New plan for school and a sweet daddy daughter moment

Arden was on the longest play date of her life yesterday. She went to her friend's house around four in the afternoon to swim and ended up staying until ten that night. I've never left her alone before this date but I wanted to use this opportunity as a practice run for our new school day management plan.

Arden was originally just going to swim and come home but our results were so good that she was able to expand the plan into dinner and playtime afterward. She and I co-managed her diabetes by text and phone with no help from adults on her end. Interestingly, her tone while we spoke on the phone was more confident and mature then normal. Almost like she put her big girl pants on when she was thinking about type I - which was very inspirational!

For the first three years of school Arden has visited the nurse every time that her diabetes needed tending to; before and after meals, activity, for highs and lows and so on. Those visits, while necessary and also very helpful to her maintaining a steady blood glucose level, took quite a lot of time away from her school day. 

Thanks to a law that was passed a few years ago in New Jersey, children are allowed to test their blood glucose in the classroom where we live. I have been waiting for the time in Arden's maturation where I felt comfortable that she and I could co-manage her type I over text/phone without an adult present to double-check her steps. I decided at our last 504 meeting that third grade was the time to give this idea a try. Since then we've been adjusting our at home management routine to mimic this reality and last nights play-date was our first official test run. Arden doesn't of course think of all of this in the same way. That is, she was just on a play-date and not aware that I was testing my theories. 

I was so happy with how smooth the evening went that I had no trouble extending the date twice as the evening progressed. When Arden returned home at the end of the evening she was pretty hungry and so she had a late-night snack that I covered with insulin, perhaps too completely considering the amount of swimming she did. Around four thirty in the morning all of her activity from the day caught up to her and she experienced a low BG. 

When I checked her DexCom CGM it said 'low' and the graph indicated that she had been dropping slowly but steadily for the last two hours. When I tested her with a finger stick she was 42. I set a temp basal for an hour that eliminated her basal insulin and brought her a juice box. 

I spoke softly to her to let her know that someone was in the room and when I saw a bit of life on her face I began to repeat, "your blood sugar is pretty low Arden, let's drink some juice". After the third or fourth time I spoke she waved her arm at me in a sleepy but annoyed fashion and then sat up, she looked at her clock and then in the sweetest voice you can imagine said, "good morning". I handed her the juice box and she began to drink, in between each long sip she would open her eyes just enough so that she could see me in the glow that my iPhone created. She smirked each time in a loving, not joking way and then bumped the tip of her straw into my nose. After a number of sips (and bumps) she tried to hand the juice back to me but I needed her to take one more drink. After that last sip she said, "okay daddy I'm done, going back to sleep now... thank you".

I told her that I would sit up for a while to make sure that her BG leveled out and she replied, "sounds good, I love you". I told her that I loved her too and adjourned to my room with a great big smile on my face. Then I busied myself on Twitter and read some emails to stay awake.

I am going to be blogging extensively about Arden's new management process at school over the first few months of the school year, I hope that you find those posts helpful as we move towards a more independent lifestyle for Arden. It should be interesting to say the least. Arden will be permitted to keep a cell phone with her in class and she will be contacting me directly when she tests, eats, feels dizzy and more. We are going to try and eliminate as many visits to the nurses office as possible. I'm very thankful for the open-minded way that Arden's school, teachers and nurses are approaching this change. I am sure that it is difficult for them to try something that is so outside of everyone's norm. It's very exciting to be stretching these boundaries for Arden and the other children that live with type I.

When diabetes throws you a curve... just go with it

My son Cole is a baseball player and we talk about different aspects of playing the game with some frequency. He's a good listener and he makes adjustments most times with ease. There is this one pitch that he struggles to hit, it's low and just a bit outside but is almost always called a strike. Cole won't swing at that pitch no matter how many times I assure him that he can reach it. I tell him all the time to, "just go with the it" but he resists.

Perhaps 'just go with it' is something you have to feel and not something another person can describe but I'm still going to try.

Managing your day-to-day stress as it relates to your child's type I diabetes is, if you can find a way to 'feel it', as easy as just going with it...

Arden's BG was pretty perfect Sunday evening when we changed her OmniPod, except for her basal she didn't get any insulin for the remainder of the evening. By midnight her BG had drifted up to around 180 so I delivered a small corrective bolus. An hour later her DexCom began to beep and indicated that her BG had risen above our high limit, which was odd because I definitely expected that the last bolus would bring her to 120 but instead she was more like 220.

Getting the idea that the last bolus wasn't making a dent in her number, I gave a little more and then waited two hours to see where we stood.

Two hours later was about 3 am and her BG had not moved, I knew now that we either had to push a large bolous and everything would be great or change the site and start over. I wanted to bolus big but at that time of morning I couldn't be sure that I'd be in any condition to act if she was suddenly 45 at 5 am so I gave another small correction and set an alarm for 6:30 (an hour and a half before Arden gets up for school).

When the alarm sounded I felt like I had sand in my eyes. I checked her CGM and saw the steadiest line you could imagine, steady but too high. I bolused this time for the full correction plus the 36 carbs that Arden would be eating for breakfast. I then literally thought, "that'll do it" as my head hit the pillow to get my last 45 minutes of broken sleep.

In the morning I got Cole off to school and went back upstairs to wake Arden whose BG I was sure was going to be in range and heading south just in time for breakfast. The rest went just like you think it did. Her BG was a little lower, falling but in no way was she feeling the full effect of that last bolus. The site needed to be moved.

In that instant my entire day changed.

Arden wasn't making the bus and I needed to wait out the last bolous before she could even eat. It was a mess but I didn't let the sudden upheaval of the day rattle me or Arden. I explained how our day changed so Arden wouldn't be flustered, we pulled out some books to read to help take her mind off of her hunger. I moved an appointment, slide a number of to-dos to the next day, emailed the nurse and her teacher and then refocused on my new goal for the day - getting everything back to normal and salvaging as much of Arden's school day as I could.

I realize that being a stay at home parent helps lessen some outside influences. I don't have a boss to report to so I can be flexible but it's not the mechanics of the day that I'm most proud of. I'm proud that when the pitch tailed away from me I didn't complain that it was a ball or that the ump was screwing me. In fact I didn't even wait for someone or something else to tell me what my reality was going to be.

I just went with it, I dictated what happened next.

There is a moment in almost every situation when you make a choice. You can dress it up anyway you like but in the end you decide how you feel and what you'll do next. If you go with it and just except that in this moment you took the best option available to you, well, I don't understand how you can be upset. We may not control the when or why in our lives but we sure can have our say in the how.

When my son learns to let go and swing at that low outside pitch he's going to miss a few, he'll foul off even more but once in a while he is going to drive that shitty pitch so far into right field that it'll make all the swings and misses very worthwhile.

Arden got to school at noon. Her BG was in range, she had breakfast and was ready to learn. We even got to spend some great time together. I did the best I could with the pitch I got.

Arden's 504 plan for download

I pulled ideas from a number of sources when I wrote Arden's 504 plan. I found that there were good and useful ideas in a number of places on the internet but that most templates went (I thought) too far. I felt that they went into a level of detail that would be off-putting to the school district. Over a number of months I culled, wrote and edited a plan until I settled on the one that we use now. It covers Arden in all ways medically, scholastically and personally that I found necessary. Recently I was reminded that I promised to share the plan and never did. So let's take care of that right now.

Below are links to Word and Pages versions of Arden's 504 plan for type I diabetes, all names have been replaced with place holders, you should make changes where and when you see fit. Please know that the process of putting a 504 plan in place can be lengthy, requiring a number of meetings. Just like in any negotiation you will be asked to make concessions and you should ask for them. When in doubt of your rights, refer to the AFT (American Federation of Teacher's) document, 'The Medically Fragile Child', this pdf is full of information that you can and will need while making your way through the process... it's a bit like having the other team's play book and is quite helpful!

Arden's 504 Plan (Kindergarten -2nd) - download for Pages

Arden's 504 Plan (Kindergarten -2nd) - download for Word

The Medically Fragile Child - download PDF

I urge you to seek out the laws and guideline that exist in your state regarding your child's rights and what the state requires of your school. It's my experience that the school will try to get away with taking on as little responsibility as they can get away with. Being educated about what is required of the school makes it much simpler to get them to deliver. Think of it like this... When you are buying a car there is a number that the sales person can't go below, your offer doesn't need to be any more then that number. If you don't ask for the lowest price available, the salesperson isn't going to tell you that you offered too much. Knowing the laws and guideline is knowing the bottom line.

Please email or leave comments with any questions.

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I want to add that my blog should in no way be confused for legal or medical advice. These are no more then my experiences and I am sharing them with anyone who is interested in knowing how I put together a 504 plan for my child. Never take my advice without first checking with a professional.

First Day (of school)

The 504 meetings are finished and the D-supplies have been delivered to the nurse's office - summer with the kids is officially over. It makes me a little sad, I really do love spending time with them! 

Arden was so excited this morning that she yelled for me the instant that her alarm woke her. As I walked into her room I said, "what's wrong" and without taking a breath she blurted out (very fast), "some of my friends in my class are going to be like, oh my gosh you're in my class... that's so cool!" and then she smiled the biggest smile and asked me for a hug. Then she hopped out of bed and got dressed - I sure hope that this cheery morning vibe continues for a bit.. 

Funny aside: As I was writing this the school nurse called with Arden's pre-snack BGnow. She said in a quite normal and upbeat tone, "good morning! Arden's blood sugar is fifteen and the PDM wants her to have.... wait - she's not fifteen - obviously, or I'd be screaming... she is 130 and her snack is fifteen carbs". We laughed pretty hard... Oh diabetes humor, you are priceless. 

 Arden waiting for the bus

Building a Working Relationship With School

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.

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