Letters to school…

As a parent of a T1D-I look to other parents wearing the same shoes as me for answers and guidance about various questions that come up while raising a diabetic child. This week, as I was searching for some feedback on insulin dosing, I came across several posts regarding children with diabetes and school. These posts always leave a pit in my stomach because we have been there-struggling to get a school to understand how precarious diabetes can be, how life altering it is to a diagnosed child, asking for help from the place our children spend most of their time.family 2011 030

I was especially moved by a post about a child who just wanted to call his school nurse-a simple request since there is a phone in the classroom for just this purpose and the child has done this before. The child wasn’t allowed to make that call. Another post-about a child reprimanded for leaving their blood glucose kit out on the desk–because the child wanted to get out to recess with all the other kids, and in a hurry to be like everyone else–left the kit out. If it had been a pencil, a book, a hat and gloves–would that child have been ‘in trouble?’ Both of these incidents left a child, who already deals with so much everyday–in tears. Hating school, hating diabetes, hating their life with diabetes. There has to be a better way.

So in that vein, Frankie and I post these letters. If you are a teacher, an administrator, school staff member–please know our family holds you in high regard. We know your jobs are the most difficult on the planet, and we know  parents ask a lot of you. We just ask that you take 10 seconds before you react to a child with diabetes, or any child with special needs–to think about how difficult their life on this planet is–and see that they are trying–to be the same as everyone else while dealing with diseases, learning disabilities, and the like. Everyday-a kid with diabetes is thinking, injecting, testing blood with a needle to their finger–just to stay alive. They too, have the most difficult job on the planet–trying to stay alive while trying to just be a kid.

As a parent of a T1D I try to teach my son-respect adults, do what your teacher says-but I have to balance that with-BUT keep yourself safe-do whatever it takes to stay in the upright position. So please-take 10 seconds school staff–and think about the fact that respect should go both ways. A kid with diabetes KNOWS what they need-they will tell you if you listen.

Dear School,

I have type 1 diabetes. I am 9, (4, 6, 8, 17, ect)  years old. Having diabetes stinks, but I try really hard to not be grumpy, tired, confused. Sometimes I can’t help it-because that’s what happens when my blood glucose goes wacky. I will have to mess up your class sometimes-because I will feel weird and need to eat or have a juice box or need to call the nurse. I don’t want to mess up your class-but I don’t want to pass out either. Diabetes stinks. I may have to miss school because of diabetes. Some kids think this is great–I hate it because it means I am sick-sometimes in the hospital. It is hard to make up all the stuff I missed–but I promise I will try. If I act weird, forget stuff, don’t pay attention–it might be my diabetes–so ask me to check my number before you tell me to pay attention–you might be saving my life.

from,

Frankie

Dear School,

My son has type 1 diabetes. His health care team has provided you with a medical plan to keep him safe in school. I have worked with the district to make a 504 plan-which outlines some adjustments to policies the school will have to make so my son can participate like all the other children. We have also made an action plan-which gives you guidelines on what to do if there is a diabetic emergency. Please take the time to read and learn all of these plans. I am available at any time to answer any questions or concerns.

I want you to know that sometimes diabetes causes my son to be up throughout the night trying to correct a high or low glucose level. The fluctuations of diabetes cause him to be extremely tired, lethargic, lose train of thought, blurry vision, and he has passed out at various times. My son is usually a happy-go-lucky child, likes to participate, and is very social. If he appears anything but these traits-please have him check his glucose level because that indicates a diabetic problem.

I don’t expect you to understand all the variables of diabetes. I just ask that you please read, know, and follow the plans set up for my son. Please remember that he has diabetes-don’t feed him without insulin and make sure he gets the food insulin was administered for.

I don’t want my son to get a ‘free pass’ because of his diabetes. I expect him to work hard, pay attention, do his best–I hold him to the same standards as I do my non-diabetic child–but please understand–that sometimes diabetes will prevent him from being able to fully participate.

We do our best with the help of his medical team to ‘regulate’ his diabetes but growth spurts, seasonal changes, excitement, stress, and much more–will cause his glucose levels to raise and lower. Diabetes is like a roller coaster.

One last thing, please don’t talk to me about ‘all the other diabetics’ who handled diabetes with ease that have passed through your doors. Please don’t tell me he would be better off on a pump, better off if ‘I let go a little’, better off if I fed him a certain diet. I get that you are trying to be helpful–but know that EVERY diabetic is different–in how they inject or infuse insulin, how their bodies react, how they handle diabetes emotionally. We have a GREAT health care team-who knows what is best for OUR child.

Thank you for all you do everyday for all the students.

From,

Mom of a diabetic

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Oh what a ‘KNIGHT!’

The arena was packed! People from all over had come out to watch the AWESOME Syracuse Silver Knights Professional Soccer team play to win. My kids came–to cheer on the team and spread some diabetes awareness.rachel frank knights

It all started with a Silver Knights visit to my kids school. The Knights came to give a soccer demonstration to the school children and put an idea in my children’s heads. Off the bus they came, full of plans to ask the team to have a Diabetes Awareness ‘Knight.’ Next came the email to the Knights asking if they would allow us to host a ‘What’s your Type?’ Diabetes Awareness ‘Knight.’ After getting a YES my kids were off and running!knights table

They made a video for the arena Jumbo-tron with the help of a local company called Blindleaf productions. They planned a field show–full of posters, What’s your Type? t-shirts, and kids–running the field –spreading facts about all the different forms of diabetes. They lined up singers for ‘God Bless America’ and arranged a diabetes awareness table with help from the American Diabetes Association. They went on the news–in the hopes of getting people living with diabetes to come to the game. They sold tickets–got excited!NDE_8155

Friday February 22 at 7pm–it all came together. My kids were not the least bit nervous. The excitement of the night caused Frankie’s blood glucose levels to go up–into the 300’s. “Just give me some insulin, I’ll be okay” said Frankie–and off he went, with his sister Rachel, and their friends to get their message out.

The Silver Knights went above and beyond for my children! They gave them extra time for their field show, showed the video on the Jumbo-tron throughout the game, and announced facts about diabetes throughout the game. Needless to say, we were big fans of the Knights long before this event—we are now AVID supporters of this team–who not only provide our city with great family friendly, action packed games–but also gave my kids the gift of making a differerence in the lives of people who live with the same disease they do.What a 'KNIGHT!"NDE_8145

Words of thanks are not enough-but THANK YOU–Syracuse Silver Knights, all the friends, family, and strangers that came out to this game and cheered on these kids who have embraced the task of informing their community about this disease called diabetes that they live with everyday.what a KNIGHT 2

Oh WHAT A ‘KNIGHT!’NDE_8146

Why we talk about diabetes so much…

Anyone sick of listening to me & mine talk about diabetes, the signs and symptoms, the daily grind of it, and a cure? Well, you know what? Me too–but we can’t stop-because diabetes is in our house–and isn’t going anywhere.

Diabetes is my third child, the one I didn’t plan on and wasn’t prepared for. It keeps me awake at night, makes a mess of my house with all it’s supplies, says ‘Mom, Mom, Mom–look at me!’ 24 hours a day.

Diabetes shoves itself in our faces, so we shove it in yours–with facebook posts, blogs, and diabetes awareness events. We do this–because diabetes was a punch in the face to our family because we didn’t know a darn thing about it before August 23, 2010 at 1:47pm.

We don’t want another family to watch their child lose weight, become lethargic, use the bathroom all the time, drink  water like it is getting outlawed, and NOT KNOW what the heck is going wrong with their child.

It is so easy (speaking from experience here) to see the signs and symptoms of diabetes as a virus that will pass, growing pains, normal childhood angst. Had we known the symptoms of diabetes before August 23, 2010–we would have had Frankie at a doctor’s office much earlier. We DID NOT KNOWso we want to make sure other parents DO KNOW!

Early detection of diabetes symptoms and early treatment can decrease the chance of developing the complications of diabetes-and SAVE A LIFE!

You may be thinking:
‘We don’t have a family history of diabetes-so we’re good’ WRONG! Neither did we!

‘I breastfed-so my children won’t get it’ WRONG! I breastfed too!

‘ My kids eat a well balanced diet, not too many sweets, and exercise–that prevents diabetes’  WRONG! So did (and does) my son!

Diabetes may strike even without a family history, even if you exercise and eat right, and age doesn’t matter. Type 1, which is an autoimmune disease, used to be considered a ‘kids’ disease–now adults are getting diagnosed! Type 2, was thought of as an  ‘adults only’ form of diabetes–caused ONLY by a bad diet and lack of exercise–is now occurring in children and adults–and can be caused by genetics–not necessarily a bad diet. Skinny people can get Type 2 diabetes too!

This CAN affect YOUR family– KNOW THESE SYMPTOMS:

Type 1 Diabetes

  • Frequent urination
  • Unusual thirst
  • Extreme hunger
  • Unusual weight loss
  • Extreme fatigue and Irritability

Type 2 Diabetes

  • Any of the type 1 symptoms
  • Frequent infections
  • Blurred vision
  • Cuts/bruises that are slow to heal
  • Tingling/numbness in the hands/feet
  • Recurring skin, gum, or bladder infections

If you or your family members have one or more of these diabetes symptoms, see a doctor right away.

We are going to keep talking diabetes…we hope you listen.

Let’s just do this…

Frankie has had Type 1 Diabetes for about 3 years. In that time he has had 7,644 injections of insulin, stuck his finger with a needle to test a drop of his blood with a glucose meter 10,920 times, learned to count carbs, read labels, consider activity level vs insulin dose, managed his disease through 8 bouts of illness, and completed 2 1/2 years of school, 2 levels of cub scouts, and 3 seasons of basketball and baseball. In 3 years he has shown his parents what BRAVERY looks like. Frankie woke up the day after diagnosis and said “Let’s just do this” and he hasn’t looked back since.
As his parents-we are facing one of the biggest challenges yet-WE have to be brave. Frankie’s cub scout troop is going on an adventure-which includes a talk with a naturalist and a hike in the woods, followed by a pizza party. All sounds like fun, and a great experience for Frankie. The challenge lies in the fact that neither Mom or Dad can go because we work. Frankie’s best friend’s Mom has volunteered to ‘learn diabetes’ so Frankie can go. This Mom already knows a lot about diabetes-because our kids spend so much time together. Frankie has stayed over night at her house-which is 2 seconds away from ours. The decision to say okay to the sleepover now seems like a drop in a bucket compared to this. I trust this Mom like I trust no other-she treats my kids like they are her own–she is smart and good in a crisis–but I am still scared. I am scared of all the variables that are diabetes-especially on a hike, the small things that you can’t teach or write down–you only know them when you live it. I am scared of what I know about diabetes, scared of letting him go–because this place is NOT seconds away. I’m just scared, with a lot of sad mixed in–because childhood should not be like this.
The easy way out-we don’t let him go, but we ask ourselves-what would we do if Frankie didn’t have diabetes? The answer of course, is he would go. There wouldn’t be worry or fear–just a kid on an adventure with his friends. We want him to have that, he deserves to have that!
So God watch over Frankie…”Let’s just do this!”

Feeling “ISH”

Feeling "ISH"

I google type 1 diabetes, read books on type 1 diabetes, take classes about type 1 diabetes-but I don’t know  type 1 diabetes. Reality is I don’t have type 1 diabetes, my son does. I will never know what it is like to feel the “ISH” as my son calls it. Slug-ish, drowsy-ish, grumpy-ish, blurry-ish, dizzy-ish, and many more “ish” es.  I will never know the pressure of being 9 ( or 19, 39, 69…) and having to live with a disease that NEVER gives you a break, never let’s you forget for 1 second that it lives inside you and if you don’t treat it right, it can kill you–all the while–getting your homework done, work done, chores done…living your life- like ‘I got this!’

I can say I see what it is like. I see my happy go lucky boy turn into a grizzly bear right before my very eyes, and just before I yell “Don’t talk to your mother like that!” I see T1D.  I see my social butterfly, sitting by himself, face pale, eyes drawn, looking like our dog just died-I see T1D. I see balancing insulin with the food he eats, activity level, the weather, work load, sports-I see T1D. I see a life full of doctor visits, injections, blood tests, hospital stays-I see T1D.

I can’t take this away from him, but I can try to teach him persistence, patience, perseverance. I can be his shoulder to cry on and his kick in the pants. I will never know the “ish” but I can love him through it.

I see determination, tenacity, resilience-I see Frankie.