my daughter’s teacher sent several papers home with mean or sarcastic notes on them. I let the teacher know I was concerned about her tone towards my daughter but nothing changed. In the IEP I was able to share some of those papers as evidence of my concerns. Without them, it may have devolved into an unsolvable argument. I have also been able to document behaviors that seem to be linked to goings on in her classroom. This calendar / journal can be helpful for me or her team and also used as evidence in an IEP meeting.

Speak softly and carry a big stick. – Theodore Roosevelt

I hope that I don’t have to pull out a notebook to prove that I spoke with a teacher about a certain topic on a certain date. I try to keep communication cordial and focused on serving my child. If push comes to shove though, I think it is always best to be prepared to be the advocate she needs. That means keeping notes even when things seem to be going smoothly at the school. Of course if things start to become contentious, you may think about communicating primarily through email so you have a log of exactly what was said when.

Prepare for emergencies

Every parent at your child’s school will be asked to provide a few phone numbers to call in case of an emergency. For parents of neuro-typical children, that is where emergency preparedness ends. For parents of children with epilepsy, emergency contacts are just the beginning. Take some time to create an emergency plan before school starts and share it with your child’s teachers, school administrators and nurses. This plan should be personalized to your child’s needs and how comfortable you are with risk.

I have found that it helps to outline what I consider an emergency and how I want to be informed of concerns. For example, if my daughter has an absence seizure at school then I am typically comfortable with a note sent home in her folder but I want her on seizure precautions (i.e. no swings or risky activity) for the remainder of the day. If she has a tonic-clonic seizure, then I want a call or text message. If she has more than one seizure, or if it goes beyond five minutes, I want them to call my office and insist I am pulled out of whatever meeting I am in. Your system will probably look different than mine depending on your child’s current condition, the frequency and severity of their seizures, how easy it is to reach you, and how hard it is to access medical care. Think through scenarios and communicate your emergency plan with the teacher and other key players on campus. You may also want to include non-seizure emergencies like behavioral meltdowns or the regular issues that all kids face at some point like fevers or bumps and bruises.

Check to make sure all medications are up to date and that the school has each prescription they need to keep your child safe and healthy. Meet with any school personnel that will need to give atypical medications to answer any questions. For example, if your child needs rectal Diastat as an emergency medication for certain seizures, you may need to train some of the staff in when and how it should be administered.

Talk to your child about her diagnosis.

I may not be the most exciting person to hang out with but I do have some pretty amazing party tricks like being able to quote the newest PCDH19 research on demand or explain complicated neuroscience to a stranger in the grocery line. Many parents work hard to understand their child’s diagnosis so that we can understand the prognosis and make the best decisions about treatments. That information doesn’t always get passed down to the patient though. This may be a conscious decision to protect your child or it could be a conversation you are avoiding.

The start of a new school year is a great opportunity to consider having a developmentally appropriate conversation about epilepsy with your child. You have already spoken with tons of adults at their school about this condition and that may impact the way they are treated. As your child gets older, they may want to take more of a lead in educating other about their diagnosis or advocating for themselves. Even if that is not your goal, think about what your child may learn about epilepsy from others. Decide what you want her to understand for now and assure her that she can come to you with more questions. It may be helpful to come up with some canned answers for questions they are likely to get from their peers. If bullying is a concern, talk about safe adults they can turn to and ways to manage those difficult relationships.

Get ready for a great year!

Remember that back to school is scary and overwhelming but it’s also fun. There are new clothes and fancy new pencils to show off. Take pictures with first day of school signs. Wake up early for special pancakes. Create rituals that mean something to you and your kiddos. Do whatever helps your family start a new year off right. Your child is more than her diagnosis. She is a student starting a brand new year of amazing possibilities. Take the steps needed to prepare for your best school year yet but don’t forget to celebrate this moment too.

Le is a counselor, a professor and a mom to three kiddos. Her daughter, Alyssa, is 7 years old and was diagnosed with PCDH19 Epilepsy in November of 2013. She shares her journey on Mom* and would love to connect with you on Facebook.