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ZacharysMommy

My son is starting school...

My almost 4 yr old will be starting private school next fall and Im concerned that they will not accept him into the school because of his epilepsy? Im also concerned about recess,PE or even going to the computer room thats on the second story of the school. I know when Im with him I watch him like a hawk. What if he has a seizure while playing on the monkey bars or when taking the stairs to computer class.  My hubby says im freaking out to much.... any advice?

Comments

Re: My son is starting school...

I have had epilepsy since I was about your sons age (now 27) with an average of four seizures a week and while the road has been tough I have found ways to adapt to different surroundings ranging from a classroom/workplace environment to performing in the sydney opera house.

I think that you and your family have some challenges ahead of you but I agree with your husband that worrying is not going to help you much. First of all, I went to a private elementary school and I am pretty certain there are laws that protect him as far as being rejected because of his condition (Americans with disabilities act I believe).

My recommendation is that you make sure to educate all parties involved. If your son has auras and can sense a seizure is coming make sure that he knows what to do. Make sure he knows to get to a safe place and then lay down on the ground. Make sure that the teachers/principle and school nurse know about his condition and how to deal with it. When I was in elementary school my parents would meet with the teachers and the school nurse before every school year to explain my condition, leave emergency contact info and educate them on the proper care that I needed.

Looking back it is obvious that my mother had similar feelings as you because she would volunteer to help out in the class room whenever she could and I don't think there was one field-trip that she missed.

Keep people educated and for your sanity be around to help in the class room as much as possible.

Best of luck

Re: My son is starting school...

Mom, it's going to be ok. 

I can relate to your constant fear though. That's what moms do- worry. And honestly, if you didn't worry a little about your child..well...I would worry about you.

My son was just diagnosed with epilepsy in November and I want to protect him from everything too. My son had his first seizure at school so they are aware of what is going on, but that doesn't mean they know everything. So... I have tried everything to help his teachers understand his type of elilepsy. I have explained/showed each teacher what he looks like in seizure mode (he has absence and tonic-clonic seizures). I have explained his friends what to look for if he were to have one (if he stares or turns his head to the left in my son's case). The nurses are always updated on every med change. They even call me if he has a stange complaint (his stomach felt "cold" one day...it turned out that was a warning sign when he became toxic in dekapote). And I gave his class first aid bookmarks (about seizures of course!). With all this..I DO feel better.

So...I guess what I am saying is YOU are his best advocate. Do everything can for your son at school and the more you do that, the better you will feel for his safety. Trust me, you can do it. And you will! Just tell each person who comes in contact with your son about his type of epilepsy. Tell the gym teacher, the teachers even the lunch lady what to look for and you will feel better. You will be confident that your son is in good hands.

I don't know where you are, but I wouldn't think that a private school (or any school at that) would not accept your child. He has rights. You have a right to send your child wherever you want. I'm sure your ok at the private school. But, if you are worried, talk to the administers.

I know things are scary when you first send him off, but it will be SO good for him! It will become ok for you too, in time. You can do it, though! Have faith. Thinking of your family.

From one scared mom to another...a huge hug:) 

Re: My son is starting school...

Hi there,

I can relate completely to your concerns.  My son started Kindergarten this year (public school) and believe me when I say they have been schooled themselves on what it's like to deal with seizures!  Parker has had many during school hours - one on the first day, actually.  We are VERY fortunate as for the first time ever, they have assigned a specific aide for my son and my son only, and she is with him every day all day.  She is also a nurse who has a background in neurological issues so she is perfect for the "job," if you will. 

The school nurse, Parker's teacher, his aide, and the principal of the school all met with me so we could discuss Parker's issues and my worries about him.  They actually ended up with a system - when Parker has a seizure, his teacher has a "code word" that she says and the class knows that when they hear that word, they file out into another classroom.  The nurse comes down to administer his Diastat and then takes him back to her office where he will sleep it out. 

The first few times Parker had a seizure in school (before his aide was assigned to him), when he would have one, the other kids would notice and tell the teacher.  He had one on the playground and one of the other little boys in his class ran and told a teacher.  He had one in the cafeteria and the kids at his table knew something was wrong and ran and told a teacher.  I was surprised (I don't know why I was, but I was!) that five and six year-old children would pick up on something like that, but believe me, they do.

I hope your son's school is willing to work with you as well as Parker's school is.  Good luck!