Don't Let The Man Get You Down

One of my favourite movies to watch with our kids is School of Rock with Jack Black, Joan Cusack and others. I think I identify with his character and the prevailing message throughout the movie is to embrace the unique person you are, each of us. I guess I am a little haunted by our negative UGDSB and CMHA experiences of the past year and well before that if I am being honest here (and I am!). I had some pretty disturbing nightmares in the wee hours this morning. They reflected my frustration, anxiety and feelings of helplessness in protecting my kids from tunnel vision, narrow thinking and just plain mean spiritedness at the hands of The Man (insensitive institutions at large). It is easy to feel intimidated when phone calls, letters, emails all tell you that you despite everything you know is right, you must do this THING, this THING that if you do not do it, will result in this OTHER BAD THING. Ach.  

Empathy is alive and well in Guelph!

A great step forward today. Owen has begun attending the school where his friends attend and where his sister attended. I used to wheel Owen there daily in his run-behind stroller to deliver Emily to school and then proceed to huff and puff up and down the steep hills in that neighbourhood for my daily exercise. The school admin remembers our daughter and I! Feels like going home. I don't expect people to always agree with me, but I have to say that after a year of feeling like we were speaking into a void, the principal at Owen's new school has already connected with us in a way that feels right and very human. I hardly know what to do with myself. I will administer Owen's insulin at lunch daily, but my morning and afternoon until the end of the school day is mine to work. I think I will take each day as it comes for the next bit, give myself the space I need to percolate some ideas and thoughts - avoid the UGDSB battleground that has been my life since Owen's T1D diagnosis and our daughter's struggles with depression. Sadly, I did find a message on our machine after returning from Owen's school this morning and it was a person from CMHA asking how Owen was doing. I am not going to concern myself with that right now. For the moment, I am enjoying the peace.

The Wild, Wild West - Guelph, Ontario - strap on your chaps and get ready for a wild ride!

My son is finally back to school after missing much of last year. After hiring a tutor to prepare him for grade three, we were poorer, but pretty jazzed about getting him into a busy life again. Sadly, two weeks into the school year he has been forced to change classes, and teachers along with the rest of the school in a ridiculously ill-timed shift. We have battled anxiety, sugar highs and lows, ketones in urine and all night vigils testing blood, urine and administering 10% of total daily insulin dose just to try to work out a safe space for him at his school so that we could have two incomes - in part to afford his diabetic supplies and our daughter's medication - we maxed-out our privately paid for health insurance long ago for the year. I haven't a bloody clue how we will be able to pay $8000 for an insulin pump next year to ease our son's life.

What I am finding is scary. We planned and planned for this fall, but so much is being undone and hurting us in every way possible. We have had as many meetings, notes, emails, phone calls as we could to ensure a smooth and safe entry to grade three for our son. We finally arranged for a nurse (we found out at first that three nurses handle his daily lunch doses - then found out today that it is actually five). So much more room for errors in my mind if so many people are handling one case. There isn't even a contact number for each nurse - we were only given one nurse's extension number to call.

The lunch insulin for my son is delivered by 5 nurses through an agency hired by the Upper Grand Board of Education, I believe. I left a voicemail, as I have had to do before, for one of the nurses to communicate to the others yesterday about a change in my son's insulin units due to chronic blood sugar highs at school. I also wrote a prominent note in the designated communication notebook for the nurse attending yesterday.

What ensued was mind boggling. I was called at work by a nurse who had not received either message and actually questioned whether or not I had paperwork from my son's diabetes doctor to verify the insulin change. I was patient on the phone - partly so that she didn't turn Nurse Cratchet on my son and party because I was at work where all could hear my end of the conversation - but I really must wonder how I am supposed to react with calm when, repeatedly, I am faced with people who are just doing a job - not really engaged.

Should the nurse whose voicemail specifies that Tuesday is one of her days of work be blamed for not passing on the message when asked to do so? Should the attending nurse who should have read the pre-established vehicle for communication, i.e. the notebook, be held culpable? Today's nurse had to be prodded to give my son the extra two units of insulin after I told her to read the note and she questioned my authority. I mean C'MON!!!!

I am furious, worried, worn out and cannot help but think that a school that was instrumental in colluding with the Upper Grand District School Board Council and working against T1D students in Guelph gaining the same life-saving (Glucagon) privileges as children who require Epi-Pens at school - is no place for my son. Even the nurse who is on our team at the hospital is stretched too thinly to train my son's teacher who is new to my son's school. I feel as though all of the supports that we have hobbled together to help my children stay alive and healthy are so tenuous and thready that I wonder if it is a mistake to entrust their care to virtual strangers who, in some cases, may just be killing time until the end of the day or are so stretched in terms of resources they are limited or burnt out at their jobs. In the end it is about trust. Ultimately, I trusted that people in professions where children's lives were at stake would be motivated to ensure that all the details were sorted - following-up established communication routines. Over and over I hear about how a form that we filled out in good faith did not go to its destination until too late or someone is away at a conference - this adds up and forms a pattern that gives an impression that in reality many of these professionals are actually not doing their jobs very well and that they have their "careers" rather than their "calling" to nurture. Emails that were to be forwarded to the caregivers closest to my son were not forwarded...

Kudos to all that have gone the extra mile, I hope that I have shown my heartfelt appreciation. To the others - all I can say is that I am so very tired, worried and disappointed.

Kathleen Wynne, Premier of Ontario Replies to My Email Regarding the Glucagon Law

I received a response from Kathleen Wynne today after I had previously emailed her an outline of the Glucagon Policy issue here in Guelph and elsewhere in Ontario and across Canada. In the meantime, the Board of Trustees for the Upper Grand School Board notified me last week of their decision to maintain the status quo and not update the Glucagon Policy despite the progressive, inclusive and very accomodating Glucagon Policy changes adopted by the Wellington Catholic School Board. I was under the impression that I would be given an opportunity to "delegate" (speak for 10 minutes to elucidate the issue and advocate in my own words)  to the Board of Trustees regarding the safe use of Glucagon by teachers and other staff in the schools. I was not, however, afforded this opportunity.

I have had support for a change in the policy from many sources, including emergency services and education professionals yet the board of trustees seem very confident that they have made a safe decision. A policy that excludes the administration of a life-saving injection is descriminatory and placing all type 1 diabetic students at risk: I have been reliably informed that it is not possible to guarantee the arrival of EMS personnel within a certain span of time as there are many factors that influence response times and firefighters do not carry Glucagon or have training in its administration. I was saddened by  board trustee Mark Bailey's letter that outlined in an unfeeling manner how they would not be changing the policy - it did not seem like the sort of letter one should be sending the mother of an 8 year old type 1 diabetic trying to affect change for all T1D kids, not just her own. 

"Thank you very much for your online message regarding the Upper Grand District School Board. I value the input I receive from the people of Ontario, and appreciate your bringing your concerns to my attention.
I note that you have also sent a copy of your correspondence to my colleague
the Honourable Liz Sandals, Minister of Education. I understand that the ministry will be responding to your concerns.
Once again, thank you for writing to share your views with me. Please accept my best wishes.

Kathleen Wynne
Premier of Ontario
c: The Honourable Liz Sandals"

Sabrina's Law only came about through tragedy: T1D families would like to prevent a similar course for the Glucagon Law

Dear Beth,

Thank you for your email dated March 18th advocating for a policy change to allow administration of Glucagon to Type 1 Diabetic public school students. I have taken the time to share and discuss your request and rationale with fellow trustees and senior board administration.

As you are aware, there is a Life -Threatening Management Plan in place for your son and training has been done with staff to ensure they are aware of signs and symptoms prior to any possible emergency and how to best react. The Standards of Care, for students with Type 1 Diabetes in School, produced by the Canadian Diabetes Association recommends a multitude of preventative steps to take to ensure a student never experiences severe hypoglycemia. It does recommend that staff be trained in administering a syringe of Glucagon if the response time of EMS exceeds 20 minutes. We have been assured that the response time of EMS to Victory PS would be 8 minutes as it is situated so close to the hospital.

You are also correct that the after school program does need to follow our boards' policies / procedures and protocols as per their community use contract.

Currently, Waterloo Catholic and Waterloo Public have the same protocol we do, as indeed do most other boards. Wellington Catholic has amended their policy and it is apparently in practice in one school. This comes with a doctor's "order" and a waiver from the parents. The Client Services Manager at the Waterloo Wellington Community Care Access Centre has been contacted and agrees that our protocol is sound and the proper response would be to contact 911 in an emergency. As such, the board will not be taking any action to alter our policy at this time.

Although you may be disappointed in your request being denied I want to thank you for your advocacy work on behalf of your child, and wish to encourage you to continue this conversation with your local MP and MPP should you wish to pursue having such a procedure become a law.

Sincerely,

Mark Bailey

Mark Bailey

Chair, Upper Grand District School Board

Trustee for Wards 1 and 5, Guelph

2nd Vice President, Ontario Public School Boards' Association

mark.bailey@ugdsb.on.ca

519-731-1913

Letter to Upper Grand District Board Trustees

As recommended by Brent McDonald, Superintendent of Education, I have made a formal request to the board trustees to update the Glucagon policy for all levels of public schools for our region. The letter repeats the information from other previous correspondence, but the salient points are that the update is necessary, other school boards have already done so and we are badly in need of a Glucagon Bill to be passed to unify the province and country. I am going to form a parent advocacy group to encourage governments to push such a bill through - it seems that this is the only way. People are extraordinarily supportive of this move and it is just a matter of dotting the i's and crossing the t's I believe.

March 18^th, 2013

Dear Upper Grand District School Board Trustees,

I am contacting you to request altering the protocol related to administering Glucagon to Type 1 Diabetic elementary, middle and secondary school students. I am also writing this letter to elucidate the facts surrounding Type 1 Diabetes as the parent of an 8 year old boy, Owen, recently diagnosed with T1D (age 7 at the time of diagnosis). Owen was attending Victory Public School and after school care with Victory Kids’ Club until he was admitted to the Emergency Department at Guelph General Hospital in critical condition in December. He is ready to return to his friends and teachers, but there is a problem. The injection of Glucagon, a life-saving measure necessary for severe blood sugar lows, is not currently permitted to be administered by the public school teachers and other staff in Guelph.

Superintendant of Education and former Victory Principal, Brent McDonald, has discussed the Public School Board emergency protocol with a few of the authors of the policy and perhaps we will soon be closer to allowing Glucagon to be administered to students by teachers at the public schools in Guelph. The Wellington Catholic School Board recently adopted this protocol and Catholic School students with T1D may now receive Glucagon at the schools in a life threatening emergency. They have set an important precedent that was 2.5 years in the making. The rest, theoretically, should be easy for the other school boards to follow, particularly with full-day kindergarten being implemented with T1D kindergarten students relying on the care of teachers for full school days and 5 day weeks.

As a family we were thrilled that Victory's principal, teachers, after school teachers and parent volunteers rallied for Owen and learned about juvenile diabetes with our diabetes nurse over a lunch hour. Owen's teachers met with my spouse and I to discuss the finer details
of his care, i.e. Owen's daily meal, snack, insulin and exercise schedule. We discussed Owen's requirements for low or high blood sugar levels, whether he would eat 15 g of carbohydrates for high blood sugar or sit out an athletic event in favour of a quieter activity when his blood sugar is a little high.

Similarly, we reviewed the emergency protocol in the event that Owen required emergency procedures for life threatening symptoms of low blood sugar when consuming carbohydrates in the form of orange juice or Dex4 tabs by mouth is impossible. The treatment for unresponsiveness in a child with T1D is an injection of Glucagon – a hormone that is produced by the liver to release glucose into the blood stream, thereby preventing seizure, coma and death.

The method for this procedure is to use a syringe of sterile water that the kit provides and inject the water into a vial of Glucagon powder, mix gently and withdraw the solution into the syringe and simply inject the child subcutaneously, not intravenously, anywhere there is a bit of padding. The importance of the response time cannot be overstated in the event of a rapid crash and ensuing risk of life that children with juvenile diabetes endure - every second counts.

Timing is crucial in the event of anaphylaxis as demonstrated by the death of Sabrina Shannon, the namesake of Sabrina's Law (Bill 3), passed in 2006. The concept behind epinephrine auto injectors (EpiPens) is very similar to the life saving Glucagon injection. I spoke and corresponded with other parents of children with T1D recently and they have met the challenge of Glucagon protocols in their children's schools through similar means. One mother volunteered around the clock at her son's school so that she would not let him out of her sight, "Velcro'd together" was her term for how close they are at school. Another mother also spent so much time at her daughter's school that the teachers privately agreed to inject her daughter should the need arise, despite protocols to the contrary. Fortunately, the parents and Type 1 Diabetics who shared their stories with me have never had an occasion to use the Glucagon.

 The life and death scenarios that could develop for students with T1D, however, shouldn't be left to the mercy of empathetic teachers putting their jobs at risk. We are working with the provincial and federal governments to formalize the protocol and pass a law (Bill 137) that clearly outlines the responsibility of the schools - all Guelph, Ontario and every province and territory in Canada's schools to allow teachers to inject Glucagon to save the lives of Canadian T1D students. Nova Scotia, New Brunswick and Quebec have passed a Glucagon Law, and many school boards including the Wellington Catholic School Board have expanded their protocol to include Glucagon administration by teachers, perhaps in advance of full-day kindergarten enrolment.

Victory Public School’s after school care teachers are not permitted to administer Glucagon to Owen due to the rental agreement they hold with the UGDSB. Consequently, we have reluctantly withdrawn Owen from Victory Kids’ Club. We are not alone in this struggle. In Cambridge, twin T1D students are in limbo as the school board decides whether to run the after school care that currently allows Glucagon to be given by the after school teachers and in doing so, the school board will not allow its teachers to give Glucagon. The parents of the twins are hoping that the status quo will prevail. We do have much support for this cause – educators, paramedics, firefighters and other individuals from the community have expressed their concern and offered their support for a change in the protocol.

When I discovered this gap in the emergency protocol policy after my son’s diagnosis, I was
informed that T1D parents are trying to have a law passed in favour of teachers injecting Glucagon, but nobody wants their child's name on this law. I couldn't agree more. Please consider updating the Upper Grand District School Board Glucagon Policy to include the administration of Glucagon by teachers to unresponsive Type 1 Diabetic students, kindergarten to OAC levels.

Best regards,

Beth Mulkins

Advocacy in Canada

Here is a fantastic site for diabetes policy advocacy:

http://www.diabetesadvocacy.com/school_policies.htm