Tuesday, 8 October 2013

Well hello there...

Hello. It's been rather a long time hasn't it? You know it's very possible that in the months past, I may have forgotten how to blog, so please bear with me.

First off, I know I owe it to you to give some semblance of explanation for our absence. The beginning of this tale is a happy one. It started with a few sunny days, which morphed into a few sunny weeks, and quite for the first time since my own childhood, we spent every spare moment life offered outdoors. A joy and a bind, (but not in equal measure, you'll be glad to hear...) A joy to share sparkling summer days with family and friends, lazy afternoons with nothing to do but swim, bbq and soak heat and goodness from the sun into our skin. A bind because, well, nothing else particular got done...

Except for work, which did its devilish best to run roughshod right all over our shiny, happy summer. Less so mine (although it had its moments) but more that of Mr Mavis, who is rather more familiar with the dreary tarmac of the M4 and trudging tracks of the Cornish Riviera line than he might prefer. And PowerPoint.

Writing in retrospect, actually, I'm downplaying the impact that our work lives had on our summer. My memory of summer 2013 will be more beach than boardroom but quite honestly, without the glorious weekend afternoons spent dipping in and out of the sea, and lingering about on the sand, in truth our summer would have been buried in work commitments and barely recognisable as a life. With no option to dial down the work hours (raising a SWAN ain't cheap and our main source of family income sure isn't paying what it should, no names named oh phone company dear to my heart) we just had to keep on keeping on.

All this would be fine. Fine. But were it not for a small boy whose needs are rather, what you might call, intense. Appointments, therapy, more appointments, more therapy, and all that delightful admin shiz in between. You're familiar with the score by now. We have no choice but to keep the show on the road for Orange constantly. Every day of every week of every year. And yet as the summer wound along, I found it harder and harder to keep up with everything. A spiral of inertia, I guess. I lost my drive, my enthusiasm, my hope, just a little. Therapy became something I just didn't want to do. I felt guilty for letting him down. My little boy who really, quite honestly, is mostly dependent on my input to allow him to develop at all.

Instead of being the boundless cheerleader and perpetual provider of appropriate stimulus and input, I found I could raise little energy to do anything. Orange's four daily reps of his Snowdrop programme (brushing, squeezing, hand massage, spinning, listening, visual tracking and repeat), his daily torture hour in his standing frame, his daily all-fours exercise over a rubber tube, box-sitting practice, assisted crawling, directed play, Makaton signing, finger food practice, repetitive singing, storytelling and assisted pointing all of a sudden didn't seem so manageable anymore.

By July I was teetering on the edge of reason, and by August, tipped over the edge by the school holidays (read, The Beep at home all day, every day and those of you who know her know just what this means) and some quite unreasonable but quite in-character behaviour from some dear relatives of ours, I needed a break.

So, Orange and I took some time off. Two whole weeks. No appointments. No therapy. And certainly no form filling. Although the Department for Work & Pensions must have a deep sense of irony, you can always trust a Disability Living Allowance renewal form to land on your doormat the very day you have sobbed all over your Portage worker and decided a break might be in order (don't worry, I still haven't filled it in)...

A break was just what we needed. We hung out with old friends, indulged in a little cliff top camping, ate, drank and swam. And switched right off from our world. It had got so bad, I couldn't even face writing this blog. And while we are now back in the game in grand style (new Snowdrop programme, sensory room kit ordered, new standing frame going great guns and daily therapy right on track), I have learnt a valuable lesson. Breaks are vital. I have another planned right about round Christmas.

Until then, expect plenty of goss from the Orangery. The boy is bigger, badder, and bolder than he was before the summer so all that lounging about on the beach must have done him as much good as it did us. Loud, strong-willed and mischievous he's becoming quite the toddler... here he is, giving me a right good telling off... which as well as a break, is quite probably what the doctor ordered.

video





1 comment:

  1. Love the video! Great to see another blog, and even better to hear that you managed to create some space in your crazy life. Love...

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