I just don't know what to do. (vent and help needed)

[MrsPunkin]

My daughter is 9 years old. She was DXed with Type I back in late June. She started 4th grade on Wednesday and I am already exhausted from the running back and forth I need to do.

My daughter also has Autism, so she is unable to test herself or give herself shots, at least for now. The school has a nurse, but she travels between 3 schools and cannot be there when needed most of the time. My daughter does have an ed. tech. in her classroom, but she knows nothing about diabetes. I have been trying to train her, the best I can, but so far it is still up to me to take care of everything. I just wish there was a wy for the school to get someone who has been trained in diabetic issues to be there with her. I am so discouraged, upset, and worried. :(

[Amy C.]

If your child is attending a public school, her diabetes care must be provided by someone in the school. You haven't spoken to the correct folks in the district.

Check out this information as to what your daughter is entitled to: http://www.childrenwithdiabetes.com/d_0q_100.htm

You need to get an Individualized Education Program (IEP) and a Section 504 Accommodation for your child.

[MrsPunkin]

She does have an IEP for her Autism, and we have a PET meeting set up for October to make any adjustments on it.

What is section 504??

[Amy C.]

Check out this link:

http://www.childrenwithdiabetes.com/504/

A 504 lists what the school is expected to do, what the parent should do and what the child can do to ensure the diabetes management is covered correctly.

[Tamara Gamble]

You don't need to have a 504 if you already have an IEP. All of the diabetes management is supposed to be added to the IEP since it already exhists.

Go to www.diabetes.org and look at the ndep guide as well as Legal Rights of students with diabetes, so that you know what your rights are. Your child must be accomodated by them for all services, bg testing, shots, calculations, pump issues, snacks, all of it. Call 1-800-diabetes for a discrimination package. This will give you the information that you need.

What state are you from?

Tami

[DustinsDad]

We are fighting a similar battle. 4th grade and an RN that's only there once a week. My son is high functioning autistic, but we don't trust him with doing his own care yet and he's sometimes pretty shaky and uncoordinated as well. We have a CSE mtg next week to add nursing services and transportation aid to his IEP. The school isn't including us in their efforts, and that is painful for us so we are fighting to be included in communications regarding his healthcare (like who is it going to be). We've been doing the school trip twice a day for carb counting and dosing. It seems like we spend as much time at school as he does. We are really looking forward to getting things taken care of, but it doesn't come quickly enough for us. The school (public ones) are required to provide services, but there is some gray area on how long it will take them to get everything in place. Hang in there and check out the links mentioned in the other replies. You're lucky in that the school will even accept your wisdom about diabetes. Ours won't listen to us - just doctors or CDE's. We have to see about putting orders on the IEP that empower us to be authoratative about his care at school along with the doctors. Sorry, guess I wanted to vent, too.

If there are any advocacy groups in your area for the autism, you might also get some answers from them about D, as there are usually medical conditions accompanying autism that they would be familiar with. I'm interested to see how you make out.