Day one of our New School Plan

Arden went back to school today to begin the third grade so it's time to put our new plan into action and see what happens. I had a nice 45 minute meeting with Arden's teacher and school nurses yesterday so we could discuss how the shift in care was going to happen. Having interested, committed and kind people on the other side of the table is such a pleasure, I wish I could thank them everyday for being so wonderful and adventurous.

I say adventurous because today Arden became the first child in the history of our school district to manage their type I diabetes without being required to do so in the nurse's office. I say wonderful because even though we are forging into uncharted waters, no one at the school is freaking out or getting cold feet. I suggested yesterday that we just begin down our new path together and let the process grow and adapt at it's own pace. I was thrilled when everyone agreed even though what I was asking for is covered by state laws protecting children with diabetes and Arden's Endo backed 504 Plan. What I hear from so many of you is that most schools get scared and put up walls when you try something different. For that reason alone I feel very lucky today that I have the relationship that I do with these amazing educators.

What is this New Plan all about? How does it work?

In the past Arden visited the nurse for every diabetes related decision but now she will only be going to their office if an emergency situation arises. We are going to try and limit the visits to unexpected low blood glucose readings, dizziness and other such moments that feel like they aren't manageable over the phone.

I began my day by visiting Arden's class to explain that this year would be different then last. Arden's entire class moved from second to third grade together this year and their teacher stayed with them so everyone understands the nuts and bolts of Arden's nurse visits and testing. This short talk was to take a bit of the excitement away as I don't want the exuberance of the children to cause the teacher or Arden to feel uncomfortable. You may be wondering how seeing something that they all witnessed last year as Arden's nurse visit companion will be exciting? Well, Arden will be communicating with me from her desk with her iPhone. We will be using text messages whenever we can but Arden also has carte blanche to call me and I her as we need/see fit. Talk about progressive, right?! 

I'll be right back... she's texting now...

We just set a temp basal via text and she is going to test in 30 mins and then text me. This is working!!!

Anyway, there are snacks in her class (see above) plus juice boxes in a small refrigerator. She will be carrying her OmniPod PDM as well as a juice box with her from class to class and every room that she visits (Gym, library, etc.) also have snacks stashed with the teacher. I've tried to set the school day up so that her experience in the building mimics the one that she has every other day. Arden doesn't make her bolusing decision autonomously yet so with the exception of the texting/calling, this won't be any different then when we are at home. Actually, sometimes we do text about BGs from room to room so I guess this is almost exactly the same.

Why is this so different?

Arden's school district teaches a number of children with type I diabetes. Many of them test and bolus without supervision, especially the older kids, but they all do it in the nurses office and then record their actions into a log. The school can claim what they want but the log is mainly kept to protect the school from litigation. The kids may use it for reference but make no mistake, it's there to cover asses. Arden doesn't have to submit logs to the school and unless she ends up in with the nurse for care, they won't be apprised of the steps we take throughout the day. It's a different approach then most take but I think it will go a long way toward giving Arden more confidence and independence. Perhaps best of all Arden won't be leaving class so much throughout the day. I found myself so concerned with type I related safety at school that at times I was willing to ignore that so much of the education day was being missed.

typos: Daddy 1 - Arden 0

Day one wrap-up:

Our new plan worked well on the first day. There was one instant where Arden didn't hear her text message alert so I waited for a few moments and then called her. I received texts during class, library and from the bus. There was a bussing issue in the afternoon that caused Arden to be stuck on the bus for much longer then we plan for and her BG did begin to fall during the ride. The entire event was handled by Arden with one text and a phone call.

Later in the day I received a phone call from Arden's teacher, she just wanted to reach out to say that everything felt smooth on her end and the addition of the testing and phone to the room was never an issue. She praised Arden for being so mature with the phone, we chatted for a few minutes and agreed that day one was a success. On to day two...

Special Request

I held this post back for one day so that I could write about the 'Unfathomable Loss' that one of our fellow DOC members recently experienced when her husband was taken suddenly by cancer. I hope that you can take the time to read my post about Meri and her family.

Update on 2012-10-02 12:30 by Scott Benner

The first follow up to this post, 'New School Plan UPDATE: Emojis and texting DexCom data' is located here

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