What to do when my son needs assistance in school

Actually just so u know Canada DOES NOT have a 504 plan. We have NOTHING. I have already contacted my MLA for this reason and all he had to say was “theres no funding”. Ontario is working on a law called Sabrina’s Law but Alberta doesnt look like they will have anything anytime soon. I think I am going to end up having to quit my job and follow my son around to make sure he is ok. It’s definitely not looking too promising.

In Canada, if you don’t live in Ontario or New Brunswick, its a case by case thing…actually it can be case by case in the other provinces as well but they offer a little more. Alberta has very few good policies in place for children with diabetes in schools. The best place to start is finding out who will be your child’s teacher. They often will be sympathetic and do all they can to help your child to fit in. The next stop is the principal. He/she can designate someone other than the teacher to assist with testing and injecting. You can ask for a public health nurse to come in and assist with training. In some cases you can get them to come in but good luck on that one. Even in areas that have policies protecting children with diabetes, many of the principals are not aware of what their responsibilities are.

If you can’t get anywhere with the school, you move onto the board. With public pressure, they can look into expanding their policies. It is a long and frustrating process. Try to be positive and hopefully you will have educators who remember that their role is to act as parents in your place. These such people will try to do all that they can to assist you…I have been blessed to run into a few.

Good luck!

That was very helpful. I have talked to one of the principles of the schools here and he said that legally they would be liable if something happened to Brendan and thatis too big of a responsibility to take on at this time. I have run into a little luck with a private school the only thing is I have yet to figure out how to afford it. It is very expensive and I just dont have the 450/month to put into it. I am going to talk to the principle and see if there is something they can do to help. They have funding from the fees that they decided how it is distributed and they have put some money into children with problems not covered by the healthcare system including diabetes. I just can’t believe how hard of a fight this has been. I wish I could help with things for parents who are going to have to deal with these issues in the future. thanks for you input, it was really helpful.

my son was diagnosed when he was in first grade and the nurses and the teachers have all been excellent every year for the last nine years. we havent had one problem concerning his care. every year before the start of school we sit down with the nurse and the principal and discuss his schedule and plan of action if there are any problems it all gets printed and sent to all his teachers and it has worked out great. He always goes to the nurse’s office before lunch to check his blood surgars and administer his insulin. If he is not feeling well someone will accompany him to the nurse’s office. I hope you are able to work things out .

Thats awesome. We are working on getting Brendan to try to learn how to do his needles but he was diagnosed in September so we are just getting used to it ourselves. Hoping by September he will be able to do his finger pokes well by himself then we will start working on the insulin. It is kind of slow progress right now. thanks for the note…it helps.

My daughters attend a private all-girls school that, amazingly enough, has 4 girls with Type 1 and only 115 girls in the school all together. However, as you can guess, a school this small does not have a nurse. All the girls but mine wear pumps. (I’m looking forward to Clara joining this group soon!) The 7th grade girl texts her parents, and they discuss her needs before she does anything. The other mothers, including myself, go to school every day. I know that’s not what you wanted to hear! My daughter’s in fourth grade and has been fairly recently diagnosed. I bought her a cell phone immediately and will soon let her call me, rather than going to the school daily.

Nonetheless, the others are right. The school cannot deny services for your child if he attends public school. A simple primer on this topic with a lot of forms that you can print is found in the Pink Panther Book, Understanding Diabetes. http://www.uchsc.edu/misc/diabetes/books/ud11/ud23.pdf

Educate yourself, and they won’t be able to push you around. Good luck!

i did not read all the posts, but I do know that in Canada there is no 504 plan and most schools (if not all) don’t have nurses. Our school is not allowed to administer insulin (I think it is a manitoba law because our DER-CA for the province backs this up). Right now my son is in afternoon kindergarten so he only needs insulin if he is really high or if there is a special snack day where there will be more snacks. next year he will have to stay for lunch and he gets insulin at lunch so yes that will mean coming to school every lunch (as well as the other times). we are also hoping to start the pump by summer and school staff will not even be allowed to touch it. so every meal or snack, every alarm on the pump, every everything and we will have to go there. i cannot afford to quit working. i am thinking of applying for a TA position in his school in the fall. if i can get in there problem solved (even though i would have to take a pay cut from my current position). if not we really don’t know.

Canadian Law is different in regards to Diabetes Care in Schools. I think you have to approach the school district itself or the school. Some schools are very willing and others are not. Here in the US we several laws both federal and state to deal with the issue of diabetes care within the schools, etc. What province are you located in?

There is something similar in Canada…touch base with your nearest Canadian Diabetes Association office.

Yikes! Finger pokes are one thing, administering insulin is another–he’s too young for that kind of responsibility. Don’t push him too hard to be self-sufficient or you’ll risk burnout later on–he’ll get sick & tired of having to manage his diabetes by himself. He will let you know when he’s ready to try giving his own doses but it should remain your principal responsibility at least till he’s in his early teens.

Have you seen the books by Spike and Bo Loy? They’re really addressed toward an older set of kids but they might be useful in giving some insights about when a kid is ready to take on his own care, and what he needs to learn before he handles the majority of his diabetes care himself.

Jeleis, I don’t suppose there is a school nurse who might be willing to get training from your diabetes team? Would they accept a waiver of liability from you (obviously, covering all but gross negligence or deliberate harm)? And, do you have any possibility of getting your son on an insulin pump? I have my son (2 1/2) in a private day care and while we had to administer the injections ourselves, once he was on a pump, the owner and her staff were more than happy to learn how to push the buttons and administer the insulin given that the pump calculates the doses. Anytime there’s any question, she just calls me and asks what I want her to do. It works great.

Yes we did try to get Brendan on a pump and his endocrinologist said it would be even more work and I would have to go into his school every hour to calculate it. I was really hoping that a pump would sove problems but I guess not. I am still stuck and have officially been told that unless I have someone or want to come to school myself the only other option is to take him off insulin for school hours. I was almost insulted when I was told that. What if my son needs insulin at lunch? Then let him go all day with high twenties? I think not. He gets cranky when he is high and his school work will suffer when he gets into more serious levels. I think I am going to have to go and meet the teachers and get them all their training and start there. Then I may have to ask the mom I found (she has a 10 yr old with type 1) and take her up on her offer that if he needs insulin she will leave her work and quickly come do it. I think that is probably going to be my best solution. It is only two days a week for full days so this year should be respectively easy as compared to the next year where it’s five days a week. I am really hoping I get a good teacher that is very conscious about everything. It is going to be hard, but who said diabetes was easy?

I too think your son is far too young to take responsibility for his own insulin administration - this is years away. I think it’s important not to force too much diabetes responsibility onto young kids - this can make them resentful and fearful of making mistakes. Even the finger pokes - he’ll have to be closely supervised when doing these to be sure he’s cleaned his finger. If he’s having trouble getting a sample as sometimes happens or is unable to test then he’ll need assistance. Likely a teacher or principal will be willing to help out with this. I understand your challenge - no one at school will give him insulin (or glucagon for that matter!) and taking him “off insulin” is clearly not an option. You might enlist your local public health nurse to see if she can help out. She will probably be happy to come to the school to speak to the teachers, aids and lunch/recess supervisors about signs of hypoglycemia. You or your significant other may have to accept that one of you needs always to be available by cel phone when your son is in school and to come in at lunch every day or on very short notice to give an injection. This is what we did. He will also likely need supervision at lunchtime to be sure he’s eating his prescribed carb amounts. Same for snacks. He’ll have to test before and after physical activity (gym class or unplanned exercise). It seems daunting for sure but it’s doable. Building a good relationship with his teachers is very important - meeting them at the end of this school year to discuss how things might look next year, making yourself available to ‘train’ them, taking away their fears about your son’s health. If there is an aid, he/she might be interested in being trained to help out. Teachers/principals/secretaries can be incredibly supportive and willing to help out. Perhaps you have a daycare provider who would be willing to learn the ropes?

Wow. Your school officials are FANTASTICALLY ignorant, if they even suggest taking him off insulin at lunchtime. Clearly they don’t even realize that that’s the opposite of what you want to do! They need education about T1 diabetes, and fast. Can your clinic put on a class for them? Does Canada have an equivalent of the American Diabetes Association?

I’m amazed that your doc would say the pump is more work–much less that you’d have to go to school every hour. That’s just ridiculous. Has this endocrinologist ever worked with a patient on an insulin pump before? It is about the same as learning to give injections, in my experience (we did 10 months of shots, have been on the pump now since August), and the BIG difference is, anyone can administer the insulin without having to inject with a syringe. Plus the pump itself does the dosage calculations (your job is simply to determine how to program it) and you can set basal rates for different time frames fairly easily. They’re pretty simple to use and with a little training, even a teacher can learn how to give insulin that way (my daycare provider does it all the time). The reason it’s ideal for little kids is, you can administer smaller increments of insulin, which keeps blood glucose more stable. I do think you are right about meeting with the teachers offering training to them, but it seems to me your endo is making this harder than it needs to be by trying to dissuade you from using a pump.

hmm. Well maybe I need to just go talk to a different endo. I am puzzled as to why my doc doesn’t want to put my son on the pump. I think I should get a second opinion for sure. Thanks for the info.

I’m currently writing about my 504 experience on my blog www.ardensday.com

The direct link to the 504 blog is - http://bit.ly/a9h7Eg

Hope that it can help someone!

Best,
Scott

I call or email the nurse daily for his BG 's before lunch and adjust his menu if I need to - thankfully she is wonderful and will also call me - but I was so uneasy at first…don’t shy and stay on them until the right relationship is established and you feel comfortable. I also met with her extensively before school started and his teacher too (although that wasn’t as productive). I would think if you have a doctors order the school HAS to follow it! Good luck,

I am sorry, I guess I was using the wrong terminology of it all. Totally not trying to offend anyone just trying to get my point across the best I could.

I just got a conference meeting with the superintendant of the school and I have to provide them with his diagnosis and a doctor order of what he will need. In that conference meeting we will have: the teacher, the superintendant, the teacher’s aid, the principle of the school, myself , and the mother who has volunteered to come and give my son insulin when I am not available. Hoping everything gets off to a good start. It is conforting to know that others have done it this way successfully and it kind of lessens my anxiety.

Great news Jeleis! I suggest you bring along a diabetes health care professional to help explain diabetes and your son’s care. Your friend who is going to help out is a nurse I think you wrote - she’ll be a huge help at the meeting I’m sure. Best of luck with it.