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How Schools Can Better Prepare For Students With Epilepsy

How Schools Can Better Prepare For Students With Epilepsy

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By Kimberley Wright, 
Posted by Epilepsy Ontario to Huffington Post

Starting school is always an emotional experience. As the mother of a child with epilepsy, it is terrifying!

My daughter Journey is a clever, beautiful, 11 year old girl who loves life and all it has to offer. She loves to make people laugh and lives to dance and sing. She loves to swim, climb, swing, and ride her bike.

Journey was diagnosed with epilepsy at five months old. We were fortunate that her seizures became well controlled shortly after her diagnosis. When she was four years old, her seizures changed. They became unpredictable, but relatively mild and infrequent until the age of nine. When Journey entered pre-pubescence, she began to have seizures that caused her to suddenly drop to the ground, creating significant risk to her safety and sometimes resulting in injuries. The seizures became difficult to control. As she got older, with changes to her hormones and continued brain development, the seizures became increasingly unpredictable, changing in their presentation and their triggers, and growing more frequent and intense.

Each new school year, I remember preparing for Journey’s very first year of school. I can’t help thinking about the dread that her dad and I felt as we contemplated kindergarten. Like other parents, we were excited and proud to watch our baby girl reach this milestone. Behind Journey’s crisp new backpack and the pretty new outfit, we were sick with worry about sending our precious little one off into a community that generally doesn’t understand the world our family lives in – the world of uncontrolled seizures.

Ours is a world in which the threats are unpredictable, triggers are inconsistent, and Journey’s personal safety is challenged daily. Average activities like being outside in the sun, engaging in physical games, or even walking down the hall can result in an injury, maybe even an ER visit.

It doesn’t seem to matter how many ‘first days’ of school we have; we continue to worry about Journey’s social and educational experiences. Will there be playdates and birthday parties or will the other kids and their parents be too afraid of the seizures? What will learning look like? Will she be included with her classmates or will she be left out in the name of keeping her safe? Will we be able to find ways to keep her as safe as possible while still allowing her the dignity of reasonable risks and choices?

With so many fears, my husband and I often find ourselves questioning how we’re supposed to send our sweet girl off to an environment that, for her and other children with epilepsy, is filled with danger and risk. Sometimes it feels like it would be much simpler to just keep her at home where we can protect her; place her upon a shelf, like a porcelain doll, safely away from things that could hurt her. But what kind of life is that?

I’m proud to say that we’ve survived six years in the education system, advocating and supporting our school in creating a welcoming, safe, and inclusive learning environment for Journey and other students with epilepsy. This has been a learning experience for all, involving patience, open minds, trust, a strong vision, and effective communication.

Continue Reading at Source

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By Kimberley Wright, a passionate Epilepsy Mom who advocates with a clear vision of a fully inclusive, vibrant life beyond seizures for her daughter.

SOURCE: http://www.huffingtonpost.ca/epilepsy-ontario/kids-with-epilepsy_b_5736496.html

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2 Comments

  1. question why do all these parents have to run to the school to educate the teachers on a condition that is estimated at 1 in 26. Shouldn’t teachers and school know this by now and handle it. Why are children with a life threatening illness treated like the bad guys by the school. Something is way backwards here. Am I the only that sees this??

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  2. Profile photo of EpilepsyU

    So sad Gwen but most schools are not aware of what a seizure is or isn’t. Many schools may tell the parent the child has a Behavior issue, ADD, ADHD when in fact they may have partial complex seizures or Absence seizures. We would love it it all schools included it in their inservice trainings. YOu numbers are correct that 1 in 26 people will have a seizure during their lifetime and in this age group almost 3 out of 100 will develop epilepsy. YOu would also be shocked to know how many law enforcement officers and agencies are uneducated when it comes to seizures. We still have teachers and police officers tell us “you put something in their mouth so they won’t swallow their tongue”.

    We do many, may presentations annually to school employees to make them better aware of the different types of seizures, first aid, emergency medication application and even present to students to help breakdown the myths and stigma surrounding this disorder. We only hope that someday it isn’t needed and that parents doing this in schools have the proper training to present information and materials on epilepsy. I have heard may misnomers presented and facts wrong in these presentations and we don’t want that out there either. Thanks for your question and comment! Have a great week Gwen.

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