This post was originally written by me as a guest blog piece for the D-Mom Blog. I'm reposting it today in celebration of Arden begining second grade tomorrow and the great relationship that we have with her school.
The relationship that you forge with your child’s school is perhaps more important than the relationship that you have with their Endocrinologist. Sound crazy? Let me see if I can sway you…
If your doc is a bit gruff or hurries you in and out, that’s not optimal but you can always find a new endo. So while there are ways for you to get around a lousy doctor… the school that your child attends can’t easily change.
Depending on the age of your child at diagnosis you could be looking at thirteen years of schooling to navigate and we want those years to be smooth ones. I’ve taken a very long-term view of my relationship with my daughter Arden’s school officials, nurses and teachers. Even though things started out rough for us, I kept my head, swallowed my pride a time or two and kept my eye on the more important long-term goal, opting to win the war and not hyper focus on the battle.
I knew I was in for a rough road from day one. I stopped in to chat with the principal at the end of the year prior to Arden starting kindergarten. I was mostly taking the temperature of the folks that would be with Arden everyday, very informal, the visit went well except for this one, almost innocuous moment. The principle half laughed at me for showing up so many months before Arden would begin at the school. As I began to explain, I realized that she didn’t have the first idea of how challenging it would be to manage Arden’s type 1. She was basing what she knew on the much older, much heavier, more mature type 1 children that had been through the school previously. This was the first time of many that I could have drawn a line in the sand, made my point that they didn’t “understand” but instead… I gently expressed that Arden’s management would be different then the other T1 kids at the school and told her that I looked forward to speaking with her over the summer about Arden’s 504 plan. I chose to plant a seed, take it slow and see what I could get to grow.
I spent the next few months creating Arden’s 504 plan, it is comprehensive without being bloated, it doesn’t try to be fancy and strives to be fair minded while covering all of Arden’s needs. I knew that my next obstacle would be a big one, at our inaugural meeting the school presented their own 504 plan, it was on one page and consisted of five vague bullet points. When I saw it I asserted myself for the first time saying, “I dare you to keep her alive for a week with that.” Keep in mind that you can’t plant your feet and fight every time something is said that you disagree with. Instead think to yourself, “How do I get this to where I need it to be?”
There are a number of reasons not to get emotional, the two most important ones are: once you do you look like an over-protective nut and they’ll never take you seriously again. Even though the person that you are dealing with is a professional, people have a very difficult time disconnecting themselves from their jobs and often take things that they shouldn’t very personally. Please remember that you’re goal isn’t to be correct, it’s to get what you need for your child. In the pursuit of that goal you mustn’t let the other side walk away feeling like you’ve beat them or gotten something that you didn’t deserve because you were belligerent; they need to feel good about what has transpired. Not leaving negative memories is key as you don’t want them to resurface when they see your child. You can think and hope all you want that teachers, principals and nurses won’t hold a grudge, but I’m telling you that they will. While it may not be to a great degree, any grudge is a waiting opportunity to get even – as that’s (generally) how our brains are wired. You want the sight of your child to evoke caring, empathy, a maternal urge, not the memory of you loosing your shit in the principle’s office.
I’ve gone through it all and I expect much more as the years go by. Arden’s initial 504 negotiation lasted four months. I’ve seen apathy, mocking (that I know occurred at district meetings – thanks to my little bird!), I had to educate our superintendent, negotiate to have school staff and bus drivers trained to recognize and react to type 1 situations, and on and on. There have been so many opportunities for me to become angry, to take a shot when someone said or did something ill-informed or even insulting, but I never did. I smiled when the cafeteria person told me that, “I have a hard enough time dealing with the normal kids” when I asked for carb counts. I’ve put up with the looks and the attitudes when the staff has to do something that they don’t want to.
An aide once told Arden not to worry, “her OmniPod could be photoshopped out” of her school portrait. That comment made me insane but instead of entering into a situation that would have ultimately only served to dismantle the relationship that I’ve built, I called the school and explained why it wasn’t optimal to give Arden the impression that she should be ashamed of the device that keeps her alive. I further explained, “this isn’t the message that we should be sending.” The staff was properly sorry for what had transpired and in all honesty, the person that said it wasn’t being nasty, she just wasn’t thinking. When they started to apologize I wouldn’t let them, instead I apologized for the uncomfortable moment, turning the shame onto me so that they wouldn’t take it on them. What I wanted to say was, “What the f*&% is wrong with you morons?” Never-the-less I swallowed hard to maintain the easy relationship that I have built.
In the end, this isn’t about being right, or smarter or who has more knowledge of type 1. It’s about the players in the situation feeling empowered to help my daughter live her life as normally and as healthy as possible. It’s about being able to ask a favor without it feeling like a favor. It’s about getting what I need for Arden as easily and as completely as I can.
Today there is likely nothing that I couldn’t ask for, point out or flat out demand that wouldn’t be handled with a smile… ALL because we have a personal relationship with each person that I deal with, a relationship that was built one seed at a time.
I think that my time as a married man has in part helped me with this… a man, a good man, knows he’s never right… am I correct ladies? So even when my better judgement tells me things aren’t quite right, I smile at things that don’t make a lick of sense to me in the name of keeping the peace. I’m not interested in winning any individual battles… I want to win the war.
In closing, I’ve been a full-time parent for more then eleven years (the last five of them with type 1 diabetes) and it takes a certain personality to be a full time parent. Though our numbers are growing, I am still in the minority being a man in this position. I think that my situation is unique in that I am a mother in my heart and when the situation calls for it, I am a mother outwardly. I’m not embarrassed to carry a pink purse when Arden gets tired of holding it and as a matter of fact, none of what I do has ever made me feel embarrassed… I’m a mom and I’m very proud of the things that I spend my days doing.
However, in the other moments… I’m a guy: I like baseball, boobies, I’m tough on my kids when they need me to be, and I can be territorial and aggressive when the situation calls for it. When you blend the two sides together you get a soft-hearted, sentimental, mothering person that thinks like a man in pressured moments. That blend comes in handy, especially in situations like the ones that arise at school for a child with type 1.
So, if I may be so bold, I have a message for the lionesses of the DOC. I know from watching my amazing wife when her instincts kick in just how much a mother’s love motivates you wonderful ladies – I certainly wouldn’t get in between one of you and your child’s wellbeing – but sometimes… you have to suppress your natural instincts in favor of the long-term goal.