How difficult is it for people to understand the dangers and troubling reality of type 1 diabetes in children within our Ontario schools?
How difficult is it for people to offer an empathetic ear and truly listen to the issues at hand? I understand that type 1 diabetes is misunderstood, it is complicating and I understand that type 1 is not seen for the true monster it is...but when the information is handed to you, when the reality is thrown in your face, how do you not see it? Is these disease really that hard to grasp? If you don't live this life you just don't get it?
Why is type 1 diabetes over looked as a serous and life threatening disease?
How difficult is it to support the students that are in your care for the duration of the weekday? Or to support your community, the parents and the teachers that are working unbelievably hard to keep these children alive? To me, it makes perfect sense and for a certain population of children affected by different challenges this is true, you have a population of children with a specific need (that by the way is growing at astonishing numbers) and you (the school boards and the Ontario Government) should make changes to meet their needs, you should work to keep these children safe, healthy and learning in your schools.
At what point is it OK to turn your back and ignore this issues of type 1 children in Ontario schools?
With all the education, with all the information that we are sharing, you would think that these higher heads would HEAR our cries, they would SEE our fears, they would realize our needs and maybe just maybe common sense would come into play. Upon learning and listening about these NEEDS of children with type 1 changes should be made as needed to the schools...but I guess it is just not that simple. The only changes that I see in my community are for the worse. Recently our type 1 diabetes educator program that would once a year schedule a very important T1 informational meeting with the whole school staff on how to help and support the child with diabetes has been canceled. Our Diabetic clinic is in the process of educating public health nurses to go into schools once a year to explain the challenges and needs of children with type 1 diabetes in schools who ONLY have newly diagnosed children attending. This now leaving parents with this preexisting disease on their own to explain to the schools how to support their children.
Problem: there are a few things that I have learned in my 3 year fight to get changes in our school system, one of them is the people who need to be educated, the people who now it is are up to the parents to educate... do not want to hear it from a parent, they want to and usually only listen to a "professional" A.K.A a nurse.
Funny thing is this "MOM" knows more about my child and diabetes then the average nurse does.
Question: Can a parent even call a staff meeting like our diabetic educator could? I do not believe so but this mom is going to try because I believe that education is key in keeping my child safe.
The lack of rights for our children with type 1 diabetes completely blows my mind.
When there are parents across Canada fighting everyday for the very same thing that I am... WE HAVE A PROBLEM
When my principal is calling me asking how we get more support for Cara because she and her staff can not handle the needs of my child... WE HAVE A PROBLEM.
When our children with type 1 diabetes are being discriminated against, their rights being denied because school staff, school boards and Governments don't understand the issue at hand...WE HAVE A PROBLEM
and when something BAD happens to my daughter at school because you the Government of Ontario did not take the necessary precautions...YOU WILL HAVE A MAJOR PROBLEM.
Children with physical disabilities are of course supported within the school system as they should be. If ever a child with a physical challenge was unable to attend school because the school was not accessible to them and or their disability was not being accommodated for you better believe there would be a huge outcry...it's discrimination.
Children with peanut allergy (I have one) there is a mandatory yearly education for staff, life saving medication is stored within the school, there are policies as to how to deal with a child with peanut allergy. Unfortunately, children had to die before policies and support was given to these kids. You would think that one would see the sad unfortunate reality of denied school support in this case and perhaps come to the realization that being proactive in supporting children with type 1 diabetes without the loss of life would be a positive and supported decision.
SO WHY THE FIGHT?
From day one of trying to enroll Cara in school we learned of the vast differences from school to school in handling a child with type 1 diabetes. The first week of Cara's diagnoses this unfortunate truth become our reality. On enrollment in J.K. we were told that Cara would not be able to test her blood sugar during school hours because of the presents of blood. Completely unrealistic to believe that a child with type 1 could go over 2 hours without testing their blood sugar while eating, playing, and learning. Obviously we educated and fought and she was able to test. But how does a newly diagnosed 3 to 4 year old test on her own? How does that 3 to 4 year old child decode the numbers that are popping up on the meter without support? I would call meetings with our diabetic educator for the school staff, Cara's teacher is not the only teacher in the school that Cara has contact with on a daily basis there are gym teachers, french teachers, teachers overseeing recess, reading and computer teachers and of course the substitute teacher. In the beginning the only one showing up for these very important and informative T1 information sessions was Cara's homeroom teacher. It was heart breakingly scary to send my 4 year old to school, my heart would stop with every phone call thinking that something bad had happened to Cara and a few things did, I almost pulled Cara out of school that year 2 times. We had some scary lows, and I was running that poor little girl so high just to keep her out of immediate dangers of low blood sugar however opening her up to other dangers caused by high blood sugars.
Parents all throughout Ontario are having to outweigh dangers and put aside safety over education. Many parents are using an insulin that many physicians and nurses in the states dislike...NPH, it is often referred to as "Not Particularly Helpful" but these parents are using this insulin because it peaks at a specific time, lunch time and therefore no shot of insulin is needed and because there are no nurses in these schools this means the parents do not have to leave work or quiet their job to administer life saving insulin. Many communities in Canada DO NOT HAVE NURSES in the schools leaving parents again forgoing their child's safety for education. A HUGE ISSUE that is not being dealt with. There are so many other issues that must be addressed.
Our school support NOW at our new school is greatly different from what we and others experienced in the beginning at a different school and at other schools in our community. As always I keep up the fight, I still fight for Cara's rights that are being denied even with a very supportive school, I fight for other parents that may not be so outspoken about their child's safety and needs. I have fought and I will continue to for these kids! BUT parents you CANNOT leave it up to the small majority of T1 parents that have taken on many of these issues. WE ALL NEED TO SPEAK UP, with every year that goes by, with all the work that a few very proactive parents in our community has done and will continue to do I don't see things getting any better for our children. I actually feel we are going backwards.
We need your support to continue, stop complaining in silents, stop bitching that things NEED to change and DO SOMETHING ABOUT IT!
I feel ALONE (minus a few very active parents) in this battle especially within my community. I know you are fighting your own quiet fights, but it is time for the majority to hear you. It's time we all come together and fight the same fight...It is time for people to start listening!
If this post once again does not change the minds of those in charge of making the policies HOPEFULLY it has made it to a few more parents that see and understand what all our children are up against. Pick up a pen and paper, email a letter, call your school, call your school board, call your government, write the local paper, get involved...MAKE A DIFFERENCE, STAND UP FOR YOUR CHILD...PLEASE!!.
Let others know what you are up against, help get the word out OUR CHILDREN NEED SUPPORT, T1 EDUCATION, POLICIES, NURSES, LIFE SAVING MEDICINE AVAILABLE WITHIN THEIR SCHOOLS. We really can't do this alone!