Wednesday, February 10, 2010

Support for Children with Diabetes in Ontario School

If you have been following and reading this blog since September 09 you will know that I and Cara have gone through a lot (to say the least) with our school. Cara started J.K. (Junior Kinder) at the young age of 3 and newly dx with type 1 diabetes. The Ontario school system has absolutely NO support, no legislation, no policy for children with type 1 diabetes.

YES, trust me I know..... how ridiculous!

Some children have no nurses, no one to take their blood sugar through out the day, no one to administer insulin, no one watching for signs or symptoms of hyper or hypoglycemia. All children have no one to administer a life saving dose of glucagon because this is not allowed within the schools. These poor children are all alone with this very complicated and very delicate balancing act of a disease called type 1 diabetes.

Just recently I found a group on facebook called Support for Children with Diabetes in Ontario School Systems. The group was started by a handful of parents that had enough, they wanted more from their school system and they are trying to change the way our Ontario school board treats our type 1 children.

So I joined, I want to be a part of this!!

I have spent 3 long nights trying to compose a letter to my government asking for a change!

Here it is:

My name is Nicole ....... and I am writing to ask for your support in our quest to induce changes within the Ontario school system to provide a safer and healthier environment for children that are suffering from Type 1 diabetes. Currently there is no standardized protocol for the care of these children. In Ontario there are between 7,000-8,000 children under the age of 18 living with Type 1 diabetes. This number is expected to rise 3-5% every year. One quarter of these children are unable to successfully self-manage this disease due to their age, however the Ontario school system is expecting these young children to do so.

These children are living with Type 1 diabetes every day, hour, minute, second of their lives until a cure is found. Every day these children need to ensure that their blood sugar is in a safe and “normal” range to avoid very serious and sometimes deadly symptoms caused by high and low blood sugar levels. Sending these children to schools 5 days a week where the staff are not educated on the signs and symptoms or the dangers of Type1 diabetes, and consequently do not have the ability to help in the case of an emergency, is one of the most stressful and challenging experiences that I, as a parent, deal with.

On February 13th 2009 my four year old daughter Cara was diagnosed with Type 1 diabetes after 3 months of on and off "flu" like symptoms, 4 doctor visits, a significant weight loss, an awful rash on her bottom, constant urinating and unquenchable thirst. She was very sick and had a blood glucose of 53.2 mmols (5mmols is normal). This diagnoses has changed our lives forever.

We, as parents, are pleading for the Ontario school system to adopt a policy, or government legislation that involves standardized care, education and a partnership between the parents and the school to ensure the safety of our children. We are not, in any way, asking the schools to be responsible for managing this disease; this is the responsibility of the parents. However, we need support and assistance from the schools. Management decisions will always come from the parent and the child’s medical team. We need a plan agreed to at the beginning of the year, which can change as necessary throughout the year. This plan needs clear, outlined guidelines and expectations. We would like to model the New Brunswick school system’s 704 policy that was passed in 2008.

Type 1 diabetes is an autoimmune disease. Cara’s pancreas was attacked by her own body and now, because of the destruction of her beta cells, her pancreas does not produce insulin, an essential hormone. It acts as a key, opening the door to the body cells, allowing glucose from the food that we eat to enter and be used to make the energy so vital to the cells’ function.

Children who suffer from Type 1 diabetes are constantly working to find a balance between food, insulin and activity. Blood glucose levels go up and down throughout the day and there are many factors that cause such a change. Children with Type 1 diabetes must be aware of their blood glucose levels using a blood glucose meter frequently. A lancet is used to poke the finger, a drop of blood is placed on a strip inserted in the blood glucose meter giving a blood glucose level and an accurate idea of the steps needed to regain the balance.

One way a child regains the balance is by injecting insulin. In individuals without Type1 diabetes insulin automatically accommodates blood glucose fluctuations. However these children do not produce insulin and they need to administer insulin through injection, insulin pen or an insulin pump. Cara receives four shots of insulin a day, at breakfast, lunch, dinner and bedtime. All food that enters the body of a Type 1 diabetic must be carefully measured or weighed to establish the amount of carbohydrates which are very important to a Type 1 diabetic, however can be very dangerous as well.

There are two immediate consequences of blood sugar imbalance. If the blood sugar level dips too low, the child can become shaky, experience a fast heart beat, start to sweat, become hungry, anxious, nauseated, suffer from a headache, impaired vision, dizziness and irritability. If no sugar is given to that child they may become confused, drowsy, unconscious and or the child may suffer from a seizure. This is called hypoglycemia.

If the blood sugar level climbs too high symptoms of stomach pain, nausea, vomiting, blurred vision, frequent urination, excessive thirst, irritability and fatigue will occur. This is called hyperglycemia and if left untreated it can lead to, unconsciousness, coma, seizures and or ketone production, a byproduct of the body breaking down fats in order to get energy which lead to diabetic ketoacidosis. Diabetic Ketoacidosis is very serious and deadly for children with Type 1 diabetes. Every time a child’s blood sugar fluctuates and is out of safe range irreversible damage is being done to the body. This damage, over time, can lead to blindness, heart disease, kidney problems, amputations, nerve damage, stroke and death.

Type 1 diabetes is a very complicated and complex disease. It requires intense math, cognitive reasoning, a deductive mind and a steady hand. If the delicate equation between food, insulin, activity or blood glucose levels are off, there are disastrous consequences. My question to the Ontario school system is how can a four year old, newly diagnosed Type 1 diabetic child, be expected to take on all of this information and properly care for themselves when, we as parents, have a hell of a time? They need support and we need to make a change.

Please take the time to read the attached New Brunswick school system 704 policy and show your support in our cause by contacting Leona Dombrowsky, Minister of Education. If you would like to meet with me at a later date to discuss our campaign, please feel free to contact me. Again my name is Nicole .......... phone # or you can email me at ........


Nicole .......

Here is a link to read the New Brunswick school system's 704 policy


Amy said...

You ROCK Nicole! Incredibly well written!

Nicole said...

Thanks Amy, my mom helped a little. I feel like a kid hahaha but sometimes I'm very wordy and I don't make sense when I write sooo I had her help me with the final product. I think that it might be a little long but i thought I needed to explain things more???

Reyna said...


I cannot even imagine...not having any support in the school system. There is a full time Nurse @ Joe's school and she has been wonderful. They have even let me train other non-medical personnel on checking blood sugars, treating lows, and Glucagon administration (just in case the school nurse was not available or in the event of a "lock-down" situation). Also, the district bumped up the pay for substitute that there would ALWAYS be a school nurse at the school. of luck...I am in awe at what you and the other parents are undertaking...but it is essential that this be dealt with. Hang in there..and please keep us posted on any progress.

Joanne said...

Bravo Nicole! What a wonderful letter. It boggles my mind that there is no help for little Cara (and other T1s) at school.

Meri said...

Well done! Awesome!
Very articulate. It is long, but what can you cut out? Seriously, diabetes is a complicated thing...I don't think you can shorten it. It all seems like important information to me.

Proud of you sistah!

Gillian said...

Nicole, you are absolutely amazing! Cara is so lucky to have you as her mom. Your letter is long but it needs to be. Who knows who will be actually receiving the letter and if they are as ignorant as most other people are (thinking that diabetes is just a disease that occurs from having a poor diet and no exercise) you absolutely need to let them know how serious this disease is and what it really entails. These children need all our help and awarness.

Wendy said...

Great letter!!!!!!!!!

CHANGE CHANGE're going to be part of the CHANGE and it's an honor to know such an amazing trendsetter.

Go get 'em gang!!!!!

Shamae said...

Love it!! You rock!!! I hope they listen to you!!!

Karyn said...

Hey...guess it is your anniversary today. My son is 23 mo old and was dx 5 mo ago. I felt sick to my stomach to read that your darling was 53 at dx. Hugs mixed with tears for you and yours. I've been researching the school systems....they suck. I'm in AB and will also be lobbying for sonething similay to the US 504 or NB section 740.

Nicole said...

Hello Karyn,

wow 23 months I could not even imagine. So sorry, it hurts my heart to hear of other children that are going through what we have.

I agree the school systems suck in Canada for out T1's. That is wonderful that you have joined in the fight. Good luck to us :)