Rose amongst thorns

It's Wine O'Clock on a Friday night and I am sitting here proud as punch of my youngest child. I say "youngest" because those ten minutes count for something in the sibling pecking order, and can frequently be used against you by an over-controlling elder brother with zero empathy. (See "Sibling Rivalry" )

Being the only girl in a family with three boys can be tough. Initially held in awe and wonder by two adoring older brothers when she was a baby, the novelty wore off once her desire to take on the role as "Mummy's Deputy" kicked in. With one incredibly disorganised brother and two who try hard but often need a little help the temptation was too much to resist. K used to even dress her twin brother on occasion, and has been known to wash his hair and clean his teeth even recently. She is naturally maternal and caring and has a large family of dolls on whom she lavishes her affections, and I still receive daily drawings of cute puppies to try and break down my refusal to allow her one. But this care and concern for her brothers incited huge resentment from H. Being autistic he struggled to relate to twins, needing to "divide and conquer" to have any chance of social success with either. And what is easier than to ally yourself with the sibling you have more in common with? So for years K has endured daily ridicule and a verbal onslaught from H which we have tried to limit and control.

Added to this she has had to cope with her twin excelling in pretty much everything he tries, particularly in the classroom. But the situation is changing, and I couldn't be more pleased. Our little Rose (and that is her middle name too) is showing herself to be quite the artist, more precise and particular than her twin brother who loves making and is extremely good at construction, but she has a real eye for colour, detail and the ability to visualise from 2D to 3D with ease. She also dances beautifully and can sing in tune - which her brothers find more difficult. But none of this impresses H who is far more concerned with Minecraft, Java and the last episode of Tracy Beaker, and has continued to put her down relentlessly.

But today she earned his respect. H has always loved swimming and is pretty good in the water, and although he is perhaps overly optimistic he has aspirations to be the next Michael Phelps. So on learning that in today's Year 1 swimming gala K helped her class win (over the parallel class favourites) as one of the fastest swimmers H stopped in his tracks.

"Really? But you're so little!" he exclaimed.
and then the best bit......

"That's amazing. Wow - you must be really good. Like me! Respect. Much respect."

Indeed. Much respect, and much happiness on hearing her older brother consider and value her achievement. Happy day.

Spontaneous Combustion

 

This is a wonderful phrase (and the title of a play I believe) which I have coined many a time during my adult life. It's not so much that I wish to get OFF, more that it would be nice if the world would just kindly slow down a little, or perhaps even stop for long enough for me to a) make a cup of tea b) allow me to drink it without the usual reheating (twice) and c) perhaps even let me SIT to drink it? 

I am supremely grateful that years ago, when I had one small not-so-demanding child no one told me that I should enjoy the (relative) calm I then enjoyed. Working full-time as a single parent, going to bed at midnight after marking books and preparing lessons, waking to transfer washing to tumble drier (yes, they've ALL had reflux...) at 2am and then finally up at 6am for work I felt as if I was at times struggling to keep the plates spinning. Little did I know then that it was but an oh-so-gentle introduction into the world of additional needs, not even close to the "extreme parenting" I seem to have to hit the ground running with on a daily basis now.

Most of the time it's fine, and fun. Hard work but exactly, totally and utterly what I was made for, I *need* busy like most people need air. And Jelly Snakes... definitely Jelly Snakes too. I thrive on being insanely, frantically busy - but only when I feel in control. Just as well really, considering. The problem with living life on the edge however, is that you have to cling on tight when you get to the hair-pin bends. The moments when the incline suddenly becomes a vertical ascent, which (just for kicks) you have to scale blindfolded with a deafening roar in your ears. I hate those bits.

My sense of humour failed me this week, it's been a full-on month with a lot of highs, good bits to remember, and a load of "stuff" I could really have done without. One good thing about being ridiculously overly-busy is that you can lost the long term perspective and keep your head down. Not much choice really when the here and now takes every ounce of energy and focus to be honest. It IS a useful survival mechanism though and I have used it many times to my advantage, volunteering the few spare minutes I have to others or considering crazy plans such as satisfying my daughter's desperate need for a dog - or even feeling guilty that I am still a full time mum when the children are at school - and maybe I really should consider getting a job. The busier I am the less time I have to ponder the future.

I think that is what has made this past week so difficult. In so many ways I am being forced to look ahead, and I don't have the time or emotional capacity to deal with it right now. There is no need to fill spare minutes to fix myself stubbornly in the present - there are no spare minutes and the future I must face.

Firstly there is the start of the planning process for H's transition to High School. He's only entering Year 6 this September but we have Multi Agency Meetings, Annual Statement Reviews and more with SENCOs and teachers. Transferring a child totally dependent on full time 1:1 support to stay in school  -and hopefully have a positive experience there - is no walk in the park. Ideally I would like to give him and his future my undivided attention... but that isn't possible. We also have quite an important review at GOSH for the twins next week - neither is that well right now and neither can continue as they are long term. More decisions, more.... *thinking*.

Added to all that my parents have FINALLY exchanged contracts and are moving house next week. This is GOOD news, no complaints there, but it has definitely precipitated a few feelings and emotions I am struggling with. They are leaving the house I grew up in, it has been their home for 47 years and my Home with a capital "H" since I came home from hospital at a week old. Twice we have returned as a family to camp on floors whilst waiting to move ourselves, it is where a piece of me most certainly will always be. It is one of the most special places in the world to me, saying goodbye will be a huge wrench. I don't do moving on very well....I think in many ways the past is always more attractive than the unknown future!

So once again I find myself thinking how perfect it would be if I could just press pause for a while, to allow my brain the necessary time and space to process so many thoughts and emotions. But I guess that was never the life I signed up for, and probably not the kind of life I would ever choose either. (There would be at least a couple of dogs resident here and a job application in the post by the end of next week if someone did find that button.) So I am hoping I can find the inner strength to get me through the next couple of weeks (and my poor parents as they move!) and hope I don't spontaneously combust along the way! Normal is way too overrated anyway....

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.