Dear School,

So here’s my day so far and the email sent to the school (and district) today.  Blahhhhh

Hi [School Psychologist] and [School Nurse],

I’m just checking in to see if you were able to come up with any ideas at the meeting this morning about C’s education. I’m also wondering if independent studies of some sort were an option or idea. I’m quite aware of how behind he is and am getting increasingly frustrated, as is he, by not knowing how to help.

I just picked him up from school today due to a high blood sugar and his infusion site (where his insulin pump attaches under his skin) was pulled out. This is not uncommon or very noticeable until a high blood sugar. His clothes will continue to hold the tubing in place making it not that obvious of a problem. However, when I came to change the infusion site, [Health Tech] made it quite clear that she felt that C was lying about the problem and that he’d pulled the site on his own to come home. His story made perfect sense to me as to why he was in the office, how he noticed the problem and everything else he said. [Health Tech], not knowing how the pump operates didn’t think this made any sense. She seemed sure that the pump would’ve known that it had become detached and alarmed to alert him. It would certainly be helpful if it worked that way, but the pump does not know. When C realized that it had become detached he ‘suspended’ the pump, meaning he stopped it from continuing to release insulin, which is exactly what he should’ve done. It would’ve continued leaking insulin until it ran out. When you stop it, it does alarm. Every few minutes it alarms to remind you that it’s no longer delivering insulin, a safety feature. [Health Tech] seemed to assume that when it started alarming is when it was disconnected from his body and that that’s when he pulled it off himself.

I left, taking C with me, feeling very frustrated with the attitude I was feeling from her. C told me that when he showed her that it was detached he grinned (probably because he had just realized the problem??) and she asked why he was smiling and told him it made her think he’d done it on purpose to go home. Type 1 diabetes is a complicated disease.  C is a child doing his best to figure it out on his own while at school. When he has a very high blood sugar my first steps are to check the pump and make sure he’d given insulin for all food eaten and then check the site where it’s connected to make sure it’s still attached. [Health Tech] seemed to be acting like this was totally abnormal and could only happen on purpose.

C is a child who does not need guilt piled on top of everything else. If somebody suspects foul play, I would appreciate a phone call outside of my son’s earshot to talk to me, an adult, about it. I am quite upset by the attitude I received while in the office and can only imagine how a child, already feeling less powerful than an adult, would feel with it directed at them.

This is just another piece of the puzzle that’s leaving me lost as to how to help him succeed at school. C needs another learning option, this one is clearly not working on any levels with him.

Emily B

cc [ ****** Unified School District Health Services Coordinator]

I don’t FEEL like educating!

We don’t deal with too many people saying ignorant things or being rude or not understanding C’s autoimmune woes.  I just realized that maybe it’s because we’re not all that social.  We have such a small circle of people we’re around and it seems that a bunch of them have diabetes themselves or in their family anyways.  We dont’ really ‘get out’ much.

Remember that awful look I gave the basketball coach for suggesting he ‘go to the bathroom’ to test?  Ugh, gross.  Well, at that God-awful basketball party we recently attended there were some other things getting on my nerves.  It really was THE shittiest party we’ve been to to date.

When we arrived we were among the first 3 or 4 families to get there.  The waitress came out and I overheard her talking to the coach and team mom about when they should bring out pizza and all that good stuff.  She rattle off different kinds of soda and asked what she should bring out.  Coach replies, “Bring out a pitcher of Pepsi, Sprite and Root Beer.  We’ve got a diabetic though, so we’ll need a glass of water for him.”  C didn’t hear this so I decided not to say anything at that point.  I was already in sort of “protection-mode” knowing that we were in a pizza place and C already felt like an outsider.  A few minutes of steam brewing in my head later I said, Hey, you want a diet coke or something, or water, or whatever?  He goes, water’s good.  Phew, no scene necessary.

I KNOW that these are the times when I’m supposed to EDUCATE people.  But sometimes I feel like they’re going to nod in agreement with everything I say, smile sweetly, and not hear a thing.  I had this feeling this night and didn’t feel like dealing.  Sometimes I’m on the edge of bitchiness and don’t feel like getting pushed to the dark side.

After the pizza, Coach stood up and gave a quick little speech about each kid and handed them a cookie.  Not just any cookie, these were lemon-flavored, basketball-decorated, gluten-filled delicious-looking cookies.  Player names and numbers on them and everything.  I told C to smile and accept the cookie and just bring it over to the table (we’d brought a GF cupcake from home anyways).  So C gets called up and his introduction is made.  Coach hands him the cookie and says, “You can give this to your brother.”  UGh.  I knew the routine.  It was annoying anyways.  I don’t know what else I could’ve expected that would’ve worked better.  Maybe it was the only option, it just felt shitty to watch him get handed something and be told he can’t have it.  I hate celiac disease.

Afterwards, the team mom comes over and offers us more cookies.  We declined and she apologized for  not remembering that C had diabetes when she’d ordered the cookies.  I sweetly let her know that people with diabetes can definitely eat cookies, however C also had celiac disease which meant he couldn’t eat things with wheat, rye or barley.  That means anything with flour like pizza or cookies.   And there it was that sweet smile and nod that looked just like she hadn’t heard a thing I said.  Her reply, “Well I’m just glad YOU’RE thinking, because I certainly wasn’t.”

Ummm, ya.  Of course I’m thinking about it.  Why wouldnt’ I be?  And I would never have expected her to think about something that she didn’t know.  Thanks for that meaningless reply though.  Blah.

On the flip side, sometimes people around us getting bits of education all on their own.  To me, it feels like it’s because they care enough to open their minds and notice it more.  Last night I went out with a good friend of mine.  He excitedly tells me that he heard on the radio about some “amazing miracle treatment for diabetes.  Artificial pancreas or something??”  When people around me report to me things they’ve heard on their own, not from me it’s like the best gift they can give me.  I like when I don’t HAVE TO  educate, I just open them up to something new to pay attention to.

Not Welcome Here

So C’s basketball team had their end-of-season party tonight.  At a local pizza place.  Regular pizza.

We considered not going, but I decided to take him anyways.  I called ahead and asked if they offered gluten-free pizza and was told no.  I told them my son’s team was coming in and he had celiac disease, would it be ok to bring outside pizza that was gluten-free for him.  The answer was and enthusiastic “Absolutely.”

We stopped at our local RedBrick (we LOOOOOVVVVEE RedBrick’s GF pizza!!), grabbed a pizza and headed to the party.  We sat down and I told the waitress that we had outside pizza, explained why and that I’d called earlier to make sure it was ok.  She was great, “Of course.”

One and a half HOURS later, she comes back and says, “Sorry, but she’s really upset that you brought in pizza from somewhere else.  She said it’s too late this time but you can’t bring it in again.  So next time-” I cut her off there and said we wouldn’t be coming back again.  I was pissed.  How embarrassing to call us out in front of everyone we came with and make a kid feel even more different when it’s already over.  There’s not a lot we can do 90 minutes after the fact.  My mom asked if I wanted to explain to ‘her’ (who I assumed was the owner complaining) and I didn’t.  I’d already spoken to two other people there and didn’t want to deal.  With that another mom mentions that her son has celiac disease and she’d brought in a gluten-free crust from home and they put the toppings on and cooked it for her.  I was like, Dude, why didn’t they give me that option when I called?!?!  She told me she goes there all the time (most sports in our town have their parties there.  If you show up in uniform you get free pizza).  So clearly, if she’s there as much as she says she is, they should know the routine, right?!

As we leave and are paying the woman/owner comes up and says (YELLING), “What were you thinking bringing another restaurant’s pizza into my restaurant?”  I again explained celiac disease and that my son couldn’t eat their food.  I told her that I’d called ahead and that I checked with our waitress when we arrived. 

She told me that the other mother does it right having them make the food.  I told her it would’ve been nice for her employees to have suggested that option being that she’s a regular customer and I was calling asking what my son’s options were.  Her reply was that she’d be sure to put a sign on the front door so it doesn’t happen next time.  None of this sounded nice.  She was so beyond pissed and totally yelling at me in front of like 50 other customers.  I told her not to bother with the sign for me because we wouldn’t be back.  She goes, “Real nice, after I just fed your kid for free!”  MY response? “HA!!  YOU didn’t feed my kid, I had to bring his pizza from somewhere else!  By the way, thanks for making us feel so welcome in your fine establishment!”

Now my kids are wondering what the hell is going on.  I was so pissed.  We bought a pizza, a salad, drinks, the works for the rest of our family.  It wasn’t like we were mooching off this bitch!  (We also threw out our leftovers we were going to bring home at that point)  So I’m trying to explain to my kids that some people are assholes plain and simple.  Some people shouldn’t face their customers if they have no customer service skills.  If they’d told me up front about the option of bringing my own crust and having them safely make my son a pizza, we would’ve been customers for life.  I would’ve been thrilled knowing that three blocks from my house was a restaurant trying to be accommodating.

She should’ve reprimanded her employees for giving me the wrong information instead of yelling at me in front of an entire restaurant full of people.  Fuck her, she’s lucky I didn’t cram our leftover pizza in her face like the Three Stooges with a creme pie.  Although I was tempted, hence it hitting the trash can before I got the chance…  UGHHHH!

Did I mention…

I LOVE REDBRICK PIZZA!!!!!

The Look

My dad had a look when I was growing up.  I remember if you pissed him off real good his eyes used to look like he was going to turn into a werewolf and kill you.  It used to scare the shit out of me.  I was sure, growing up, that he might kill me one day.  When I got older I realized that my uncle (his brother) can do the same scary look with his eyes.  I’ve also seen it in my sister.  I think I might have it, too.  Sometimes I can look at my kids and don’t have to repremand them.

C doesn’t normally hide his diabetes.  He keeps it right out in the open and doesn’t seem bothered by anyone noticing.  However, he recently started playing on a basketball team and does not want to test or have his pump show in front of them.  I haven’t really addressed it, but have reminded him a few times that nobody will think twice about it.  In the meantime, we test before going in, remove the pump for the game (not to hide it but to prevent his going low. Normally along with -50% and hour before and after playing), and retest after the game.

Last night he was high before the game and I decided to correct even though he was about to play.  Normally I don’t since playing will drop him so much, but he’s been having some stubborn highs this last week.  Halfway through the game, I was feeling really nervous about where his number was at and brought his meter over to him on the bench.  There was another kid sitting next to him.  Coach (who is a 6th grade teacher and has had T1 students and is quite understanding) says, “Oh great, are you going to check him?”  I told him I was and his response was, “Ok, let’s take him over there to the bathrooms to do it.”  I looked at him and didn’t know what to say.  However, it was one of those moments where I think my eyes did the werewolf -I’m going to kill you- looks because he immediately changed his mind and said, “I mean, can he do it right here?”

“C tests wherever he happens to be.” was my response.  I went back to my seat and laughed at the idea that I just gave someone the look.  I felt a bit empowered by my family’s genetic gift.

BG was 247

It’s November.

Today is the beginning of Diabetes Awareness Month or National Diabetes Month or whatever it’s officially called.  I’ve been pumped up about it.  I’ve been looking forward to maybe doing like Nan did last year and posting a diabetes fact each day.

Last week some asshole just shattered my enthusiasm for facebook in a pretty big way.  He wrote some offensive things on my wall regarding diabetes.  Then he started emailing me.  I kept my cool and only called him a dirty word a couple of times.  I decided to keep him as my ‘friend’ on facebook and continue to expose him to my diabetes posts but disable him from being able to comment on any of my posts.  The worst part of it was the fact that I have so many friends on there with diabetes or with children with diabetes that I didn’t want getting offended from MY facebook.

Anyway, I thought it was settled and felt ok with my decision.  But today, every time I started to announce to my friends that it’s not only November, but DIABETES MONTH!!!! I had no motivation.  Lame since this guy is really what needs the awareness in his life and he’s ruined my will to push it in his face.  Opposite of how it should have worked.  I just felt like the only people who are going to even care are the people who are already posting it themselves.

Another thing getting me down?  I finally used the wordpress app on my iphone the other day.  I wrote about C’s trip to the eye doctor.  I had a cool picture to post.  I wrote way too much on that crappy keyboard.  And then… it disappeared.  It’s not on my phone, it didn’t post. It didn’t save even though I’d hit save a few times through it.  It didn’t help my ‘wanting to write’ motivation.

Restrictions

I hate celiac disease.  I try so hard to convince people that C can eat whatever he wants with diabetes.  Then I have to explain that he can’t actually have that but that it’s not because of diabetes.  I think people are lumping them together most of the time and think he’s got one issue.  I’m not one to get annoyed at “stupid questions” about either.  I love it.  Ask me! Ask me anything!  I WANT to tell you the reality.  And if I ask you something “stupid” about your issue that I’ve never dealt with I expect the same patience.  There’s no reason to get upset about someone asking how long he’ll have diabetes or if he can take something to counteract the gluten. 

Enter my sister and her family…  They refuse to get a clue.  Her son came over once  and tried to tease C with candy.  He was truly surprised to hear that C could eat it.  It infuriated me that he’s been taught NO compassion.  Here he thought C was never allowed to eat candy so he waved it in front of his face.  She has her children’s birthday party’s at our house most of the time because we have more room.  When I make their cakes, of course they’re going to be gluten-free.  They’re fine.  They’re good.  Maybe not the best cakes ever, maybe not the moistest, but they’re fine.  My sister’s comment, “It’s alright, but I can definitely taste the gluten stuff.”  Ummm, no you can’t idiot, it’s gluten-free.  sigh…

Today we went to her daughter’s 6th birthday party.  There was pizza and cake which he couldn’t have.  We brought our own gluten-free cupcake and made do.  At the end, she gave me two goodie bags for the boys, marked with their initials.  I peeked in C’s and was surprised my sister didn’t put any candy just stickers and stuff, she ALWAYS puts candy.  Then I checked E’s… sure enough, candy.  I was so pissed that for a year I’ve been trying to educate her and she hasn’t listened to anything.  I asked her if she had any extras and she said they were all at home.  She didn’t know what he could have, so she left it all out.  I get it.  I understand not knowing what to do, but really?  Give him a blank goodie bag when he’s got a brother with a bunch of candy?! 

I split them up so he’d be unaware.  It definitely would’ve bugged him, no lunch, no cake, no candy… sheesh!  Involve a kid!!

could be worse

Someone I work with was just asking me about C’s health issues.  I was explaining celiac disease and how it affects diabetes and how i believe that it was the untreated celiac that caused the diabetes and what a bummer that is.  He said something about how it’s nice that we have a diagnosis now and can treat it, but too bad it’s a bit extra work for me.  I said, Ya, it’s a lot more work and it’s never going to let up.  His response was, “It could be worse.”  This is such an interesting statement.  There’s nothing more true than it, but there’s not much that stings worse.
Obviously, any situation you’re in could always be worse, but the fact is, it could be better too.  Thank God my son didn’t get diagnosed with a disease that was going to take his life and there was nothing we could do about it.  But I don’t think someone can understand, without living it every day, that this is not an easy card to be dealt either.  Thinking about the decisions my son has to make every minute of every day forever is a little overwhelming.  The fact that my 10 year old has to look up every food on his iphone to check the company’s allergy statement to be sure it’s safe and then the nutritional facts to get a carb count just so he can have find out if he can have the snack his friends are already finishing is a little ridiculous.
Ya, things could always be worse, I’m totally aware of it.  I remind myself every day.  I’m thankful for research making these two diseases so manageable.  However, I don’t think people outside realize that if we let up on the managing for a minute, things could turn terribly wrong.
As he said this statement, my phone rang and it was C.  At school.  Calling to tell me he was at 54 and in his class.  He wasn’t sure if he should stay put or go to the health office.
He put his teacher on and I told her to keep him there, make sure he retests in 15 min after his carbs.  Told her that if he felt he needed more carbs before the 15 min. was up that it was fine, trust him.  I just got a call back.  15 carbs and 15 minutes later and his new number is 178.  Could be worse, but could definitely be better.