Perseverance

per·se·ver·ance

  [pur-suh-veer-uhns]
A

–noun

1.

steady persistence in a course of action, a purpose, a state,etc., esp. in spite of difficulties,

obstacles, or discouragement.

Now that my friends is a word that you truly can't appreciate until it is put to use. *sigh* So on Monday morning we met with Beanz teacher and the school guidance counselor as mentioned here. I knew that we wouldn't actually be writing one up that morning and putting it all in place. However, I also wasn't expecting how we were all treated by the "counselor". So, so, so cold. I just can't seem to wrap my mind around all of it. According to her, since Bean is "excelling academically she is not entitled to a 504 plan, that is for students that need assistance accessing academics." Umm...no I don't believe so. That would be an IEP. We aren't asking for an IEP. We are asking for a "medically necessary 504" as her doctor called it. IEP's or individualized education programs are designed for children that need assistance with their learning process. Since Bean is at or above grade level in all subjects, clearly she doesn't need an IEP. A 504, of which she is legally entitled to under Section 504 of the Rehabilitation Act of 1973, is simply to ensure that she is safe and comfortable at school. That any accommodations that she may need as a child suffering not one but TWO chronic illnesses are in fact being made. Such as, a chair that isn't painful to sit in, time to stand up and walk around if need be, a place to rest during the day, special writing tools or even being excused from writing altogether, permission to use a rolling book bag, extra time to transition between classes, modified gym class, a nurses pass on hand for her to use at any given time, no limit on excused absences <----THAT is a big one. Children like my Bean miss a whole lot of school. For one thing, they have frequent doctors appointments, routine labs that need to be done, the illnesses themselves will cause days that make them need to miss school, then there is the fact that they have NO immune system and therefor pick up EVERY bug around. The tiniest bug that may give a "normal" kid a runny nose, can lay these kids out for WEEKS. These are just a few examples of why my Bean and the 300,000 kids just like her need a 504 in place. The "counselor" couldn't or wouldn't see any of this. Her teacher understands what Bean goes through and is willing to make any accommodations that she may need. But what if she leaves? What if the nurse leaves? What about next year? And the year after that? She is SIX years old!!!! I need to make sure that she gets what she needs NOW and through COLLEGE. YES, a 504 CAN go to college with your child. Once in place a 504 can be changed at anytime and should be reviewed at the beginning of every school year. The Arthritis Foundation has some great tips for school success. I also encourage you to reach out to your local office for help. I did after that waste of a meeting. I emailed our local office and heard back the next day. It felt so good to know that I have someone with me, that has my back in my fight for my Bean. I also would encourage you to go into your meeting prepared. Assumptions are SO dangerous. I simply assumed that the "counselor" would obviously be willing to help my child. Bring ALL the documentation that you can. Have a letter from all of your child's doctors explaining the diagnosis, a list of current medications and their side effects, a letter from your local AF office is a good idea too. So as it stands now, I am gathering all my documentation. Once I have it all neat and tidy I will be scheduling our next meeting. *rubshandstogether* CAN'T WAIT!