Monday, August 9, 2010

2010 JA Conference Notes - School/Friends

Transitioning to school can be tough for the parents of kids with JIA. The biggest thing is to be very open and communicative about the disease. Tell everyone your child will interact with about the disease, what it means, what to watch for and above all tell them to treat your child normally as much as possible. No child wants to be singled out. Open communication is the key to a successful school year.

504’s/IEP’s - These can and should be given if your child has a disease where something could happen but hasn’t yet. They are there in case something happens and don’t ever have to be used. They are 100% confidential. Having a 504 or IEP in place before something happens makes your case stronger when something does happen and teachers etc are less likely to think of it as an excuse. These can also set you up for financial aide for college. Things that can be covered in a 504 include: Second set of books at home, longer time for tests, two lockers, closer parking spot, breaks, PE passes, Longer time between classes, Laptop for notes, scribe for notes, etc.

Vocational rehab may be available to help your child get into the workplace. They may help out with school, help with vehicle adaptation, pay for a laptop computer to take notes, etc. Contact your state for more information. Your state may also have other help if you are considered to have a chronic medical diagnosis, including help with co-pays, prescription costs, etc. Each drug company also has a patient assistance program.

The vast majority of teachers are going to want to help you and your child get the most out of the school system. However, they can’t help if you don’t communicate with them often. Be very open with them and they will help in any way they can. Specifically cover signs and triggers for your child’s flares. Another good tool is a “Silent Signal”. Cough twice while making eye contact with the teacher to signal the student needs more time, a break etc. This way others don’t know.

When dealing with friends and classmates it can be a delicate balance. Not everyone needs to know that your child has JIA but it is great when they have a couple close friends that they can confide in. Once again communication is the key. Kids can be down right mean but confronting them with confidence will make them go elsewhere. Finally each speaker with JIA said the same thing, they don’t have people in their lives that don’t support them. They have enough to deal with that they don’t need people that are going to cause them drama. It is very hard for us to teach our children that they don’t need to make everyone happy but it is true. There are a lot of people in this world that aren’t worth our time :)

To get student buy in consider having your child or even better their sibling do a presentation on JIA at their school. Invite the school children to the Arthritis walk and encourage them to fund raise for it.

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