Julie Dennison - Living With Epilepsy

[Bernard]

Have any of you read her book (Weathering the Storms - living with epilepsy)? I came across her website the other day (Julie Dennison - Living with Epilepsy) and thought it was great that she was doing so much work to promote awareness. I could certainly have used a lesson before meeting my wife. I knew nothing about epilepsy.

[Elisa]

I haven't read her book, but I think that I will go and get it. I have decieded that I'm going to start something here. Some kind of awareness program. My husbands best friend son starting having seizures about a year ago, and they just continue to get worse. He has missed a lot of school because he is embarassed ( he losses control of the muscles on the left side of his face and arm) . Anyways his Mom asked him if it would help if she went to school with him and together they could explain to the class what was happening to him. He thought that sounded like a good idea. To make a long story short, when they went to talk to the principal about this, things didn't go so well. The principal send Brian to his classroom and informed his mother they she was just over reacting, and she was making it worse for Brian. There was no need to upset the classroom. But, you will never guess what happened during this time?! Brian got to the classroom and had a seizure and ended up in the nurses office. Needless to say, his Mom picked him up and took him home again. When I heard this story last night it make me so mad. I want to start some kind of awarness program. I just have no idea how to go about it.

[Bernard]

Sounds likes that principle is both insensitive and blind. He missed a great opportunity to educate his students with an important life lesson. Perhaps your friend would have more luck contacting one of the epilepsy non-profit organizations to get one of their awareness programs to visit the school. It might be more palatable for the principle to allow a registered group to speak instead of a student's parent.

[Birdbomb]

This boy is now considered a "special needs" child and is protected. The principal is an ass. :x Go to the school superintendant and launch an awareness program for his class.

My son was born with a facial deformity. It was awful for him at times. I have seen other children run away crying when they saw his face because they did not understand why he looked so different. He had over 15 surgeries to do some of the corrections and his face was changed every time. Imagine how youy would feel if you didn't know how you face would look from one month to the next.

We took his baby pictures and others that showed how his face changes and explaind it to every class. The teachers never gave us any trouble (but then, they are dealing with me and I don't take shit from anyone) The kids were all okay after that. Once they UNDERSTOOD the situation, their fears were releived and then the normal kid stuff was in place.

Children are very frightened of things they do not understand and will conjure up all kinds of senerios to fit their active imaginations. If that principal thinks they are making too big of an issue, then HE has no understanding of the child mind.

Information is the key to dispelling ignorance and misunderstanding. My God! he was once a teacher! Why not teach the other kids that they can't catch epilepsy, didn't cause his seizures, and that child has no more control over it than he has making the sun come up in the morning.

Okay, I'm done. PHEW!

[Elisa]

I don't think that we have any kind of awareness programs around here. That is why I think I need to start one, I like I said have to figure out how to go about doing that.

[Bernard]

Try checking with the local chapter of the EFA to see what awareness programs they might have going. They might be able to set you up:

http://www.epilepsyfoundation.org/programs/

[Elisa]

Bernard-
I sent them an email last week, and am waiting on a reply.
I have checked our local hostipal and they have nothing. I emailed them as well.
Maybe I will make some phone calls today.
Elisa

[Bernard]

Let us know how it goes! There are several people on the EFA forums that are involved in some awareness programs sponsored by the EFA. The next time I run across a mention of it, I'll bookmark the post for you.

[Elisa]

That would be great, I really want to get something going.