If you have found this blog, saying Welcome does not really seem appropriate. I know you wish you weren't surfing the internet for diabetes. I felt the same.

A big part of me wishes I were not writing about diabetes, nor did I anticipate to become so opinionated or informed on the subject, but it happened. In 2010, my son was diagnosed with Type 1 Diabetes.

It wasn't really part of the plan… Correction - it was not part of the plan, but it happened. It is not always easy, but I think we are all doing okay, and I hope we continue to do so.

Why the Middle East? I happen to live in Dubai. I don't think that living in the Middle East makes mine or my son's diabetic experience any more unique or challenging than it does elsewhere in the developed world.

I hope you stick around, or read something you like. Feel free to comment and join the conversation, subscribe or follow this blog by liking the Facebook page Diapoint.

Please note: This blog does not give medical advice. I am opinionated, and I share my experiences, but the first rule of diabetes is to follow up with your doctor and/or nurse educator about your care, diagnosis or medication. If you do not have a medical practitioner that is helping you find your way through this crazy world, then do not give up until you find the right one.

Sunday, August 17, 2014

Advocacy & Education

It seems that lately I've been reading more about hospitals, schools, businesses and organizers that just do not seem to understand the needs or reality of Type 1 Diabetes.

School will start soon, so we all need to take the time to sit down and write out directives and plans for our children's schools, teachers and others, and meet with them all to go over those plans in detail.

This is just one of the many things we have to do, and it does not mean that our guard is down the other 50 or so weeks of the year.  As the caretaker of a child with Type 1, you always have to be on top of it.  You know the in's and out's as a pancreas, but you should also not be afraid to be your child's advocate and educate those that need it, regardless of the situation.

I have found myself doing this, but I didn't actually realize I was doing it at the time.  I thought I was just insisting my son get proper medical care and normal social treatment.

One of our first experiences with this was during our first DKA that put us in the hospital.  My son was overdosed twice during that visit - once in the ER when a hydration drip was not set properly, and again on the floor when the nurse proceeded to give him glucose with no insulin running.  We are very fortunate that these were not serious overdoses.

My husband and I have a background in healthcare management.  We know that human mistakes can still occur anywhere at anytime, but that really got our attention.

You do not have to be a doctor to be involved in your child's care.  Although there are doctors and nurses, once you live with Type 1, no one will know your child better than you will. Make sure they are getting the correct care and medication they need.  If you are not getting that, then keep escalating and talking to people until you find someone that can understand your needs.

Sometimes you may find yourself educating medical staff about diabetes or some of the latest devices available.  I was shocked when no one at the hospital knew there was a glucose meter that could measure keytones, or knew how to insert the site of an insulin pump.  It was quite a site to see the pediatric nurses quickly run down the hall to our room to watch me do this.

After that first DKA experience, and other medical errors in the years that followed, I now follow up on medical orders given.  Nurses are great advocates, but they are also human.  Always understand what it is the doctor has ordered them to do.  You have the right to ask questions and understand the treatment plan.

Advocacy and education does not always take place in a hospital room.  It happens in other places too - when scheduling doctor's appointments, dealing with insurance, extra circular activities, in public, at school and more.

I am lucky that my son's school has been very supportive to ensure he is not excluded from anything because of his diabetes.  However, the first time he had a field trip, the KG1 lead was insisting that no one could go with him to be his caretaker for diabetes.  Neither I nor a designated caretaker would be allowed to attend. Period.  The obvious result, would be my son would not be able to attend the event.

My heart broke for him and I wanted to cry on his behalf when the teacher informed me. Instead I took a deep breath, went home and wrote an incredibly long letter to his teacher, the principal and school health office.  The nurse was great in helping me advocate for him.

With a few bits and pieces of paper work, it was resolved.  It didn't make me feel any happier that someone who was uneducated about the situation would be so quick to dismiss a child from an activity to make him feel different. At least he never knew it happened and I was able to manage this first road block behind the scenes to ensure he experiences all school activities as normal as possible.

Not every day is full of education and advocacy, but be ready for it.  It is something the diabetic child will face at different times throughout their life for different reasons.  Like anything, as a parent we need to be prepared to handle it, and once our children are old enough they need to also know how to manage it.

Where to start?  If faced with a tough situation, don't hesitate to reach out to a support group - whether in person or online.  Its most likely something someone has dealt with before and other parents of Type 1 would be more than happy to offer their advice and support.

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