Look Listen and Learn

Written By Stacey Chillemi

It’s your regular Thursday night.  The kids are in bed for school.  Mom and dad are in bed watching television before they go to sleep.  Suddenly, they hear a sound from their son’s bedroom. 

They get up to check on their son.  They walk in to find his son’s eye’s rolled back, lips blue, body shaking and not responding to anything they say.  They call 911.  The ambulance comes; they bring him to the hospital where he is examined thoroughly by the doctor’s and nurses.

In my years of writing about epilepsy, I interviewed many people with the disorder, but selfish me I never stopped to think.  How does the parents of a child with epilepsy feel?   How does their family feel?  If the child goes to school how their teacher does feel?  Does the child feel like an ok or do they feel like an outcast?

Many parents told me that they become overwhelmed with unsettled emotions.  One of the issues always brought up is worries about their future.  Are they going to be able to develop and learn like other children?  How can I let my child go back to school, they could have a seizure at anytime?  So many questions, so many things to be answered.

By the time the child is old enough to go to school they will understand that they have a disorder that causes them to have seizure.  Going to school can be stressful and scary experience when you have epilepsy. They will worry about having a seizure in class.  They will probably feel scared that the children will make fun of them, they won’t want to be their friend or the kids will look at them differently. 

It is normal for the parent to be afraid also.  How much does the teacher and their faculties know about epilepsy?  Will they know how to handle a seizure?  Will the teacher treat them differently because they have epilepsy?   You do not want that to happen because the child will suffer emotionally.

Epilepsy is a common disorder.  Many children have epilepsy.  Parents should know that epilepsy isn't an uncommon disorder. Believe it or not there is a good chance that yours won't be the first child with epilepsy that the teacher has seen.

But while it would be nice if every teacher, coach, nurse and principal in the country was well-informed about epilepsy, unfortunately this isn't the case. Many people are dumb founded by myths and misconceptions.

Even though medical progress has come a long way the myths and misconceptions of the past still pose a major problem.

Some popular myths are:

Myth #1- Epilepsy is contagious
you simply cannot catch epilepsy from another person!

Myth #2- You can swallow your tongue during a seizure
it’s physically impossible to swallow your tongue. In fact, you should never force something into the mouth of someone having a seizure. That's a good way to chip teeth, puncture gums, or even break someone's jaw.

Myth #3- People with epilepsy are disabled and can't work
People with the condition have the same range of abilities and intelligence as the rest of us. Some have severe seizures and cannot work; others are successful and productive in challenging careers. People with seizure disorders are found in all walks of life and at all levels of business, government, the arts and the professions.

Myth #4- People with epilepsy look different
unless someone with epilepsy is actually having a seizure there is no way that his or her condition can be detected.

Myth #5- Epilepsy is a form of mental illness
Epilepsy is an umbrella term covering about twenty different types of seizure disorders. It is a functional, physical problem, not a mental one.

Myth #6- With today's medication, epilepsy is largely a solved problem
Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone and there's a critical need for more research.

The truth is that epilepsy is a very common disorder. Epilepsy can happen to anybody at any time. In the vast majority of cases, epilepsy should not stop someone from living healthy, productive life. It is too often people's misconceptions about epilepsy create the disability, not epilepsy itself.

I suggest if your child has epilepsy and they are ready to go to school or in school already.  They should get involved become an advocate and do some teaching themselves.  This starts by taking the time out to learn as much as possible about the disorder, join support groups and ask your doctors a lot of questions.  It’s up to you to help your child; no one is going to do it for you.

By doing this you will help yourself overcome your fears, help everyone around you, make you child feel like you accept them and love them no matter what.  That is very important.  You child needs to feel loved by you; they need to know you have confidence in them and that you think they are good as everyone else.

As parents they can help teach their child to develop a future for their child with fewer obstacles and limitations." 

The best way to make sure your child is treated fairly and like everyone else in school is to go to your child’s school system.  First, to prevent misunderstandings about epilepsy at school you need to go to the principal and the teachers involved you your child’s education and also speak to your child’s school nurse.

Explain that your child has epilepsy. Tell them what is, what type of seizures your child usually has, how often and what they should do.  Please explain to them that you do not want them to make a big ordeal about it and you would like them to handle it as discretely as possible.

I myself have epilepsy and in so it was very embarrassing for me it the teacher made a big deal about it.  A good idea is to print out information about epilepsy, take some brochures and hand them out. Getting the right information to the right people at school early can make a big difference in your child's school experience.

If your child has a seizure in school and the teacher isn't informed about epilepsy, the teacher will automatically call an ambulance. An ambulance unnecessary and the big ordeal may frighten your child and the other kids in class even more than the seizure.

When the teacher has been told about your child’s epilepsy disorder ahead of time, the teacher won't be surprised. She can lay your child on their side, and let them have the seizure. Then your child can walk calmly down the hall with the teacher to the school nurse or office when it ends. Your child might even be able to join class again after 30 minutes to hour.

You should let any who takes care of your child that your child has epilepsy and what to do if your child has a seizure.

1.      Move anything that can hurt the child out of their way so the child won't injure him or herself.

2.      Loosen any tight clothing around the neck.

3.      Put a pillow or something soft under the head.

4.      Lay him or her on one side.

5.      Time the seizure.

6.      Not what happen so the parents and doctor’s know what type of seizure and where in the brain it is coming from

Call an ambulance if:

• The child was injured during the seizure.
• The child may have inhaled water.
• The seizure lasted longer than five minutes.
• There is no known history of seizures.

Things not to do during a seizure:

• Don't put anything in the mouth. It is impossible to swallow your tongue and choke during a seizure. While the child may bite his or her tongue during a seizure, trying to cram something in the mouth probably won't work to prevent this. You may also get bitten, or you may break some of the child's teeth.
• Don't try to hold the child down. People, even children, have remarkable muscular strength during seizures. Trying to pin a child with a seizure to the ground isn't easy and it won't do any good anyway.
• Don't give mouth-to-mouth resuscitation until the seizure is over. After the seizure has ended, give mouth-to-mouth resuscitation if the person is not breathing.
• Don't call an ambulance during a typical seizure. For a lot of people, the first response to seeing a seizure is to call 911. But for the vast majority of seizures, that isn't necessary. It's scary and embarrassing for a child to spend an afternoon in the hospital unnecessarily.

Statistically, children with epilepsy are said to be more likely to have learning disabilities than other kids. This doesn't mean that children with epilepsy are underachievers. Plenty of children with epilepsy are straight-A students and do extremely well in school. If your child is having problems in school, talk to your doctor about possible reasons. Among them:

Sometimes, learning disabilities are directly related to the epilepsy. Whatever is causing seizures in the brain may also affect your child's ability to learn.

The medicine your child is taking to control the seizures might cause side effects that can impair a child's ability to concentrate.  I had taken medicine for my seizures in the past that impaired my speech, caused me to think cloudy, my memory was not was good, but when they got me on the medicine that was right for me all of that changed, including the amount of seizures I was having.

And do not for get your child could have a learning disability that was not caused by the epilepsy.

Depression may be a serious and unrecognized issue for children with epilepsy, so be aware of your child’s behavior.

Research as proven that depression is a problem for young children with epilepsy. Systems you could look for is a limited attention span and bad grades. Parents should not assume these symptoms are from the epilepsy only.

If you notice that your child is having problems in school talk to your child, the teachers and your doctor.  This is not something that should be handled lightly. The learning disability may not have anything to do with the epilepsy and could be corrected right away if you get the proper help.

Coping with epilepsy in school can be stressful for your child.  Some people who don't understand epilepsy may think it's a mental illness or a kind of retardation. How others in school treat them can really affect their self-esteem, their wiliness to want to learn and better themselves and how active they become in extra curricular activates.

Many doctors who work with epilepsy have said, even if your child is very smart, if the teacher treats them like their stupid or different they may start to believe it.

It's important to explain to the school and their faculty that children with epilepsy are just as capable to do everything like other kids.

You and your child will meet some people with old fashion and misconceptions about epilepsy. But society’s understanding of epilepsy is getting better; one of the reasons for this is because parents are talking openly and honestly about epilepsy.

You and your child should never hide the fact your child has epilepsy.  You child will benefit from being open, honest and proud of who they are.