Recently there was an uproar in the Diabetes Online Community(DOC) regarding a comedy skit done by a well known comedian. I did not see the offending piece partially because it was blocked from viewing outside of the US and partially because I really didn’t want to go there. I was told it was exceptionally rude and offensive.
Last week, the BC Medical Journal published an article called “Unsafe at School: Advocating for Children with Type 1 diabetes.” It is my understanding that the document was created by parents and endorsed by many in the medical community. It was a huge feat to have this reach such a publication. It added weight to the argument that children with diabetes in schools do have special needs based on their medical condition. Parents are not asking for help for their children with diabetes in schools just because they are too lazy to take time off work to run to schools. There are many more concerns here and those concerns are justified.
The article does a great job of highlighting the real impact of hyperglycemia on learning. They note that extended exposure to hyperglycemia can have a long term impact on cognitive performance. The authors further state that because some parents are not able to get to school themselves nor are they able to get a friend or relative to go to the school to inject their child, they are put on inferior insulin regimens and the children are often forced to run high during school hours. As previously noted, this means that the student’s ability to learn in the afternoon session is severely reduced.
This problem could be alleviated if aides or other school staff were allowed to assist with injections or boluses. Sadly, the article states that the BC Nursing Support Services feel that such people are not qualified to do these tasks. Personally this is political rhetoric. If this was the case, that a teacher or aide could not be trained to inject insulin or deal with glucagon, then why are we as parents, not sent home with a nurse when we leave the hospital with our child? Parents of children with diabetes come from all walks of life and all education levels and yet everyone of us is required to test, inject, and manage glucagon if the need arises. We are trained by diabetes educators and if we do not use that training we are charge with criminal negligence regarding the safety of our children. I have spoken with educator and classes of students wanting to work in the school system, most are very willing to learn and be taught to assist their students to the best of their abilities.
I do have two small issues with this article however, but let me preface first that I know how hard it is to get consensus and that some points have to be made at the sacrifice of others. It can often be necessary to use extremes to get the attention of those most important.
My first concern is the argument of children with diabetes being labelled as disabled. I was recently made aware that the Human Rights Commission of Canada has chosen to recognize diabetes as a disability. This is a very sticky area. Many people with diabetes work very hard to show that there is nothing that they cannot do. They have fought various organizations to prove that they are just as capable of flying planes and working in the protective services as anyone else. They do not see diabetes as a disability. My son would fall under this category of people.
Other people feel that someone with diabetes is disabled. They have a disabled pancreas. The need to have an external source of insulin, to test blood and carry glucagon is not normal. The fact that a person with diabetes cannot always participate in activities because of hyper- or hypoglycemia, in some people’s mind makes them disabled.
In the US, this concept is widely accepted. In the US, people with diabetes are considered disabled and protected both at work and in school by the American Disabilities Act. This allows students to receive, on paper at least, protection of their rights to inject, have assistance, and be exempt from writing exams when out of range. Sadly, schools still fail to provide their students with the proper protections, often discourage parents from implementing these plans, and are looking to remove school nurses from some schools leaving young children with diabetes in a similar situation to our own children here in Canada.
There is no easy answer. We do need protection for our children. We do need standard policies in place–not just for our children but for the educators as well. Staff need to understand what diabetes is. They need to understand how each child is unique in their needs. They need to understand that while the needs of a child with diabetes change over the years, there is a need for assistance from pre-kindergarten all the way up to grade 12 and beyond.
This was my second issue with the article. I wished that there had been a way to expand their focus a little more. A child who is five may not be able to inject themselves or understand how to bolus but a child of 15 may not be able to see his/her meter when are high and properly handle their diabetes care. A child of eight may do poorly on an afternoon test because their blood sugar was high but a child of 16 may fail a provincial exam because they were also high but no one noted their blood glucose levels and waited for them to be in range to have them take that test. Finally, a child who is 7 may not yet recognize when he/she is low and will require an adult to keep an eye out for them when the stumble on the playground and feel out of sorts. A child of 17 needs the same protection when they stumble in the halls because they are low but are mistakenly sent to the Principal’s office for being intoxicated in school. The rights and safety of children of all ages must be protected. They all can be in dangerous situations just because they happen to have Type 1 diabetes.
I applaud the initiative and the passion of these authors. I truly hope that the legitimacy that this article gives to some of the issues children with diabetes in schools face help students not just in BC but throughout Canada. Our concerns are real. Diabetes is deadly. Treatment methods are changing and schools must be able to accommodate the needs of our students, allowing them to use the best possible treatment methods in school so that they can be at their very best to learn while in the classroom.
Yes, I am back on the same topic one more time and have brought along our good friend Bob the Builder because “YES WE CAN!” get Mike Fisher, snowboarder extraordinaire and person with Type1 diabetes on The Ellen Show!!!
I had planned to move on to a new and very important topic today that was sent to me by a friend but its equally important for us to keep the momentum going on this. As I explained the other day, Mike Fisher is a great young man with amazing courage. He appreciates what Ellen gives back to the community and hopes that by appearing on her show, he too can give even more to the Diabetes Community. We can help him.
Many of you read and shared my first post. Many of you have gone to The Ellen Show and asked them to put Mike on stage with Ellen. Many of you have even tweeted about it but now I want you to do more…tweet more! Share more! Get more people involved!!! Let’s make this VIRAL!! In my province, the story of a person with over 100 cats in their home went viral so why can’t the incredible story of a young man who lost his leg in a car crash, was diagnosed with Type 1 diabetes, has become a world class snowboarder and incredible motivational speaker for young adults also go viral? We CAN make this happen!
On our way home from the George Canyon Heroes Tour, my youngest son asked me to help Mike get on Ellen. He said that we needed to do something. I promised him and my friend Sandy that I would do just that. I would blog, I would bother people I knew and people that I didn’t. I would tweet. I would post on my website. I would do all I could to get the word out.
Yesterday I made contact with a person from a major news outlet. I asked that they consider a human interest piece on this wish. They were game! They wanted to know how much interest I had generated thus far. They want to interview Mike. They want to talk to my son about why he decided that Mike should have this wish. All is amazing except for the last part. If you remember, my son has sworn off the media. He did he last photo shoot for a CDA follow up report almost two years ago and he swore that his time in the spot light is officially over. Its going to be a hard sell to get him to talk to the media BUT I want to be able to tell her what an amazing job the Diabetes Community and the WORLD has done to share this (maybe then she won’t notice his mumbles, grunts and attempts to end the interview before it starts).
I have heard that yesterday Barbara Walters did a piece on diabetes that was possibly her worst ever interview. She did a terrible disservice to the diabetes community and has many people terribly upset. Let’s fix this by getting Mike Fisher on Ellen. Let him educate the masses about the realities not further extol the myths!
Please, please, please, continue to contact the Ellen Show. Please continue to share this on your Facebook page. Please send it to your support groups and private groups asking them to help us. Please tweet about it, blog about it, tell your friends and family about it. I am serious…if a house full of cats can go viral then the desire of one young man to help another see his dream of dancing on the Ellen Show should also be able to reach an incredible number of people as well!
Let’s show the world what a powerful voice we can be! We can change policies but for today, let’s just change the life of one young man and improve the way the world sees people with Type 1 diabetes with a great ambassador!
I am not American. I do not follow the celebrity gossip. I do watch movies. I know who Kevin Kline is and I like his work (who can forget “The Big Chill” or “A Fish Called Wanda”). I may have heard that he was somehow involved with diabetes but then again so is Cliff from Cheers (aka John Ratzenberger) and many other wonderful “celebrities”. Today I watched a clip that made me realize that he is more than just a great actor, he is a father. He is not just any father. He is a father of a child with Type 1 diabetes who wants the world to know that we need better for our kids.
Today he told the world that “Once you have a child with diabetes you immediately stop being merely a parent. You become a doctor, nurse, nutritionist, expert.” Mr. Kline when on to point out that diabetes never stops and worries never sleep…and neither do the parents.
For a change, the interviewers seemed to get it. Diabetes was taken seriously during this interview. The only part that saddened me was the focus on technology rather than a true cure. I appreciate technology. I have seen incredible leaps in the eleven years my son has been dealing with this disease and I am forever grateful. I am a bit more content knowing that he will most likely have CGM technology to take forward in his life but he will still have to wear it. He will continue to be a walking robot with a number of machines needed to keep him alive. He will be alive but there will also be a cost…a huge financial one.
At the moment, we have difficulty having insulin pumps covered under our health care system depending on your age and where you live. How will my son afford his pump AND a CGM as well as all of the other “stuff” associated with this technology? That truly scares me. It is something that he will have to consider when both chosing a career and deciding where he will live.
I do not want to take away from the message of Mr. Kline however. He showed true emotion as a father of a child with diabetes. You could see the worry and sleepless nights in his face. He described diabetes as being similar to having a newborn all over again. With a newborn we carefully listen for breathing and fear SIDs. With diabetes, we also watch breathing but fear ketones, Dead in Bed, and medical malfunction to name a few.
Just after watching this interview, I scanned through my Facebook news and noticed blue candles. Another child had died. He was a teen aged boy, just out of high school. This morning I received a memorial from a family of a 24 year old young man who had died because his diabetes became too much of a burden for him to carry.
Its all very overwhelming. I pray that the American politicians listen to what these JDRF delegates have to say. I pray that the world listens as well. Together we can work towards a cure not just a larger bandaid. Together our children will live long and healthy lives.