My Baby’s Growing Up!! Woohoo!

For the last two weeks, C’s been staying home alone while I go to work.  Believe me, this has been pretty scary for me, but it’s working.  Not only that, but it’s working better than him coming in to work with me.

When he’s at work, he sits.  All. Day. Long. in my office on a computer or reading.  And he’s snacking out of boredom. All. Day. Long.  His blood sugars are letting me know loud and clear that he should have more activity in his life.  His mood is telling me that he needs more stimulation than my small office (and Netflix) can offer.

I have alarms set, every two hours, on his phone to remind him to test and call me.  He’s been great.  He has strict orders to eat real-live meals and not snack on junk food all day.

Today I realized how independent he is and how proud I am of him.  I signed him up for a class at the community college for kids going into 7th and 8th grade.  It’s only for 4 day, 3 hours a day.  He started today.  I walked up to the teacher and said, “Hi,  I just wanted to let you know that my son, C, has type 1 diabetes.  You’ll notice him testing his blood sugar in class.  He also has water to drink and candy he may need to eat, would you like him to move somewhere else, away from the computer if he needs to eat or drink?”  He said, “That’ll be fine, did he bring me some candy, too?”  we laughed and I left.  I realized how much easier it was this year than the other times I’ve left him somewhere new.  The difference is the confidence I have in him.

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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]

Back To School

This morning we met with our school district nurse, the health tech and the psychologist at C’s new school.  I must say that immediately it was a refreshing change from last year’s staff.

I showed up with seven plastic boxes of glucose tabs, juice boxes, test strips, etc.  Everything he ‘might need’ while he’s at school.  One big box to keep in the office with EVERYTHING  in it, a smaller one to keep in his PE locker with lots of juice boxes and candies and 5 smaller ones to keep in each classroom with juice/sugar.

I expected the office staff to roll their eyes at me.  I was sure they’d try to discourage me from delivering these boxes to the classrooms.  I was so wrong.  They were thrilled.  They called me the poster child of what a parent of diabetes  should be.  They praised my organization, they said they were so happy to have an accessible parent.  I did warn them that it might look nice now, but if I start to bother them, they’d better let me know…

After last year’s nonsense and the school he went to not ever taking diabetes, or celiac for that matter, seriously it was comforting to hear a group of people being appreciative of the efforts.  They looked in his file for his 504 Plan from last year.  They agreed that it was a joke.  It barely mentioned diabetes and never mentioned his celiac.  It was one side of a page.  I showed them the six page version that I recently updated and they said it looked great.  We’ll have our formal review in a few weeks.  In the meantime, they made copies of it for each of C’s teachers.

We got his schedule today instead of when school starts tomorrow and got to meet each teacher.  I introduced us, let them know about his diabetes, handed them their boxes of sugar and asked them where they’d be keeping it.

It was a good experience.  At this point, I’m definitely more concerned about how he’ll handle a school of 1000 students, 6 classes and the workload more than I’m concerned about his diabetes.   Which is exactly how it should be.

homework? what’s that?

Every time I feel like I have things under control, I realize I’m failing. The last week has been great. C’s numbers have been good, he hasn’t felt sick, I’ve been cooking good dinners, been trying to keep up with exercising the dogs, I wake up to check his blood 2-3 times per night, more when his numbers are funny.
I go to work in the morning and I’ve been staying all day. I’ve been exhausted. I come home and I need to take a nap most days. Or at least do nothing and let my brain shut off for a while.
School’s doing state testing this week and next. I’ve been busting my ass to make sure from like 3:00pm on we’re as absolutely careful as possible about what and when C eats so he can keep in-range numbers, get to sleep at a decent hour, get up ready to eat breakfast and get to school on time. We’ve done it both days so far. By the way, I’m trying to be a mom to my other son at the same time as all of this.
Sooo, I pick C up from school today and he tells me that his teacher was really mad today and is going to email me. Apparently C didn’t do his book report that was due today. I wish he did. I wish I’d helped him. To be honest, it had barely crossed my mind. It was on the very bottom of my priority pile. So here I am, feeling like I’m letting him slip school and its importance and frankly, I don’t care. How can I right now? I’m not sure the teacher understands that I’m at the end of my rope here. Some days I’m not sure how I’m going to make it to the next day. I wonder how I’ll keep C healthy. I wonder how I’ll make sure E gets enough of my time. I’ll wonder how I’m supposed to keep my job. I wonder how I’ll make the mortgage this month. I’ll wonder if C will be ok if I accidentally sleep through my 3am alarm and don’t test him. I don’t sleep just in case I won’t wake up from the alarm. And with all of this bullshit, I’m supposed to remember that he needs to get his book report done. I don’t know how other parents are doing it. I have no idea how I’ve made it and stayed fairly sane this long. I have no idea how I’m supposed to keep it up.
I’m not looking forward to getting this email today. I’m feeling like I’m too sleep-deprived to answer it properly.

lessons taught… by sleepless me

I’m averaging 3-4 phone calls from C a day from school telling me every reason under the sun why he’s not feeling well and needs to come home. I work, mind you.  And my work gave me more hours back two weeks ago. So far I have not been able to work these extra hours due to my children’s Dr.’s appts, sicknesses, Spring Break and crazy phone calls from the Health Office at school.  It’s getting old.  These are the times I wish we were a two-parent household so that somebody else could deal with at least half of the shenanigans.
This morning I heard, “Mom, I don’t feel good.”
My response… “Me either.  Just like you, I feel like crap every single morning. But every morning I get up, get dressed, go to work and get on with my day even though I don’t want to.  You feel like this every day, you don’t have to tell me anymore. You don’t even have to call me from school anymore to tell me.  When I’m at work, I know that you likely are feeling like crap at school.  If you absolutely need me, call.  Otherwise, I’m out of ideas for you.”
And Mom of the Year goes to….

How Do You Deal With This?! and rambling

C called me from school this morning.  He felt low in class and walked up to the health office (all the way across campus).  He tested at 59.  The health tech allowed him to call me before taking his carbs.  I told him to have 6 glucose tabs (24 carbs).  Ya, it might’ve sounded like overkill, but last night he hit 55 and it took 45 carbs to get him to 112.  He woke up around 120, so I wanted to play it safe.  Since he’s on his own at school, sometimes I need him to overcompensate for a low to make sure he’s in the clear.
Anyway, to make a long story short, he calls back 15 min later to report a retest result of 214.

Ok, I decided to come back and update the whole story.  I’m so upset with the school/nurse/no-help situation that C’s in every day.  C has his normal classroom with a box full of juice boxes and glucose tabs, a teacher that he’s comfortable with and who I’ve talked to extensively about what C needs and I expect.  He leaves the class and goes next door for math.  Yesterday during math, he tested and was at 59.  He had no glucose tabs or juice in the class with him.  He told the teacher that he was low and needed to go to the health office for carbs.  And he sent him.  C’s class is in the last row at his school and the health office is in the first.  It is clear across campus.  And he went with a 59 blood sugar reading ALONE.
The first thing I think of is that he was obviously in panic mode and not thinking clearly or he would’ve realized he could go to his other class, next door, and get juice.  The next thing that scares me is that it is written in his 504 Plan that he cannot go to the health office alone with a low blood sugar.  Ever.  If there is nobody available, he must stay put and have candy, juice, soda, whatever’s available in the teacher’s presence.  His normal teacher knows this, but apparently, his math teacher doesn’t and C finds it embarassing to bring someone with him.  His regular teacher will just choose someone for him so he’s not embarassed.
So, he got the the office and called me FIRST.  Then, i told him to take the carbs as I said before.  After the last phone call above, I got another call about 30 min later which I missed.  I called the school back right away and the health tech told me that his BG was now 340 and he was in the bathroom testing for ketones.  I assured her that he wouldn’t have developed ketones that quickly and that she needed to tell him that lunch was in 20 minutes and he could correct at that point.  Five minutes later he calls to tell me the ketones came back moderate.  Ugh!  Try convincing this kid that urine ketones are old and probably from the day before and not to worry!  His response was, “Well I AM worried.”  I know from prior experience that this is where his BG keeps skyrocketing due to stress.  I gave up and headed to the school to calm him down.  On my way he calls again to tell me he’s out of test strips.
When I got there I spoke to the health tech.  She told me that he told her he was out of test strips and she sounded (in her tone) like she thought that the last (highest) BG he reported might’ve been made up.  I later checked his meter and it was there…
I felt like he was in a bad situation and decided to take him home.  While I waited for him to go back to class for his backpack, I saw the actual school NURSE walk by (she’s there an hour a week).  When C came back I asked if he’d seen her and he said no.  He sat in the health office for 2 1/2 hours with health issues and she never even came in?  What the hell is she there for?  To sign papers once a week for legalities?  Great.  I told him that I didn’t feel that the adults there were making good choices today and he told me that they don’t do anything.  He does everything himself.
I hate this!!

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.