Teachers Are Not Aware That She Has Epilepsy

In addition to freelance writing, I work part-time as a substitute teacher in my kids' school. I have a background in education, but I chose not to teach full-time, in part because of my child with epilepsy. I need to be available to her in an emergency. Substitute teaching allows me to stay involved in education and have a flexible schedule for my kids. My son is in kindergarten, and my daughter is in first grade.

Teachers don't always like it when parents substitute teach, and I can understand that. Any person with any bachelor's degree can obtain a subbing license, and parents don't always make the best subs. My background in education puts me at an advantage. I know how to teach.  I've developed a reputation for being a qualified sub in the building, and I think they like me.

Telling People She Has Epilepsy

I was recently subbing in kindergarten for my son's class. One other kindergarten teacher and I were discussing our kids while at recess duty. My daughter went through kindergarten last year, and this teacher was shocked to find out that my daughter has epilepsy.  I was surprised by this for a couple of reasons.

First, the kindergarten teachers work very closely together. The teachers create lesson plans together and get to know the entire kindergarten team, not just their own classes. Last year, my daughter's teacher knew that she has epilepsy, but it turned out the rest of the kindergarten team wasn't aware. I found myself concerned that if my child had a seizure in the presence of one of these other teachers, that they would not be able to handle seizure protocol.

Absence Seizures Don't Look Like Seizures

My other concern involves my daughter's behavior in school. Absence seizures are often misdiagnosed as ADHD. Frequent staring spells can look like absent-mindedness or not paying attention. Should another teacher see my daughter staring off in the hallways, would she be disciplined rather than helped?

Should I Change my Approach With School Staff?

My interactions with this teacher made me reconsider my entire approach when it comes to my daughter's epilepsy and school. The nurse reassures me every year that the necessary adults with be made aware of her medical needs and seizure protocol. Perhaps that doesn't include the entire team of teachers in her grade.

It would comfort me to know that all of the teachers in her grade were aware of her medical needs. They need to know for field trips, recess duty, and even for times when the classes switch around to other classrooms.

I need to develop a plan to provide information to all of the teachers she interacts with daily, and even those she doesn't.

If all goes as planned, next year we will be trying to wean her off of her seizure medication to see if her seizures return. It will be especially crucial for teachers to be able to let us know if they see anything that resembles an absence seizure.

So, it looks like I will be working on a plan to provide information and materials to the second-grade team. Luckily for me, my friend Vikki has written a book with tons of resources for parents when dealing with schools and epilepsy. 

What kinds of conversations have you had with school staff regarding your child's epilepsy? 

-Abby, Guest Blogger

Teaching Children with Epilepsy

During my teacher training, we learned teaching strategies for students with special needs. We became quite fluent in the 13 disability categories. Those 13 disability categories do not explicitly list epilepsy, but epilepsy can affect your child's learning.

Special Education teachers receive much more in-depth training on dealing with children with medical disabilities and other types of disabilities. The problem, however, is that Special education teachers are spread thin in most schools with heavy caseloads. My philosophy is general education teachers ARE special education teachers, whether we like it or not.

Many general education teachers assume that their special education teachers will help them teach their special education students, but this isn't always the case. As a general education teacher, my special education students are MY students, and it's my responsibility to research and learn how to teach those students.

What can you do as a parent?

First, educate your child's teacher. Let them know that your student has epilepsy. Tell them what that will look like in their classroom and what they should look for in your student's performance. Always maintain regular contact with their teacher. 

What should teachers do for students with Epilepsy?

As a teacher, know that you are not only on the lookout for seizures but also the side effects of epilepsy and epilepsy medication. Students with Epilepsy can suffer from:

• Attention issues
• Cognitive deficits
• Memory problems
• Behavior issues
• Problems with impulse control
• Anxiety and depression

Epilepsy is not just about seizures, although that part does suck.  

As a teacher or a parent, a few simple strategies can help you to teach your children or students with epilepsy. 

• Frequent repetition of materials
• Redirection and reminders
• Cues
• Memorization strategies, such as mnemonic devices
• Extra time for tests and assignments
• Non-timed assessments
• Scaffolding or breaking tasks into smaller chunks
• Visual and auditory examples
• Written and oral directions
• SEL or social emotional learning. SEL strategies can help all students but especially our medically and emotionally sensitive students. 

Differentiating your instruction to meet the needs of all of your students ensures not only a better classroom culture for everyone but especially for our medically sensitive students.

What About Medical Training for Teachers? 

I went through my teacher training in 2011 and 2012. I went through an additional 18 credit hours of master's level teacher training during 2018 and 2019. I have taken two courses on teaching students with special needs. Not once in my teacher training was I asked to get my CPR certification or any other medical response training. 

That doesn't mean teachers aren't CPR trained, but CPR certification isn't part of teacher licensure in many states. Most districts have a certain number of building staff who are CPR certified and trained to respond in medical emergencies. Medical emergencies are also a topic for many teacher trainings during those beloved in-service days. 

I know I would feel better knowing that the staff in my daughter's building were better prepared to respond in the event of a seizure.  While most seizures don't require CPR, it can happen.  My daughter had one seizure during an illness where she had vomited just before seizing, and her airway needed clearing after her seizure had stopped. Luckily my husband is CPR training annually and responded correctly in that emergency. 

What can you do? 

As a parent, stay involved, stay up-to-date on teaching strategies, and advocate for your child. Teach your child's teacher seizure protocol, and print out handouts for any staff members that are regularly with your child. 

 As a teacher, ask questions, get to know your students and their family, and involve your student and their families in the educational process. 

-Abby, Guest Blogger

Seizures and Bullying

What would happen if my daughter had a seizure after raising her hand to answer a question in class?  

A seizure for my daughter looks like a long pause, a staring spell. To some, it might look like she forgot what to say, or didn't know the answer. 

If you haven't stepped foot in an elementary school lately, you should.

I regularly substitute teach in my local elementary school. Recently when subbing for a gym teacher, I had two students hit me from behind with a pool noodle during a game of "octopus tag." 

 Kids are brutal.

Like our ancient ancestors, kids make up stories to explain the unknown. An absence seizure that happens in front of the class can take on wings and fly off into the realm of exaggeration and storytelling very quickly in a school setting. Kids have very little impulse control, and they say what they feel without having developed any empathy. 

My daughter might not even realize she has had a seizure in class when all of a sudden, her peers ask her questions about what is wrong with her. 

Low self-esteem is more common for students with medical conditions. The side effects alone of anti-seizure medication can cause issues with self-esteem. Now that vulnerable child has to navigate the social ups and downs of a school setting. 

How do we prevent our seizure-prone kids from suffering in school? 

Teachers can be a huge advocate for the students in their classrooms who are different. Embracing a classroom culture that acknowledges, supports, and encourages differences is a significant first step. 

The building of an inclusive classroom culture is one of the single most important factors in creating a culture of kindness and acceptance among students. These kids are together every day, they have to be taught by their teacher how to work as a community that is positive for all students. 

A seizure can be a scary thing to watch. Kids may try and redirect their fears by using humor, and this can quickly lead to one or more students with hurt feelings. When a teacher has a classroom culture that encourages open discussion and the honest asking of questions, this fear is less likely to turn into bullying. 

As a teacher and a parent, I encourage my child to be open about what a seizure might look like for her. By being able to explain to her peers what a seizure is, empowers my child to address their questions head-on and prevent any potential rumors.  

Every child, regardless of their medical status, is entitled to privacy. Sometimes my daughter doesn't like talking about her "Apple-epsy." But explaining what epilepsy is and what seizures look like to a classroom of curious kids can prevent your student from having to deal with rapid-fire questions from their curious classmates after a seizure has happened. 

It is so important to share your seizure action plan with any adults that may encounter your child throughout their day. Educated adults can help address student curiosity for your child in the event of a seizure. 

We all know what curiosity in kids can lead to. Knowledge truly is power in these types of situations.  

We've worked hard to help our child be able to explain what epilepsy means and what a seizure is. We've done this to empower her to address situations that could impact her negatively in school. 

If you think your child is being bullied because of their epilepsy or for any other reason, don't hesitate to get the school involved. 

Abby
Guest Blogger 

NOTE from Vikki: Even when a child tells you to not get involved because it could make things worse, you still need to report bullying behavior - - by student OR staff - - to the Principal or even the School Board. Consider also filing charges with the police department, especially if the child is hurt in any way. Keep a paper and voice-mail trail. You don't WANT to sue someone, but ... just in case.

Remember, YOU are your child's best advocate. 

Seizure Action in New Jersey Schools

It looks like our children are leading the rest of us to do what’s right.  EVERY SCHOOL needs more training about seizures… what they look like, what to do, who to contact, rescue meds and much more.

This teen in New Jersey is amazing!  Thank you, Paul St. Pierre!

 

http://newjersey.news12.com/story/41527427/maple-shade-teen-instrumental-in-helping-to-get-epilepsy-bill-passed-in-new-jersey?fbclid=IwAR3xzk6HNttuH14lQ0z2MN2e3xLX2Pwms3e-NSEjI1wM7NQr4L_kT8WhItQ

 

 

Epilepsy and your Child's Education

UNITED STATES Info

Having a school-aged child with epilepsy is scary for a parent. When my daughter first started pre-school, I was nervous that her teachers wouldn't know how to help her if she started to have a seizure.

 I am THAT mom who annoyingly over-communicates with my kids' teachers. I am sure it's frustrating for the teachers, but it provides me peace of mind knowing that I've given her teacher as much info as possible on her seizure care.

 I am fortunate that I have a background in education. I know first hand what teachers and school nurses do to organize the medical information for their students. Most schools have an entirely digital system and a student's medical information is available to teachers with a click of a button. For schools that haven't gone paperless with student information, you may find yourself providing your child's teachers with paper copies of the seizure action plan and other important seizure protocol information. 

Personally, the biggest help to alleviate my anxiousness over my daughter's epilepsy was getting a solid understanding of what to do and how to react in the event of a seizure. Likewise, I like to make sure my daughter's teacher also knows exactly what to do if she has a seizure in school.  

As a parent, you are empowered when it comes to dealing with the school district and your child's epilepsy. Be the squeaky wheel and get the administration and school staff to listen to you and your child's needs. Luckily for us, we have federal law on our side when it comes to our kids' needs and their education. 

Depending on their circumstances, your child with epilepsy may be eligible for school services under an IEP Plan (Individualized Educational Plan) or a 504 plan.

Both plans are similar but more than likely if your child needs services for epilepsy, it will fall under a 504 plan.

IEP Plans: 

IEP plans are subject to IDEA or the Individual with Disabilities Educational Act. To be eligible for an IEP plan, a student must have at least one of 13 named disorders. Epilepsy falls under the category of "Other Health Impairments" under IDEA.  For your child to be eligible for services under an IEP in school, your child's epilepsy must affect the student's ability to learn and benefit from the general education environment. The evaluation process for an IEP must be able to document that epilepsy directly impacts the student's ability to learn. 

504 Plan: 

504 plans are subject to section 405 of the Rehabilitation Act. The Rehabilitation Act is a Civil Rights law that guarantees students won't be discriminated against for their disability. 504 has a much broader definition of what is eligible for services in school. The evaluation committee at your child's school can offer a 504 plan for a student if their medical condition or disability disrupts their daily activities in any way. The planning process for a 504 plan is much less formal than that for an IEP plan.

One of the advantages of the 504 plan is that you have civil rights legislation on your side. If you feel that your child's 504 rights are being violated, all it takes is one call to your local Office of Civil Liberties and your school district will straighten right up. 

Examples of situations where a student with epilepsy may benefit from a 504 plan: 

• Your student has a seizure during a test: A 504 plan would allow them to retake the test. 
• Your student's medications affect their ability to concentrate: They may be allowed extra time to complete assignments and tests. 
• Your student frequently arrives at school tardy. Your child often has to sleep later to avoid seizures upon waking. Under a 504 plan, they would be allowed to come late to school without being penalized by the school. 
• Your child frequently leaves the classroom to take medications or have "brain breaks." Under a 504 plan, your child would be allowed to do this without penalty. 
• Every teacher would be given training on epilepsy protocol in the event your child has a seizure. A 504 plan can even require that your child's substitute teachers are provided written instructions on seizure care and a list of staff names and numbers involved in your student's seizure care. 

Protecting Your Child 

School districts have an obligation to protect your child, but sometimes you have to demand those services. 

As parents, we are our children's biggest advocates. If you think that your child's education is affected by their epilepsy, you have the right to request an evaluation by the school for accommodations to ensure their academic and medical needs get satisfied.

Many times, teachers and school staff may not be aware of the extent to which seizures and anti-epileptic drugs can affect a student's education. 

For more information on approaching the school district about your child's epilepsy, check out Vikki's book, Seizure Information for Schools and Teachers. 

Sources: 

ADAAA & Section 504. (n.d.). Retrieved January 1, 2020, from https://www.ncld.org/get-involved/learn-the-law/adaaa-section-504/.

Individuals with Disabilities Education Act (IDEA). (n.d.). Retrieved January 1, 2020, from https://sites.ed.gov/idea/.

Seizure Information for Schools and Teachers

Although I had already published one edition of my schools and teachers book, I kept getting more information...some of it quite encouraging!! Did you know that many states in the USA are now working to adopt laws for schools regarding seizure training? How wonderful! If only that had been done before my son's school "made him" leave.

But now...I unveil for you, as of December 15 2019, Edition 2 of a book I believe ALL U.S. schools, teachers, and parents of school-age epileptics should have:

Paperback Link: https://www.amazon.com/dp/1885615566

Also available as an e-book/Kindle at https://www.amazon.com/dp/B082SZTF2G .

The Layperson's Guide to Epilepsy Series

I am a member of several epilepsy groups in Facebook. It really helps to connect with others in (basically) the same boat. I have learned so much, and cried when a life is extinguished because of a seizure. Recently, it was suggested that I expand the scope of my books even further, so the is what I came up with for this book series: Vol 1: Epilepsy – One Mother’s Perspective Vol 2: What is Epilepsy? Vol 3: So You Have Seizures. What Now? Vol 4: Seizures and SUDEP Vol 5: Seizure Information for Family and Friends Vol 6: Seizure Information for Schools and Teachers Vol 7: Seizure Information for Bosses and Businesses Vol 8: Seizure Logbook: Track Seizures, Medications, Side Effects, Appointments and More Vol 9: Five-Year Seizure Diary (many different covers) Here is a link that I hope will take you to the books that are available this far. https://www.amazon.com/s?k=Vikki+Lawrence&i=stripbooks&ref=mw_dp_a_s

Info for Schools and Teachers

I got some great feedback about the first cover I had on my “Epilepsy Made Simple: Schools and Teachers” book … never occurred to me that the purple and green swirl could lead to dizziness and seizures (yes, I still have much to learn!) so I redid the cover. It is much simpler, easy to understand, and shouldn’t cause a seizure.

Just a bit about it: I wrote this book because my son was asked to leave school. His tonic clonic (grand mal) seizures frightened the other kids in his special ed class, and the teachers didn’t feel it was right to put them through that. At the time I was a bit meek, and didn’t feel like I could fight them. I sure wish I knew then what I now know.

Our children deserve an education. Even though they have seizures and often can’t remember things for days after a big seizure, they still need the exposure to the learning process.

It is our job, as a parent, to advocate for as normal a life for our child as possible. That means socializing with kids their age. Learning about life. Attending class. Graduating with a degree. And they should be allowed to do so without teachers and administrators (and kids!) putting them down and making fun of seizures.

I would love to hear from other parents about how you deal with your child being in school, with seizures.

KINDLE **and** PAPERBACK
Link: https://www.amazon.com/dp/B07X5VFZMN