Butterflies

It’s that time of year again. The smell of autumn in the air & bushes heavy with blackberries. And butterflies. Lots & lots of butterflies. All sitting in the pit of my stomach, churning my insides over & over as we embrace the start of a new school year.

I hate it. The end of lovely, lazy summer days with my girls, replaced by the frantic pace of timetabled term life.

My desire to opt out of convention all together, embrace my inner hippy & home educate my daughters always reaches a crescendo at this point in the year.

Today this feeling has crashed over me like a tidal wave, divesting me of my usually cast iron grip on all the extras our family’s “back to school” routine entails.

It crept up on me as I waited at the pharmacy, clutching gallons of lucozade, waiting for the school’s supply of prescription items to be dispensed.

I felt that rush of resentment toward mine & my daughter’s peers who know nothing about the extra preparation that goes into our school year. They were all off enjoying their last day of freedom, not finalising care plans & hypo boxes & flash cards of “what to do….”. They don’t understand why I hold a metaphorical breath from the moment I entrust my child to the care of strangers in the morning, to the moment I catch sight of her holding court in a gaggle of girls & chatter, having managed to negotiate another day with adults who double check & question her every decision during that day, making her doubt her pretty flawless abilities.

This year, however, I have determined to ensure her teachers trust her judgement more. And make her doubt her’s less.

Maybe then, I can look forward to the start of a new academic year with excitement at all she will learn, and not fear it for all that could go wrong.

School life of a T1

There isn’t a stage in her education that Pumplette hasn’t had T1. From her earliest foray into education at the age of 2 & a 1/2, there have always needed to be plans that shape her care & reflect her needs at each age.

These plans should ideally be shaped with one soul purpose in mind. Namely an equitable educational experience for the child with T1 to that of their peers. Sounds simple, doesn’t it? Well educated teachers working in conjunction with the parents of the child who, along with the child or young person with T1, are the experts in that one particular diagnosis. I would not ever presume that I would know how to take charge of another T1 child who wasn’t resident in our house. True, I am well versed in speaking the same language as these other children & their parents, but I don’t not know their individual ISF (insulin sensitivity factor). I don’t know how different activities will impact upon their bg management. So I would ask the questions, make note of the responses, and above all else, make a note of the parent’s number & how accomplished that child is & how much support or supervision he or she would need whilst in my charge.

But here’s the rub. I’ve found, in the course of Pumplette’s educational road, sometimes people not well versed with this most fickle of mistresses, will seek to presume they know much of how to treat it, from the merit of having another child with the same condition in their care.

This is not so!!

Granted, there are elements of similarity in the care required, but that does not make for an armchair expert. Or worse still, an interactive whiteboard expert!!

Our CWD have, until now, been at the mercy of educators who could dictate whether or not that child could participate in a residential trip. Where is the equality in educational experience in that scenario?

Mercifully, thanks to a change in the law in the UK, this should now all be a thing of the past. Diabetes UK “Make the Grade” campaign has produced excellent information for parents & teachers alike, so there can be no ambiguity when it comes to the expectations & levels of care a child with T1 should experience when they are away from home & in the charge of teachers. The packs set out clearly the responsibilities of all, so this September, make sure you’ve familiarised yourself with theses packs & used the care plan template, so that no child will ever again be excluded from any activity because they happen to have T1.

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Communication and understanding……..

If you have ever had the privilege of teaching a child to read, you will truly understand the meaning of the word frustration. There will be times when you’re tempted to shelve the entire endeavour and opt for the seemingly more achievable task of nailing jelly to a wall. Or herding cats. But if you persevere, in front of your eyes, like a butterfly from a chrysalis, emerges a literate being. One who is able to decipher the written word & instructions that surround us in our daily lives. If you’ve ever tried to teach more than one child to read, you will know that there isn’t one, single, fool proof way to teach another being to read. Annoyingly, the teaching will need to be altered & nuanced for the individual child. You’ll be required to identify this & adapt accordingly. This is not always easy or straightforward. The results may not always be consistent. Not every child will become an avid reader. But every child, in order to fulfil their own potential in their world, will need to read.
What does this have to do with T1 I hear you ask? Well for me, helping my daughter to understand & manage her T1 is a lot like teaching her to read. Initially I needed to do everything for her but would explain to her infant self what Mama was doing & why. Akin to reading stories to a small, illiterate child. You hope to engage & encourage them in their independent desire to discover how to read for themselves. As she grew & gained more dexterity she mastered the art of bg checks in her second year. She also learned how to convey when she was hypo by articulating it as feeling wobbly. The Dr Seuss of the reading world. As she grew she learned how to operate her pump her understanding of why she needed insulin began to increase – food would be greeted with an “Ohhhh. Yummy.” & then a “How much insulin do I need for this?” This was the start of her “reading” longer books, with stories & plots to follow. She’s now exploring the library of her diabetes & trying out new things for herself. Her very own journey of discovery through a vast array of constantly changing literature – advise that was once held as gospel & the only way to manage T1 is slowly altering. The dictates from some HCPs are gradually becoming fewer as a new generation of professionals take up senior posts with their own appreciation of the complex mistress T1 can be. No one answer right for all. The agenda & assistance offered needs to be tailored to each individual patient. Just as it was when we learned to read. For the most successful readers amongst us were lucky enough to have a teacher who recognised our needs & reacted to them.
I have blogged in the past about the importance of ensuring a child is respected and considered in every consultation, regardless of age or level of understanding.  This is about the child.  Not the consultant.  Or the specialist nurse.  Or the dietician. And most importantly, not all about the parent.  As the parent in that consultation it is my responsibility to ensure that my child’s voice is heard and her needs are addressed.  If I have concerns or need support then as the adult, I have the opportunity to contact the DSN by phone or email at another time when she is not present.  In clinic, it is paramount that her issues are addressed and it is a collective responsibility of all the adults present to facilitate this and not conduct a consultation over her head. This is not an easy thing to do. And I will confess to not always managing to achieve these standards.  But, I do have an aim and most of the time it is reached. 

I am aware that this may not be a popular view.  All too often, and for very understandable reasons, the line between patient and parent becomes blurred as the exhausted, sleep deprived parent seeks solutions to alleviate some of their onerous burden.  Equally, I know of consultants who will address the parents/carers in the main, whilst the reason for the meeting sits quietly amidst all the noise, totally lost and forgotten in the malai.
In truth, the responsibility of parents & those charged with caring for children & young people with T1 is to ensure they are fully literate when they embark on their independent journeys. Just as I was the only voice for my daughter before she learned to speak, I now act as amplifier. As she becomes more & more articulate she needs less amplification – she’s become more fluent in her reading. I no longer need to sit at her side to hear her read aloud. I now support her in her independent choices & provide guidance instead for questions posed, whilst hopefully equipping her with the skills to go out & seek the answers she desires.
For once literate, there is nothing that cannot be discovered.

Blessing or a curse…..? HbA1c results

Pumplette has just had her 10th annual review at the tender age of 11. She was thrilled with the news she wouldn’t have to pee in a pot this time as the clinic are now only screening kidneys from the age of 12, so she has but a year’s reprieve! Blood pressure check was a pain as it required stillness for all of a minute & consequently it was 4th time lucky when we finally got a plausible result from the machine!! Phlebotomists were greeted like old friends & she contentedly chatted away whilst the blood ninja drained an armful!!

Then came the chat with her consultant. Pumplette filled her in on all her news & there may even have been talk of T1 too, but that was fleeting & quickly dismissed by the 11yr old who had her own ideas about exactly which direction this discussion should take.

We left the clinic with Pumplette in good spirits & returned home to get on with the end of the school year, barely registering that we’d need to contact clinic a week later to collect the HbA1c result.

Fast forward two weeks & I realised we hadn’t contacted the clinic to get the results. Her consultant had made a big deal out of the fact that her last HbA1c had been in the “non-diabetic” range – showing Pumplette the nice black number on a computer chart after a decade of red recordings. In our clinic, non diabetic range is class as below 6.0 in old money & her last result had been 5.9 or 41 for the bilingual amongst you! I felt rather uneasy about the fuss being made – had she worked hard to achieve these results? Yes. Had it been easier than the previous decade to obtain these results? No! And the decade of data in red was hardly shabby………

Results of a tiny, pumping toddler

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theunderstudypancreas.files.wordpress.com/2014/07/20140729-123106-45066407.jpg”>20140729-123106-45066407.jpgResults of a small, speechless baby

So it was with mixed emotions I waited for the DSN to access the relevant records & report back that, last quarter was once again, 5.9 or 41.

Now this is a fabulous thing, right? No debilitating hypos, no massive fluctuations in bg levels, and above all a child who is clearly showing a great ability to handle pressures of being 11 & managing T1 using the additional kit we fund to help her. Namely her skilful interpretation of her cgm & it’s data. I know of T1s & parents of CWDs who’d crawl over broken glass for results like this. And I’m unbelievably happy & proud of the lass. But my fear is the extra pressure this may now impose upon her from the subliminal messages she receives from the black vs red numbers at clinic, to the jubilant dancing & congratulations that occur when she reports her result to family & friends.

Am I being a party pooper? Probably. Should I let her enjoy her triumphant moments? Definitely. But when telling her how amazing she is & how well she has done, I was also at pains to point out how tricky this all is. That it won’t be realistic to believe she can always hold steady or reduce her results. Because just as we do our upmost to avoid crashing hypos, I’d like to think I can help support & shape a child who’s savvy enough to understand what a fickle mistress T1 can be & that the triumphs are spectacular but the disappointments needn’t derail her gig or send her into cataclysms of despair! They’ll be treated with the contempt they deserve & the ability to see the bigger picture for what it is – a full, happy life being lived whilst placating the uninvited guest at all times.

And so whatever the result, red or black, we will celebrate the fact that she doesn’t allow anything to hold her back. For that is her greatest achievement of all!!!

#iCan

Diabetes week always heralds the countdown to Pumplette’s birthday. This week, as we dash headlong toward her 11th birthday, Diabetes UK’s #iCan campaign has been very much at the forefront of my mind.

Reflecting on all her achievements since diagnosis I am most proud of Pumplette’s #iCan attitude toward life.

In the decade and a bit since diagnosis, I cannot name a single challenge from which she has shied away from. Every opportunity afforded her she has grabbed with both hands & run with. Spectacularly!

Be it skiing in America, age 4, hurtling down the slopes & discovering that straight, parallel skis will travel MUCH faster, to cycling down volcanoes in Bali age 6 & discovering just how much speed one can harness from a mixture of propulsion & gravity! Graceful ballerina who is successfully making every exam grade as she grows, and qualified rookie lifeguard, my little girl who could out swim most adults now! Ferocious indoor rock climber who can scamper up the toughest of routes without so much as a downward glance! And of course, indoor skydiver extraordinaire!

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At diagnosis, when she was so very poorly, I never allowed myself to imagine the active, no holes barred life she now commands.

To see the confident, articulate advocate & champion she has become is utterly humbling. Together with her sisters she has demonstrated an #iCan attitude that inspires all those lucky enough to encounter her.

I now must adopt a similar #iCan attitude as the young lady in question has requested a Minion riding a unicorn fashioned from cake for her 11th birthday celebration….

Diabetes snapshots

For today’s blog I’m shamelessly reposting the celebration of an entire decade of keeping our little lady & T1 with us.

I feel it sums up the lass perfectly!

http://www.kizoa.com/slideshow/d8127213kP176628012o2/one-whole-decade

Diabetes life hacks

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Friday’s subject – what life hacks do you have for coping with T1?

This will be predominantly my input today. Pumplette is very adept at improvisation & I’m sure in another few years this would be the best post to read of hers!

However, for now, her best life hacks usually involve getting her own way. Be it a “defiant bolus” to get that packet of sweets or extra slice of pudding she wanted, to the “convenient hypo” especially useful for dodging pesky piano practise & history homework.

So what life hacks could I possibly offer? Well, there’s the, now latent, talent I had for checking a baby’s bgs from her heel whilst breast feeding her. You never know the meaning of dexterity until you’ve mastered that particular skill!

I have continued, to this day, to still use Pumplette’s heel for bg checks at night. It’s the least intrusive way I’ve found & ensures she sleeps through the whole process. Especially as very early on, she learned to sleep on her hands, hiding her fingers from nocturnal lancets.

The best waterproof pump bag we found was a croc-o-dial. The makers of those infamous crocs produce a mobile phone pouch, perfect in size for an Animas pump. This means she can swim to her hearts content without the pump being clipped to her swimmers or shoved inside!

Crisps!
You may wonder how a bag of crisps could possibly be considered a life hack, but please, bear with me!
As Pumplette has explained in previous posts, the editor can be a bit stingy on the treat front. Consequently crisps & chocolate aren’t part of her & her sisters’ everyday diet but do make an odd cameo appearance from time to time. This is particularly handy when it comes to treats. At every annual review clinic when she sees the phlebotomists, Pumplette marches into the room armed with a bag of crisps & a rolled up sleeve. I started this tradition when she was 5 & had to have her first “big” blood test. There was no way I was going to let her dread these, so instead I resorted to that tried & tested parental technique – bribery. The small 5yo had never before been allowed an entire packet of crisps to herself, and so the full on novelty of the event made the blood test fade into the background as she beamed with delight & munched her way through her very first bag of crisps! To this day she is still the only child I know of who looks forward to this particular aspect of annual review! She’s also been used as an example to encourage the less enthusiastic visitor to the phlebotomist, happily chatting the reluctant participant through the process whilst the nurses wait for their cue!!

This leads nicely onto our last life hack & by far the most important which has already been mentioned in another parent’s blog today.
Clinic day. Instinctively to me I felt these should be days she looked forward to. Taking a whole day off school, ensuring we choose a fabulous place to lunch, indulging in some retail therapy & over elevenses discuss what matters, if any, she’d like to pick through with her team. I see this as the single most important thing I can do for her & her future with T1. It’s my responsibility to ensure she realises she’s in charge of these matters. This consultation is for her benefit. Not the hcps. I will not allow them to become consults where she’s berated for perceived misdemeanours. She must take the lead & set her agenda. And know that that is utterly the right thing to do, as even at 10, she knows far more about HER T1 than any of her hcps do.
Don’t get me wrong, this isn’t a knock at her fabulous team. They are superb at responding in kind to her agenda setting. Merely I’m trying to future proof the Pumplette so she’ll never accept anything other than support & understanding from any team caring for her.

But it starts at home. As her parents we must ensure she’s confident to do this. And so far, it seems to be working. In fact, next clinic, her annual review, she’ll be supporting a younger friend who’s also got her first annual review that day. We’ve already asked her to join us for lunch. And I think we may already have another convert to our regime!!

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Keeping the positive mental attitude rolling

Once again, this was an eye opening exercise as the editor was made privy to the inner workings of the young Pumplette’s mind…..

These were just some examples of the positive side of having T1D which have been shared with the editor. And yes. The editor has made a note of these…

“One of the very best things is you get to eat sweets in class. My friends get so jealous & I love it!
I have also discovered the merits of a convenient hypo to avoid things I don’t want to do. Maths lesson boring? No problem. A nicely timed hypo will soon see me running free to the medical room.
It can also be the
Best. Ever. Homework. Excuse.
#diabetesatemyhomework

I have also made loads of awesome friends & met some amazing people. Some have known me since I was a baby & others I’ve gathered along the way. I love not having to explain to them what I’m feeling. They just know.

One thing I’m really, really proud of is being asked to be a delegate for both of the JDRF Type 1 parliament events. It’s helped me become much more confident when meeting new people & it’s enabled me to get to know my MP very well. She’s now looking into helping more adults access pump funding because of our meetings & she also wants to look at cgm funding for children & adults alike too.

Then there is also my role as an Animas hero. I feel very lucky to have been asked & I’m looking forward to working with the other heroes & helping all people in the uk with T1.”

As her mother, I’m constantly in awe of how Pumplette conducts herself through the day to day realities of life with T1, finds lots of positives & enjoys being able to help others especially. She is, in my exceedingly biased opinion, blossoming into a remarkable young lady who is the most fierce & loyal friend & protecter.

Ultimately it’s these characteristics that ensure she keeps it positive & remembers the sun does shine during those rainy times.

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What brings me down…..

Discussing this particular topic with Pumplette was always going to offer me a fascinating insight into her feelings towards T1 at this moment in time. I was a little trepidatious. What if I didn’t understand the answers she gave? Or if I discovered some deep seated angst of which she had spoken nought to me? Is she getting the right support & opportunities to express how she feels & not keep things bottled up?

Ultimately, those worries are mine. Not to be transferred to her. I must let her have the opportunity to be & feel how she wants to without the burden of my own emotional angst & inability to protect her from all she must learn to do.

And so we come to the star of the show. When asked what brings her down about T1, these were her musings.

“I find it really annoying when everyone keeps saying:
‘You can’t have diabetes, you’re thin’.
‘You mustn’t share those with her, you’ll catch diabetes.’
Another thing that’s almost as annoying as that stupid piano practise Mummy makes me do is other people telling me what I can and can’t eat. I’m big enough now to know that you mustn’t eat dog poo or worms. And I’m actually quite fond of all sorts of food. I don’t judge your plate, unless of course you’re enormous & have a plate piled high with doughnuts. Then I might raise an eyebrow.
But on the whole, I know I can eat what I like. Although I’m looking at you now Mummy. You make me eat way too many healthy things!
I really hate having to continually explain what diabetes is to other people who don’t know or understand. I don’t mind the first time, usually, but it’s when I tell them & then they forget straight away.
That’s when I’d like to kick them on the shin. But again, Mummy says no…..!”

So there you have the beautiful musings of a 10yo. All the things that get her down are external. We can deal with that. One by one.
But not by shin kicking. We have standards to maintain!

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Poetry Corner

Our second post this week & I’m handing over the entire brief to the 10yo for this one! I’ve never purported to posses the remotest talent for rhyme, and judging by the Pumplette’s offering, she may have taken after the editor!!

My Diabetes
My diabetes is sooo stoopid,
Stupidy, stupidy, stew!
I laugh at diabetes
Because it is so funny.
Lol, lol, lol, lol, lol.
My diabetes is so pooey,
Poo, poo, poo, poo, poo, poo,
POOEY!!

The editor would like to point out that the author of the poem may have still been a little “waffy” (technical term there!) after a hypo when she composed this little ditty!

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