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Arden's Day Blog

Arden's Day is a type I diabetes care giver blog written by author Scott Benner. Scott has been a stay-at-home dad since 2000, he is the author of the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal'. Arden's Day is an honest and transparent look at life with diabetes - since 2007.

type I diabetes, parent of type I child, diabetes Blog, OmniPod, DexCom, insulin pump, CGM, continuous glucose monitor, Arden, Arden's Day, Scott Benner, JDRF, diabetes, juvenile diabetes, daddy blog, blog, stay at home parent, DOC, twitter, Facebook, @ardensday, 504 plan, Life Is Short, Laundry Is Eternal, Dexcom SHARE, 生命是短暂的,洗衣是永恒的, Shēngmìng shì duǎnzàn de, xǐyī shì yǒnghéng de

Filtering by Category: School Blog

Building a Working Relationship With School

Scott Benner

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 beginning 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?”

This post was later included in the book, 'Kids First, Diabetes Second' by Leighann Calentine of D-Mom blog and eventually led to me being offered my own book deal.

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.


Sick, Virus, Flu, Strep

Scott Benner

Sick, a virus, the flu, strep, runny nose, fever. Odds are that your home has been visited this year by one of these illnesses. However, if you haven't been visited it’s possible that your illness came to our house instead (must not have GPS) because we’ve had more then our fair share.

 

Arden has been sick so many times this year that I’ve lost count. She has missed way too much school and we’ve missed way too much sleep. So today I took the first step to making sure this doesn’t happen anymore. Did I up her multivitamins? No. Are we all wearing paper surgical masks 24/7? No. Did Kelly quit her job so she can sit up all night watching low BGs? No.

 

Today I visited Arden’s Assistant Principle. I got Arden off to school and then I walked into her office in the following condition...  So that you can form a mental image, I look like I died from a zombie bite and came back to “life” three weeks ago. Since then I appear as though I’ve been walking the streets of my town feeding on cats while birds pick at my eye sockets. 

 

No shower, hat over my hair that needed to be cut six weeks ago, unshaved, hell I think I slept (slept... as if) in this shirt. I didn’t put any effort into shining myself up because I don’t have the energy and I wanted her to see what having a diabetic child that has been sick for months does to a person... and so I sat down in all of my glory and explained.

 

I explained that in the course of a “normal” day I don’t usually get to sleep until two in the morning and that’s when everything is going great!  I told her that, I’m so tired now that Kelly has had to stay up nights with Arden because I just can’t stay awake anymore. That the bouts of getting Arden to eat or drink when she is sick and/or sleeping is painful to the soul and difficult on my family.  I told her that, I still have to grocery shop, vacuum, do homework, take my son to baseball, go to eye doctor appointments, I told her that my regular life doesn’t stop just because Arden is sick.

 

I asked her to imagine taking care of a sick child for extended periods of time and then I explained what being sick does to Arden’s BGs, I said, “combine those things, don’t sleep, still worry about all of the other stuff that life brings, then do all of that while you force a six year old to drink juice at 3:40 in the morning”. - She did, she was a great listener and seemed 100% concerned with my plight. Then I explained, “you can help make this all go away by not making Arden go to the nurse’s office for her type I maintenance, the nurse’s office is where the sick people are and Arden is not sick - she has a chronic illness that requires constant overseeing but she doesn’t have a cold, the flu, strep non of that, she’s actually a really healthy little girl”.

 

I asked her to, “please find a new place for her to see the nurse until she is old enough to manage her diabetes in the classroom, please”.

 

I told her that I don’t want fight about this, that in fact I may not have enough energy to but that I would if need be. I asked her to find a system that works for the school, I don’t need or want to be part of deciding what that is but that if it couldn’t be handled that I would add the request to Arden’s 504 plan immediately. She said that she’ll be getting back to me soon... I believe her. 

 

She thanked me for being so honest and I thanked her for her concern. We never spoke about the long term issues that this will have on Arden’s education but that is a big concern of ours.

 

If you have thoughts on this please leave a comment and I’ll forward this post to the school. We’ll all benefit one day if these practices become the norm.

 

**

The following are archived comments from this post. You can post new comments below.

Lorraine

This is an interesting point. Makes me think. Caleb typically checks his sugar in the classroom. When he is in the nurse's office, he washes his hands, has his own desk and isn't really "near" other kids.

But we have had the sickness year from hell. Could it be related? Could there just be more illness overall but yet he's exposed to it more even if he's in the nurses office just at dismissal when no one else is there? Maybe. He had this same plan last year and he wasn't nearly as sick. His sister has been crazy sick too, and oddly it's been different sick - different schedule than Caleb.


Hmmm....

I don't know the answer, but I don't think finding another place to check can hurt.

What an image you portray there Scott! It sounds like you will get a reasonable response - you always do.

I hope you get some sleep soon! And conrgats on the snack stand!

Wednesday, March 30, 2011 - 01:00 PM

Cara

I was in school soooo many years ago that things like this weren't an issue. But I wouldn't think it should be an issue to let her get her care someone else. Having diabetes and being sick is awful. I was out of work for almost a week earlier this month dealing with sickness. I still think had I not had disbetes, I'd have been back to work days sooner.

Wednesday, March 30, 2011 - 02:58 PM


 

Sub Driver Nirvana

Scott Benner

Six months before Arden began her school career - that’s when I first approached the staff at Arden’s school to discuss her diabetes care.  Many though that I was too early but I knew how much information was going to have to change hands and I knew it wasn’t going to be a quick process.  I also knew that I had a lot to do, like make the buses safer for kidswith needs.

 

Much has been finalized since that summer and Arden is now in first grade.  There was however one lingering issue,  substitute bus drivers were to be informed of Arden’s type I, given a fact sheet about her and then offered the opportunity to switch routes if they felt uncomfortable driving her.  Sadly, every time Arden has had a sub driver, the driver never knows she has type I - until yesterday!

 

I was so excited when the door to the bus opened and I asked my stock question, “were you told about her?” - they always look back blankly and say, “no” but not yesterday...

The driver nodded and said, “yea, she has type I diabetes, I saw the sheet - were good”.

 

I felt like I won the olympics or the lottery or something - it was just the coolest feeling!  The coolest feeling that is up until I got a phone call saying that Arden had been on television the night before...

 

Class Demonstration

Scott Benner

Arden’s class was assigned a home work project recently, she had to pick a task that she knew how to accomplish and break it down into four steps - First, then, next, and last.  She was to write out the steps and then perform them in front of the class.  Thanks to ex Governor Corzine passing a few diabetes friendly laws before he left office, Arden was able to test her blood glucose as her project.  

 

She got her grade back today and she did very well!  

 

I was super proud of Arden for wanting to test herself in front of her classmates and gratified that our notion of not raising her to be shy about her type I is working out so well.

 

A+

No lectern required

Scott Benner

I went into Arden’s class this morning to give the six year old version of my, “what is diabetes” talk to Arden’s classmates.  It went very well, the children were very attentive and interested, they asked good questions and took the answers in with a great deal of interest.  

 

After asking the kids if any of them ever had a cold only to have it go away (they all raised their hands), I described that Arden has a part of her body that doesn’t work correctly and that unlike their colds Arden’s body wasn’t able to fix what stopped working.  Not too bad considering I didn’t rehearse.  We chatted about insulin and foods that are at times more like medicine and then as on cue Arden’s DexCom indicated that it was time to test.  Luckily those little kid’s eyes don’t have lasers built into them or Arden’s finger tip would have been burned off... It was completely silent in that room while she tested.  Then we talked some more, I assured them that Arden was no different then they and stressed that while if they notice something strange about Arden’s behavior they should tell an adult... that she did not need any special attention (Arden had a classmate last year that tended to treat he like  a baby and she was constantly looking after her in a way the Ards found irritating after a while).  

 

I explained why Arden was late today and then went along my merry way.  One more step closer to breaking down the wall of understanding between type I and the world -  23 more people on the planet won’t look at type I again as if they are any different then anyone else.  

 

Be transparent...

 

**

The following are archived comments from this post. You can post new comments below.

Kari Kuhar
Wonderful to read this!  I myself am a Type 1 teacher of first graders :)
Friday, September 17, 2010 - 07:25 PM