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!

Intangible, Yet Invaluable

One of my favorite things (quite possibly my MOST favorite) about having a support group like our local group, Tyler Type One, is the real life, “warm body” support.  The education and resources it provides are absolutely wonderful, but it’s the relationships that really make this group such a valuable part of our daily lives.

This past Thursday, at our monthly support group meeting, we had a Certified Diabetes Educator come and speak to the group.  Her presentation was great and I heard many people express that they had learned a lot.  This alone was worth the price of admission!  (Which, by the way, is FREE.)   But, it’s what happens after the meeting that I always look forward to.

At one point I was chatting with one of our new families who also have a diabetic toddler.  While we were standing there, Ruby alerted, so I checked Faith.  Their little boy was watching and the mom mentioned how good it is for him to see another child getting their blood sugar checked.  It can be such a source of comfort and confidence for these kids to see other’s that go through what they go through.  It’s the little things like that that sometimes have the biggest impact.

Later that night, I was visiting with another mom and she was sharing how invaluable and uplifting it is for her to come to the meeting and be around other type 1 families that “get it”.  We were sharing how it just fills us up to “go back at it” for another month, and one of the words she used was “intangible“.

Intangible.  That’s perfect.  When I’m telling others about our support group, and describing what a difference it has made in my life, it can sometimes be hard to articulate.

For sure, Tyler Type One is fantastic for the tangible, practical help & supplies – but, you just can’t put a price on the invisible, intangible benefits of meeting with and getting to know others that understand and live with the same day to day struggles.  For many of us, type 1 diabetes is the only thing we have in common – yet, we find ourselves bonding on a very deep personal level.  It means the world to have someone to call or meet for lunch when it all gets to be too much.

You can read all the books, and connecting online is great – but there’s just something about real life support that’s intangible, yet invaluable.

Because, Every ONE Needs Support.

Diaversary

At different times throughout my life I’ve kept a prayer journal.  I love to do this for many reasons.  The writer in me loves to pour my heart out that way, and the doubting Thomas in me needs to go back and see in black and white how God has been faithful to answer my prayers.  I read back through things that I was praying so hard about a year ago and often I don’t even remember those burdens.  I can see that God saw us through that time and it helps me keep perspective in whatever I’m going through currently.

I think this is one of the reasons why Faith’s 1st Diaversary (one year anniversary of Faith’s Type 1 Diabetes diagnosis) hit me so hard.  It hurts to realize that the things you were praying so hard for a year ago are still what you are battling and praying for today.  This doesn’t mean that I can’t see that God has carried us through the last year – He absolutely has – but, it is still a sobering reminder that this diabetes thing isn’t going away any time soon.

My friend, Amy, asked me the other day for ideas on how to celebrate her son making it through his first year with diabetes, and I had no suggestions for her.  I cried for two solid days when we reached the 1 year mark with Faith, so I am not the person to ask for ideas on how to celebrate life on your diaversaries.  I am not there yet.  I am not at a place where I feel like celebrating diabetes.  I’m not saying that I don’t think we should celebrate living another year in spite of diabetes, just that I personally wasn’t feeling very celebratory on our 1 year anniversary of Faith being diagnosed.  Maybe that had something to do with the fact that it came before her 2nd birthday.

Recently, my family and I went to see one of Amy’s sons, Justin, play in his Little League State Championship tournament.  We met his family at our Tyler Type One support group, and have grown to love this family over the last few months.  Justin has a special affinity for Faith, and she feels the same way.  You should hear these two talk on the phone!  Too cute.

Justin even had a shirt with his number made for Faith to wear to his game.🙂

Justin plays 1st base and he’s awesome!  You surely couldn’t spot diabetes anywhere on the field when he was playing!   He definitely doesn’t let it hold him back!

Justin’s team went on to place 3rd in State, and they go on to play in the Dixie Youth Nationals tournament next week!

Guess what else happens next week?

Justin’s 1 year Diaversary!

Is there a cooler way to celebrate LIVING in spite of diabetes than playing in the World Series??

We are SO proud of you, Justin!

Amy, thank you for equipping Justin to LIVE!  You are both such an inspiration to all of us!

What about you?  Do you acknowledge your Diaversary?  Do you celebrate each year?  If so, share your ideas with us!

Because, Every ONE Needs Support!

Mishaps Happen

How’s that for a title?

I heard recently from another mom who was so disappointed in herself for running out of diabetic supplies for her child.  She was able to run to the store at the last minute, and pick up what she needed – averting the crisis – but of course she still felt bad about it.  I can so identify with her guilt over such things, but it wasn’t long before several of us jumped in there with our horror stories and reassured her that we’ve all been there.

I think my all time worst goof up was the time my oldest son was in a competition in Dallas.  We were staying in one hotel, and the competition was in another.  We get checked in to our hotel, freshen up, and then drive (through Dallas traffic) to the competition.  As valet is getting in my vehicle to pull away, I realize that Ruby is alerting and I can’t find Faith’s bag.  I ran to the valet, searched through the car, and quickly realized that I have ZERO diabetes supplies with me.  (We weren’t in my personal car or at least I’d have had backups)  I have no meter, no sugar, no glucagon – and a child that can’t tell me if she’s feeling low.  I leave my son with his team, load Faith and Ruby back up in the car and drive back through Dallas traffic, crying like a baby and terrified that I was going to get caught in gridlock.  By the time I got to her bag and checked her blood sugar, she was in the low 50’s.  I gave her a juice and headed back to the competition, getting there just in time to totally miss JC’s competition.  I sat outside the room feeding Faith’s low and feeling like the worst mom EVER.

If that’s not enough to make you feel better about the job you’re doing, I could go on and tell you about the time that we totally lost Faith’s insulin…back when she was on specially diluted insulin and MDI.  We ended up finding it in the front yard – AFTER Chuck stepped on it.

Or the time I changed a bad site at 2am, but forgot to fill the canulla.  I didn’t realize it until hours later – causing a high bg, small ketone, but easily fixable issue to turn into a HIGHER bg, LARGE ketone, miserable baby, sleepless night issue.

I really could go on, but a girl can only embarrass herself so much in one post, right?

I’m throwing myself under the bus here in hopes that you’ll cut yourself some slack.  Allow others to see that you’re not perfect.  Maybe they’re beating themselves up and it would do them some good to see that we ALL make mistakes.

There’s just so much to remember when you’re managing diabetes, we’re bound to mess up occasionally.

Right??

Tell me y’all have done this too.

Because every ONE needs support.

Eli

“Stop! No mommy! Please don’t hurt Faif! Please stop!  WHY are you hurting her??”

Ugh…how my little Eli’s words stung.

I wanted so badly for him to understand that I wasn’t hurting his baby sister – that I was only doing what was best for her.

I wanted so badly to really understand that myself.

Type 1 Diabetes is a disease that affects the whole family.  The younger the diagnosis is made, the truer this is, I think, because the family assumes all the care of the diabetic.

When Faith was diagnosed at 9 months old, Eli was barely 2 years old.  I remember, he was fine with all the needles and poking while we were in the hospital.  But, when all of that followed us home, he had a really hard time with it.  It was harder on him at first than it was on Faith.

Every time I pulled out any of Faith’s new diabetes supplies, Eli would melt down completely.  He is normally such an easy going, laid back soul, but he just couldn’t handle this new scary stuff that I was doing to his sister – and have you ever tried to explain to a hysterical 2 year old about the immune-attacked cells in the islets of Langerhans?

No?  Me neither.

But, I couldn’t get him to understand that this was our new normal, and that I wasn’t hurting his sweet baby sister.  I was at a loss for what to do.

This is one of the first ways that my Type 1 mom friends stepped up to help out.  It was so great to have someone to call that knew what I was going through.

Some of them offered ideas for me to try.

Others only listened and offered to pray.

But, they all offered hope.  They had been where I was, and were now on the other side of the storm.  They could tell me it would get better and I could believe them, because they’d been there…and you know what?  It DID get better.  Eli is 3 now and – not only has he gotten used to all this diabetes craziness – he is now an active part of Faith’s support team. Watch this video of Faith recently checking her blood sugar (for the first time, at 29 months!!) to see how supportive he has become (that’s him sitting next to Faith, cheering her on):

Maybe you’re new to this like I was, or maybe you’re a veteran, but are entering a new phase with this whole thing.  Whatever it is and wherever you are, just please know that it will get better, and there are others out there for you to lean on for support.

We’re all in this together and we all need each other.

Find someone that has been where you currently are – or if you see someone entering a storm that you’ve already battled – reach out to them.  And if you can’t find anyone, let me know, and I’ll try to put you in contact with someone.

Because, every ONE needs support!

A Hand to Hold

When my youngest daughter, Faith, was diagnosed with Type One Diabetes at the age of 9 months, I could never have anticipated how much our local support group would come to mean to me.  From their first visit the day after diagnosis, to the ongoing friendships I’ve gained at the support group meetings, Tyler Type One has been invaluable for our family.  Rarely a day goes by that I’m not connecting on Facebook with someone I’ve met there.  I often say that I am not thankful for diabetes, but I am SO thankful for the wonderful people that it’s brought into our lives.

Faith is too young to really see the benefit yet, but her siblings have formed some special bonds with the other children they’ve met through Tyler Type One.  It’s just about the only place we can go that no one asks them what’s wrong with their sister, or why we have a dog.  It’s also good to see older diabetic children so that they can see that the future is bright for Faith.

Recently, Faith and I traveled out of town to speak at a fundraiser for a little girl with Type 1 Diabetes.  They were raising funds for sweet Lily to get a diabetic alert dog like our Ruby.  Faith and Lily had never met before, but just a few minutes after we arrived Lily noticed Faith’s insulin pump – and that it was pink, just like hers!  Lily asked her mom why Faith had a pump, and when Angie told her that it was because Faith had diabetes like her – Lily couldn’t believe it!  In the 3+ years that she’d been diabetic, she’d never met another little girl like her!  She thought she was the only little girl with diabetes.

How sad is that?

Later that night Faith’s infusion set needed to be changed.  Lily walked in the room, climbed up on the bed, and held Faith’s hand while I inserted a new set.  It was the most precious (and heartbreaking) moment, because who knows better what Faith is going through than Lily?

Faith thinks Lily is a good friend to have when she gets her pump changed.

Lily was diagnosed at 18 months so she, like Faith, doesn’t remember a time before diabetes.  For these two sweet girls, a life of constant poking, checking, and monitoring is all they know.  How sweet to have a friend that “gets it”!  What a blessing that these girls have each other for support!

Sweet friendship.

Type 1 Diabetes is isolating enough when you know there are others out there fighting the same fight, but to think that you’re all alone in this is too much for anyone to bear.  I am so thankful that because of Tyler Type One, Faith will never know a day of thinking she’s alone in this fight.  She is growing up with a strong support system all around her!

My prayer is that Type One Diabetes Foundation support groups will pop up everywhere, so that no one has to think that they are all alone in this fight!

Because, every ONE needs support!

That one meeting between Faith and Lily left such an impression that sweet Lily calls Faith her "best friend ever". They were both diagnosed with Type One Diabetes at a very young age, and now both have Diabetic Alert Dogs (who actually happen to be littermates). What a sweet, unique friendship they have.🙂