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

The Weather Station

Strange analogy comparing a Weather Station and Autism but it is amazing what you think about when normal routine has been broken.  Our 'Bob' had requested a super duper wireless Weather Station for Christmas and the indoor unit has been placed on draws behind the sofa.  So you can imagine whilst we have had such dreadful wind and rain we have all been obsessed with checking the data.  Our 'Bob' has been using it in conjunction with his real time flight simulator, Mr Autynary concerned that the gusts won't take out the new roof, and I who whilst  in a seasonal reflective mood drew my attention to the data titles and found myself making those comparisons with ASD.

  

The constant is the date and time; that's Autism.  It will always be there!  But like time management we strategize and plan to manage autism so it doesn't control us.  And when you lose the momentum of time management/autism you can feel tired, out of control, confused and nothing makes sense.  The balls have to drop sometime like the qurkism that is a leap year! We make reasonable adjustments in our lives.

Inside data reflects humidity and temperature, these are variable but can be controlled.  As is the core of an autistic persons temperament and judgement not everyone is the same, and with many environmental changes can impact mood, tolerance and sensitivity.

Outside data, again reflects humidity and temperature, variable association but this one we certainly don't have any control over at all.  I realised (I do that quite a lot! Epiphanies happen to me all the time I'm surprised they don't put me in a darken room! ) that this is another stark realisation of the world. We can't control the World, it's perception and the people in it.  We can influence but that's not enough.  It may be my world is so consumed with all things autistic that you could present me with a baked bean can and I could find something autism related with it.

And there is this beautiful visualisation of the outside world; big sun; clouds; rain; snow.  Something which would have had vibrant colours on our 'Bob's visual timetable. The view into the vast entity that is The World!

Here comes the Pressure! Now don't get me started on this one.  We all experience this cooking pot.  I am amazed though how our 'Bob' can keep his rattling up on high for such long periods.  It does worry me that holding on to such stress will have on his physical being never mind his mental state.  There is a Star Trek quote "I canna hold her much longer Captain she's gonna blow!" **think Hollywood Scottish accent**  And I have this nightmare I will find him collapsed somewhere.

By the time I've got to the bottom of the screen I'm exhausted which fits in nicely with wind speed and rainfall.  Life can be an absolute wash, or an almighty tornado hellbent on wrecking a path through your life, or it can be limpid, serene and tolerant.  

We accept the information from the Weather Station as given, it's part of nature.  Yes, we moan about it but all told we do venture into the darkest of storms, sunniest of days and no harm comes to us (Wellies and Sunscreen are required).  Brave individuals will chase the storms and incredible Explorers venturer to the coldest parts of the world with some uncertainty and risk but they still go there.  Governments invest in the Weather it brings so much to this world; Research and Development, Environmental rescue and support. Why can't the world just accept Autism as a given it's part of nature, it's part of our 'Bob' and so many other Children & Adults on the spectrum.  Why then can't the Government invest more in our 'part of nature'? Why can't the world just accept Autism is not going anywhere and work with us not against us!  Our 'Bob' is an ASSET and he IS worthy of investment too!

Nobody's Perfect!

I am thankful this morning for heavier traffic on the road home, it means I have to take the long way back from school. The radio is on but I don't hear a sound.  I'm concentrating on not crying because the guy in the slow moving lane next to me is staring intently at the car, not too sure whether he thinks he's going to get in a bit of car flirting before the office.  Not with this lady your not!  Today I am having my blip! STOP the world, I want to get off day!!

I don't have them that often but as a mother you rarely have time to think about stuff other than the here and now.  Certainly been given food for thought from my family this weekend, and I'm feeling the after effects. 

Yesterday should have been a very proud Mummy moment.  One delightful memory that is locked in time that you find you boast about when meeting up with people you haven't seen for an age.  I may well do that but certainly not with the same enthusiasm.  You see our 'Bob' was awarded a Subject Award for Science at his school's presentation last night.  In Year 9 'Bob' managed to jump from the lowest set to the top set in one year, now that's an achievement in anyones books but 'Bob', not only on the spectrum and ADHD, is Dyslexic.  He has come on leaps and bounds but it is always a contentious issue, and he has already identified this may stop him from living his dream of becoming a Pilot.  Autism kicks in, ADHD kicks in and the combination does not make for comfortable association.  

The school may well have had their arrangements working like a smooth oiled machine, but for 'Bob' he didn't know what to expect; There wasn't even time set aside to run through with him what he needed to do before the event, so he WOULD know what to expect.  I felt very let down and all I can say is that meeting on Thursday afternoon, well I've added something else to my list of discussion points.

And to top it off our 'Bob' also happened to have his appointment for his 2nd EEG that morning.  The anticipated demand of the day just gripped my Son all weekend, physically and mentally.  I had complaints of feeling unwell and headaches. The reluctance to engage in any external activity fed the anxiety so we just gave in and allowed 'Bob' to become engrossed in his fantasy life on the PC.  The slightest request would trigger an outburst, I have been elbowed, prodded and punched this weekend.  My Boy does not normally have angry physical outbursts like that.  It may be we never see this on a regular basis because of our meltdown management, or it could simply be our life generally does not herald multitudes of social engagements. It was unusual behaviour!

It's not just 'Bob'; I have an overly stressed and tearful final year student, desperately juggling student and work demands and a Hubby who is pacing the floor and becoming incredibly anxious because we have a plasterer in the house!  A situation very much out of his control.

At this point I am folding my arms around my head in a tight self head lock.  Oh there's no point in that, my blip in life will still be there.  I just need to claw my way out of this hole I've put myself into.

The lady in my life Mrs W, who covers my back, who picks me up and supports me when I can't hold myself up, the one who knows when to take me home after I've had one too many grape juices sent me this 

My Xmas Pressie

And the support from Twitterette's is fabulous!  I am going to put on my virtual armour; Might be a little bit clunky; And if you hear a clanky clank It might just be me following you down the tinned veg aisle in ASDA.  So for the next couple of days I will cover up, lick my wounds and remind myself I cannot create 'perfections' in my family's lives...... Who am I kidding I will keep doing that just next time I'm packing the tin suit!!!

Pop Pop Fizz Fizz Bang Bang.............

This week has been full of fireworks! And not the pyrotechnic kind either.  My word a certain Celebrity caused a right old ruckus in Twitter land and social media when her remarks on a certain well known radio station shot through the fibre optics like a bullet!  However it has raised the issue about support and parents, and is a hot topic of deliberation and debate. 

As many of you now know I'm really passionate about supporting SEN Parents but there was a moment in our life that I was like a rabbit in headlights and nowhere to hide.  I didn't know many playground mums and hands up I was quite new to it; the Childminder had done the school run before. I found myself shuffling in at the back and everybody seemed to have their own little group.  My Sister had moved into the area and my Niece started the same nursery but that did not detract that I felt I was the only one juggling slippy balls.  Well at the time they felt like dirty great big watermelons!  I was paranoid that I had the 'naughty kid' because our 'Bob' was always on that 'mat'.  The amount of times the hand beckoned from the nursery door and I would hear "Could I have a word!"  The art of eye rolling became my new party piece and I became a master of defensive.  If only there was someone I could have shared a thought, or bounce off ideas but since we didn't have a diagnosis nobody seemed to know where to send me.  So I'd hit the internet!

Every time I thought about our situation I would well up, behind closed doors of course. I knew I just couldn't do that in public or I would just completely lose the plot.  After us just plodding along on our own, I asked the Head if perhaps we could set up a group for the parents of children with SEN in the school.  She shot right across my bow and told me that they wouldn't want to draw attention to themselves and some of them didn't even recognise that their child had a problem!  Feeling somewhat deflated recoiled back into my world.  By some sheer coincidence a lovely lady moved into the area whose middle child started at the primary school and unbeknown to me had another child with Autism.  Whether the Head felt she needed to do a bit of back peddling I don't know but we were introduced and as they say in the movies 'makings of a wonderful relationship!'  Mrs S and I co-run our voluntary group for local children with high functioning autism/Asperger's and have done for a number of years.  Somehow we clicked and she is my Auty best buddy.  We know that each other will just get it no matter how daft it sounds or how intolerable it is; we step in each other's shoes.  Our relationship is really important to us both now.

We hear some horror stories about how parents and their Autistic children are treated, and it is down to perception and badly informed individuals a lot of the time I feel. Not being afraid to talk openly about your child's condition without worry of prejudice or ridicule is something we would all love to be able to do. That's so far short...

What I'd like to think is we can support other parents and ourselves in so many different ways. Don't think that the one nice comment you make to someone on twitter won't make someone's day, or fill their heart with your understanding because the truth of the matter is it probably will make their day.  We can't see down a phone line nor behind someone’s smile so never underestimate the power of united support.  Sometimes a smile is all it takes in the playground....

PS

I'd like to dedicate this post to a wonderful lady in Twitter land who supports so many people with her fantastic Warrior Mum Journeys michelledaly.blogspot.co.uk  Recently she wrote my story and by doing this I found support from so many different people.  I realised that no matter how far along your journey you are it's reassuring to know you are not on the path by yourself anymore.

It's My Anxiety and I'll Cry If I Want Too!

It's been one of those weekends.  I've got over my first blog nerves with the help from another super blogger, still waiting for the bubble to burst to be honest, grappled with my own insecurities because I hadn’t received any comments. Y'know the ones, everybody is too polite to say anything or it wasn't bad enough for anybody to take the time to slate it.  So off I went to seek validation from those who know me so well and love me.  I thought to myself  "these guys will tell me how it is, I hope!" They did positively.  Phew! Though one response from the green-fingered Mr W caught my twinkling blues "...trying to leave a comment on there..". Hmmmm, let's take a look at this baby then.  Several hours later, I had my very own meltdown, felt like an absolute numpty!  Nobody told me you had to switch it on!!

So if you feel the need....go give it a try, I'm waiting!!!**cheeky wink**

As I said, one of those weekends, the lull before the storm that is going back to school! I ALWAYS leave it to the last minute, my thinking behind it; it only leaves days to cause major anxiety meltdown!  Our 'Bob' has over the years finely tuned his meltdowns, we have had the screaming in my face, throwing himself on the floor, finding the ability to launch the most minute missile and make it hurt, and we have had the hours of sobbing and the relentless chunnering to name but a few.  So our latest is to become VERY LOUD, critical and we GO ON, GO ON, GO ON.

Our antecedent - the dreaded school blazer. Our behaviour - firm resistance.  Our consequence - haggling.  You may well ask! My son has got haggling down to a fine art.  In order for us to even attempt the rather crowded store, we haggled a one size one try, so choice of size mattered.  Did I need other stuff? Yep you bet your purdoody I did!  The queue was the longest one I have ever seen in there, and by the looks of the other parents, they had the same idea too! We lasted 2 minutes, one choice, quick try on, and Mr AUTYnary and Our 'Bob' were exit stage left. Leaving me standing on my lonesome.  I did have a little chuckle to myself, as some poor bloke had quite clearly been sent by the wife with said child in tow - mission school uniform.  Bless him he kept taking pictures of different sized blazer's on the child, then talking to mobile, taking it off trying another one on.  All this whilst standing in the queue, now who said men can't multi-task!

 I finally get out and go to seek out Mr and Master AUTYnary, where are they......no bloomin' idea! Gone! By this time I am really cheesed off.  I'm wandering up the street and who comes strolling round the corner; you guessed it Tweedledee and Tweedledum!  Looking very pleased with themselves, our 'Bob' asks for £1.50.  The pair of them had been in the charity shop and had found a lock for the den.  Do I dare mention at this point we need a new pair of shoes?  Nah let’s get the charity shop over and done with.  Besides I knew the response.  The suggestion of going into a weekend packed shopping centre just created an almighty kerfuffle, and that was just the senior of the pair.  The upshot, shoes from last term are in reasonable condition so we are having to change the laces and give them a good polish, school bag is still relatively hole free and we can't possible choose one because someone else might have the same and it would cause confusion, so we don't take the chance! I get "Shsssh'd" and "don't embarrass me" "What are you on woman?" "You're making me anxious!”  So why is buying new every school year important? Is it for me or him? On reflection I'm the one who is concerned he fits in and doesn't stand out anymore that he already does, I'm the one who is conscious he dresses like the other teenage boys because somehow he will be more accepted...who am I kidding!  He just wants to be secure, comfortable with what he knows, he has anxiety about the return to school and all I'm doing is making it worse.  Lesson learnt, stop waiting for the last minute, be smart, change my tact and listen!  He's not a young child and I need to remember that.