Daddy's Blog, School Blog Scott Benner Daddy's Blog, School Blog Scott Benner

Fear can look like a bus

How do you hand your child over to a stranger?  Even when there is no medical issue, sending your kids to school is a stressful thing to go through.  I always use the bus as an example.  We spent countless hours researching car seats and painstakingly strapped our kids into them.  We spent extra thousands of dollars on a car with a better crash rating and then one day we just ignored all of that and pushed our son onto a 14 ton bus with an elderly man that I never met before and waved goodbye.  Anyway you slice it, that’s not so smart.  Now I’m no paranoid and I love that my children are growing more and more independent with everyday.  In fact I understand and welcome the lessons that they will learn when they are away from us and I know that in all likelihood their bus will never be in an accident.  So I put Cole on that bus... but Cole isn’t in any reasonable risk of experiencing a dire medical emergency, Arden is.

 

So, Fear #1 - I’m afraid of the bus.

 

How did I make that fear go away? I didn’t but I did dwell it quite a bit.  First thing I did was not take my first option which was to request in Arden’s 504 plan that we be provided with a smaller, air conditioned bus with a medical aide on it.  I could have and I’d have been well within my right to do so but I don’t want that to be Arden’s experience.  I want her school days to be as normal as possible.  So I contacted the transportation department and explained Arden’s situation and we were able to adjust the bus route so that she is the last one on and the first one off.  Her bus time is as limited as possible and I think that with the nurses help we can keep Arden’s insulin peaks away from her travel time.  Additionally, the bus company found us a more empathetic then normal driver.  A very nice woman who isn’t put off by the diabetes or by the extra responsibility that we’ve unfairly asked her to shoulder.

 

Sadly, all of the planning in the world can’t avoid a low BG incident forever, so Arden has a cell phone and an emergency kit with food, juice and fast acting glucose.  She knows to eat and drink if she feels strange and the driver has been instructed to let her do so.  We’ve also given the driver information on how to access Arden visually and a plan for what to do in an emergency. 

 

**

The following are archived comments from this post. You can post new comments below.

Anonymous

Hi,
I'm sure Arden will do well.  I'm excited to hear she has a pump now.  Just wanted to say hello!!!  She is getting so big.
Best of luck in school Arden.
Miss you guys.
Sakeenah Boyd, NP (former Diabetes Nurse Practitioner)

Monday, September 21, 2009 - 09:12 PM

 

 

 

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Home Preparation

So we began to mimic a school day at home so that Arden’s transition would be as smooth as possible.  First thing we did was to switch Arden to an insulin pump at least six months before the start of school.  You can read more about that in our OmniPod blog.  So...

 

Switch to an insulin pump: check.

 

Then we said goodbye to our no pressure meal times and started eating at scheduled times so that we could better guess at Arden’s reactions to food on her BG (food has different effects on Arden’s BG at different times of day).

 

I don’t much like being that scheduled but at this point what’s one more thing???

 

Switch to a scheduled mealtime: check.

 

We began to ramp up Arden knowledge of self-care.  We talked with her about how to handle a low BG if she is alone and bought her a cell phone in case of emergency while on the bus (so that we can locate her with GPS).  

 

Addressed almost paranoid concerns: check.

 

Next thing to do is draft Arden’s 504 plan.  I’ll explain what a 504 is here and then write about it’s construction in my next post:

 

From About.com: The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act,which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.

So we began to mimic a school day at home so that Arden’s transition would be as smooth as possible.  First thing we did was to switch Arden to an insulin pump at least six months before the start of school.  You can read more about that in our OmniPod blog.  So...

 

Switch to an insulin pump: check.

 

Then we said goodbye to our no pressure meal times and started eating at scheduled times so that we could better guess at Arden’s reactions to food on her BG (food has different effects on Arden’s BG at different times of day).

 

I don’t much like being that scheduled but at this point what’s one more thing???

 

Switch to a scheduled mealtime: check.

 

We began to ramp up Arden knowledge of self-care.  We talked with her about how to handle a low BG if she is alone and bought her a cell phone in case of emergency while on the bus (so that we can locate her with GPS).  

 

Addressed almost paranoid concerns: check.

 

Next thing to do is draft Arden’s 504 plan.  I’ll explain what a 504 is here and then write about it’s construction in my next post:

 

From About.com: The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act,which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.

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I know that four years is a long time to ask for help

I always approach this time of year with great trepidation.  Arden’s JDRF walk is on October 25th and I am about to reach out to all of you and ask for money.  As the years go on I would understand if some of you started to think that your money was being wasted if for no other reason then Arden still has diabetes and no cure has been announced.  What I would ask you to keep in mind is that the path to the cure is full of the flowers of progress and we should take time to stop and smell those roses on our journey.  By that I mean that there have been numerous advancements realized through the JDRF, these advancements have a direct impact on Arden’s health and happiness as well as the millions of other kids with type I.  I will be listing them one at a time for you to read here on the blog so that you can get a more complete picture of where your donation goes.  You can make a donation to Arden’s walk here and become a walker here.  Please read on if you’d like to learn about the JDRF’s work with continuos glucose monitors and how they improve health and lengthen life.


ABC News Lists Human Clinical Trial of Continuous Glucose Monitors Among Years Most Important Advancements

From JDRF.org: NY, January 8, 2009 -- The groundbreaking human clinical trial funded by JDRF that showed that continuous glucose monitors can improve diabetes control was cited by the ABC television network as one of the top 10 medical breakthroughs of 2008.

ABCNews.com polled top medical centers and physicians in putting together its list of the past year's most important scientific advances.  The 10 developments chosen, which ranged from JDRF's CGM trials to advances in Alzheimer's research and an early blood test for Down syndrome, were considered the most important scientific breakthroughs by medical practitioners and the most interesting by readers.

The JDRF CGM trial was the first major, multi-center trial to document the benefits of CGM devices in helping people with type 1 diabetes better control blood sugar levels and reduce the risk of devastating complications.  CGM devices, manufactured by several companies and approved by the FDA as an adjunctive therapeutic for diabetes, are a small monitor connected to a sensor that people with diabetes wear, that provide both a real-time snapshot of the glucose levels of a person with diabetes, as well as trend information on whether glucose is moving upwards or downwards, and how fast.  The devices also provide warnings when the glucose is becoming too high or too low - both dangerous conditions.

"The recognition the CGM trial is receiving will come as no surprise to people involved with diabetes research," said Dr. Alan Lewis, President and Chief Executive Officer of the Juvenile Diabetes Research Foundation. "These study results promise to be a cornerstone of our research into metabolic control and the development of an artificial pancreas, as it shows that these technologies can provide significant improvements in the lives of people with diabetes."

Type 1 diabetes is an autoimmune disease in which the immune system attacks and kills off the insulin-producing cells in the pancreas.  Without insulin, sugar from food cannot be turned into energy, accumulates in the blood stream, and can cause death.  After diagnosis, people with type 1 diabetes need to check blood sugar levels multiple times every day and give themselves multiple injections of insulin, or use a pump to infuse insulin - each day, every day, for the rest of their lives.  While insulin can help control diabetes, it does not represent a cure; and even with insulin treatment, people with diabetes have significantly increased risks for devastating complications, including kidney disease, blindness, nerve disease, and heart disease.  However, research has demonstrated that improved control reduces the risk of complications.

As many as 3 million people in the U.S. have type 1 diabetes, with children representing half of those diagnosed each year.

The JDRF study was a randomized, controlled trial involving 322 patients spanning the age range of 8 to 72 years at 10 sites, which included academic, community, and managed care-based practices at the Atlanta Diabetes Associates, the Joslin Diabetes Center, Kaiser Permanente Southern California, Nemours Children's Clinic, Jacksonville, FL, the Lucile Packard Children's Hospital at Stanford University, the Barbara Davis Center for Childhood Diabetes at the University of Colorado Denver, the University of Iowa, the University of Washington, and Yale University, and coordinated by the Jaeb Center for Health Research in Tampa, Florida.

"The CGM clinical trial results are very important, because they show that continuous glucose monitors are tools that can substantially improve diabetes control when used regularly.  And better control can lead to a lowered risk of complications, fewer hospital visits, and importantly improved quality of life" said Dr. Aaron Kowalski, Program Director for Metabolic Control at JDRF.

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