Healthy Eating?

Today K and A's school included in their weekly "newspaper" an editorial on "Healthy Eating", asking parents to support the school's two week drive to improve on an already ongoing campaign.

NHS "Health Eating" Campaign photo

But just what IS Healthy Eating? 

The school in question has twice termly cake sales and hands out sweets in "birthday assembly", which hardly fits the "Healthy Eating" criteria that the school is so keen to promote?

Resilience

Resilience. Not a word I use very much to be honest. And one that was oh-so-painfully overused at H's previous school by the Headteacher who had co-authored a book on "Building Learning Power". Don't get me wrong, there are some inspirational ideas and a lot of good practice in that book, but the nomenclature grated ever.so.slightly. For example focussing on "Brave Spellers" was a useful means of encouraging emergent independent writing but even the children felt it was slightly overdone at times.  But I digress.

Today I am a Resilient Learner however. Today I binned Hope and Trust in a positive move, but somehow "Goodbye Hope and Trust" didn't strike me as a particularly positive title to a Blog post!

Normal in Our House

Renata over at Just Bring the Chocolate has set a little blogging challenge – to define ‘Normal’ family life in our place.

"Anyone who says that their family is normal is lying… or in denial… or just mad. There is no such thing as the normal family, just varying degrees of weirdness. Just like the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day, after a while, we don’t even see our own idiosyncrasies. Parents of special needs children, arguably, embrace this weirdness to a more impressive level than many other families, and, should you come across us, you shouldn’t be surprised if some of it leaks out into everyday life."

Interesting challenge. Some days it would seem there is not much mundane, predictable and "normal" to be had around here. Having spent 4 of the past 7 days in 2 different hospitals, with 2 of the remaining 3 having outpatient appointments, having the cat "admitted" at the Vet's for neurotic senile cat disease doing a good impression of being at Death's Door , and trying to explain to school that gluten as well as dairy, soya and wheat needs to be excluded from K's diet (I provide the lunch but they are fantastic about catering for them in cooking sessions, snack etc) I'm not sure I would know what "normal" looked like if it came up and bit me. But that's the point of this challenge, to show how the seemingly bizarre, unlikely and even impossible becomes the norm for many families with children with additional needs.

Waking at the crack of dawn has always been the norm in our family. Although that should really be the "Shout of Dawn", or "Scream of Dawn". For years our mornings have started like this or this although the screaming and shouting has improved in recent months. H is oh-so-gradually getting the hang of school mornings, and who knows, by the time he leaves Primary School we might manage to leave the house without me feeling the need for valium, a stiff drink and a strong coffee. Mornings are fraught, hectic and noisy, and require careful planning and preparation the night before to avoid resembling a war zone. That's fine when I am on form the night before, but if I am feeling the effects of 2-3 hours sleep in total the previous night the temptation to throw caution to the wind and "wing it" the next day is very seductive. I did that once. Just the once. Won't be doing it EVER again lol...

With two children with autoimmune inflammatory bowel disease (EGID see here) , one with ASD, ADHD, and a whole host of other allegedly identified idiosyncrasies, let alone a teenager in the midst of hormone fluctuations there is considerable potential for trouble. (And that's assuming the cat behaves....) Pumps alarming, feeding tubes needing flushing, everyone's medication laying out/preparing for taking out, emergency kits checked and rechecked, physio done I could all too easily post a picture of the first thing which springs to mind to illustrate our concept of "normal".

A 10ml enteral syringe.

We go through loads of these, for medication and tube feeding. They feature in our "normal" family life. And yet I cannot think of anything less appropriate to illustrate what is "normal" for our family. Yes, our lives do revolve around meeting the additional needs of three of us, but that IS mostly the mundane, predictable and almost invisible much of the time. 

Normal life here is actually making a joke out of almost everything, finding the humour in the most unlikely situations, creating "Thompsonisms" that would never feature in any accepted dictionary but which for us are at the centre of family life. I am blessed with a family with a fabulous sense of humour. (That's pretty potent multiplied by a factor of 6. ) I have my husband to thank for a lot of it, he can singlehandedly reduce A to a giggling, incapable wreck only minutes after starting to cry in pain. He can see the fun in any situation, although I doubt his version of the Bristol Stool Chart will be adopted any time soon!

"Normal" for us is a warped, humorous and not-a-little cynical view of the world and our family's place within it. It's about making each other laugh and see the flip side, it's the glue which binds us together. And should any one of us be feeling low, should the mundane and monotony of our "special" version of normal be too overwhelming, you can be sure there are several at hand to crack a joke and put everything in perspective. We're an IT savvy, gadget loving, future embracing, don't let it get you down (or offload it and move on) kind of family. Feelings matter, but we know when humour can save the day. 

And you know what? That's my kind of normal :)

Wow. Six years.

This time six years ago I was deep in the throes of twin labour. If you think the "twin" bit was tough, think again. That was perhaps the easiest part of the whole "twin experience" to date. In actual fact it turned out to be the most straightforward (with the usual caveats and exclusions) of all my deliveries and our beautiful babies arrived at 3.20am and 3.30am. Text book.

But at that point someone seems to have mislaid the manual, or at least the bulk of it which contained the information and reassurance regarding feeding, weight gain and development. For six months R and I survived on snatches of sleep, constantly dealing with crying babies and incessant vomiting. At three weeks old we had the first of (oh so) many hospital appointments, and such was my exhaustion I arrived in the hospital car park with the new buggy - having failed to cut off the tags to enable the damn thing to actually OPEN properly! Never before had I experienced that all encompassing, inexplicably life-sapping total exhaustion, and I hope I never, ever will again. The concept of a "full nights' sleep" is still a dream, existing only in a parallel universe somewhere across the Galaxy, but at least now it's (usually) enough. Between feed pumps alarming and small people reporting they are uncomfortable/awake/insert any excuse you can come up with (they certainly do!) I am usually up 2-3 times a night, but that is so far removed from those early days.

My photo stream is testimony to a considerable amount of fun and adventure over the past 6 years, with special memories by the score as they grew older. Moving to somewhere without a loft was tough - I struggled to hang on to all my treasures from their early days - and their brothers' too - with so little storage space!

It's been a bumpy ride and we've pretty much written our own twin handbook on the way, which is probably why tomorrow feels like such an incredible milestone. It's taken this long to even start to understand the fundamental difficulties the twins have always had with feeding and digestion, why they suffer so much more than their siblings or the rest of us, and why our family is so absurdly divergent from the text book we all subscribe to.

But that said, on the outside, when feeling well and medicated appropriately, they are the bounciest (that should probably read BOUNCIEST) loudest (definitely LOUDEST, even accounting for hearing loss in one and over compensation in the other) almost-six-year-olds around. The best things come in small packages they say, and when I look at my two youngest I fill with pride, in total agreement. They face everything life throws at them head on, and refuse to let anything (or anyone, which can be rather tiresome at times) get in the way of their chosen path.

It's scary how fast time flies, but so exciting sharing the journey.

Happy 6th Birthday Kitty and Archie, my Mini-Me and Monkey :)

Just call me Mrs Skittle.

Or Mrs Wobbly Woman. Either requires a certain familiarity with Noddy  although a passing acquaintance with the song "I get Knocked down, but I get up again" would suffice.

Right now, I feel like I have been hit by the proverbial bus, after two good shots at knocking me off my feet yesterday once again coupled with my body's masochistic desire to make things harder by switching off the sleep function at the worst possible moment. Two hours sleep is seriously not enough when you are pushing 40, have three out of four children who didn't read the manual and take it in turns to tag team me each night.

I've no idea why insomnia strikes when I least need it, but it does force me to take stock and recover my bounce. Life on our family roller coaster is never dull but any dip is followed sometime soon by a challenging climb with breathtaking views from the top. I am telling myself this right now, as I contemplate the challenges presented me in despair, trying to ignore the nagging feeling of deja vu knocking on the door.

It's been three years since our youngest son ditched the feeding pump and sustained himself, eating enough to grow and needing his tube only for medication and occasional venting/fluids. The much hated, sleep-sapping, bed-wetting device was handed back to the NHS at the first opportunity and I hoped to never set eyes on one for our use again. But sadly he once again needs a bit of help and it does indeed make sense... but what has sense got to do with emotions? On hearing we would shortly be taking delivery of a pump, feeds and other paraphernalia I felt as if someone had kicked me in the stomach, or that I was so sleep deprived I was hallucinating and recalling conversations of years ago. I do suspect my little man will put me completely to shame though and take it all in his stride, as he does everything else in life. He will no doubt be making jokes about it with his Dad along with his repertoire of funny accents and imitations of "French men going skiing at weekends".... (you had to be there). That boy has an enviable sense of humour and I can cope with most things alongside him providing he is able to see the funny side.

As if that were not enough excitement for one day we are also seriously considering alternative secondary options for H after a stupendously appalling day on Friday which rounded off a challenging first week back, continuing in the same vein as last term which was not much better than the one before. Quite honestly I don't have the energy to continue fighting to precipitate better understanding of ASDs in his school, in part because I totally sympathise with them. There may very well be understandable and explainable reasons for his challenging behaviour, but the fact is we struggle as much at home as they do at school. I cannot get on my soap box and cite alternative, practical and more appropriate methods of tackling each meltdown and its aftermath, because I'm still waiting for my own lightbulb moment and some illumination on managing him here. What I do know though, is that there is a time to admit a strategy change is needed, and if someone could just turn on the light and point me in the right direction I'll be all geared up ready to fight his corner once again.

In the County which pioneered inclusion high functioning children with complex needs are sadly frequently neglected, as elsewhere. The old adage that the bright child would "do well anywhere" is simply untrue, and my son is an excellent example. With a visual IQ over 140 you would at least expect him to be performing at an average level, once his additional needs were taken into consideration. But the fact is that he is years behind in numeracy (as measured in school) and almost as far behind in written literacy work. That same child can architect and code Java mods for Minecraft, build his own Servers and partition a hard-drive to operate Linux and Windows simultaneously, but those skills are not rated by our education system. There really is something fundamentally wrong with forcing each and every child-shaped peg into the same hole. In my limited experience of teaching and my many years experience working with and bringing up children, I have yet to find two identical "pegs". Even the identical twins I know are very different, learn differently and their pattern of strengths of weaknesses vary. So how a child who starts off very different, who was non-verbal before the age of 3, barely recognised his wider family before school age and spent the whole of Reception either under the table or excluded at home is supposed to thrive in mainstream is beyond me. Sure, he has an outreach team going in regularly offering both him and school additional support, but it is too little, too late.

We've discussed Home Education, but H really doesn't want to go down that route. He desperately wants to be with his peers, have friends, feel wanted and needed by others. Yet his behaviour is driving his friends away. What I wouldn't give for those who champion "Mainstream for All" to witness his tears most evenings and understand the damage the stamp of failure a does to a child. He was set up to fail before he even started school, in an environment which measures success in a purely neurotypical manner.

So yesterday was the first of what will no doubt be many discussion about "Where Next", but it is a topic with little room for discussion, there are no schools in our county for high functioning ASD children, and I refuse to send him to board away from home. It seems we don't have much choice - to continue "fire-fighting" at home and at school with a child falling progressively further behind and feeling more of a failure, or we take the initiative and responsibility for his education ourselves. I don't like either option so although I had intended to sit back and enjoy the ride a little more this year perhaps some planning into the future is required after all.

So I guess it's not really very surprising that I didn't sleep much last night. I do currently feel rather "knocked down" but as always after a little pause for breath and a lot of thought and consideration I will inevitably bounce back again. Just call me Mrs Skittle.

New Year or Same Old?

Having read my totally amazing friend's new Blog post I decided that I would click on the browser tab I opened (a week ago) to write a new post myself.  Given the lack of noise/spontaneous combustion/demands here right now, and my hugely successful attempt to ignore the ironing pile/dishwasher/any other sensible use of my time there really isn't an excuse to procrastinate any longer.

It's not that I arrogantly assume anyone else wants to read my ramblings, but the recent "writer's block" has been incredibly frustrating for me. I find writing such a cathartic process, and somehow sharing my trivialities with cyberspace enables me to move forward - whether in fact my posts are actually read or not. So I'm not totally sure why I have found it so painfully challenging to collect any sensible thoughts to record in recent months, but I suspect sleep deprivation may well be the main culprit. New mothers often speak of this mythical ten per cent of brain power pregnancy is supposed to "mothball", and share their yearnings for a return to full capacity. I think after 14 years there is little hope of that for me but without a doubt the recent months of repetitive night wakings (medication change and small daughter to blame) have rendered the remaining functional percentage semi-comatose much of the time. Or at least much of the time I have available to write! But the New Year is always a significant way point, and worthy of additional effort, and it is one of my Resolutions to find more time to write.

So how do you imagine New Year? I don't mean what does it mean for you, but how do you visualise time and its partitioning?  Being a teacher, and with four school aged children the New Year for us is actually not 1st January, but early September. I do imagine each school year to be an exciting "box" to be opened, experienced and enjoyed. With new challenges and adventures, troubles and joy. But January? I've never thought of the "real" New Year quite like that. For me, time is an inexorable mobius strip, which we move along at an inevitable pace. Like a tape measure each New Year is spaced along its surface, barely significant other than yet another marker along our personal timeline. I don't cross the threshold of the New Year with excitement or trepidation, but rather a feeling of inevitability, resignation and sadness. The sadness is purely because time persists in moving ahead at its own pace, those we love growing with us and cherished past times drifting further away. There is still the hope and excitement, but bizarrely I experience this to a far greater extent in September. January is such a bleak month, and this travelling forwards seems dulled in comparison. There is absolutely nothing new for me on 1st January from the day before, nothing to hide the fact that we are still fighting the same battles, with imperceptibly unchanged routines. In contrast I find the new school year such an invigorating time, I love the Autumn with its weather and festivals and feel a huge sense of achievement as my children take the next step at school, in clubs and sports.

This year was much the same, I actually remembered to write the correct year on the first cheque of 2012 but otherwise not much has changed. We have a few challenges to face over the next twelve months but nevertheless I feel excited and enthusiastic for once. I'm enjoying the present and determined not to look too far ahead - there is no Master Plan and I'm taking each week, each day as it comes. Mrs Organised is going to take a step back and enjoy the journey just a little bit more in 2012 and avoid looking too far ahead - or too far behind.

Twas the night before Christmas - Thompson style

‘Twas the night before Christmas - Our version for this year

‘Twas the night before Christmas, the children were high

Waiting for Santa way up in the sky.

Fueled by excitement, sugar and hope

They bounced and they shouted, I barely could cope

The cookies were ready, there had to be four-

Poor Santa would likely not fit through the door!

His reindeer had carrots, all neatly set out

The brandy glass empty - we must have run out!

The stockings were thrown at the fireplace with flair

One child informed me he just didn’t care,

Because “Santa will sort them, not leave them about,

He’ll not make a mess so there’s no need to shout.”

Then long conversations ensued with the cat

Minding his business sitting quiet on the mat

Concern running deep on what he might share,

With the wonderful gift-giver soon to be there. 

For animals speak on this magical night

And inform Father Christmas whom he should see right.

You might convince Mum and you may convince Dad 

But the cat is impartial on who has been bad.

Satisfied Timmy would not spill the beans

My children now hoped by whatever means

To stay up much longer than most of them should-

A visit from Santa was a prospect too good.

They hoped to snap Santa on CCTV, 

Watching him hover above our chimney

For Daddy had promised them no one is missed

Not even Santa, checking his list.

Eventually all of them began to grow tired, 

With only one hyper, distractible child.

But all went to bed without much of a fight

As sleeping would bring on the morning delight.

I thought as a kissed them, each sleepy head

How lucky I was to have four tucked up in bed.

I counted my blessings and counted them twice

Merry Christmas to all, and to all a Good Night!