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

Monday, 12 May 2014

When Life Gives You Lemons.........................................

When life gives you lemons, suck hard and wince!!!! Life sometimes doesn't wait to be invited to stop, it naturally puts on the brakes and you find yourself ploughing into the back of the person in front of you!!

This last month we had our 'Bob's review, new medication,  launch event of the Parents Forum, developing 'Bob's revision techniques for GCSEs, and lots and lots of SEN information to read.  I have chased my tail that many times in the last four weeks and flown by the seat of my pants, I should be wearing my knickers over my tights and a red cape!!  Not that I am saying I'm Superwoman, far from it!  I think SEN mummies wear red capes all the time, not too sure about the knickers though that would be above and beyond the call of duty, and very bizarre!

I have dealt with child and adult meltdowns for a variety of reasons; some completely off the wall and others with good reason, and I have had to hold my hands up and take responsibility for my own actions.  Uncomfortable, yes! Necessary, yes! Life changing, you betcha!

I have had some incredible conversations with some incredible SEN parents who take Warrior Mums to another level.  Inspiring and touching, making me realise the need for parental support can be such a lifeline for so many families, and such a rewarding thing to be a part of.

I have reached into my own emotional suitcase more times than I cared for this last month, know it still hurts, but I'm able to carefully put it away until the next time.  I have struggled to know when they all need to come out and come to the conclusion that whilst they are safely boxed away they can all stay there a little bit longer.

SEN life is changing for so many families, and it's ramping up at a right rate of knots.  Awareness and readiness are going to be crucial to successful implementation, there's no stopping the world this time, it's ploughing its way through into September and beyond!  I truly believe in working together, the new buzz word is Co-production and its threaded through the new SEN Code of Practice.

SEN parents need to be at the very heart of these changes, and involved in the delivery of services for their children and young people in equal partnership. Our local authorities need to realise that although they may have the expertise, we as parents have the knowledge of our own individual children and that is invaluable! Parents as Partners; Working with, Not to!