Fight for Your Rights

by Leighann on December 8, 2008

My daughter’s preschool teacher is out for a few weeks and there is a substitute. I think the kids miss her and miss the routine.

I can’t say that I am entirely comfortable leaving her with someone who doesn’t know her well. The only reason why I was confident allowing her to return to preschool after her diagnosis is because the two teachers know her and care about her (as they do all the students).

The sub seems a bit flustered at times and doesn’t always have full control of the class–a group of four- and five-year-olds who can be pretty unruly at times.

My daughter returned to school today after a week and a half off. She told me this morning that she was nervous about going because she hadn’t been there for so long. But she went and the kids greeted her and told her that they missed her.

What was disheartening is getting a phone call from my mother at 12:30 with my daughter crying in the background. It seems when her grandfather picked her up at noon she was pretty upset. When she got home and told grandma why, she became very upset again. They called me and she said she wanted me to come home, which I could not.

She told grandma that she was upset because she was very thirsty and the teacher wouldn’t let her get a drink from her cubby.

Each and every time we leave the house I pack two drinks for her. On school days, one of these is a smaller cup of diluted sugar-free Kool-Aid that she can have if she wants while the other kids drink juice. Most days she just drinks water. The other, larger cup is always filled to the top with water.

When a diabetic’s sugars start getting high, they get thirsty. That is why extreme thirst is one of the first signs of undiagnosed diabetes. And it was the first sign for us. Diabetics must have undenied access to water. And the doctor’s note that is on file with her school states that she must have access to water. This has never been an issue.

Until today.

Now I wasn’t there and I don’t know exactly what did or did not happen. But I will say this: even at only four, she knows her body and knows when she needs to drink. And just like in the weeks leading up to her diagnosis, if she doesn’t get water when she needs it, she will become emotional, crying without being able to stop. (Being very emotional can be a sign of extreme high or low BG.)

When her BG was checked at lunch today it was in the 300’s. That’s high. Over 300 and we have to check for ketones. I saw the snack she had at school today and that was not the culprit.

I am sure she was running high for whatever reason and her body needed water to flush it out.

As I prepare to send her to kindergarten next year, I have been reading up on our rights at school regarding her care. The ADA has prepared an almost 300 page book on The Legal Rights of Students with Diabetes. I have had two different conversations with people in the last two days about advocating for my own child and my fears that it will be a struggle when she enters public school.

Diabetes is not a disability, but at the same time you cannot be discriminated against.

My daughter is not the first diabetic child to go to public school. But it is hard to have a positive outlook in the months leading up to it when I hear over and over again about the struggles of other families.

Like children who are not allowed to even carry their glucose meters because the small lancet could be used as a weapon (ridiculous). Or whose meters are under lock and key. Or teachers refusing to get even basic training. Or being denied to participate in activities or go on field trips. (Read this great story from the Chicago Tribune.)

We know a family who moved to a small town just south of ours because they have a full-time school nurse. Our district has one nurse for about 10 grade schools.

It is difficult to be positive. And even more disheartening when my daughter’s only safe haven these past nine months is no longer.

If she can’t even get a drink of water in preschool, what will she be denied next year in elementary school?

Update: After talking with my daughter more and with the substitute teacher this morning, I figure the story is somewhere in the middle of what each said. The teacher said that Q never said she was thirsty or was going to her cubby for her drink. I am still angry that this teacher implied that my child was lying…she said “children at this age tend to make up stories to benefit themselves.” I can say my child does not do this and has never had a reason to. I chalk a lot of my daughter’s emotional state to being away from school for almost two weeks and not wanting to return and to her high blood sugar. Hopefully today will be a better day for her. But the fact that it is difficult for diabetic children to get the care they need away from home remains.

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