A family living well with type 1 diabetes.

Posts tagged ‘diabetes in school’

Crafty D-Crafting.

So I’ve been busy helping my girls create homemade Valentines to hand out in class next week. I blame Pinterest for this sudden blast of creative ambition. If you haven’t yet familiarized yourself with Pinterest, be forewarned, it is habit forming. As if any of us need yet another online time-suck! But the cool thing about it is you can get some really neat ideas for crafts and art projects (and a plethora of other topics).

One such project that just dazzled and amazed me was this one:

You take a picture of your child holding out his or her hand as if clutching a lolly-pop, then use some sort of photo editing software to add text and embellishments, print it off, cut slits above and below the fist and feed a lolly through! Is that not the coolest thing?!

So after I had my Valentine fun with this idea, I got to thinking — how could I make use of this idea in a D-awareness sort of way? It didn’t take long for me to come up with this:

 

I think these would be cool to make bunches of and hand out at school events during Diabetes Awareness Month in November or any time there is an opportunity to raise a little awareness. What a great way to educate people about how people with diabetes can have treats too and are not relegated to a sugar-free existence. In fact, this myth is a dangerous one that really needs to be dispelled. We know too well how important and, indeed, life-saving sugar can be to a person with type 1 diabetes.

This project is more simple than it appears. Go ahead and give it a try, whether it’s to create Valentines or awareness!

 

Letting Go

There are a few significant events in every parent’s journey that mark a time of pride and excitement; first words spoken, first steps, the first time you say goodbye to your child at the babysitter, preschool, kindergarten… These are events worth documenting, photographing and celebrating.

But some of these events are also pretty darn anxiety laden. It isn’t easy for parents — often (but not always) moms — to say goodbye to our babies and trust their care to someone else. But we must, and we do. Sometimes it doesn’t feel natural, but it’s a part of life, right? …to say goodbye and help our children make that slow journey toward ever increasing independence.

Jenna has begun her school journey. She is attending full time kindergarten and, in all honesty, she is absolutely loving it. She no longer has to feel left behind watching her big sister walk into the school every morning. She is a big kid now, in real school. She is ready.

Sure, she had some anxiety at first. She was shy, withdrawn and a little lost. But her teacher, Ms. C, handled it beautifully and in no time Jenna warmed up to her.

Of course, the big pink elephant standing right smack-dab in the middle of the room is…

DIABETES.

Without question Jenna’s diabetes has been a tricky one to juggle. There are a few factors that make it so:

  • Jenna is far from completely independent with her diabetes management. (Of course she is, she’s five.)
  • Jenna is often unaware of her lows until she is well below what constitutes a low.
  • Jenna is stoic. This scares the ever-loving stuffing out of me as she is not apt to speak up if she is having a problem, preferring to avoid the spotlight and be “just like all the other kids.”
  • No staff member at the school is legally allowed to administer either insulin OR glucagon to a child with type 1 diabetes in our province.
  • A single teacher in a busy kindergarten class of 20 young children, all equally deserving of attention, cannot possibly be expected to do her job AND watch a child with type 1 diabetes for the often subtle signs and symptoms of hypo or hyperglycemia, let alone react to a low or high in the appropriate way. (I have two children and trust me – this is no easy task at the best of times.)
  • Since no staff are able to give glucagon, it is absolutely vital that Jenna receive timely intervention in the event of a low to avoid a dire situation.

Given these obstacles, it was crucial that we obtain government funding for an additional support staff in the classroom to assist Jenna with her care.

The trouble was, we had to actually prove that she really does need this assistance.

Jenna’s pediatrician likely anticipated this because I received a letter from him this summer stating that her medical condition placed her in the special category that makes her eligible for this added support. That letter turned out to be the means to a fabulous end and the way it played out was beautiful poetry to this D-Mom who felt all kinds of panic wondering why I actually had to prove my daughter’s need for help to ensure her safety while in school. To me it was as clear as the nose on my face. But this is the system we have and this is the way things are done.

This summer I met twice with the public health nurse who gathered all the pertinent data regarding Jenna’s medical needs and her care. She drafted a care plan outlining, to the utmost specificity, how Jenna’s diabetes management is to be conducted in school: If A, then B. Then follow up with C fifteen minutes later. However, if D, then E…

It is clear, precise and to be followed to the nth.

This care plan was presented at a meeting we — members of the school staff, the public health nurse and I — had last week in preparation for Jenna’s school start this past Monday. This meeting was to provide diabetes training to the staff and give a chance for the concerns of everyone involved to be voiced. The vice principle was also present. She is the lady with pull. She, along with the letter from Jenna’s pediatrician, was key in achieving the ideal outcome.

When the meeting was winding down, I noticed her eyes were wide as she digested the full scope of what she had learned. She realized that this was a life and death situation which would require constant diligence and monitoring beyond what one teacher would be capable of. She promptly excused herself from the meeting stating she had some phone calls to make in her office, assuring us that she would be back.

Staff members who had been pulling for us since last spring when this whole process got started gave me subtle, reassuring pats on the back. They knew her and knew that this reaction bode well for us.

I whispered to Jenna’s teacher “What does this mean?”

“It’s a very good sign. She realizes now what we are dealing with. She can make this happen for us” she whispered back then gave me a wink.

It was all I could do to maintain my composure. All the anxiety and fears I had been living with regarding Jenna’s start in the public school system that dated all the way back to her diagnosis were daring to subside.

The vice principle returned not 15 minutes later and announced that Jenna would have an assistant assigned to her in the class room for four hours everyday.

And it was like  letting go of something I had been clutching with a death grip for three and a half years.

It was validation. They understood how precarious my child’s health is — the fine line we walk.

So now Jenna is attending classes everyday and looking every inch the big girl, school kid that she is in her new school clothes with her giant backpack on her back. I still go in to the school to give her boluses for her snack and her lunch — that won’t change until Jenna is old enough to do so on her own with supervision — and, until today, I had been spending my days in that little room off her class room to be available in case there were any questions. But my presence there has become less necessary as her worker, who is so awesome, has become more confident and capable. I must remain in town (we live rurally, almost a twenty minute drive from the school) to bolus and in case there is a problem — a stubborn high, a dislodged infusion site, etc. — but I am quickly phasing out my constant presence there.

And now it’s my turn to feel lost — proud and relieved, but lost, nonetheless. Suddenly I am struggling to fill some free time and it’s a foreign feeling. I am trusting others to ensure my child’s safety, as capable as they are. I won’t deny it, I’ve had some moments of anxiety sneak up and put me in a head-lock. But I’ll be okay. If there is one thing I am, it’s tough. That is undeniable. I’ve been able to wrestle free from the anxiety when it does ambush me. I just remember that there are good people at that school who really care about my daughter and her wellbeing. They want her to be safe too.

Another milestone, complicated by diabetes, has been reached. Now there’s just the dreaded teen years and college to worry about.

Just keep blogging, Sherry — just keep blogging…

It’s The Little Things…

Jenna has started full time kindergarten this week. Needless to say, life has been rather crazy and a little more stressed than usual for us.

I have been wanting to write about the whole process we have undergone, that started last June, to ensure Jenna is safe at school yet is offered as normal an experience as possible. This is no easy task and it requires the cooperation of everyone involved — from the public health nurse to the school board to the administrative staff to the teaching staff to the support staff to us – the parents.

It has been quite a journey and I am eager to share it.

And I will share it.

But today I am compelled to share something else — something that will give you some insight into just how wonderful Jenna’s kindergarten teacher is.

I have been spending a great deal of time in a small room off of the kindergarten class to be available to staff requiring my assistance with Jenna’s care while everyone gets used to the routine. But I feel strongly about being “not visible” because I want Jenna’s school experience to be as close to a typical experience as possible — hence the seclusion. I will be gradually tapering my “not visible” presence off as teachers and support staff become more confident. Until then, I am occupying this small, yet comfortable space during the day, nipping out for a half hour or so every day to get my Starbucks fix or run a quick errand.

Jenna’s teacher is amazing. She is one of those people born to teach young children. She has a gift. She is energetic, positive, kind, warm, caring and just plain wonderful. She has invited me to join the teachers in the staff room during breaks and has made a point of making me feel welcome to be present in the classroom whenever I want. It is I who feels strongly about not being too visible. She respects that.

Today when I slipped into the classroom, in super-stealth mode, to make my way to the little room I have been haunting lately — the room I am now blogging from on my laptop — I was surprised, delighted and touched to find this waiting for me on the table at which I sit:

I am enjoying the Egyptian Licorice tea as I write this. Yummy!

The note was accompanied by a jar of different herbal teas and a mug (and I just happen to be a tea enthusiast!) — a kind and thoughtful gesture to help me feel like a welcome part of the team here at Jenna’s school.

I am so grateful for the amazing support the entire school has extended to us as a family. This has been a wonderful experience.

And it’s going to be a great year.

:)

Blowing Off A Little Steam.

I am writing this while my two girls are taking part in their four hour afternoon of gymnastics camp. It is just one of twelve, four hour sessions I have booked for them this summer. It takes place at a large sports complex and I am in the tiny area where there is WiFi available. That means I cannot see Jenna right now. There is an observation area for the gym one story up and truth be told, when I’m not squeezing in 40 minutes of cardio in another part of the facility, or sitting here near the pool using WiFi, I am haunting that area like a bad smell, face pressed against the plexiglass (not really) watching for subtle signs – staring off into space, inability to participate, weepiness, pale complexion… all the stuff that would be misinterpreted as uncooperative behaviour or fatigue by someone not experienced in type 1 diabetes management.

Tree pose.

I’d love to tell you that the staff here at this facility were keen to learn about Jenna’s diabetes. I’d love to say that they were open to my brief instruction and have assured me through their eagerness to learn that they are quite capable of making sure my little girl will remain safe on their watch.

I can’t. Not entirely, anyway.

What I can tell you is that I have had to practice a good deal of patience and restraint in working with the staff at this gym. Between being patronized, ignored and treated like I’m nothing more than an over-protective, hovering parent, my experience with the staff here has been less than positive. But what I keep reminding myself of is that they just don’t know.

One woman in administration patted me patronizingly on the back telling me I would soon get used to it (whatever it is). I guess she figured I was having some newbie anxiety or something over leaving my child at a program. She then proceeded to tell me about her daughter who “…used to have type 1 diabetes but now she is grown so she has type 2”. I didn’t even ask for clarification as she was so full of confidence as she spoke down to me, like she knew more about this than I did.

And I think that’s even worse –when they think they know. I mean, everyone’s heard of diabetes. It’s that disease your aunt used to tell you you’d get if you didn’t lay off the candy! The one that meant you were doomed to a life time of injections, and absolutely no sugar lest you slip into a coma and…well…you know the rest.

My point is that this disease has a big scary question mark strapped to it. And whenever anything is that much of an enigma, people tend to fill in the blanks themselves, usually with a bunch of stereotypes, misinformation and blame. Often it is laced with little snippets of their own vague knowledge of diabetes, usually type 2, that has little, if nothing to do with type 1 diabetes.

What tends to compound this whole D-puzzle is the insulin pump and the fact that the approach to managing type 1 diabetes has changed significantly over the past decade or so. It is no longer common practice to restrict sugar. People with type 1 diabetes can eat anything they want. Anything. There are foods that are particularly challenging to cover with subcutaneous insulin injection or infusion, but it is doable. Furthermore, restricting a child’s diet causes them to feel deprived, left out and generally different from other kids and has proven to be more detrimental to that child’s psychosocial wellbeing than the physical stress of running high for a short period of time after an occasional pizza meal or ice-cream treat. Sadly, eating disorders are not at all uncommon among teens and adults with type 1 diabetes.

(FYI- I have moved up to the observation area and I am writing this while keeping one eye on Jenna. The 7.6 blood sugar and 1.7 units she had on board when I left her kept whispering in my ear and I just had to move my writing to where I could see her. So far so good. She appears fine. She just looked up at me, waved, blew a kiss and mouthed that she loves me.)

I think what I am trying to say is that the world can be a big scary place for people of all ages with type 1 diabetes. I have read countless accounts from adults with type 1 diabetes of lows they have had  leaving them barely able to hang on to get the help they needed to pull themselves away from the brink of disaster. These are people with many years of experience managing their diabetes. Responsible, educated, intelligent people!

It (shit) happens with this disease. Often.

So for anyone to minimize the fears and worries I, as a mother of a five year old child with type 1 diabetes, have with regards to her being out there in the world without me is to feed a growing anger I have. It is an anger that surges every time someone looks at me with judgement in their eyes, clearly pegging me as an over-protective, fussing mom. It is a frustration that grows with statements or questions like “It’s only diabetes!” or “be thankful it isn’t [insert the disease or syndrome of your choosing here]” or “You sure take your daughter’s diabetes seriously!” or “will she grow out of it?” or “did she drink a lot of juice as a baby?” or “is it the bad kind?” or “have you tried this diet?…or this tea?…or this voodoo cure?”

I guess I should have known this would happen as Jenna got older. I think on some level I did know. We live in a society that has some pretty strong opinions of parents that appear to be too involved in their children’s lives. People assume they know more about others than they actually do know. It is a society that feels children should be thrust out into the world via day care as early as one year old or sooner while moms and dads go off to work to earn a living. It is a a society that judges a mom harshly when she opts to stay home instead of continuing her career. It is a society that is critical of what it deems to be too much parental involvement in schools or extra-curriculars. So this society has trouble accepting a parent that hangs around in classrooms or at birthday parties or swim lessons or field trips or gymnastics camps to ensure their child with challenges like type 1 diabetes is safe.  They don’t understand the fine line we walk every hour of every day. They don’t get the precariousness of this damn disease.

But you know what? I don’t care. For the safety and wellbeing of my child, I can’t care.

So get used to it world. I and many of my D-Parent associates are and will continue to be involved. We make no apologies about our presence in places and situations that other parents, for whatever reason, opt out of being present. This is the hand our families have been dealt. This is our way of managing the challenges we face. It works for us. It is necessary. And if your child had such challenges and you knew what we know, you would likely be doing the same.

By the way, I just checked Jenna for her first snack. She was 3.6. That is officially low.

Like I said – shit happens.

When You Wish Upon A…Hairdryer?

Coincidences are a trip, aren’t they? Like when you think of someone you haven’t seen in forever and suddenly you hear from them? Most of us have had experiences like that and I seem to be having a surge in this phenomenon lately.

Recently, I wrote about a meeting I had with a JDRF rep who mentioned a fellow D-Mom that she wanted me to meet named Sarah. A couple of hours after leaving the meeting I met Sarah, quite by chance, in a children’s clothing store. That had me scratching my head and pondering the mysterious powers of the universe for days afterward.

Well, it’s happened again.

Just this morning I was drying my hair, lost in thought as I usually am during this daily post-shower ritual. I was thinking about Jenna starting full time kindergarten next fall. As you can imagine, this is something that has been on my mind a lot lately. I was mentally composing the brief speech that I plan to deliver to the staff prior to the start of the school year in, an effort to teach them what they will need to know to ensure Jenna’s safety. I arrived at the point where I would present the glucagon kit to them…and my mind came to a screeching halt.

This is about where I figure I will lose many of them. When I start explaining the process of reconstituting the glucagon powder in the vial with the saline in the syringe, then drawing up only half the normal adult dose and administering a lifesaving, intramuscular injection to my little girl should she become unconscious and unable to ingest carbohydrates by mouth, I imagine they’ll be making every effort to look confident on the outside while silently screaming on the inside. I get that. It’s not something I like to imagine having to do either. It’s bad enough that the nature of the situation requiring the administration of glucagon would be a stressful one, but then to expect a person to remember how to perform a multi-step, invasive procedure to literally save a child’s life – a procedure the person has likely never had the oportunity to practice, well, the task is incredibly daunting, to say the least.

Why can’t this be like using an EpiPen on a child having an anaphylactic reaction?! There must be a way!

With an EpiPen, all that is essentially required is to uncap the pen and press it against the victims upper, outer leg, holding it there long enough for the lifesaving epinephrine to be administered (about 10 seconds). It can’t get much simpler than that. The reason glucagon can’t be packaged the same way is because the glucagon isn’t stable when it is in liquid form. It must be mixed just prior to being administered. Therein lies the dilemma.

So I was sitting in the living room with my family this evening, one eye on the movie we were watching and another eye on my Twitter feed. I read a tweet from Amy who writes a fabulous blog called Diabetes Mine.  Amy has been attending the third annual Roche Diabetes Social Media Summit in San Diego for the past few days. Her tweet stated that while attending the summit this year, she “..got a demo of a new GlucaPen for easy emergency glucose delivery.” Included with her tweet is a link to a post she had written almost one year ago, which you can read here, describing the GlucoPen that is in the works that reduces the steps required to reconstitute and administer the life-saving glucagon!

This is so fantastic! It’s exactly what I was wishing for as I was drying my hair this morning! I’m not sure when this cool little device will be made available to the public, but it sounds pretty promising. Maybe soon I will be able to present teachers and school office staff with a much less intimidating, more user-friendly device to use in the event of a worst case scenario. It can’t come soon enough. And it’s rather interesting that just this morning I was daydreaming about this very thing.

I think tomorrow morning, while I dry my hair, I’ll utter a wish for a cure. It’s worth a try.

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