Wednesday, October 13, 2010

A Moment to Celebrate in a Journey Unfinished

    Last night was a good night.  I came home so wound up I didn't think I would be going to sleep.  My nervousness had been building all day as I counted the hours until I would take my turn in front of the school board with our good friend Nicole.  I rushed through my morning routine to listen to her interview on the radio.  I cursed the satellite company because they don't carry the channel that her televised interview was on....  I could NEVER be a mother of 6, let alone keep up that pace (she rocks!).

   As much as I feel uncomfortable with public speaking, I couldn't keep silent on this.  School was our first and biggest issue beyond diagnosis.  The issues with some of the schools gnaw at me incessantly.  So, when I saw the opportunity to work with a great group of people and fight for change, I didn't think twice and I've never looked back.  Change is necessary and must happen.... and last night the big wheels moved a little bit in the right direction as the school board trustees passed an amended motion to have administration create a consistent policy for students with chronic illnesses.

   I kinda expected that a stand-alone policy on Diabetes wasn't going to be the case and we'd end up as a chapter in a larger policy covering many diseases, but in a way I'm glad.  Working with Sue and Mark and Jan and Nicole has been, and continues to be, a great experience and if our work can help open doors for others, then I say all the better!

   I'll admit, I haven't been around that long.  This fight has been going on and off and on again for quite some time, so in the grand scheme of things I'm a little piece in a huge puzzle, but I am so thrilled and proud to be that small piece knowing that we are moving forward to better situations for our children and their friends and classmates who need this fight fought.

   Administration has until January 2011 to draft a policy for debate and voting.  Yes, there is still a possibility that this could get dragged out for God knows how long, or worse yet shelved.  There is a lot of work still to do in the coming months.  Our supporters are growing and we will need them just as much as we move forward and have our say in the policy and promote and support it in January.

   One of the first things I learned about dealing with D, and turned out to be a valuable life lesson in general - celebrate your victories, and then build on them.  I could never adequately put into words the respect, gratitude, and appreciation I have for those who came before us in this fight as well as the same for those who are with us in it now; what I can do is use every means at my disposal to continue the fight and help ensure that we only gain ground.

Last night's speech to the board:

   Good evening and thank you for this opportunity to address you.

   I have a 5 year old son who was diagnosed with Type 1 Diabetes 16 days before his first day of Junior Kindergarten.  It changed his life forever and we now battle a disease that is 24/7 and potentially fatal.

   Still in shock over the diagnosis, we were shocked again by how ill-prepared and unable the school appeared to be to support a young student with Type 1 Diabetes.  Jonathan turned 4 on his first day of JK.  Diabetes management and self-advocacy were (and still are) far beyond his ability. 

   During the first week as I met with the teachers and the principal and tried numerous times to contact administrators, it not only felt as if I was the first parent with the first Type 1 child in a primary grade, but worse, it seemed as if he was not going to be able to attend school at all.  We value the Catholic education system and the important role it plays in the development of a child; denying him his Kindergarten years was not an option we favoured. 

   Fortunately, after much persistence and determination throughout the first months, we were able to cobble together a care strategy for Jonathan.  This was a daunting task, that at first seemed impossible and in retrospect had a level of difficulty that shouldn't have been necessary.  We had to do this in isolation and with no apparent precedent.  We not only had to invent the wheel, but engineer the machine.

   Despite the roadblocks created by policy and apparently unwritten rules, we have been blessed with a principal and teachers who work with us as much as possible, within the limitations imposed upon them, to help ensure his safety and scholastic success. Our achievement, even with it's shortcomings, is not common and without standards in place, not only does every family have to take on this feat alone, even maintaining the level of support some have achieved is threatened by things as common as teacher and principal changes.

   There are upwards of 240 individuals of school age in one Windsor clinic alone, with an average of 29 new diagnoses per year of age 16 and younger.  Since this topic was last visited here, 2 more students have been diagnosed within that clinic.  This also does not include children receiving care outside of Windsor nor those grandfathered into the endocrinologists private practices.  Type 1 Diabetes is the #1 chronic illness among children.  This is not going away anytime soon.

   We are not asking that teachers and staff become medical professionals however, we are asking for standards and consistency as it pertains to the daily needs of students with Type 1 Diabetes, including:

- Clearly defined roles and responsibilities for parents, students, teachers, staff, and administration.

- Mandatory diabetes education of all school personnel who will be in contact with the student.

- Definition of the needs and rights of the students as well as anti-discrimination guidelines.

- A template for student specific care plans that would be developed by the student’s parents and executed by school personnel.

   There is no need to wait for a tragedy to prompt legislation as was the case in "Sabrina's Law".  We are fully aware today of the risks, and the appropriate steps necessary to mitigate those risks.  A policy, fostering a consistent and focused approach, would not only help facilitate a smooth transition, but would also eliminate the way each student is subject to the arbitrary decisions of individual schools.  With educated teachers and staff and a care plan in place, school personnel will be far better equipped to support the student’s needs.

   To delay or dismiss this would be an unconscionable violation of our faith and values.  Implementing a policy to better address the needs of the students is a small measure of work that could very well save lives, the lives of our children, our students; the lives that we claim have an importance second to none.

Today's article in the local paper:

***WARNING: There is a huge error that Nicole is working on getting a retraction printed - she was grossly misquoted.  I debated on posting this link, but I think it is a good reminder that no matter how many times we repeat ourselves and try to get the message across, there is enough ignorance* (for lack of a better term) that bad information can still get out and we need to keep sending the same messages to help people become properly informed.

*I use the word "ignorance" reluctantly because this guy is a good reporter and did well to get our story to print right away, but made a critical mistake because he misunderstood.

    Thank you to all those who support us, and thank you to all those who inspire us.