Friday, June 15, 2007

He's Number One

We met with the guidance counselor and the school nurse in a tiny, cluttered room. 2 v 2 like a doubles ping pong match.

"So, tell us about Charlie," the guidance counselor says.


Where do we begin. Once we got rolling, Susanne and I were throwing everything at them. Over three and a half years of observation of what diabetes can do a small child to be summarized in about an hour. We were finishing each other's sentences and we were a bit all over the place, but we stayed on the same page.


The two ladies tried to keep up with us, scribbling feverishly in their notepads.


Glucagon


Call 911


Check ketones


Rub cake icing on inside of his cheeks


There was some heavy gasping at times from the guidance counselor, who we happen to like a lot. They tried to play it somewhat cool, saying they've been through emergency situations at school before, but their body language was more like, ohmygod, ohmygod, ohmygod, ohmygod, ohmygod. I've said this before. That's OK with me if they're scared. I want them to be on heightened alert. And to be fair, we were throwing some frightening possible situations at them and talking in a language of blood sugar numbers and boluses that they are not familiar with. It was literally a crash course. They have every reason to be nervous.


Early on, we almost went into attack mode when the nurse sort of questioned why after all this time, he didn't have better control. Susanne slowly retracted her claws and explained to her how he is a growing boy and his insulin needs are often changing. She also explained the gazillion variables such as stress and sickness that could wreak havoc on his blood sugar.


At one point Susanne told them he's a good boy. He doesn't have many friends (who are boys) and he's just so excited to go to school. Please just treat him like a normal boy. He's not normal though, she said under her breath. Her voice quivered a bit. I looked to her to see her eyes get glassy and tear. In doing so my eyes did the same.


In the end, they told us what we really wanted to hear. No matter what, Charlie will be number one. He comes first. They mentioned they have a child with a bee sting allergy and also a 4th grader with diabetes who is apparently on auto-pilot. Never any issues. But, Charlie's needs will always come first. They also mentioned that Susanne can come into the school anytime. We all agreed that it would be beneficial for all involved if she did this for the first week or two.


And then a couple things we really didn't want to hear. The questions of the day from the nurse.


"When you give the Glucagon, do you inject right through the clothing?"


"So just to be clear, we give Glucagon if he's under 80?"


Uh, no and no. Oh dear. Should be an interesting school year.


Last thing. When we handed a copy of our proposed 504 plan over, the nurse asked incredulously, "How did you? ... Where did you? Who helped you with this?"


Thank you to all of those trailblazing parents of children with diabetes. You have given us rookies the resources and the words of wisdom to fight the good fight for our children's rights.

8 Comments:

At 8:40 AM, Blogger Shannon said...

You'll have to play it by ear throughout the year. New situations will arise that may not be covered by the 504 plan.

The nurse has called me throughout the year to get advice or to confirm what she decided to do for a particular situation.

Charlie will have a great school year.

 
At 9:26 AM, Blogger Megan said...

Wow, I can't imagine how frustrating these meetings must be for you.

Just one comment- if glucagon needed to be used, I'd say yeah, go right through the clothes. That's what people generally do with epipens, which is probably where the nurse got the idea.

 
At 9:52 AM, Blogger Carey said...

Shannon,

I'm sure situations will come up. We explained to the nurse that we will get to know each other very well.

Megan,

Maybe I judged too harshly regarding the clothes thing. I had no idea. We did have to use Glucagon once. Pulled his pants down and went right into his butt. If they were giving a butt shot through clothing, it would certainly be a shot in the dark as you'd have to somehow avoid his site.

 
At 11:25 AM, Blogger Vivian said...

Carey - Sounds like you had a productive meeting. You both are doing a great job and Charlie will have a great year.
Congratulations on 11 years! That is so funny that we have anniversaries on the same day. I hope you guys enjoy your day.

 
At 1:26 PM, Blogger Bernard said...

Wow, that's one way of celebrating an anniversary.

I hope that after this the school year itself is fairly easy!

 
At 1:59 PM, Blogger Chris said...

Good job man. You have to put fear in thier eyes. You have to make them uncomforatable.
The last thing you want them to be is nonchalaunt, that is obviously very volatile. The first week or two of Emma's daycare i want my phone to be rining off the hook.
But your awesome dude. I am happy for Charlie to have such amazing parents.
Even though you will never figure this disease out, i know one thing for sure, is that you have IT figured out.

 
At 8:52 AM, Blogger Major Bedhead said...

I thought of something else that you might want to do for the staff at the school. I made up a one page sheet with symptoms of lows and highs on it. I also put a photo of O at the top of the page. I made a ton of copies and handed them out to everyone in the school. I wanted to make sure that everyone knew about her and knew what to do if she was acting funny.

 
At 7:05 AM, Blogger Penny said...

Sounds like the meeting went pretty well.

When we had our meeting, I just couldn't emphasize enough that Riley be treated like everyone else. And, I wanted his teacher to know how serious this disease really is, but at the same time it's manageable and shouldn't take up a lot of her time.

But, then how do convey how important it is to watch him and at the same time not single him out?

Hard to do.

Susanne did a great job retracting her claws. I'm not sure I would have handled it so well. And, shame on that nurse for even asking such a question. Maybe she meant well, but it almost seems like she was implying you guys weren't doing your job. Which we all know you are. There are just so many variables to this disease.

Anyway, sounds like you're off to a good start.

 

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