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.
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.
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.
Mother/Father of a Child with Type 1 Diabetes.