Saturday, October 3, 2009

Cystic Fibrosis, Children and School - A Smooth Ride?

I wanted to post this little tid bit about children with Cystic Fibrosis and school. I get a lot of questions by CF parents about their kids attending school and my experiences while growing up. The questions range from "how did you tell the teachers" to "should I even put my child in public school" to ""did you hide your enzymes from the other kids". I of course will answer these questions on the blog at some point in the future (if I haven't already), but if you want my feelings on these subjects immediately, you can of course contact me anytime.

Please read through the small set of questions and answers and if time permits, answer some of the questions that I have listed below. We had a great discussion last week and I hope to keep the good times rollin'!

I’m worried that my child may be treated differently if the school knows he has CF.

This is a concern parents of newly diagnosed children often express. However, this is not a common complaint of parents of CF kids. For the most part, children with CF attend school just like every other child. Students with CF are entitled to modifications in school as any other child with a chronic illness would be.

Can my child carry his enzymes with him at school?
It depends. Each state has its own rules about medications in public schools. If your child goes to a private school, there’s a good chance school administrators make decisions on a case-by-case basis. In public schools, enzymes are considered medications and need to be kept in the nurse’s office. However, if your child has a 504 plan or a medical IEP*, you can request that your child be able to carry his own enzymes as a modification. The 504 plan and medical IEP fall under federal law and supersede state laws.

* IEP stands for Individualized Education Plan

My child doesn’t have enough time to eat lunch.
Request that your child be permitted to leave a couple minutes early from his last period before lunch so he can pick up his enzymes from the nurse’s office and still have enough time to eat. This request can also be made for children on a 504 plan or medical IEP.

What do I do if another student provides misinformation about CF to my child?
Use this as an opportunity to educate the class about CF. You as a parent can do the presentation yourself, or with your child. Perhaps your child would rather do it alone. But you may not want your child to be present because children can ask questions that may be harsh for your child to hear.

This article was taken from the John Hopkins CF Center

So, as a parent, have you had any negative experiences with your child and school? How does the school handle their enzymes? Do you believe the CF children should be home-schooled as to not expose them to harmful germs that other children may carry?

I'd love to hear your thoughts on this topic and answers to the questions above. Any more information on this topic will be very beneficial to the CF community.

7 people had something to say...:

johncoleman1 said...

well our little boy was due to start school in september but we were advised to wait until after the swine flu vacine.hopefully that will be october and hes looking forward to going then,more for the company than anything with CF need to interact with other kids i think.

Kerry East said...

This topic interests me so much because I'm an elementary school teacher and I have an infant with CF. Unfortunately I do not have experience yet with a child in school with CF, but I can say that kids go in and out of the room all day long for all sorts of things (speech, extra reading, bilingual, inhalers at nurse, etc.) and the rest of the kids are used to it. They may ask questions at first, but then it becomes part of their normal schedule. I do think if kids are questioning it, that would make for a great teaching moment for a parent or teacher to talk about CF to the capacity they think is appropriate for that age group. I think homeschooling has it's positives and negatives. I do think your chid would probably stay healthier, but they would be missing out on the social aspect of school and in my opinion, having the same teacher year after year would get boring. But I think each person has to make the decision that works best for their personal situation!

Deb said...

oh, i just had my yearly conference with the teachers and it went very well. the main thing i tell them is that i will have their neck if i catch them treating my child differently (bad OR good... especially preferential treatment). my guy wants to be like every other kid, so we make sure that happens, even if behind the scenes things are modified. he does not have an iep or 504... we just write a letter (as a formality) to the teacher every year, asking permission for him to carry his enzymes on him. this has only occurred since high school. previously he had to go to the nurse. but now, he eats throughout the day and takes some food related classes, so he is allowed to carry them. we are in public school, by the way.

great post. you'll need to write one about dealing with college. did you live away from home? my guy wants to go far and i am having a hard time wrapping my head around that one.

HArmstrong said...

i definitly think kids should go to school. Quality of life is just as important as our health. When i would take my enzymes in elementry school, i remeber one girl asking me "hattie are you baking a cake??" haha i was mixing up my enzymes into apple sauce, since i couldn't swallow them yet.

Denise said...

Interesting. I never even thought about school. I learn so much from you!!

Afton said...

I was in public school and tried private and I was never treated differently at either. My mom said that when I was little I had my friends wanting to take meds too. I think life is all what you make of it. I had a great time and no one noticed anything different about me. I think the only thing that is obvious about us cfers is our gas!!! That is way harder to hide than any pills :)

jdemott said...

My wife and I have four kids. Our third has CF. He's four and a half. He started preschool at age two, like his older siblings did. The preschool has been great about handling his CF.

The teachers keep the enzymes in the classroom and administer before snacks or lunch. Potty training was an issue, because last year, he could not start unless he was fully potty trained and he was not. We had been working on it for months. Then, magically, just a few days before he started, he was able to go on his own consistently. He had a few issues at first, but the school was tolerant.

I worry about handwashing and germs. But, we have not kept him home. Fortunately, he does not have severe lung symptoms. He had his first hospitalization this summer, to have his sinuses cleared and tonsils and adenoids removed.

He does have gas, obviously. I'm not sure how that plays out at school. I suspect the other kids at his age don't notice or think it's funny, like he does. I wonder how this will affect him as he gets older and the other kids might be less tolerant as their awareness and confrontiveness increases.

My older two kids go to an expensive private school that my in-laws currently pay for. I don't know what we'll do with our CF child. In some ways that school might work better with his special needs. But, at the same time, I suspect they're limits would be reached before a public school where they must accommodate.