When my daughter started school within the district that I teach, I provided her school nurse with a short informational packet in regards to her condition. I thought I was being smart. It's what most parents would have done in a similar position. I provided typical symptoms of an oncoming seizure, description of the seizures themselves, medications, and other prudent information.
The school nurse at her first elementary school was intimidated by my daughter's diagnosis. There's no other way to describe her behavior in regards to my daughter after she found out about her seizures. Every time the wind changed, I'd get a phone call asking me to pick her up because she was "exhibiting odd behavior." One time, my daughter got angry at another kid, and her face turned red. The nurse called me all upset because my daughter had broken out in a rash, and she was "concerned about her being contagious." I had a friend pick her up, and I rushed home to get her. She was absolutely fine, and the school nurse knew it. It was just the beginning of trying to get her out of the school as much as possible because she was so scared of her diagnosis.
The straw that broke the camel's back was the nurse telling me that my daughter "didn't belong in public school." I'm not entirely sure what I said afterwards, but I can assure you that it wasn't kind.
My daughter is at a different school now, and the school has a new school nurse. We're experiencing a similar situation with this school nurse. In the last two weeks, she has called on two separate occasions, telling me that my daughter has had a bathroom accident, and she's running a low grade temp. Could I please pick her up? The first time I did pick her up, and I took her to the doctor. The doctor couldn't find anything wrong with her kidney function (she's had kidney issues in the past), but did discover that she has a minor bowel obstruction, and that is putting pressure on her bladder, which is causing all of her issues. It's an easy fix. The nurse still calls, and really wants me to pick her up from school.
Sadly, my experiences with my daughter's school nurse is not unusual. If you take a survey of parents with children diagnosed with seizure disorders, most of them would probably tell you that they are unimpressed with how their child's school handles their child and his diagnosis. In my daughter's case, she's not had a seizure at school in years, and yet, the nurse is so jittery about her diagnosis, she makes up reasons for her to be sent home. I've talked to parents that have dealt with schools threatening to sue the parents because they are uncomfortable with the child being on campus.
The thing is...there's this fedral law that mandates that every child is entitled to "a free and appropriate public education." (FAPE) Is sending my child home at every opportunity (contrived or otherwise) really meeting that criteria? No...it's not, and yet, I'll continue to battle this woman at least once or twice a month until the school year is over, and then probably throughout her time at that school. It will be exhausting, and we'll end up hating each other. I'm hard headed, and I'll always, always win. I know my daughter better than anyone, and to have someone that doesn't know her but has a medical background tell me what she thinks she needs is insulting.
Today was a pure venting post. I'm off to email a principal, and let her know my expectations of the school nurse. I imagine it's going to be a long school year from here on out.
2 comments:
Marisa.. this is Carrie, Alisha Mora's mom. I just finally got around to checking out your blog. Im so sorry that it took me so long, but im glad i did. It seems that even when you dont know it, you seem to always have the words to make me feel better about all of this. Alishas seizures have gotten worse. Not more often, but when they happen, they are big and scary. Yesterday she had a Grand Mal a school, a pretty bad one and messed her pants completely. She was devastated and embarrassed, but the kids and her teacher were so wonderful about it. Her teacher even left class to go to the ER with her. We FINALLY found someone to listen to us over here. The ER doctor yesterday said that she was so concerned about Alisha , and against normal protocol put her on Meds right there in the ER. It was such a blessing, and YOU were the first person i thought about telling. I KNOW that you will rejoice in my good news with me. We still havent gotten a steady doctor, (im hoping to do that this week) but atleast i can rest feeling like she will be ok now. I read your blogs and i cant tell you how grateful i am for site. I wish i had checked it out sooner. Your words and experiences really help me know that i AM NOT alone in this fight. And that makes me feel really good. Alishas school here is not really educated enough on her seizures either, but i can say that they act quickly and they are truly concerned. They dont make her feel alienated or unwanted in any way. In fact, they seem to be TRULY concerned and willing to help in any way they can, so im really grateful for that. Keep the blogs coming. I will keep you updated as well. THANK YOU for advocating for all of us Marisa! You are, as Alisha says, an Angel!! :-) Carrie
Carrie, I am so glad to hear that Alisha is finally on medication. I think of her so often, and pray for her just as much. I'm so happy that the ER doc had the good sense to put her on meds. I hope that they work out. Don't be discouraged if it doesn't immediately stop the seizures. It's often the first step of many heading towards seizure control. If you don't mind me asking, what medication is she on?
As a side note, there are intervention medications that will stop a seizure once it starts, and you can administer it to her. It's called Diastat. If they continue to get longer and scarier, you might want to take a look into it. I've given it to my daughter a fair amount of time, and it is very effective.
Please keep me in the loop with you guys. I'm so happy to hear from you.
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