Sending Diabetes Back To School

Our own Kit McKinney (who teaches our Diabetes 101 classes) recently had the opportunity to speak to 150 school nurses about caring for children with type 1 diabetes at school.  She was kind enough to answer a few questions and share that experience with us.  Thank you so much for your time, Kit!

This time of year everyone is scrambling to get their kids ready to head back to school.  For the parents of children with type 1 diabetes, this takes on a whole new meaning and goes far beyond pencils, backpacks, and earlier bedtimes.  I know you recently had the opportunity to speak directly to 150 local school nurses about policies and procedures regarding caring for children with Type 1 diabetes. What was the most surprising thing you learned while preparing your demonstration?

I was asked to speak to 150 school nurses from Region 7 regarding “Helping the Student with Diabetes Succeed: A Guide for School Personnel.” This school guide is from the U.S. Department of Health & Human Services and is a joint program of the National Institutes of Health and the Centers for Disease Control and Prevention. The purpose of the school guide is to educate school personnel about effective diabetes management and to share a set of practices that enable schools to ensure a safe learning environment for students with diabetes. According to the school guide, three levels of training are needed:

1. ALL school personnel should receive training that provides a basic understanding of diabetes, how to recognize and respond to the signs and symptoms of hypoglycemia and hyperglycemia, and who to contact immediately in case of an emergency.
2. Classroom teachers and all school personnel who have responsibility for students with diabetes throughout the school day should received additional training to carry out their individual roles and responsibilities and to know what to do in case of a diabetes emergency.
3. One or more school staff members should receive in-depth training about diabetes and routine and emergency care for EACH student with diabetes from a diabetes-trained health care professional such as the school nurse or a certified diabetes educator.
What I found most interesting (and surprising) in this guide, was the recommendation that either the school nurse or trained diabetes personnel should be available on all field trips and at ALL school-sponsored activities/functions (both before and after normal school hours) when a student with diabetes is present/participating. Although I agree with the recommendation wholeheartedly, I am not sure that I have ever seen a school accommodate a student with diabetes to this extent. In addition, the guide states that students with diabetes, if able to self-manage, should be allowed to check blood glucose, administer insulin, and treat hypoglycemia IN THE CLASSROOM. They should not have to leave to do so. And in NO instance should a student with diabetes be sent to the nurse’s office accompanied by another student or classmate.
A copy of the school guide can be found here (click over at the upper right to download a PDF copy – warning: it’s about 150 pages long!): 

Here’s a link to the ADA’s “Know Your Rights” page – specific for kiddos headed back to school: 

http://www.diabetes.org/living-with-diabetes/know-your-rights/?utm_source=email&utm_medium=enewsletter&utm_content=Learn081111-top-square&utm_campaign=ADV

What was the most common question or misconception you encountered among the school personnel?
Well, I’ll just tell it like it is. There’s lots of work to be done from both sides, and I often find myself in the middle. When I asked the school nurses what their biggest challenge was in having students with diabetes, their unified and unanimous response was, “The Parents!” I find that most school nurses have little understand of type 1 diabetes and the unforgiving, relentless and detailed management that is required to keep the child with diabetes safe and healthy. Many nurses do not fully understand the difference between type 1 and type 2 diabetes, and most continue to believe that there are foods that are “off-limits”, that children with diabetes cannot eat sweets or starches or “foods that are white”, etc.
I think it’s very important for school nurses to understand that blood glucose is notsimply managed by dosing insulin to carbs. If only it were that easy! Right?! It’s important that they understand that the effectiveness of boluses can be hit-or-miss depending on the trend of the blood sugar at the time of the bolus (this is what we use continuous glucose monitoring for), and that stress, illness, hormones and physical activity play a significant role in blood glucose levels. Too often, I believe, if a child’s glucose reading is “high” or “low” it is just assumed by the nurse, teacher or trained diabetes personnel that the child didn’t eat what they said that they did – or ate something that they “shouldn’t have” or didn’t report. As you know, this is an uneducated assumption that can very easily emotionally affect the child with diabetes. Especially those that are just learning about their disease and disease process to begin with. It is unacceptable and intolerable to have children be misinformed about their own disease and/or made to feel that their glucose levels are their “fault.”
I’ve heard many moms express frustration over trying to create 504 plans.  In your opinion, are 504 plans necessary?  If so, where can they go for help with writing one?
I think that it’s in the student with diabetes’ best interest to have a 504 plan. Section 504 prohibits recipients of federal financial assistance from discriminating against people on the basis of disability. Title II of the ADA prohibits discrimination on the basis of disability by public entities, regardless of whether the entities receive federal assistance. Public school districts that receive federal assistance are covered by both Title II and Section 504. Under Section 504, students with disabilities must be given an equal opportunity to participate in academic, non-academic and extracurricular activities. Administering insulin or glucagon, providing assistance in checking glucose, and allowing the student to eat snacks, etc., are a few examples of services that schools may have to provide for a particular student with diabetes.
Here’s a GREAT review of 504 plans, specific to students with diabetes, from one of my favorite bloggers (other than Sarah) D-MOM:
The most common frustration I hear is scheduling a time to meet with the school personnel regarding the care plan.  What are a parents rights regarding this? Should they push for face to face time and who should they expect to attend the meeting? 
Parent’s have a right to discuss their child’s 504 plan with school administrators and personnel. This applies not only to the 504 plan, but to the Diabetes Management Plan, Individualized Health Care Plan and Emergency Care Plan (all of these are outlined in the School Guide mentioned above).
The following was taken from the website describing the policy and rights regarding 504 plans:
104.36 Procedural safeguards.
A recipient that operates a public elementary or secondary education program or activity shall establish and implement, with respect to actions regarding the identification, evaluation, or educational placement of persons who, because of handicap, need or are believed to need special instruction or related services, a system of procedural safeguards that includes notice, an opportunity for the parents or guardian of the person to examine relevant records, an impartial hearing with opportunity for participation by the person’s parents or guardian and representation by counsel, and a review procedure. Compliance with the procedural safeguards of section 615 of the Education of the Handicapped Act is one means of meeting this requirement.
Here’s that website:
Finally, do you have any tips for a mom trying to wade through all this planning for back to school with diabetes?
I wish that I had the wisdom. You guys have so much on your plate – just remember to take time to take care of yourselves, as starting back to school is a particularly stressful time. Pick your battles. Stay organized. Document EVERYTHING. And patience, patience, patience – with lots of unwavering diligence! Rely on other local parents of children with diabetes for their experiences and successes and, when possible, stand together to stress the importance AND LEGALITY of providing adequate care of your children. I can’t stress the importance of having a support system that understands what you’re going through. This is where Tyler Type One serves a priceless role – get and stay plugged-in with the local type 1 community!
What about you, moms and dads – do you have any tips on successfully sending children with diabetes back to school? Pointers for 504 plans?
Please share them with us.
Because, Every ONE Needs Support!
Kit McKinney is the founder of Greater East Texas (GET) Diabetes Education, which serves patients with type 1, type 2, and gestational diabetes and bills insurance.  GET Diabetes Education’s education program is accredited by the American Association of Diabetes Educators.  Kit grew up in East Texas, so she’s familiar with the community and with the needs of her neighbors.  She has over 15 years of experience as a Registered Dietitian and a Diabetes Educator, so she knows what she’s talking about.  Kit graduated from Longview High School, earned her B.S. in Sociology from Texas A&M University and her B.S. in Dietetics from the University of Texas–Pan American.  She went on to complete a fellowship in neonatal and pediatric nutrition at Indiana University School of Medicine.  Kit currently serves as the clinical education expert for “Ask The Educator” at Tyler Type 1 Diabetes Foundation.

Tomorrow is a Big Day

For families living with type 1 diabetes there are so many decisions to make.  Some we are called to make in the moment and on the fly, and some require much more contemplation.

Deciding whether or not to receive your insulin through an insulin pump rather than multiple daily injections is one of the biggies.  But, go or no-go on the pump is only the beginning.  Then there’s deciding which pump, among several great options, that you believe will work best for you or your child.  There’s no easy answer for this.  A quick internet search on the subject will yield so many ideas and discussion about which pump (and why) that it becomes very clear that this is a personal decision.

It’s no wonder it can cause so much anxiety. You’re only deciding which medical device you’d like to be connected to  24/7 for the next few years.  No pressure, right?

A few weeks back I told you about one of our Tyler Type One families that were approaching their 1st Diaversary.  Well, tomorrow Justin and his family will reach another milestone on their diabetes journey.  Justin is going to his first pump training class!  I recently caught up with Justin and his mom, Amy, and got their thoughts on the big day.

Justin, congrats on making it to the World Series with your baseball team.  We are all so proud of you!  I heard that at one of your tournaments you saw another player and noticed he was wearing a pump. Did this help you decide to pump?  Did it help to know that you can play baseball and not have a pump hold you back?

Seeing the other kid play baseball and have a pump on was very exciting! We even talked to his parents. Now, I know that with a pump I can still play baseball.  I thought having a pump would not let me play. I love baseball so it will make it that much better. Seeing him with the pump did not help me make my decision. I knew I wanted the pump.  I want the pump because now I will not have to get so many shots a day. At school and when friends come over I can eat my meals with my friends. I will not have to wait for a shot anymore!

I think having a pump at school will just be easier. I picked the Omnipod because it doesn’t have any tubes. I can hide it with mu shirt sleeve. No tubes for the other kids to see and pull on. I can wear it on my arm, stomach, back or leg. But mostly I liked the PDM becasue it looks like a cell phone!

Tomorrow’s a big day with your pump training.  Are you nervous?  Excited?

I can not wait to see how it all works. One thing I don’t like about the pod is the beep beep sound it makes when you put on a new one.  The sound scares me a little.  I am so excited about tomorrow, I don’t want to go to sleep. I am nervous because this is new. Sometimes new things scare me.

I can understand, new things can scare anybody.  But, I know you’re brave and it’s going to be great!  

 

Amy, I know and love your family, but for those that haven’t gotten to meet you yet please tell us how old Justin is and when he was diagnosed.

Justin is 8 years old and was diagnosed July 29, 2010 at the age of 7.

Diabetes can be hard on a marriage for many reasons. There are so many stressors and important decisions to make.  My husband Chuck and I disagreed quite a bit about whether or not to put our daughter on the pump, but once we decided to move forward there was no question for us which pump we would go with.  Was it difficult for you and your husband to make this decision?

Mike and I did not disagree too much on the subject until we went to the “Pump It Up” class.  Justin was scared so that’s when we started to disagree.  I told Mike and Justin that I made the decision to get the pump and it was final.  I didn’t think an 8 year old should be making such a big decision. Justin would adjust like he did when he was diagnosed. (I think it’s natural to be afraid at first, but knew it was the best decision.) After that everyone was on board.

Justin mentioned you chose the Omnipod.  Why?

We picked the Omnipod due to its size and no tube. Having the tube felt like we were restricting him. Meaning he always needed to wear clothing with pockets to put the pump in. We did not want to do that. We feel the Omnipod gives him more freedom to rotate all the sites.

Tomorrow’s the big pump start day.  What are your apprehensions about Justin going on an insulin pump?  Are you excited?

I am very nervous. I am not sure what to think. I am afraid I will forget everything and fail! I am afraid I will give him too much insulin or not enough.  I am afraid I am going to mess up. However, saying all this I have to put on a show for Justin.  Show him I am not afraid. I am afraid if he senses this it will upset him and he will change his mind.   So, as his mom I have to put all my fears aside, focus on him and hope and pray I get it right. I am his mom and this is what I have to do. I have to take charge just as I did when he was diagnosed. I can not let my fears show.  I feel if my fears show and he sees me being “weak” it will scare/upset him even more.

I will take charge and do what I have to for him.

He is my son and I will do what ever it takes to see him live a long, happy and healthy life.

I love you Justin and everything I do is for you.

I don’t think anyone can argue with that.

Justin and Amy, thank you for taking the time to share this part of your journey with us.

Good luck tomorrow and know that we are all here rooting for you!

Because, Every ONE Needs Support!