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!

Tuesday, 24 June 2014

The World Stopped and I Got Off!!!!!!

I feel I have been away from blogging land for such a long time, it was a struggle to step back into the writing world I so love.  The reason you may well be asking, one huge heart wrenching biggie!!

Just because I have a child with a disability does not mean I am excluded from the "How can this happen to me" club, far from it!  Life is not selective in who it dishes up crap too!  And some of us have far more than our fair share in one life time.

Our world was turned upside down eight weeks ago when Grandad Autynary became very ill and started to have difficulty eating.  Not living nearby was relying on the updates from Auntie N, and Nanna Autynary.  The decision not to tell our 'Bob' was not an easy one, it was very much on a 'need to know' basis.  The anxiety and continuous inquisitive line of questioning would have been too much to bear.

One of THE most hated words in the world entered our life in silence because nobody could bring themselves to say it!  We all knew but in the back of our mind, there was still hope, a glimmer of positive uncertainty.  And as the days blended into one another, the unspoken word took grip and it was quite clear IT wasn't going to give up without a fight.

Grandad Autynary isn't my biological Daddy, but just because we don't share the same blood line doesn't mean he was any less a Dad, in fact he was my Dad longer than my biological father.  My first memories were his feet, yep, his feet.  I was four and it was the last visit I had with my Mum before our lives took a dramatic side step,  She had picked me up and we had stopped at a bus stop on the main road,  out of the blue this car pulled up and a giant of a man got out.  He had driven from the North to the South not knowing where he was going or how to get there, managed to drive several times round London before stumbling across us on the main road.  He told Mum he had a feeling that he needed to be there. So picture the old western movies where the camera pans into the cowboy boots, cowboy getting off his horse, and you hear the clink of his spurs, and the distinctive high noon tune..... Well, for a four year old that was my western moment.

When I was 15 he took me into his home, and from the onset I was part of the family.  He was the man who was always there with the tissues, or the vodka!  He was the man with words of wisdom.  He was the man who brought me a stiff drink on the morning of my wedding when I had the wobbles, and gave me away into the safe hands of my husband.  He was one who took me to the hospital when I was ill with pre-eclampsia when I was carrying our 'Liz' and one of the first people to hold my babies.  He is their Grandaddy.  

When I rejoined the family at 15 one of the first words he said to me was  to let me know I had a cold nose after giving him a peck on the cheek, and proceeded to tell me on a regular basis that I was always the one with a cold nose. On my last visit they were the last words he struggled to tell me........ "Still got a cold nose!"

After the greatest battle of his life, and we have been through many, he sadly lost the fight against the silent killer.  He was the most stoic man I know, and right up to the very end the bravest.  It's difficult to tell any child that their grandparent has passed away, and for anybody to say that children on the spectrum wouldn't necessarily feel or 'get it' is so far from the truth.  My boy misses his Grandad, he was a constant in his life, in all our lives.  He isn't the only one who misses him terribly.

For me there are moments of  normality, just because you have to and as you all know, autism takes no prisoners, tinged with overwhelming moments of fluidity of salt water from ones eyes.  There is a heaviness that starts from my knees and works its way up and lays heavy on my heart which just doesn't want to budge. Thursday will be our day for goodbyes and reflection, lots of tears and a bucket load of happy reminiscing.

For my Dad, The Gentle Giant, love you and miss you XXXXXX