Hello! My son will be starting kindergarten this fall and I'm a bit anxious about the transition. He was diagnosed type 1 when he was 16months old so this isn't new to us but this will be his first full day school experience. There is a nurse on staff but he uses the Omnipod system which is a little involved and without training people can be very intimidated by it (for example, what happens when the nurse we train is out sick? how do you go about putting together a plan B, C, etc). I would appreciate any tips from parents who are or have gone through this transition. Many thanks!
I was diagnosed when I was in kindergarten, so I don' t remember everything extremely well, but I know my school had a nurse who was trained probably similar to yours. I would look into seeing if the teacher and any aides assigned to the room are willing to be trained or at least have an "educational" meeting. My kindergarten class had a "helper" in the room already, so she was brought up to speed with my condition. As I got older, there were several other students around the school who had other medical requirements, the one I remember had very bad asthma and had to have this respirator treatment thing (this is what my 7 year old brain remembers, lol). There was an "overall" aid to help all of us medically interesting children, as well as the regular school nurse. She was kind of an overall aid to the school as well, she just got a little extra training. I was lucky enough to never have any trouble at school other than going a little low once in a while and getting to drink chocolate milk. I loved school and I hope your son will adjust quickly and have a great time. Good Luck!
JGS, I was dx when I was 3 1/2. I rember that before school started my mom would always have a metting with the teacher....So they kown how to help me if I need help or anything.....As I got older I would do thing by myself.....But there ws alwasys someone who help me rember thing ot help me do thing that I need to do. in middle school my mom only had to have 2 mettings that was the 1st year I started middle school and the 2nd year i started middle cause I have new teachers....And my school never had a nurse on staff that was to help and other kids.
The Moms on here will have better advice / more details. But, in advance of starting school, you should contact the school about setting up a 504 plan. It's a legal document outlining his plan of care including who would be trained to care for him at school, where and how he'd test, etc. I think either JDRF or ADA has examples of what you can write. Again, hopefully someone will jump in with that info, but you could also search their websites.
Good luck! I bet he'll do great!
My daugter will be starting 1st grade this year (full day). Last year she was in kindergarten but it was only 1/2 day so she did not eat lunch at school. Here is what I have done to get ready and get the school ready...
Meet with the principal, teacher and district nurse. We are in California so unfortunatley there is no school nurse. We made a 504 plan because that way the school is legally obligated to care for her exactly how we need them to instead of just hoping they do what she needs. In the 504 plan we have set who will care for her as well as a back up for when that person is out sick. Something that really helped me make the plan was the school kit brochure available on the JDRF website. It is free and they send it out very quickly. There is a lot of info in there.
- I made a folder with all her info, instructions and contact info and on the front of the folder is a current picture of her so that if there is a sub they will know who she is. One folder is in the classroom with the teacher and one is in the office with the secretary.
- I prepared a box for the classroom that has a extra meter and meter supplies, alcohol wipes, snacks for lows, glucose tabs, bottles of water and an extra folder with all her info
- I am going to the staff meeting on the friday before school to talk to the entire staff. At this meeting I will give them a brief run down on type 1 and what lows or highs look like and what to do if Emily needs help and who the primary people are that can care for her.
- There will be a picture of Emmie posted in the staff room with a brief run down of type 1, what class she is in and who the primary people are that can care for her.
- I asked to have the nutrition dept at the district send me the nutritional break down of the food being served each month so that Emmie can eat the cafateria food once a week without it being an ordeal and help her feel a little more normal. I also talked to the cafateria staff and asked them to inform me when they make changes to the menu so we are not caught off guard.
- Some things we wrote into the 504plan were that one of us or a family member will attend all field trips, we will be able to choose the teacher every year. At our school all the parents want to go on the field trips and they do not allow you to request teachers so these were a big deal. We felt the choosing the teacher thing insured she would be placed with someone every year that was willing to help care for her.
- The 504 plan also protects her under the Americans with Disabilites Act, so if she is having lows or other complications she had the right to more time for tests or retaking tests if needed. At this age I do not think this will be a problem but possibly later will really help.
It is all overwhelming and honestly made me face for the first time that my child has been classified as having a disability which could be a whole other post. But I truley feel it is all worth it, also I get to educate so many more people about type 1 which has become my mission lately.
-Meg (Emmies mom, diagnosed 10/29/09 at age 4)
Thank you so much for all of this. I admire how organized you are! As I mentioned my son was diagnosed almost 4yrs ago when he was just 16months but still this new phase for us feels very overwhelming to me. He was in a pre-k program last year for half days (no lunch) and we lucked out with an incredible nurse who became a friend and truly took care of Jackson. We are switching schools for kindergarten and I've heard some not so positive things about the nurse there. We're in NYC and I am almost positive that the schools are required to have a nurse on staff daily which is helpful. We did the 504 plan last year and will are doing it again this year.
As for the rest, I will use many of your suggestions here and hope that I find a receptive school staff/administration and develop a good relationship with the nurse. Again, thank you so much - this incredibly helpful...and inspiring. I love the way you've turned this into an opportunity to educate people about type 1.
JGS,
You got great advise from Meg!! I agree totally---education is the key! I do all of that also and the picture I give to teachers also has a write up of my son's specific levels, what he may say when he is feeling low, how he may look..... I also give one to every special teacher (art, music.....). I speak to my son's classmates as well. I take a book, Taking Diabetes to School, by Kim Gosselin that I read to the kids and leave so the students can take it home and share with their parents. I take in Rufus, the diabetic bear, and Pumpernickle the Diabetic monkey (on a pump). I also give all the kids a snack Jarett can eat. Jarett tests his blood sugar in front of them and we explain the pump he wears. I figure the more the kids know and understand the more accepting of Jarett they will be. Check out http://www.grandmasandy.com for wonderful ideas for children. I take coloring pages for the kids and puzzles from this site. I send a note to the students' parents about Jarett's diabetes and request whenever possible to include a nutritional label when sending snacks to school. (I have really had a lot of success with this!) If you are interested in any of the letters I send/take to school, give me your email and I will send them to you. The 504 plan is a must, glad to hear you have one in place! The hardest part now, is watching them grow up!!! :-(
thank you so much Renee (thank you to everyone who replied!) I'm a little concerned that I didn't begin this process in the Spring while the school was still in session but all of these helpful ideas will hopefully help me catch up. I'm going to order copies of that book right now.
If you're sending a note to the other parents about including nutritional information for snack, I'd also explain how kids w/ T1 CAN have some treats as long as they take the correct amount of insulin. Various Moms on here have mentioned that their kids haven't been invited to birthday parties, or excluded from other events, b/c the parents thought they couldn't be NEAR a birthday cake.
I arranged a meeting prior to school starting with the teacher, aide, nurse and a few other staff members that the school had picked out and went over things. I didn't tell them any more than they needed to know. courtney has a Medtronic pump and they actually sent a trainer in to train them how to use it, just incase. Courtney is very independent and does it herself but I thought they should at least have an idea of what to do incase of an emergency. We only have a nurse in our school about 2 days a month so it was very important for the teacher and aide to understand but really she had a great 1st year. I kept the lines of communication open with them and always made them feel like it was ok to call my husband or myself during the day if they had questions or concerns. I am planning on doing a refresher next month for the new teacher but she actually contacted me at the end of the past school year and met me to talk about it. We are in a very small school district which works for the best because there is always someone there that is able to help. I sent along a bag of supplies that were kept in the classroom such as test strips, juiceboxes and glucagon but again, I kept it as basic as possible. No need to teach them to refill the pump or change the site because the chases of that every having to happen are so slim. Never had any issues and on the occasion that someone brought snacks that they were unsure of the carb count they called and asked me. Don't make it more than it is and all willl be fine. Oh, I also went in and told them that whatever they learned in 1980 about diabetes needed to be forgotten about because things have changed so drastically since then. I think that is a huge issue that people have, they think back to the old days when we couldn't eat anything because we had the old crappy insulins that weren't easy to predict. Thank god for modern technology! Good luck and let us know how it goes.
Amie - I agree with you about not overwhelming people with info but I am struggling with what is enough to make sure my son's needs are well taken care of. This may be because the pump he's on - omnipod - can be a little unpredictable sometimes. This is my number 1 complaint about it - sometimes it fails (making a high pitched noise or continues to beep that can alarm anyone standing near) and it can be knocked off (at the playground when he's on the slide, etc) or the adhesive makes my son itch so when scratching he tears it off. Probably more than you need to know but there seem to be many scenarios that I feel like I need to prepare the school staff. At the same time I don't want to scare them off and make not treat my son like a regular kid. All good points to consider. thanks
As a teacher and a person with Type 1.....I appreciated having a meeting with the parent of a type 1 student who was on a pump when he was in my class! It sounds like you got some great advice. The administration actually thought it would be a great idea to have this student be in my class because I was wearing a pump at the time too. I guess you might not be that lucky! I know that we all had a meeting...all of his teachers, the school nurse, the guidance counselor, and the administration and we learned everything we needed to know. It might help to copy all of the leaflets you have for the pump and directions on how to do everything! Just a suggestion! Good Luck! I hope all goes well!