An Open Letter to School Administrators (From Parents of Kids With Diabetes)

June 1, 2011By 19 Comments

Given that the school year is ending and tens of thousands of parents around the world are struggling with the dreaded “plan for next year” challenges, I thought I’d pen a letter to the average school administrator. We always had great luck with my daughter in school, but too many have take on a fight that is just wrong. See if this helps. And if it does, share it — let’s get the word out to schools everywhere that we are reasonable, and they need to support us.

School should be a happy, welcoming place for all.

Dear School Administrator:

First of all, thank you for all of your hard work this past school year. I know there is a lot of pressure in your job and I know you didn’t choose the highest-paying vocation. So I thank you for answering the call for helping educate children.

I’d like to talk to you now about my child. You know: the child with Type 1 diabetes. Sometimes I think you see me as that parent who is always bothering you; always fishing for something. But I feel I need to explain. Because, you see, my child’s condition requires near constant attention. And for nearly half his/her day, that comes under your watch. For that reason, it is crucial that we work together to make the best learning environment possible for my child.

I know you probably haven’t had any direct connection to Type 1 diabetes before. Chances are, you have a relative or friend who has Type 2 diabetes. They are quite different (although no one would ever choose to have either!). People with Type 2 diabetes have a metabolic disorder. Their bodies still make insulin but have trouble using it. That’s why things like diet and exercise can help them “Control” it better.

Type 1 diabetes is an autoimmune disorder that as of now, no one is quite sure why it hits. This autoimmunity attacked my child’s pancreatic beta cells (the ones that produce insulin) and destroyed them. Until a cure is found, nothing — no amount of exercise or diet or restrictions – will make those cells produce insulin again. That’s why we have to administer it via shots or an insulin pump.

Let me also make this clear: those shots or that pump, along with my child’s blood glucose meter, is very much a life support system. Take it away, and quite frankly, my child will be dead in a matter of just a few days. Yes. It’s that serious.

So why, you ask, do I smile most of the time and encourage my child to be “like any other child?” (And why does that make you think it’s not as serious as all this?) Because, quite simply, I want my child to live the fullest, most interesting, most fulfilling and most successful life he/she possibly can. Let’s put it this way: if I showed up with a child in a wheelchair, would you be questioning my need for my child to be in that wheelchair? Would you think, privately, “Maybe she’s babying him/her too much. Maybe they need to see if he/she can just walk a little every once and a while?” I suggest the answer is absolutely not.

And yet, we parents of kids with diabetes in school find ourselves often on the end of a fight. A fight for the support our child needs while in school. A fight for people to be trained to act quickly should my child need something. A fight for a little compassion, gosh darn it.

I really believe it might be because you simply do not understand. Look, when my child was diagnosed, I was flabbergasted. The training we undertook at the hospital was beyond advanced: I felt like I was dropped in one of those “learn French quick emersion classes.” I went in knowing nothing. I cam out speaking diabetes. So I don’t expect you and your staff to get it all in an instant. But I do expect you to care enough to learn, and I mean truly learn.

The medical program my child is on is complicated. It changes sometimes by the day, sometimes during each day. It involves needles and insulin and blood checks and carb counting and mathematical equations – and it involves that many times a day. Again, we have no choice in this, just as the child who cannot walk has no choice but the wheelchair. (And it also complicates things that every single child with diabetes is unique as a snowflake. One plan does not cover all, alas. So individual attention is required).

A lot falls on the minds and hands of the people who care for a child with diabetes. Can you imagine a child in chemo and the doctors just handing the parents all the devices and medication and saying “Good luck with that! Call us in a week or so!” Never. Yet, what we are pulling off is not far from that.

Believe me, I wish my child's lunch bag didn't have to look like this.

That’s why I need your help. I need you to allow me to set up a training in my child’s school that will ensure people truly know how to react and what to say (and not say!) during the average day with diabetes (that includes people in the classroom, the gym, the lunchroom, the hallways and the playground). I need you to believe me when I say my child needs a buddy to walk to the nurse with him/her. Or needs to store extra snacks in the classroom. Or needs the support of a part-time aid. Whatever it is I say he/she needs, please believe me.

Because honestly, I don’t want any of this. I would give my soul for my child to just be like most other kids. I’d trade in all I have for him/her to not have to live this life.

But I cannot do that now. So I need your help. The goal of educating children is to create a healthy, happy, safe and positive learning place. I truly understand that this means a lot of extra thought and a leap of faith here and there for you. But if together we raise the magnificent adult I know my child can become despite diabetes, what a victory that will be for both of us.

So let’s see my child’s experience with diabetes in your school as a call to action: let’s create a plan, environment and support for him/her that stands up as a role model to all. Let’s show the world that administrations and parents, as a team, can overcome even the most challenging obstacles.

I’m ready whenever you are.

Sincerely,

Mother/Father of a Child with Type 1 Diabetes.

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Comments (19)

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  1. 504 Plans And The Insanity of Some People | theperfectd™ | February 7, 2014
  1. Meagan Esler says:

    Well said Moira!!! I love that you put the differences about type 1 and type 2 in the letter, because unfortunately, people don’t seem to be as aware of type 1 and the dangers associated with it. People generally see a diabetic eating sugar and think they are “cheating”. Perhaps this will clear up some confusion for the administrators. My sister is a teacher, a principal that she used to work for had type 1 and a majority of the teachers used to talk about how “bad” he was when he would eat candy or drink regular soda…these people have to know! How can they help a child with type 1 if they don’t?!!? Thanks for a wonderful, informative letter.

  2. Debbie Garelick says:

    Moira, you are such a good writer. It saddens me to know that not every school is as caring as the ones we have experienced. I don’t know how I would have survived the early years without the support of the schools and the community. Thank you so so much for being such an articulate voice for those who need to fight this battle not just to fight the disease but also fight the people who see our children more than we do.

  3. Beth McCrary says:

    Thanks Moira! So many will benefit from this well written letter.

  4. Meghan Lussier says:

    This is such great letter and so well thought out. Thank you for sharing!

  5. sean stanford says:

    Describing the difference between Type I & II is really meaningful.
    Great Letter !

  6. Scott S says:

    Thanks for sharing a well-written letter. Let’s hope some school admins around the country are reading blogs this summer!

  7. Lisa says:

    Thank you so much. I know a few grateful little ones with T1 that thank you as well! This will definitely be posted, read, e-mailed and so on. Thank you for caring!!!

  8. Amazing Moira. I spoke with my daughter’s Principal just a couple of weeks ago, and he hadn’t realized until that conversation that type 1 diabetes was not nutrition related. On June 13 my daughter and I will do a presentation at the school’s staff meeting on type 1 diabetes. Unfortunately, this is exactly a week before my daughter leaves this school for good to go to Junior High, but maybe it will help the two younger children in this school who also have type 1 diabetes. I guess I get to start over with the Junior High next year.

  9. Katie says:

    Good post Moira!

    We were very lucky with our schools (it helped that I was on the board at the K-8 school). But every year I visited all my son’s teachers and spoke to them individually, and spoke to the school secretaries and administration. We never asked for much else; no special accommodations for testing, no IEP, just some basic awareness.

    Even so, I had a few phenomenally STUPID aides say some really hostile things over the years, and an after-school religious ed teacher be so cruel that I pulled my kid from the program. And, yeah, the teacher who said “sometimes your son has no affect”… I explained lows and highs, and he bought it. kind of. But I think he thought my kid was a druggie.

    With the classroom/playground aides, I called the school immediately and was very clear about what I wanted the aide to hear from the admin.

    But generally, we were lucky. Some additional explaining, yes, every year, but nothing like the horror stories one reads.

    And no, there was no school nurse, no special D-Aide. Just well prepared staff and faculty.

  10. Neil Henry says:

    Great job getting a few things off your chest. I’m sure some parents will find some of the talking points useful. I want to gently challenge part of your summary of Type 2. I’m sure you would agree that it is important not to offend or alienate anyone in this population. It is important to be exacting in our statements just as we insist on crisp definitions for our children with Type 1. Your first two statements are perfect. In my opinion, your third point: “That’s why things like diet and exercise can help them “Control” it better.” is imprecise – and possibly hazardous.

    I am not a clinician – but in reading the published research, I have acquired two pieces of understanding that push against that statement. 1.) At diagnosis, a fairly small percentage (<20%) of people can control T2 with diet and exercise (although I am sure this is often/always the prescribed first course of action). 2.) Because of the strong genetic component of T2, a large portion for the growth in T2 shows up in fit young adults (30s/40s) – Metabolic Syndrome or whatever the current name is.

    To repeat, I only put such a fine point on this because I think I can say that we all insist on precise distinction for our Type 1 kids.

    • Moira says:

      Thank you so much — I will be more careful in suggesting there can be some “control” with Type 2. I appreciate it!

  11. Neil Henry says:

    I guess it inevitably brings up the list of topics I cannot talk to an school administrator about:

    - Ambiguous legal & liability mandates: I realize that the state nurses association has publicly stated that non-clinicians may not supervise insulin dosing. Since school nurses cover 2-6 elementary schools in this county the only time I have met one is at a September meeting. I hoping that either you have not read the nurses opinion or you are willing to be pragmatic and let me train this 24 year old 1st grade teacher as a primary and the school secretary as a back-up.

    I am hoping that my proposal on a plan to create a normal classroom experience for my child will take priority over any concerns you might have about personal liability, your teaching license or your career.

  12. Arlene says:

    Enjoy reading your blogs, it is reassuring to know that many parents feel the same way. I live in Canada and 19 is considered legal here. With University and “legality” comes new parental concerns. I know other parents regard me as super cautious or someone who “over parents”. They don’t understand. They don’t understand the fear of my child moving on to adulthood with all it’s experiences. He goes out, he parties with friend’s, but then I set my alarm and wake him to check glucose readings. The first time they go for a “boys” weekend to the cottage. You try to guide their choices of friend’s as much as you can. On top of that I work in an emergency dept setting so see terrible outcomes. The only positive in this is I know I make a difference in newly diagnosed Type 1 lives, because I am able to teach and support from personal as well as professional experience. I, as a parent, have never felt any support from anyone else for all these stresses. Unless you live it, you cannot understand. Thanks for sharing.

  13. karla says:

    la carta es maravillosa , mi hija es diabetica desde los 3 años y si siempre he tenido ese problema el personal de la escuela jamas puso de su parte en ayudar a mi hija , llevare esta carta a su nueva escuela a ver que causa y espero sea una reaccion positiva gracia muchas gracias

  14. Jessica Grim says:

    Moira, I found this post because Christel from thePerfectD linked to it. I know you wrote it a couple years ago, but I just wanted to say that this says it all, perfectly. I wish I would have known about this letter at the beginning of the school year and been brave enough to send it to my daughter’s principal and teacher. I appreciate your words and insight so very much and I thank you for continuing to advocate and address issues that those of us with children who are still so reliant on us to be their voice can relate to and use, even though your daughter is now an adult.

  15. katy says:

    Christel’s post directed me here. I love this letter! It is so helpful, and so many of us will use it!

    Our school principal has a child with T1D herself. Can you imagine the luck?

    I think that one thing to be careful about when using this letter is that some educators might feel insulted by the mention of how little they are paid. I think you bring it up as a nod to the person’s good will/true love of education, but it could hurt the reader’s feelings or make them feel kind of patronized. Like “Good job, even though you have a miniscule penis!” or “Good for you for going out in public, even though you are hideously fat!” Not that that’s what you meant AT ALL, but I just–having been on the receiving end of this kind of inside-out compliment–I’d leave that part out when re-using the letter.

    I went way off topic! It’s a great letter.

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