Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment

August 4, 2013 at 4:33 pm

Hi Stephanie regarding school and missed days. If it is any consolation to you in the beginning while trying to figure this out, we would miss many days of school. Actually the first year was 82 days second year about the same, 3rd year about 45 once we switched to a a schedule of loading doses 2 days every 2 weeks instead of 4 days in a row. Currently the last 3 years we have missed less than 7 days a year. It is important to think about setting up a 504 now. There will be missed days!! The 504 entitles your child to have a plan devised for their needs. Such as additional time to complete assignments with no penalty, extra time to write things(some of things we needed) because hands had to re-learn to write and tremors made it difficult. Gym was a huge issue because he could not do what he used to not even close. So for instance while volleyball, basketball etc were being done, he would be scorekeeper or captain, swimming he would just do things at own pace. The idea was to try to do as much as possible but not be over fatigued or in danger. Without a doubt, the most beneficial aspect of setting up a 504 plan was the at home tutoring. It is a law across the board, nation wide and besides accomadations there is the benefit of at home tutoring. That was truly a life saver to us, a Godsend. The at home tutor is allowed to come for 5 hours for every day missed, to your HOUSE!! Just my opinion, we did not abuse the right for 2 reasons, one it is at a cost to the school district but more importantly, I did not want us to become reliant on the tutor. Should we have cidp lifelong, I felt from an early age it was important to learn to adapt by ourselves. We were able to do all missed work even missing 82 days a year by ourselves except Math. So the tutor would come 1-5 hours a week just for math and some weeks not at all. I helped establish a plan with each teacher how they would like to approach the absenteeism and we went from there. From 4th grade to now junior year high school we have done that every year. I contact each teacher in beginning of year sometime before school starts, explain illness, deficits, ivig schedule and ASK HOW THEY would like to handle things. Then I go over it w/ my son and he handles things by himself now. In 4th grade and throughout grammar school obviously I had to make sure he was completing work and keeping up and we would do things together. Now it is so easy to keep on top of things with the schools having assignments updated daily on the computer!! In the beginning it was still old school. As soon as possible, speak with your childs school counselor and principle, set up the 504. It takes some work, letters from doc explaining treatment, treatment schedule, deficits etc. Also several meetings w/counselor and principle, usually nurse too to write on paper what plan will consist of. The sooner you tackle this the better. If you have a plan established early on, there is less ressitance in middle school and especially high school. Making school as stress free as possible is so important on so many fronts. Stress makes the whole cidp issue more intense, stress from failure in school leads to self confidence/esteem issues which are already compromised w/cidp and failure in school obviously has a lifetime impact on future goals. Don’t use the 504 as a crutch to get out of assignments/work, some people do. It is a detriment to your child. Also, some teachers will allow the child to skip assignments because they genuinely want to help the child, however this sets a presedence early on that hey I can get out of things because I have cidp. It will not be that way in the adult world, so better to face it head onnow. Don’t misunderstand me, the teachers are well intended because they want to help in the moment, but it is the moments thereafter that have to be considered as well. If you have an open dialogue with the teacher and explain these things they are understanding and helpful. It is all in the delivery!! If you go into this with a positive attitude and include others in what you are hoping to achiev, things will be great. I can honestly tell you in the almost 7 years we have been doing this we have had NO complaints/concerns, and all the help and compassion in the world from all 3 schools. I have a friend who went in gangbusters, lawyers etc and it did not go so well for her son. Just be honest. If you want to leave an email we can exchange phone numbers