Thursday, October 2, 2008


Last weekend we hit up a restaurant in Ladera we like to go to every once and a while.  We were almost finished eating so I asked Ethan to come here so that I could dose him.  A few seconds later a woman came over to our table and introduced herself and her son because she saw that we were using a pump and had to say hi.  Her son, who is about 10, also uses a pump.  She went on to tell me all about this group in Orange County that is affiliated with the Orange County chapter of the JDRF called the MOD Squad.  

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.  


Through the Looking Glass said...

You know, I agree with you on many levels. The public school system, because of the abuse of a few, often penalizes the many. The administrations are so afraid of losing control, of ruffling feathers, of making others uncomfortable, that they homogenize the whole group and make kids with special or unique needs the odd men out.

I completely understand your frustration; remember, my son was involved in "gang warfare" the other day. But I applaud you and these other moms, because it takes squeaky wheels to force the schools to look at how they deal with all the kids, not just the ones with easy solutions.

renae said...

i'm glad you found a group of moms out there who are going through similar things, that must be informative and helpful.

oh, and fight for that 504!

Heather said...

I've taught several students with diabetes in both Hawaii and Virginia and I never saw a 504 on any of them. (But did have other students on 504s for non-health issues.)

Even within the same classroom each of my students dealt with their diabetes in different ways. One 6th grader had her test kit in her desk, tested whenever she needed to, and popped a glyco tab when necessary. I had to be looking at her to even know she was doing it. Another student in the same class choose to keep his stuff in the nurse's office.

So my experience is that many teachers and schools are flexible and willing to work one-on-one with you and Ethan to make sure he's getting what he needs. I hope that all of Ethan's schools will be so supportive.