I am assuming that at it's beginning the MOD stood for Mother's of Diabetics, but people have started to freak out about saying "he IS diabetic"... instead they think it is better to say " he has diabetes". Personally, I don't care either way. So, when I attended the meeting of these mothers this morning and saw that the MOD stands for Mother's of Children with Diabetes I had to laugh a little. Anyway.
The meeting was super informative. There were about 30-40 women there, all with children who have type-1. The majority of the women had kids in middle school but there were a few with kids Ethan's age. It was impressive. In attendance were the head nurses from the three surrounding school districts and the Health Coordinator for the entire OC Dept of Education. She gave a presentation on the frustrating issue of obtaining a 504 plan. A 504 plan is a legal document that spells about what type of accommodations a student requires due to a physical or mental disability. Let's just say there were only 2 women in the whole group that had one. School districts and certain principals make it very difficult to have one of these drawn up. Mainly, because they feel diabetes isn't a severe disability. The discussion got pretty heated at times. The nurses kept saying "if we have met with you and everything has been discussed and laid out so that we know what we should be doing, then there is no need for a 504". I wonder if they are paid to say this. Well, there is a need, especially when this document could hold the school liable if something were to happen.
The women at this meeting were so eager to share what they have gone through with their school. I heard some of the craziest things...
- they made my daughter eat lunch in the nurses office
- they limited the amount of times my son could go to the bathroom
- they wouldn't let my kid test himself in the middle of class if he was feeling low/high
- snacks had to be eaten in between classes
- PE participation was mandatory and missing activities resulted in a lower grade
I couldn't believe it. I mean come on.....the kid is feeling low, but he needs to wait until the bell rings to eat. Isn't this all common sense? Exceptions need to be made.
I felt the need to blog about this because I will probably be venting on here a lot as I try to get one for Ethan. It seems so odd to me that a document that is guaranteed and more specifically, a legal right for all people with a disability to have, is impossible to get. I am hoping that having Ed (FIL, lawyer) on our side will help.