Sunday 30 March 2014

OMG! I'm in a Book........ & To Wonderful New Friendships on Mothers Day




Look what arrived yesterday morning!  Seriously giddy as a kipper!  I'm in a book!  Eek!

Before I plucked up the courage to start blogging, and I do this quite a lot of the time, was viewing from the sidelines. There was the fantastic Wendy, who triumphed so much and blogged with such conviction on www.savette.com, and then there was super Jo, who's positivity towards autism is an inspiration over on www.mummyworgan.blogspot.co.uk, and then there was this wonderful woman Michelle, who pulled their stories together and like wings of an angel wrapped them into this safe haven of support and warmth, over at http://michelledaly.blogspot.co.uk.

I have to thank Wendy for her support and encouragement, and helping me find my confidence to write that first blog post.  I had absolutely no idea whether anybody would be interested in reading anything I had to say, with Wendy's help she made me realise that if only one person read it and found shared experience then it is well worth it. She probably doesn't know how much she has impacted on my life, nor would Jo or Michelle, we make comments on posts and retweet stories but not necessary say these words.  

Thank you ladies, and to all the other ladies out there who blog with passion, a huge Thank you, you guys do make a difference to peoples lives.

Michelle Daly writes this fantastic blog Warrior Mums, I stumbled across it, like most things, on Twitter.  There was lots of activity on Twitter one Sunday night, and I thought I would hop on over to find out what was causing such excitement.  Wow!  What incredible stories were being told and such inspiration.  I was truly astonished, that these ladies were laying bare such emotion for all to read.  I wept, I laughed and I felt their pain.  Michelle collaborates with these fantastic Mums, sharing their incredible stories, the lows, the highs and with some delightful photographs.  I do love a good photo!  

I don't know how it happened, but I was honoured to be asked by Michelle to contribute to her growing collection of super Warrior Mums' stories.  At first I didn't know whether I could do it, it wasn't the stuff about our 'Bob' that was the difficulty, it was talking about me!  Not many professionals ask about you!  There were a few tears cried over the piece, some raw nerves plucked but throughout the process Michelle was at the other end of the line.

When you read about Michelle, and I suggest that you get a copy of her book With a little help from my friends http://www.amazon.co.uk/Little-Help-my-Friends/dp/0957048734,  you soon realise what an incredible woman she is.  Amazon's information about the author "Michelle Daly was kicked out of school at age fifteen with a reference stating, “Michelle thinks life is one big joke.” She went on to work with children in residential care and in 1972, at nineteen, became the youngest single woman in Britain to obtain legal guardianship of a child; Marie, a seven year-old with mental and physical disabilities. In 1990, they moved to Ireland, a country she refers as her second home, where she home schooled her two children, Patrick and Anna. An advocate for children’s rights and people with special needs, she lives with Marie in Liverpool. Michelle has also written a book of fiction, I Love Charlotte Brontë, which is available in paperback and Kindle editions."

I can tell you so much more about this lovely lady; tenacity, fight, passionate, dedicated, courageous, gutsy, love, warmth, inspiration, brave and someone I am so proud to call a friend. 

Personally speaking, I had never experienced someone willing to fight so hard for a child, let alone one that wasn't related to them.  I'd experienced being fought over, never having anybody fighting for me!  I was amazed!

When Michelle mentioned she was putting together the stories to create a book, I don't think it sunk in to be honest.  I knew she was busy putting it all together and checked in every now and then to make sure she was OK.  Then bang! It's here!  




I will never tire of saying what a privilege it has been to be included in this book.  It's appropriate that all the proceeds should go to such a wonderful organisation MENCAP http://www.mencap.org.uk/ and what a lovely foreword from Jan Tregelles, Chief Executive, Royal Mencap Society.  If you only buy one book this year, please pick this one. Within it you will find a collection of truly marvelous, inspirational and amazing Mums, all different but with a common bond, love for our children and families!

To my fellow Warrior Mums, Cheers!  What a fantastic club we are in, loved reading every single story and so chuffed we are in it together.  To the Warrior Mums of tomorrow, can't wait for you to join us and read your incredible, amazing and inspirational stories.  To Michelle, Thank you.  You are one in a million, keep doing what you do best, being an Angel! Xxx




One last word; Thank you to all the readers out there, without your input these posts are merely just twittering from the front line.  

Much love and respect Justine xxx

Monday 24 March 2014

Detectives Autynary and 'Bob' - When Two Worlds Work Together!

 How far would you go to step into your child's world? Well, since the disappearance of Flight MH 370 I have been doing just that.  I've jumped in and now I'm up to my shoulders in it!  I have always found that I have been the parent on the periphery, I don't really bring much to the table.  I mean I'm not really into science and engineering, and I've never had a penchant for trains, planes and automobiles!



As soon as 'Bob's radar hearing heard the words plane and crash resonating from the television, the whole house has been on news watch!  Mr Autynary didn't need much encouragement either.  It starts with a full run down of the overnight news from the moment we get up.  Flicking between the BBC and Sky news channels, looking for vital clues and even the cross reference of data has managed to sneak into the morning routine without much interference.  Strange that, when the change is desired it manages to pass quality control reasonably well.



I am given strict instructions to hold a watch on the latest updates, and if something genuinely important is reported to make sure Mr A gets an email.  My own 'Breaking News' update is called for from the moment 'Bob' gets in the car after school, and we have to digest and evaluate any data change.  'Bob' is really eager to get home straight away, so unless I want a hoo-ha about stopping off for vital supplies, it's straight home we go.

You're probably thinking, Why? Stop! Or you're thinking I've gone completely barmy!  I've missed The Voice, poor Phil and Holly haven't seen the light of day this week in Autynary Towers, and I didn't even get to see The Boys from Saturday Night Takeaway on a plus one.

I've found myself debating theories, and analysing speculation with Mr A and 'Bob' and have spent hours searching on the internet, like so many others, for a miracle landing on some uninhabited island.  For Mr A and 'Bob' it's all about the technical and for me it's about the human aspect.  The human aspect requires an understanding of emotion, empathic attitude, and psychological observations, all of which Mr A and 'Bob' do not find easy if at all!  The importance of logic and mechanical failure is a preferred explanation for my boys, and the digestion of disparaging information about the crew intriguing.  I need them and they need me to make sense of it all. 

I know I've been swept away with this obsessive approach, and it won't be the last time either I'm sure.  The principals are the same, though, working together to make sense of the world!  I'm encouraged that this method will open up a window of understanding.  I know emotions don't come with a formula that can be easily applied, but this is a good visual living experience which will become a memory.

Our 'Bob's last SLT review recently recognised he was still having difficulty seeing things from another persons point of view, and the differences they bring.  Which, as any Auty parent will know, that is one hell of a difficulty in this world.  When you put this in context with all those other difficulties you can see how even the smallest of positive influences can make a difference; he's still struggling adapting to change, difficulty in asking for help and other social interaction complexities!

I don't set out a plan to learn from every experience in our life, far from it.  I'm not that organised to be honest! It's usually writing this blog, I find by epiphany!  I just try to bring all of my neurotypical traits to the table in hope that we can find a balance that works for us as a family. I smile, 2 against 1, I have to go armed with something!



Sunday 2 March 2014

Who's survived the half term?

I wonder if I am the only Mum who is more perturbed by the disruption to routine that the half term brings than the child, especially when the child needs so much structure and support. It's taken this last week to catch up with all my jobs, and the 'to do' list was getting to such epic proportions that even procrastination got up and left the room!

Would you believe we've never really had any firm strategies when it came to school holidays,  they are always an anomaly.  It is a time that gets lost in refusals, meltdowns, negotiation and ultimately bribery, and over the years this has become more difficult as 'Bob' has got older.  Have we, Mr Autynary and I have been lazy, could have been!  In our defense, we spend most of the year desperately trying to achieve engagement, it's almost like the whole house takes a huge sigh and collapses out of sheer exhaustion when we get round to half term and holidays.  I have spent many sleepless nights feeling guilty that we haven't given more opportunity to 'Bob' in the extra curriculum stakes and any cracks in my parenting skills would identify that my ability to become a 'Super Mum' had 'Super'd' off!

Like many Mum's, I would read lots of women's magazines with an ideological notion of 'yummy mummies', pristine homes with a distinctive chateau farmhouse look about it, vibrant colours with a scandi twist to the playroom and rather delightful cupcakes whipped up in a trice!  In reality, I would gaze around at my Lego covered living room floor, the mound of washing on the kitchen floor, the breakfast pots stacked above the dishwasher and not in it! A house that has half finished renovations, and furniture that has seen better days.



In my order to regain some control, anything that could be put into one of those pretty printed boxes was! Mr Autynary seems to think I  have OCD because the box mountain is getting bigger and if I carry on he thinks that it will be on par with Hadrian's Wall.  'Bob', by the way, is completely oblivious to all this!



When 'Lil' was little I was working, but we always made the most of the holiday/weekend time.  We would do brunch, go girly shopping, Oooo and Ahhh over shiny, sparkly trinkets and have lots of film time.  You would have thought that with the arrival of 'Bob' we could balance out our social activity which would include Mr Autynary too (bless him he did feel left out).  In hindsight, a screaming toddler arching his back and pushing himself out of the stroller was a really good clue that things were not going to be that easy but bless us we did persevere.

That sums us up 'perseverance'! Well, I'm totally exhausted and a little bit miffed!  I try not to let these kinds of emotions railroad me, but sometimes they just come steaming on in there. With every half term holiday I know exactly what is going to happen; Our 'Bob' will set up the PC for the long haul, freshly laundered lounge wear becomes the norm and with waitress service what more could a young man ask for.  I'm tired now of the on-going battle to just get him out the front door, I'm finding the anxiety is shifting on to me whilst he is as happy as a sandboy.  And at the end of the day I'm not sure who I am more cross with, autism or me!  Have I survived the half term?  I think on this occasion anxiety wins hands down!