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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

Thorn

Scott Benner

I learned something today that I am very proud of and I wanted to share it with all of you.  A little back story...  Last year was Arden’s first year of school and we spent a lot of time and effort putting her 504 plan in place.  The process wasn’t always smooth but I found that being frank and honest was the best approach when asking the district for something that they either didn’t normally offer or that they weren’t accustom to doing.  For the most part we always found common ground.

 

One of the things that I was shocked to learn during that process was that there was no consideration given for the time the children spend on the bus.  No one thought a second about it (or so it seemed).  So I went to work on a process for the bus drivers.  I created the emergency card that is now on the bus (shown below), sub drivers are now told about Arden and given a chance to refuse the route if they aren’t comfortable with the added responsibility, Arden’s driver is always Arden’s driver - every year.  As long as Arden has type I, Denise has a job.  Denise attends the school wide ‘diabetes recognizing and reacting to signs and symptoms’ lecture that is given to EVERY school employee (I may have had something to do with that too ;) ...), Arden is the first dropped off and the last picked up to minimize her time on the bus, if the bus encounters a mechanical defect I am contacted by the driver and given the bus’s location so I can extract Arden.  None of these things were easy to accomplish and they were all met with varying degrees of resistance but it’s important to understand that the school doesn’t resist because they don’t want to do the right thing, they resist because resistance is the human response to change.  By keeping that one fact in mind I was able to make school and the bus a safer place for Arden and the other type I kids in our district.  

 

Now back to that “thing” that I’m proud of...

 

Today I learned that the new program offered this year by our transportation department called the, ‘Medical/Special Needs Alert Program’ is a direct result of the plan that I put in place last year.  No longer do parents have to make endless calls, take countless meeting and experience crazy stress just to make the bus a safe place for their child.  All they have to do is call or send an email and they get everything that Arden gets...  It turns out that some (in the district) always wanted this to be the way things were done but they could never internally get the district to move on the idea.  It took me being a thorn in a few people’s sides to break the log jam free.  

 

Go be a ‘thorn’ for your kid... You’ll be glad you did!  

 

Last thought.  I’m sharing our life in the name of transparency.  Our children need the world to understand type I as completely as possible.  That understanding is, in my opinion, the fastest path to a possible cure and in the interim the best chance our children have at the most normal life that is possible.  I hope that this glimpse into Arden’s Day prompts you to make a small donation to her 2010 JDRF Walk for a Cure. Donations can be made at this link.  The link is safe and secure and your donation is 100% tax deductible.  Have a great day!

 

**

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

 

Adam Naddelman
Great job Scott.  Your hard work never ceases to amaze me.  Have you thought about contacting the state to see if  this can be implemented across more districts?
Friday, September 10, 2010 - 10:13 AM
Paul
Great news, congratulations. Isn't it amazing what you can do with a positive attitude. No need to go in all confrontational. That gets you no where. 

We've had good success with our School District as well for making change. We went in as partners with the District. Beth and I organized the other parents of kids in the Autism Support classes and got the District to not only expand the elementary program but now as of this year will have ASD support from K-12. We continue to meet regurally with the Administration and teachers to keep on top of progress and see where we can do better. Some parents wanted to go in guns blazing but I talked them down and we did it my way. It worked and our kids are benifitting.
Friday, September 10, 2010 - 03:30 PM
Kudos!
Thursday, September 16, 2010 - 08:58 AM

 

 

BIG day for Arden

Scott Benner

 

First, let me say that the picture on this entry has nothing to do with today’s entry... I just wanted to show it to everyone.

 

Arden is going to buy lunch today at school!!!  What a big day this is for us and a good reminder of how type I effects things that you’d never imagine.  Here’s is what we had to do to make this day happen. 

 

We had to get the complete and comprehensive list of nutritional values for every food that the district will serve this year.  That took some doing, the highlight for me was when one of the cafeteria people told me that it was difficult to get me the list because she was, “so busy making all of the food for the normal kids”.  I let that one go right by, chalked it up to not thinking... I didn’t read any malice in the comment at the time and in retrospect, I still don’t.  Never-the-less her words did ding my soul just a little.

 

Then Arden had to get comfortable, the nurses needed to get comfortable and I needed to get comfortable - we all needed to get comfortable enough for us to make this leap.  May sound odd or overprotective but it’s not, it’s just how things are.  So today at 1:30pm I will be in the nurses office for Arden’s pre-lunch BG check and then she and I will go together to the cafeteria and get her some lunch... just like the “normal” kids.

 

**

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

Anonymous
Good luck! How exciting for her!  Hannah has celiac disease along with type 1.  Hopefully we will be able to do this one day too! Becki Carlin
Wednesday, May 19, 2010 - 01:44 PM
Maria
Amazing! I am so happy for her!
Wednesday, May 19, 2010 - 01:52 PM
Scott
Thank you! My thoughts are with you Becki.
Wednesday, May 19, 2010 - 04:56 PM
Anonymous
What a great accomplishment for Arden.  She looks extremelly pleased with herself as she gets ready to take her first bite of school hot lunch!  Way to go!
Wednesday, May 19, 2010 - 08:30 PM
Hi there - just found your blog and it's great. I have a little gal, Grace, who is 7 and Type 1, diagnosed in January 2009. She is also on the OmniPod as of a month ago and things are going great. I love your stories about Arden and I have been fervently reading your posts. Lots of similarities between our two little girls. 

I just had to comment on buying lunch at school. I live in a pretty urban area and to get the carb counts on Gracie's lunch menu has been a little like being a CIA operative. No one wanted to give the info for a long time and why you might ask. Cause school lunches, on the whole, are carb filled wonderlands of delight and non-nutritional value for the most part. I still let Grace buy lunch though, cause she needs to, just like Arden does and all our kids do.

I get the carb counts from our head nutritionist in our district. It's through Aramark actually. I sat with her in August and we went through the foods and their carb counts. I then made a list of them for the school nurse. Then, each month when the lunch menu comes home, I tally up each day and circle the carbs on each and every item. So Grace can then decide if she wants to buy or not, just like every kid. So then we know ahead of time the carb count on each lunch and it's kept in the nurse's office as well as home. This is just what works for us, but you might consider it. It really has been great, everyone can look up whatever she eats.

OK, long enough comment to leave??? I also blog about my daughter's journey with T1. You can find me at asweetgrace.blogspot.com. I think we might come from the same region.
Thanks for your blog and for sharing, it's wonderful.
Thursday, May 20, 2010 - 09:10 AM
Denise
Adorable photo ! And what a step forward, to be able to eat that lousy cafeteria food like the "normal" kids!! Thanks for the update- love to see Arden's and your family's journey...
Friday, May 21, 2010 - 10:41 PM
Dayna
Congrats Arden! I'm so happy for her on her big step forward! See you guys soon :)
Tuesday, May 25, 2010 - 01:48 PM
Scott
Penny, Denise & Dayna...

Thanks for all of your great comments!  Penny, I'm glad you are enjoying the site so much! I'll have to check your out soon.

Denise, She'll only be doing it once in a while. That pizza did look icky.

Dayna, xoxo
Wednesday, May 26, 2010 - 08:49 PM

 

 

 

 

 

 

Prep equals success

Scott Benner

The other day Arden’s OmniPod experienced an unexpected error and shut down, which happens and is no big deal, unless...

 

Unless she is sitting on the school bus waiting to depart the building and isn’t old enough to read the error message on the PDM screen and understand it.  Then it might be a problem, right? 

 

Nope, not a problem and here is why.

 

Arden got out her cell phone (which she is allowed to carry because of our comprehensive 504 plan) and called me. She said that she thought that, “the pump had an error and shut off” and that she pushed the button to stop the beeping but wan’t sure what to do next.  I asked her to take her phone to the bus driver while I called the nurse’s office.  The nurse went directly to the bus port while I spoke to the driver.  

 

Now does the driver freak out? No, and why doesn’t she... because we have had multiple conversations about Arden and she understands the situation.  She is also comforted by the laminated instruction sheet that she carries on how to deal with high and low BGs, in short she is educated and mentally prepared.

 

The nurse called me from the bus port and we discuss if Arden will be okay without an insulin source for the ride home and we decide that she will. 

 

Then our driver scraped the bus route and brought Arden directly to our house, she was home in less then ten minutes. No one was upset, confused or shook, all because we prepared.

 

Now this wasn’t a real emergency, Arden was never in any danger but it did serve as a look at the way the people Arden counts on when she is at school will react if an emergency ever arises... and everyone was fantastic!

 

This pod error was kinda like a fire drill for us, I’m glad in a strange way that it happened.

504 Plan pt3

Scott Benner

Collecting & Understanding the Information you need

The American Diabetes Association has a detailed sample 504 plan on their site.  The JDRF also provides a link to various plans here

 

Download these documents, print them out and read them with a highlighter in your hand.  Highlight everything that you think pertains to your child.  Keep in mind that if your son or daughter is too young some of the testing language may not pertain to them right now but you still want to include it in your 504.  Including items that aren’t relevant this year but will be in a year or so is an easy way to get important concessions into the document now that you’ll need later.  This step should save you some hassle in the future.  

 

Next cut and paste your document together, I made changes like removing, “student” and replacing it with “Arden”, stuff like that.  I rewrote some languageto read as if I wrote it from scratch to avoid the school feeling as though I was coming at them with a formatted document and to make the plan feel more personal and less “legal”.  Some sections we (Kelly and I) wrote completely over to tailor to Arden. 

 

Next, put yourself in the school’s shoes, more specifically try to think like their attorney.  If anything feels extraneous to your child, take it out but don’t cut something important just to make it shorter...  Anything over a page or two is going to throw the liaison into a tizzy anyway because most parents use the schools too short and too vague form that they provide.  So pare it down as much as possible so that it doesn’t feel too overwhelming to them.  Lastly, cut but don’t cut too much, you may need to have something to use as a concession when the bartering begins (and it will).  

 

Okay that’s enough for now, except to say that you can’t begin this process early enough. If it is your goal to put a comprehensive 504 in place for your child, one that will keep them as safe as possible, that affords them the best chance to learn, it’s going to take time and a bit of back and forth.  I found starting over the summer break to be ideal, it’s slow going in the beginning but worth the effort.

 

**

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

Anonymous
We began with the ADA's sample 504, using it as a guide.  Unfortunately our school insists on using the ADA template, in its entirety.  We've ended up with a 9 page 504 that is constantly being violated simply because it's so long no one knows what's in it.
Saturday, April 17, 2010 - 10:05 AM

 

 

504 Plan pt2

Scott Benner

Part 2: Find your zen place

 

There are a few good examples of 504 plans online, I’ll link to them later (I’ll also make Arden’s available).  But let’s not jump too far ahead.

 

The first thing to understand is that you will sound like a loon (to the school) when you begin to describe how you care for your child’s type I.  It’s unavoidable, everyone except those who live with type I are likely to think that you’re an overbearing, overzealous loon.  Of course you know that you’re not and I know you aren’t, but nothing short of living with type I can convey it’s complexity... can it?

 

Since you can’t ask the school to come live with you for a weekend, how do you get them up to speed?  The answer is patiently and methodically.  Your patience will be rewarded  as the uneducated staffers begin to catch on. Don’t forget that these folks have the added burden of wanting and needing to appear in control and you are flooding them with a lot of unfamiliar, technical and jargon laden information.  You may find a nurse with a ton of experience which is great!  However, that could also lead to them wanting to do things their way for comfort’s sake.  If you have a different care plan in mind you are going to have to communicate it, perhaps multiple times.  

 

You have to resist the urge to acquiesce when faced with pressure.  They know what they know, you know how to care for your child.  Everyone is different and the schools tend to think of all type I children as the same.  There is a definite coalescing period at the onset of this process. If you loose sight of the fact that this is an adjustment for everyone, you can and will fall quickly into a righteous anger.  That anger may feel good but it won’t get you to the desired ending, which is a safe, healthy learning environment for your son or daughter. It will just get you to paying for a child advocacy attorney and years of uncomfortable daily interactions.  

 

I did well keeping this in mind... Yes the 504 act provides for my child but that doesn’t mean that the school isn’t going to react in the way that people often do when presented with change, with resistance.  I always tried to put myself in the “schools” shoes before I acted.  Remember, every time you make a request, someone has to address it and your 504 is full of requests.  It isn’t fun being asked to do more when you already feel like you do so much and the additions that you are proposing, are at their core, more things for someone to do.  These request aren’t just more work, they are scary.  Face it, it’s scary to be left in charge of our children.  The reactions you are likely to encounter initially are emotional, understandable and not at all about you or your child... you must resist the urge to respond to them in kind or things will degrade fast.  Keeping this balance without giving up your position is the crux of the entire exchange.  

 

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

Paul
I like that you used the word acquiesce in your blog.
Sunday, February 21, 2010 - 09:01 PM