Tuesday, 10 January 2012

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.

Friday, 6 January 2012

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.
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