Monday 1 September 2014

Transition - In More Ways Than One

Reality has reeled us back into normality like a long lost friend.  Picking up where you left off hasn't been easy, and just because you are so damned organised doesn't make for smooth sailing either!  By the end of the Summer term the whole Autynary clan was exhausted, mentally and physically.  Time was needed to rebalance and redress, detox from technology and go back to basics.

My tipping point was forgetting to send back promptly a document for DWP on behalf of our 'Bob'.  I could have kicked myself! Actually, no, I walked round the kitchen repeating lots of expletives!  For many, receiving disability living allowance for your child, can make a huge difference to the needs of that child and a lifeline for hundreds.  The initial process for applying for DLA was torturous, having to describe the worst of your child's behaviour, difficulties and see their vulnerability in black and white was most definitely not what I signed up for! So when we received the DWP letter reminding us of our 'Bob's impending 16th birthday and the changes this entails, why on earth did I put it somewhere safe and forget about it!  A grand reminder that our little man wasn't so little or the uncertainty of the adult world, fear, too much too soon, the unknown..... All of the above, I think!

Mr Autynary wasn't helping with his explosive response to external anxieties, not a good advert for the adult Auty world influences, and certainly didn't help the ongoing deep discussions between me and our 'Bob' about the changes that would be happening to him over the next 12 months.

Our 'Bob' took part in a local conference for young people with SEN and disability which prompted a significant amount of soul searching on his part about autism and combined with his new ADHD medication, increased his anxieties about the difference between himself and others.  He has been troubled by so many thoughts swimming around in his head, and with this mix of unknowns insists on calling any awkward situation as 'embarrassing'.  An increase in meltdowns was most definitely a 'sure thing' this Summer! No failing on that part, I have finger bruises to prove it.  Our 'Bob' has given a new meaning to the Facebook 'poke'!

Our 'Bob' and I took part in an interview with the BBC, about the SEND changes and the impact this will have on young people preparing for post 16 transition (will let you know when it's being aired).  Interesting and what an experience!  As I am standing watching Nikki Fox speaking to our 'Bob', and listening to him struggling with his stutter, desperately trying to explain the difficulties, one thing is for sure he is most definitely his mother's son.  I am so very proud of him.  Not wanting to be seen in the shot, or for the crew to see, I wipe away my tears!  I have never heard him talk with such passion about autism and his family's support.




This seemed to start the rolling discussions throughout Summer, and not wanting to stop the flow, consciously decided that whilst I love to write, our 'Bob' wanted to talk and I needed to listen.

And as you all know, our life is full of epiphanies, light bulb moments, sure things, drama and unknowns.  I needed to stop being a 'Weeble' wobble, find my centre, recharge, reinforce and to give myself a break!  I was selfish!  It wasn't a 'place' I wanted to share and it wouldn't have been fair.  It is so difficult to just consciously stop, most people will be forced by a situation or external force, but it is so important for parents who are carers to care about themselves.  "It's easy for you to say" I hear you cry, OK, I know, but please don't feel guilty for retreating for a while to recharge, taking half an hour in the bath or like me completely retreating for over a month just remember to come back where like-minded individuals can continue to support you.


My retreat meant I missed my blog's first anniversary, so HAPPY ANNIVERSAY MRS AUTYNARY, I hope the next year will be filled with lots of experiences to share (good ones in abundance, please!), lots of laughter ('sure thing' our 'Bob's involved), tears (only those of joy) and friendship.

Watch out for our 'Bob's tales of political supremeness, writing a book and shaking off Mum!




4 comments:

  1. Welcome back. Fully understand the need to retreat and lick your wounds of which I'm sure there are many! Another fantastic blog my lovely and cannot wait to see the programme please let me know when you know it will be broadcast. Big hugs lovely Ju xx

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  2. What a brilliant post! Geze, I retreated too, it was either dealing with bureaucracy or tuning into Facebook and Twitter - bureaucracy held me hostage and burnt me right out.

    I can't wait to see the interview. Your 'Bob' sounds fantastic and we'll be all ears hanging onto his every word.

    You warrior mums are never off the telly!! :) xx

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  3. Welcome back and happy blogaversary . Well done Bob in the program great you overcome all the difficulties xx

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