Our long story shortened...

20 years of being in love

14 years of marital bliss

5 years of infertility

9 months of a high risk pregnancy

2 perfect boys (at the same time)

1 heart failure

1 type 1 diabetes diagnosis

1 happy life

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I am a stay at home mom who is raising twins. One of my guys has type 1 diabetes and one does not. I am writing this blog to unite type 1 parents or twin parents. Comment on my posts or in the "what's your high?" and "what's your low?" to join the community of parents just trying to do the best we can!

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back to school is a full-time job

Ok, gosh where to start? 

I have decided that getting ready to send Rocco to school is a full time job for about two weeks. 

There are so many moving parts to Type 1 diabetes that it is hard to train it all and make sure everyone understands. I, and every other mother, wants to and actually has to make sure it's correct. So, at the beginning of school - the pressure's on! 

I will try to break it down. 

Part One: Contacting the school.
I have tried for three years to contact the principals and/or administration to set up a training meeting at least two weeks before school. I figured then everyone would know how to care for Rocco and they could move on to their other pressing matters of opening the school. They can check Rocco and I off the list. However, when I call or email two weeks before no one answers. I have yet to find out when the magical day is when the main players come back to work. It never fails that I get a call back or an email around one week. Well, that is almost too late. 

Here is the reason. At our school we do not have a school nurse. We have a district nurse that oversees medical plans and assists in Epi-pen and Glucagon training. So we have to use a para-professional(assistant) in the school. Due to the fact that diabetes is a 24 hour 7 day a week job of monitoring a number that can fluctuate 400 points, my preference is that one person is the hub for all of those numbers. If there are too many cooks in Rocco's kitchen, the ball gets dropped. If the ball gets dropped, my Rocco could drop. And I mean that literally. So, I always want to have one paraprofessional in charge of those numbers/Rocco.  

My experience has been with the two principals so far that they at first concentrate on the coverage of the blood sugar checks. They schedule and hire according to the times when he needs to be checked. It is around three to four times a day while he is at school. Initailly, that makes sense. But, eventually they do come to realize that it is about the daily care of the child not the daily checks of the child. 

Let me give you an example of what I mean:
Rocco needs to have his blood sugar checked before any food(even three m&ms) and any exercise. That would mean they would need a person in front of him at those times. Check! 
But, Rocco's blood sugar also can be high in the morning then low before lunch then high again before he takes a test then low after gym. Try not to judge, blood sugar numbers can flucuate from food, exercise, growth, hormones, stress, excitement, the processing of fat, and the hopscotch game he played. It is ever changing and people with diabetes can only control the food and exercise side of it. The rest is nothing a person can physically control. Well, maybe the hopscotch. So, even with the best foods and plenty of exercise it can vary. As you can see the blood sugar check is a small part of the care that he and the other two kids with diabetes need throughout the day. 

So, usually it takes a couple of weeks of letting that schedule marinade before the principals start to understand this. Then, they really start making some calls to the school administration to get the hours approved for one person to care for them all day. I hold my breath until this happens.

So that was part one. Scheduling and finding the person. 

Part two is getting the meeting. 
Once you get the principal on the line, you need to start scheduling "the meeting".. Dum, dum dum! Our meeting consists of the following people. 
School secretary
Back up paraprofessional
School/district nurse
Possibly a member from JDRF or the ADA(my current principal asked JDRF to come this year)
Gym teacher
Music teacher
Library teacher
Art teacher 
The bus driver should be there too but we can't do that in our district. Different company. 

Our meeting also included the two other parents and their teachers. So we were 16 in total. Talk about intimidating! Everyone staring at you waiting for you to teach them how to care for your child in two hours or less. Thankfully, I can summon up my previous experience as a sales rep during those times. 

*sidenote: If you also need to schedule your meeting, I HIGHLY suggest you placing your child in a sound proof room near the meeting. The reason is, you are about to tell everyone he comes into contact with all of the worst case scenarios that may and probably/hopefully never will happen. Kids are too little to understand all of that while they are small. That just my advice... 

Ok, back to it! 

Once I gathered the people, then I had to teach them Diabetes 101. Also I had to teach them what happens if Rocco becomes unconscious (without scaring them!), teach them how the schedule should go, teach them how to administer a giant shot into his leg if he does pass out (glucagon), teach them how to check his blood sugar and finally how to work his pump. I don't even begin to ask if his fellow students can pass out pencils on the birthdays instead of 35 carb cupcakes. TMI!! 

Then, and only then, I get to shove a packet of jargony papers in their hands and send my guy into thier hands the very next day and hope they remembered not only half of it but ALL of it! 

Part Three: the teacher.
Next,  I work specifically with the teacher. The teacher needs to understand that if Rocco's blood sugar is too high or too low, their brain is actually being starved of the glucose it needs to function correctly. At those times, he is not thinking at an optimal level and should wait until his blood sugar comes back within a normal range before any tests or quizzes should be administered. I can only hope he gets a teacher that cares and is willing to help him out. Because, let's face it none of this is his fault. 

Part Four Supplies:
Finally, I have to stock supplies that he may need throughout the next couple of months. I have included pics of what I packed. I hope the pictures are helpful but if you see something I am missing, please leave a comment and I will include it in my stuff, too! 
But, wait! I am not totally done yet...

Part Five: Superhero Mom
The first week of school, I have to get out my prettiest propeller and strap it on! Because, I get to change in a phone booth and turn into my superhero self - dun, da dun DUN!!! HELICOPTER MOM! Whether I like it or not! No meeting girlfriends for coffee or organizing that closet! Nope! Hold up! Almost done. I will be attached to my child at least the first week. If I have done my job correctly and scared the staff enough to take Rocco's needs seriously, I will be asked to shadow the paraprofessional while she learns to care for him throughout his days. I feel my job at this point is to not disrupt Rocco's day or to physically do the diabetes care but to hang in the background for support. I like to be a "teach a man how to fish" kind of helicopter mom. THAT, in my opinion is when the magic happens. The special kind of magic that disarms the troops and allows me to receive texts from that very capable paraprofessional reporting blood sugar numbers throughout my next nine months of getting on with my life. Well, as much as a diabetic mom can let herself. Because even if the school gets everything right, I will always be checking my cell phone every 5 minutes and cataloging his numbers while I still worry.

So, yes, as much as I would love to avoid this each September and homeschool my bear cubs. This mama bear has to cut the proverbial pump cord and let us learn. All of us! 

My goal is to try to do all of this with out Rocco looking. I pack supplies at night, I email instead of call when issues come up and I meet with staff members without him. I want him to worry about pencils and friends not blood sugars and schedule drama. 

I know I get it right when he wakes up on the first day excited and looks like this. 

This smile and this sweet cup of silent pumpkiny goodness are my "paychecks" for a job well done (I hope). 

If you are a mom of a child with diabetes, let me know how your start of school went. I'd love to hear all about it! 


Tomi Kluver said...

At Adli's school, they do not have a full time nurse and will not be getting one. The school secretary is the one who is in charge of testing her blood sugars all day. Do they let you have his testing supplies with him in the classroom? I find it greatly disturbing that she doesn't have them right there and is made to go to the office to test each time. She is fully capable of treating there and wouldn't have to walk there. We have a big bin that we keep in the office and her glucagon is always in her kit that she takes to and from school so we only have 1. I am thinking maybe we need one more to keep with her in the classroom or PE. Thanks for all your ideas!

Shari said...

Tomi, I totally agree with you that you need to let her test in the classroom. It is hard to have a tough conversation with the staff but one weird moment for you will save her thousands throughout the next year. You are such a great mom and are so nice, I am sure they won't even know what hit them when you are done! Stay strong!