Stolen Parenthood

Tear drop stolen parenthoodAs a follow-up to my article of Stolen Childhood, I turn my attention to us, being parents.  Today I aptly entitle my article; Stolen Parenthood. 

There is an anticipated joy that becomes apparent when we know we will be parents.  The responsibility, as we are all fully aware, is tremendous.  Every decision we make is to better our child.  What happens when diabetes takes up residence?

There is no doubt in anyone’s mind what we do for our children when diabetes hits.  We will do all we can to get their lives as close to normal as possible…….even as I write those words, a lumps sets in my stomach.  Truly that challenge is daunting at best, but we take it on full force.

But what about us?  Do we give ourselves the same shot we attempt to give our children?  Do we strive to do all we can to get our lives back to normal as we do our children?  If not, why not?  Do we buckle our seatbelts for their wild ride yet leave ourselves ‘unharnessed’ in the driver’s seat of our own lives?  Do we just take it as it comes?

All important questions to ask, don’t you think?  I would like to say that our kids are watching and we should do all we can to make it look like we are keeping it all together for their benefit but the truth of the matter is that we need to do more.  Remember that saying, looking out for number one and number one being ourselves?  Listen to me carefully here.  You can find a hundred million excuses why we let ‘us’ go by the wayside, but there is really only one good reason….and that answer is YOU.

No you cannot do anything about your circumstances and you will deal with your kids as you have been doing since day one.  But when was the last time you had your hair done, your nails done, took a walk along the shore or a walk in a park, went to a concert (and almost every community has free ones you can attend), or did anything for just you.  You MUST.

If you do not relax your mind, find a way to relax your mind, everything will be impacted from your own self-worth to every relationship you have.  You must find a way to take care of……..you.

Parenthood is not a job, a business, a vocation…….it is an absolute gift.  Whoever receives a gift and allows that same gift to become the biggest obstacle in their own life?  Who would ever allow that to happen?

Now, there are always circumstances way beyond our control that can really throw our lives ‘into a tizzy’ (as my mom would say).  My question to you is how hard have you tried to hold on to the joys of parenthood.  The joys of life.  One shot on this earth.  That’s it.  What choice have you made?

Look around you, why are some enjoying life at every turn and you just cannot?  There is no magic trick.  There is psychological help if you need it, there are medical professionals who can help, and there are choices you can make.  No one should live life in misery.  If you cannot ‘shake this on your own’ speak to your medical doctor.  But take today and evaluate how you get from point A to point B; and do it.

Look at your life and decide (realize) today that parenthood should be much more joyful than it has been; and take the steps to get you there.  Every day does not have to be ‘twinkle toes’ but every day does not have to be walking on hot coals either.  You deserve better than that…….the challenge remains that the only person who can give that to you……is you.  Now go find YOU!

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Stolen Childhood

Stolen childhoodIt almost sounds like it could be a name of a movie, doesn’t it?  In as much as I fully understand the fact that so many work so hard, oh so very hard, to make sure kids ‘get back out there’ into the world while managing their diabetes; and am also fully appreciative of the fact that we all do our absolute ‘damn-est’ to equal the playing field, the truth of the matter is we all live with our ‘stolen childhood’.

Well we really do not live with it, we sort of are observers to a freight train running at full speed and we do all we can to keep up with it.  I pride myself that in our house, our kids did everything everyone else did who did not live with diabetes.   We made sure they could achieve anything and everything growing-up.  From the outside world, our kids excelled in just about everything.  One would think that there was nothing different.  I am sure it is not much different in your house as well.

AND THAT, my dear friends is the difference in our world.   IT IS DIFFERENT.

Their lives were beyond different and in fact, we left different back at the gate a long time ago.  No one understands like a parent the hardship, the heartache, and the pain to MAKE SURE that our kids live a full life.  But nothing changes the fact that we DO NOT just go-to-bed at night.  We DO NOT ‘just’…..well….do anything since they were diagnosed.

In fact if you wrote down everything we had to do to make sure our kids ‘just got back out there’, one would take a step back from that list and state; no one could possibly do all that and stay sane.

Sane?

What does that even mean?  Because the simple truth is, on paper, no one could actually do what we do…..what our kids do.  The enormity of it is piled on so high that the stress would break any every day, run-of-the-mill, normal(?)  person.  Most would crack from the medical strain.  Most would crack from the pressure.  Most would crack knowing that at every turn, at any turn, it can all ‘go south’ to being a disaster.  Most……well…..could not do it.

But we do…….don’t we?

Because we are NOT most people.  We are parents to children who live with diabetes.  Some even have more than one child with this stupid disease and no matter what comes our way, no matter how many times we cannot continue, no matter how many times we JUST CANNOT wake up again in the middle of the night, no matter how many times we cannot shed one more tear, no matter how many times we can not give one more shot or change one more infusion set, no matter how many times we do everything we do……..we DO THAT one more time because we have to.

Because whoever decided that we would be given this lot-in-life; we have all decided that diabetes will just not do at winning in our household.  We will do everything and anything to fight, support, advocate, raise funds, and take care of our children.  We make that choice every day, every hour, and every second.

Because it’s so hard when fate/life becomes so cruel and we do all we can to fight having our kids’ stolen childhood……..and we will continue doing our damn-est with every ounce of fight we have.  Because we are parents, parents of kids who live with diabetes.

And I think we’re pretty special…….don’t you?

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

A Short Video to Make You Smile……Sometimes it’s GREAT to be a KID Again.

Jump on meHere is a two-minute+ video that should just make you smile today…….the take away for today: Sometimes we need to do something from our childhood……..just to keep us young, no matter what age we are.  Click the picture and enjoy…….and share it with someone who needs to smile today.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

 

Do………What You Think Cannot Be Done.

Mt EverestIn my many years as an actor, I have learned to observe.  To take a step back and notice a nuance, a glance, a touch.  People are such fascinating observations in their physical-being, and the human spirit is even more incredible to watch.

I was reading about a friend of mine who hiked over 100 miles recently.  Chip is 57, obviously in good shape, but to take off on that type of journey is inspiring.  He stated that he did not get as far as he wanted, and I am thinking, if 100 miles was not enough, how far did you really want to go?  You could feel in Chip’s words the pride he had in accomplishing something that he did not know he could do.  It was an amazing feat.

We hear of the incredible stories of Sebastien Sasseville who talks about running the equivalent of 180 marathons in 90 days straight across Canada by initializing his speech about arriving on the Summit of Mt. Everest, all hard enough but doing it while managing type 1 diabetes….incredible….right? (FYI the picture included today is Sebastien on Mt. Everest)

And how about all of those people who ride bikes over hundreds of miles for a cause; or attempt incredible human endurance events like my friend Sandy.  Or my friend Sean who rides a snowboard in incredible feats of strength while managing T1 diabetes, and now doing it with lupus as well.

Many of these people are no different from you and I.   Well, wait—Sebastien or Sean? No they are a different story but the others, the same as you and me.  But they all just decided to do something to test their strength, and it was more the strength of their mind than their bodies.  You can ‘get’ your body into shape; it’s your mind that makes the call to begin.

Whatever your ‘Mt. Everest is in your life’, you scale that mountain by beginning.  I have come to know amazing people, people who have gone back to school in their 50s/60s, people who have re-started their life, people who began SOMETHING by saying the simple phrase, “I want to do this, I can do this.”

And make no mistake about it, letting your child with T1D go to their first sleep over can be just as big a hurdle as climbing Mt. Everest.  Fear is fear is fear.  But whatever it is, YOU are bigger than that fear.  Take fear, change it to respect, and give your fear the respect it needs and you can move forward.  We can deal with respect more than we can deal with fear.   One step.  One step.  One step.

So let your child with T1D join the cross-country track team this year…….it feels good when you conquer something and look down from the summit……….try it.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

DKA and Undiagnosed T1D……Is Still Here…….Just Don’t DO Nothing….Plug Yourself In!!!!!!

DKA Has it gone awayHow do you know if you made a difference; if the point was driven home?  How do you know if the listener ‘gets’ what you are sharing?  What happens when the dust all settles and we move on with life?

A few weeks ago we lost two children in one weekend to DKA and undiagnosed type 1 diabetes (T1D).  The diabetes community was screaming from the mountaintops.  A few months before, another life was cut short;  what have we done about it?  I was speaking to little Reegan’s mom and said, unfortunately, this amount of information and flurry of activity will subside, but hopefully a few people will engage in doing something.  She stated quite matter-of-factly when she answered, “It will never subside for me.”

“It will never subside for me.”

For her or Kycie’s Family, or David’s Family or for anyone else who has undergone this horror, it will not subside. And IT WILL happen again.

Are you still pissed about it?  What have you done?  Don’t answer me, I’m not the gate-keeper here but I ask you to ask yourself.  Have you done anything to help this situation?

Debbie, a d-Mom has. She created Ease T1D.  She writes to me;  EASE T1D has a petition similar to Reegan’s Rule in California with the exception that ours includes the screening of children who present flu-like symptoms.  We have already met with representatives from both our Assemblyman Eric Linder and State Senator, Richard Roth’s offices. We are also helping to assist others with this legislation who want to follow suit in their state. As of now, we do not have an author for this proposed bill, but are hoping for Senator Roth. We will find out in the Fall. Our website is www.easet1d.org.

One person with an idea.

Karen in Pennsylvania created something as well.  It’s called PA-UP Rising Against DKA which is part of a bigger movement called UP Rising Against DKA, more d-moms making a difference.  The PA group is administered by Debbie (who is working on legislation in PA as well) and also Cindy (who also administers the UP Rising Against DKA as well).  There is another site entitled Test One Drop which exists to bring awareness to the need for better screening for Type 1 Diabetes.  You can download a poster from there and place it in your community.  Cindy is the brains and powerhouse driving force behind this as well.  These d-Parents have very full plates as well, but they are finding time to make a difference.

Not to mention all of the amount of work Reegan’s mom has done to make the state of North Carolina stand up and notice.  She is doing all of what she has done with a shattered heart that never can be mended.  She has worked tirelessly to make this world a better place.  She has dropped everything on many occasions to run to her State Capitol to tell, relive even, her horror story so people know.  So people will make change a reality.

People ARE doing things.  More needs to be done……we need you.  Download a poster from Cindy’s site or you can go to www.GetDiabetesRight.org as well.  Even here people are helping as our friends Jimmy and Mila of the incredibly huge site for those who speak Spanish www.FamiliasconDiabetes.com will be translating some of our posters into Universal Spanish.

With school getting underway, contact the schools activity coordinator, contact groups like the Boy Scouts, Girl Scouts, 4-H, Royal Rangers, Daisy Groups, and any other group that values community service and ask them to distribute posters in your neighborhood.  Just a little effort can go a long way.

Legislation will take time…….there are steps that can be done NOW.  Let’s not wait until ‘it happens again’……and I have been at this a long, long, time; you can bet your last dollar it most assuredly will happen again……………..it’s just up to all of us to do all we can to make sure it doesn’t.  I am sure there are people doing things in their own way and THAT’S GREAT, I am seeking those who still have yet to try.  If you are ‘maxed out’ in what you do for the diabetes world….fine; but if you are looking to get involved somehow…….this is the initiative that can truly make a difference.

As Reegan’s mom shared; “It will never subside with me.”   Can any of us, really, just sit by and just do nothing?????  Don’t just do nothing.  Start now……the wheel is invented….just plug yourself in.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

School’s Open…….If One Roars ALL THE TIME…..It Won’t be Heard.

LionWe took every precaution there was.  We read-up on what every parent suggested.  We had back-ups of back-ups.  We met with the nurse.  The kids were all getting a letter home in her K class so everyone was on the same page.  Our 504 plan was in place.  Jill had quit work so she was ready for anything………and still the poop hit the fan on day one.

For reasons way beyond our control the bus took a different route and dropped Kaitlyn off almost an hour past when she was supposed to be dropped off.  This was way before cell phones and this was actually back-in-the-day when you could not be in contact with the bus driver.

This was Day One.

I tell you that so you know, I totally ‘get’ the frustration with what can happen on the first day of school.  Imagine the panic of not knowing where you child was/is in general; and now add to that the anxiety of your child not only having T1D, but on the VERY FIRST DAY of school in her life.  Not 10 minutes late, not 20, not even 30—-but an hour.

Got that feeling in your stomach?

Why I was not arrested for murder that day was probably sheer luck that I could not get to the school.  But it was a lesson learned, a crucial lesson learned.  No matter what you do, SOMETHING is going to happen.  I also learned that in a school system, this may surprise you, they do not revolve around our kids with T1D.  Do they care?  Sure they do and that is why they became involved with the school district to begin with; in most cases they LOVE kids.

But they also have to deal with hundreds of kids every single day at any given moment.  Now hear me correctly, when something goes wrong they need to also be responsible.  And more importantly, they (and we) need to be responsible in advance of something going wrong.  But even after every step being taken, something will derail.  It’s at this point that WE NEED TO BE AT OUR BEST.

Remember when a mistake is made, your most important objective: to ensure that it never happens again.  How you get there is up to you.  But your actions will dictate how successful your future will be.  Being upset is absolutely understandable but always remind yourself that the next step is to correct it.  Respectfully, firmly, and respectfully—-yes ‘respectfully’ is listed twice for a reason.

There are too many scenarios to list one-by-one but just remember your actions set the ground work.  When Kaitlyn’s stop was missed, as angry as we were, she was fine.  We did not contact the principal every time something happened.  If we had to work it out with the teacher, gym teacher, and/or school nurse, we did.  We went to the principal only when needed, and they responded over the years.

School officials may know because they know; they may know because you told them; but they DO NOT KNOW your child as well as you.  Your child(ren) are your world.  I know the force of ‘mama-bear’ and all that goes ‘with it’, but just remember that NO ONE knows ‘your child’s every move’, like you do.

Again, I am in no means making excuses for anyone but I’m reminding you that your child has to be in school every day; pick and choose how to correct a situation and when to roar.  Roaring all the time only makes people immune to hearing it when it is happening all of the time.

Take a breath and always remember your objective—–to CORRECT the situation.  Food for thought.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: ATTENTION ALL NORTH CAROLINA RESIDENTS……SUPPORT NEEDED…….NOW.

ReeganWe are looking for Reegan’s Rule to come out of the North Carolina Senate Committee and be bought to a vote in the North Carolina Senate.  The bill (which is House Bill-20 and is now Senate Bill 27–REEGAN’s RULE) will encourage diabetes education by medical professionals to parents through the first five years of a child’s life.

We have worked with Representative Graham in the house and the bill passed in the House 111-6; and now Senator Smith has picked up the support and working with Reegan’s mom we have created a letter and we now need D-parents and friends who live in North Carolina to help the North Carolina Senate show the same leadership on Reegan’s rules by letting the Senators know Reegan mattered to all of us. This is a picture of the North Carolina Senate, empty. Let’s fill it with supporters of (click here) REEGAN’S RULE.

My friend and fellow D-Dad Bennet Dunlap at the Diabetes Patient Advocacy Coalition has created an EASY WAY for people from North Carolina to send their State Senator an email asking to support Reegan’s Rule. Submit your address and zip into Diabetes Patient Advocacy Coalition’s software on a form. It looks up your North Carolina Senator and prepares an email. Easy.

You can send it as is or even better personalize the email with you diabetes story. We recommend adding a few sentences about your connection to type 1 diabetes right at the beginning.

Here are the 5 easy steps:

  • Go to the page from here.  Enter you name, address, Zip and email.
    (We would appreciate you clicking remember me and opt in at the bottom of the form so we can keep you in the loop on this and other diabetes issues–but it isn’t required)
  • Click SUBMIT to create a draft email.
  • Personalize your email.
  • When you are happy with it click SUBMIT to send.
  • Share the opportunity to act with your Social Media contacts so other can follow you example and act to support Reegan’s Rule

Right Now – Our focus is on the North Carolina Senate. This advocacy form is for people living in North Carolina to contact their State Senators. Our hope is to be successful in North Carolina and build from that experience to wider efforts – Stay Tuned. For now – the form will not work for people living in other states, people in other state will get an error message – sorry. (But the Diabetes Patient Advocacy Coalition has other actions you can take, click actions in the menu at the top of the page.)

Any questions, just ask but please pass this to anyone living in North Carolina.

TOGETHER, we can do this.  Act Today!!!!!!!

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

You COULD Miss Out if it’s Done only the Way YOU THINK is Right.

my wayI’m always amazed at the stories I hear out there.  the lack of knowledge is truly astounding.  From us, as parents, to the medical profession……the comments I read so often boggles my mind.  Actually, it used to infuriate me but it happens so often now, I am down to ‘eye-rolling’.

There is also a very dangerous thought process out there that is in-line with “you can’t tell me what to do with my child.”  I agree, no one can.  That said, there are some very basic thought processes about the science of diabetes that we parents need to face head on.  Because you don’t think it applies to you, does not mean it does not.  Be careful.

I get it.  I really do.

Because ‘we say it’, does NOT make it necessarily true.  And the more you do something incorrectly, the more you are ‘off’ from the original. Constantly ask yourself if the things you do are ‘sound’.  Not in a discussions, but you, yourself; when all alone—–this IS NOT about BEING right, it’s about DOING what’s right.  When I first heard of the artificial/bionic pancreas; my initial thought was just, ‘no way’.   What was everyone getting so excited about?  But the truth is, no matter what I felt back when, if I did not do more homework to understand what was happening, I would not have come to appreciate all that is happening in that world as I do now.  If I can change, anyone can change.

The original insulin pumps were the size of a spaceman’s back-pack; look where we are today.  My point is that no matter what I THOUGHT, it was merely that, my thoughts.  It was not until a good friend ‘forced me to REALLY look’ at what was happening in this field to fully appreciate it, and to realize my thoughts…….were wrong thoughts.

Don’t be afraid of something you do not know and surely DO NOT RUN from it.

I’m constantly going over my internal checklist on management tools, insulins, how-we-do-things, medical practices; I then go over what is new out there.  What is new?  Am I using it?  Will it make a difference?  If words like Night Scout, the Cloud, Bionic Pancreas, BioHub, CGM, I-let Pump, Fast Insulin, and Nasal Glucagon—-are all words that are foreign to you…..do not be afraid of them…..look into them.  Some show real promise in many areas of our lives.  Some may mean nothing to you……but find out.

We cannot be afraid to learn……ever.  We cannot be afraid to ‘re-look’ at everything every chance we get.  It’s truly an exciting time when it comes to ‘diabetes technology’ and just because we do not ‘do something’ does not mean that we are doing it correctly; you could be missing out.

What you don’t know can’t hurt you…………is a saying that we need to throw out the window but we also need to be ready to realize that truth is truth….whether we want to face it or not.  And THAT is not always easy……..is it?

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

School’s Open—-A Copy of a 504 Plan—–Spaghetti on the Wall—-if it Sticks; Use It.

504 planSchool’s Open REAL soon.  Many people have asked me this week for a copy of our 504 plan which we proposed to the school.   There are many out there if you look around and certainly no one owns the market on what a 504 plan looks like and by looking at a few, you may grab a pointer or two from more than one; it’s all about what is right for your child.  This was ours and as a FYI—this became the accepted 504 plan.

(Cover page:)(Name omitted)

Initial Draft: 504 Plan

Presented for Review: (DATE)

XYZ School District

Respectfully Submitted by (names omitted) for Perusal (DATE)

(Page 1)(Name Omitted)

Initial Draft 504 Plan

Presented for Review: (Date)

(Name of) School/School District

School Term: Open ended; to continue as long as (Name Omitted) is a student; amended as mutually agreed upon

 

  1. Both high blood sugar levels (hyperglycemia) and low blood sugar levels (hypoglycemia) affect (Name Omitted)’s ability to learn and to perform major life activities such as eating and caring for oneself, as well as seriously endangering his health. (Name Omitted)’s blood glucose levels must be maintained in the 80-150 range for optimal learning and testing of academic skills. (Name Omitted) has a recognized disability, type 1 diabetes that requires the accommodations and modifications set out in this plan to ensure that he has the same opportunities and conditions for learning and academic testing as his classmates with minimal disruptions of his regular school schedule and with minimal time away from the classroom.  Steps to prevent hyperglycemia and hypoglycemia, and to treat these conditions if they occur, must be taken in accordance with this plan.

 

At least 3 (name of) School/School District Staff members (The School Nurse, Principal and/or Principal’s designee) will receive training or has been trained to be an Authorized Diabetes Care Provider (ADCP) and that an ADCP will be available at all times during school hours, during extracurricular activities and on field trips (which sometimes may be mutually agreed that one of (Name Omitted)’s parents will serve as an ADCP for class trips) to oversee (Name Omitted)’s diabetes care in accordance with this 504 plan including performing or overseeing insulin injections, blood glucose tests, ketone tests, and responding to hypoglycemia and hyperglycemia I including administering glucagon.  A written back-up plan, including all of the names of the ADCPs, will be implemented to ensure that an ADCP is available in the event that the school nurse is unavailable.

 

  1. Any staff member who has primary care for (Name Omitted) at anytime during school hours, extracurricular activities (see #1), and/or during field trips and who is not an ADCP, shall receive training to be a Diabetes Care Assistant Provider (DCAP). Primary care is defined as the staff member who is IN-CHARGE of a class or activity in which the student participates. An ACP or other designated trained staff member shall accompany (Name Omitted) on field trips when parent is not present and provide accommodations in accordance with these provisions.  The parents will NOT be required to accompany (Name Omitted) on field trips or any other school activity.   All trips and/or school activities will be discussed a minimum of 30 days in advance so proper steps are taken that (Name Omitted) does not miss an opportunity to partake in an event with his classmates.  If parents are unavailable the school will arrange coverage as per school policy.  A copy of that exact portion of the school policy must be attached to the 504 plan upon agreement.

 

  1. The school nurse will coordinate with (Name Omitted)’s parents a snack and meal schedule that is consistent with the schedule of his classmates to the closest extent possible. The school nurse or school staff member responsible for class activity will also notify (Name Omitted)’s parents no less than two days in advance of any expected changes in the school/classroom schedule that may affect (Name Omitted)’s meal and snack times or exercise routine (i.e. Field Day, field trips, runs, walks, classroom parties, and/or the equivalent.)

 

  1. ALL school personnel will permit (Name Omitted) to eat a snack at anytime and in any part of the school, school grounds, any associated school trips, and/or while waiting or riding in school buses, to treat hypoglycemia either measurable or if (Name Omitted) feels as if his blood sugar is dropping.

 

  1. (Name Omitted) shall be permitted to eat a snack anywhere on the school grounds including but not limited to classrooms, library, gym, auditorium, and school bus.

 

  1. (Name Omitted) shall have immediate availability and access to treatment of hypoglycemia without the necessity for him to travel to the health office.

 

  1. (Name Omitted) shall be permitted to carry on his person at all times (including but not exclusive to: Pockets, backpack, desk etc) glucose tablets, glucose gel, glucagon, insulin pump, insulin needles, snack, glucometer, lancets and incidental supplies. (Name Omitted) will also be permitted to keep his supplies and equipment in his locker (if he chooses).

 

  1. (Name Omitted) shall be permitted to use the bathroom and water foundation AS NEEDED and may just signal to the person in charge that he is leaving. Any questions arising to the need/frequency to use the bathroom facilities will be directed to (Name Omitted)’s parents and not to (Name Omitted) at any time. he will be permitted to keep a water bottle in his possession or at his desk.

 

  1. High or low blood sugar levels should be treated immediately

 

  1. (Name Omitted) shall be permitted to participate fully in all school sponsored activities; including but exclusive to: sports, field trips, enrichment programs, that occur after regular school hours without restrictions and with all of the accommodations and modifications including necessary supervision identified and set out in this plan.

 

  1. (Name Omitted) shall eat his lunch at the same time each day or earlier if hypoglycemic and/or as deemed necessary by the ADCP (should a change be needed, (Name Omitted)’s parents will be informed on the same day of the occurrence). If (Name Omitted) is experiencing hypoglycemia and is buying lunch, then he will be placed at the front of the line.

 

  1. (Name Omitted) shall be permitted to take exams and other academic tests at other times, if he is affected by high or low blood glucose levels at the time of the regular testing, without penalty. (Name Omitted) shall be permitted to have extra time to complete his classroom work if he is affected by a high or low blood glucose levels or needs to excuse himself for either use of the bathroom facilities and/or use of the water fountain in addition to perform a blood glucose test and/or to treat hypoglycemia or hyperglycemia.  This procedure is to be followed for any and all testing including testing mandated by NY State, which has contingency procedures in place for such occurrences.

 

  1. (Name Omitted) shall be provided with instructions to help him makeup classroom time and assignments due to any of the mentioned conditions in #12. Additionally, (Name Omitted) will be provided with extra time to complete class work, out of school assignments, and/or tests without penalty if he is affected by high or low blood glucose levels or needs to take breaks to use the water fountain or bathroom facilities, perform a blood glucose test, or treat high or low blood glucose symptoms.

 

  1. Parents will be notified by Instructors, Principal and/or Guidance Counselor of any and all assignments, quizzes, tests, and project grades that are below a C+ as academic performance may be adversely impacted by hypo/hyper-glycemia. Notification will be communicated immediately in writing upon grade determination during any time (Name Omitted)s average falls below C+ during the school year.  (Name Omitted) will be provided with an opportunity to makeup classroom time and instruction, or re-take tests, in accordance with paragraphs 12 and 13.

 

  1. Given the choice, (Name Omitted) will be permitted to check his blood glucose level with his meter, administer insulin (injection or pump), or eat a snack in the classroom, health office, or any location in the school, on the bus and/or on field trips and school sponsored off-site activities.

 

  1. (Name Omitted) MUST ALWAYS be escorted to the health office when he feels low, or feels he is ‘going’ low and chooses to treat the reaction outside of the classroom, gym or another area of the school.

 

  1. In addition to supplies kept in (Name Omitted)’s locker (if he chooses), in ample supply of supplies and food/drink pertaining to (Name Omitted)’s diabetes will be kept in the health office. The School Nurse will give a minimum notice of three days to (Name Omitted)’s parents if any of these supplies should be running low with less than a three-day supply remaining.

 

  1. (Name Omitted)’s diabetes supplies and snacks, including insulin and glucagon, are also to be maintained in the health office but diabetes supplies are also needed to travel with (Name Omitted) on field trips or to other off-site events. Nurse, and/or Health office staff, ADCPs, and other designated staff members should be made aware of the location of (Name Omitted)’s supplies and will make arrangements to ensure that (Name Omitted)’s supplies (either additionally enough taken from home after contacting (Name Omitted)’s parents or taken from the health office)  to accompany (Name Omitted) on school sponsored activities away from the school location.

 

  1. Substitute teachers and health aides need to be made aware of (Name Omitted)’s diabetes and be prepared and capable of providing compliance with the provisions stated herein. Teachers (or in the case when the absence is sudden, the Administrative Office of the school/Principal) MUST provide substitute teacher(s) with written instructions regarding (Name Omitted)’s diabetes care and an emergency plan, which also includes a list of al ADCPs at the school.  Substitute teachers will receive training on how to recognize hyper/hypo-glycemic reactions and know how to contact an ADCP and/or nurse if needed.

 

  1. At the beginning of each school year, all ADCPs and DCAPs of the (Name of school district) will have participated in a diabetes education program provided by the health resource/nurse of the school or from within the district.

 

  1. It is important that (Name Omitted) travel, as usual, with his peers on the (name of school district) bus as s/he has for years and not be segmented out for any special transportation mode. This may be accomplished with cooperation. (Name Omitted)’s bus drive (including both regular and/or ALL substitute drivers) shall be trained in the administration of glucagon, the recognition and treatment of both hyperglycemia and hypoglycemia.  (Name Omitted)’s diabetes supplies, including an edible snack, shall be kept on (Name Omitted)’s person at all times and under NO circumstances should they be taken away.  (Name Omitted) will not be prohibited from eating a snack or otherwise treating a low blood sugar. ANY bus driver who transports (Name Omitted) when neither an ADCP or DCAP is present MUST BE a Bus Driver Diabetes Care Provider (BDDCP).  Should the bus driver not agree with and/or understand a particular action (Name Omitted) is taking dealing with his diabetes care, under no circumstance should any discussion be engaged WITH (NAME OMITTED) regarding his activity on the bus, but rather, the parents and school officials (Principal) should be notified immediately that the bus driver would like to speak about any particular action or course of events.  Of course general inquiries and/or questions to ascertain an emergency situation may be made as needed.

 

  1. (Name Omitted) should not be penalized for absences or partial attendance in any classes including gym for required medical appointments and/or illness and shall be provided with an opportunity to make-up missed assignments, classroom work, and tests in accordance with paragraph 12, 13, and 14 herein.

 

  1. If (Name Omitted) so desires, he shall be provided with privacy for testing and/or insulin administration.

 

  1. (Name Omitted) shall have access to the school nurse or ADCP upon request

 

  1. Encouragement and being equally treated among (Name Omitted)’s peers is crucial. (Name Omitted) must not be treated in a way that discourages him from eating snacks on time, or from completing his own blood glucose ‘checks’, insulin administration, or his general diabetes care and management.  With the exception of (Name Omitted)’s medical needs, he should be treated as other students without diabetes and students should be encouraged to do the same.

 

  1. (Name Omitted)’s diabetes will be kept confidential except to the extent that (Name Omitted) or his parents decide to openly communicate about it with others or what is needed to be shared with school personnel (contract and full-time) regarding this 504 plan.

 

  1. Parent should be notified immediately in the following situations:
      • Symptoms of severe low blood sugar such as crying, extreme tiredness, or loss of consciousness.
      • Blood Glucose level below 60
      • Symptoms of severe high blood sugar such as frequent urination, presence of ketones (school nurse), or blood glucose level above 300
      • Under any/all circumstances should (Name Omitted) refuse to perform a blood glucose check, administer a bolus/insulin shot, and/or refuse to eat.
      • (Name Omitted)’s grades drop below a C+
  • Any injury
  • Act in a behavior deemed abnormal

 

 

  1. Parents will supply all diabetes supplies and snacks to the school nurse/health office and replenished upon request from the school nurse. Parents will come in within one week of the end of school to pick up any remaining diabetes supplies, meters, and snacks.

 

  1. In the event of an evacuation, shelter-in-place, or emergency situation should arise either during (Name Omitted)’s presence on the school grounds or partaking in school sponsored events off premise; (Name Omitted)’s 504 plan will remain in full force and effect and an ADCP will be available to provide diabetes care as outline by these plans. The ADCP will maintain contact with (Name Omitted)’s parents during said time in order to provide updates regarding (Name Omitted)’s diabetes care. (Name Omitted)’s parents will be permitted to retrieve (Name Omitted) as soon as parents are able to safely retrieve him without any unnecessary delays and when officials deem it is safe to do so.  The school nurse or other primary ADCP will be responsible for transporting diabetes food and supplies to the area students have been directed during the emergency.

 

  1. Should (Name Omitted) be selected for participation in any school activities (sports, school and/or club competitions or activities etc), at no time will participation be denied when practice or meetings have been missed as a result of a diabetes-related illness or medical appointment. If more than one consecutive day of practice is missed as a result of a diabetes-related illness or medical appointment, participation will be at the discretion of the school assigned moderator and/or coach in consultation with (Name Omitted)’s parent(s).

 

  1. All of the enclosed should be in effect as (Name Omitted)’s 504 plan and is enforceable and effective as the 504 Pan under the applicable federal and state laws.

 

  1. Insulin will be administered in accordance with the guidelines of the (Name of School District) and those guidelines will be attached to (Name Omitted)’s 504 plan. Should insulin be required, (Name Omitted)’s parents will be contacted by a school nurse.  If parents are unavailable, and (Name Omitted) is unable to perform the administering of insulin himself, the school nurse will administer the insulin as per doctor’s orders.

 

  1. All attachments outlining health procedures within the school district dealing with a child with diabetes will be attached to the final 504 document.

 

  1. A copy of the mutually agreed and signed copy of the 504 plan will be given to Mr. and Mrs. (Name Omitted) with all attachments as stated.

 

  1. It will be the responsibility of the School District to make sure that the 504 plan designed for (Name Omitted) follows him and is adhered to whether there is a change in the staff of teachers, schools, and/or district administrations.

 

                                                                                                           
Parent                                                                                                  Date

 

                                                                                                           
Parent                                                                                                  Date

 

                                                                                                                                     School Health Official/Nurse/Doctor/Print Name                                               Date

 

                                                                                                                                        School Staff/Title/Print Name                                                               Date

 

                                                                                                           
School Staff/Title/Print Name                                                               Date

 

                                                                                                           
School Staff/Title/Print Name                                                               Date

 

                                                                                                           
School Staff/Title/Print Name                                                               Date

I hope it helps a little bit.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

 

 

 

DKA SURVEY—State-by-State Breakdown as Promised

United-States-mapAs a follow-up to the survey I took in the diabetes community, I promised a state-by-state breakdown of some of the results.  If it helps when/if you meet with your state representative, feel free to use it, just be clear on how the data was acquired (that it is not completely scientific etc. etc.).

Again as a reminder:
LET’S BE VERY CLEAR FROM THE BEGINNING.  This was an exercise by a dad (me) because there is just no data out there with the same detail of what this survey relays.  It’s surely my hope that someone much smarter than I takes this on with resources that will paint an undisputable argument of the severity of DKA and a missed diagnosis.  570 people responded to the survey and every stated but 2 (Delaware and Vermont) sent at least 1 response.

The # OF RESPONSES is the TOTAL number of responses from that state.
$$$ PAID was the amount of the hospital bill as supplied by the person filling out the survey, not how much they paid out-of-pocket.  Many stated that it was much higher but they were giving a safe estimate.
$$$ # STATE PAID is in reference to Medicaid or a state agency within that particular state that paid the bill—–this amount IS NOT included in $$$ PAID category.
$$$ # MILITARY is in reference to the person was/is a member of a branch of the U.S. Military and the bills were paid by them.  this amount IS NOT included in $$$ PAID.
(NOTE: the attempt is to show that government has a financial ventured interest in helping to solve this problem as well as morally)
$$$ # NA/DNK
is in reference to those who stated that they did not know or remember the amount of the hospital bill.
# MISSED WORK DAYS were the total number of work days missed by the person diagnosed or by the parents.  It is the total number and did not differentiate vacation, sick, personal, or any paid days.  And even though we did not ask; 18 people commented that they left their job completely either by quitting or being fired.

STATE # OF RESPONSES $$$ PAID $$$ # STATE PAID $$$ # Military $$$ # NA/DNK # Missed Work Days
AK 1 1 14
AL 14 $230,000 2 1 3 151
AR 1 $4,000 8
AZ 15 $329,000 2 2 209
CA 59 $1,526,500 11 12 453
CO 18 $538,000 3 1 119
CT 5 $99,000 2 28
FL 18 $2,097,000 1 1 3 252
GA 17 $173,000 4 1 2 234
HI 2 $15,000 1 10
IA 2 1 1 8
ID 7 $35,000 4 1 61
IL 23 $1,398,000 3 5 220
IN 6 $65,000 1 1 2 16
KS 3 $21,000 1 24
KY 7 $53,000 4 2 20
LA 9 $30,000 3 1 3 88
MA 12 $176,000 2 2 217
MD 12 $68,000 2 1 5 153
ME 4 $70,000 1 2 19
MI 22 $166,000 8 3 267
MN 12 $44,000 1 7 98
MO 4 $15,000 3 21
MS 5 $173,000 1 1 53
MT 2 $80,000 1 134
NC 13 $170,000 2 1 1 175
ND 3 $30,000 1 10
NE 1 1 45
NH 5 $53,000 1 2 33
NJ 20 $383,000 1 1 5 489
NM 2 $68,000 9
NV 3 $53,000 1 254
NY 17 $122,000 4 7 1059
OH 6 $227,000 2 4 115
OK 6 $126,000 1 1 55
OR 20 $478,000 2 1 236
PA 26 $318,000 9 4 307
RI 1 1 20
SC 9 $172,000 5 426
SD 3 $44,000 1 98
TN 7 $110,000 1 2 43
TX 51 $1,314,000 8 2 3 395
UT 10 $388,000 3 75
VA 12 $110,000 2 2 2 71
WA 44 $732,700 7 4 8 365
WI 13 $89,500 1 2 4 102
WV 1 $20,000 4
WY 3 $58,000 26
Totals 556 $3,038,200 103 22 111 7289

So that is the state-by-state breakdown.

I have created a web page that will include all of this plus much more (coming real soon).  If you have a website, or a FB page that is a resource for people who want to do something about this entire “missed diagnosis and DKA” situation……..send me the name as a hyperlink to your site and I will include it.  Send to Tom@DiabetesDad.org and write DKA Resource in the subject line.  I need those by Friday at 1:00 PM EST.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.