Monday, 15 September 2014

Can We Ever Let Go?

If you could see inside my head, the view would be congested with little red balls shooting off in all directions.  Can I ever see myself removing the invisible cloak of protection from my children, in particular our 'Bob'.  Honestly, truthfully, and without apology, NO!  It's not because I don't trust them, it's because I don't trust the world.  Is that a dreadful thing to say? Am I judging a book cover? Or has the story just been tainted by the horrors seeded throughout.

The closer our 'Bob' gets to his 16th birthday, the more unsettled I get.  This last week he has accused me of being over-protective, in fact, he had another almighty meltdown about my interference in whom he could and couldn't speak to over the internet.  He is certainly pushing the ground rules and boundaries.  We've had the chats about staying safe online, and if we personally don't know people then we do not accept them as friends.  I've always spoken frankly with 'Bob', we learnt early on the ambiguity wasn't his strong point, and that we always had better responses when we just told him the truth.

This new ADHD medication isn't helping either; Anxiety levels up, stress levels up! That's just me!  We are revisiting comments about death, 'not being here', 'life is not worth living', 'everyone is against me' and the good old favourite 'I hate autism and ADHD'.  Even his TA is concerned with his persistence in mentioning death at every opportunity.  His turmoil is my turmoil, and this is not the right time to have unpredictable side effects from new meds.  The stresses of exams and transition..... Arghhhhhhhh!

Our life is so tied up with routine, rigidity and rule, that to say it's all about control is merely scratching the surface.  It's in there somewhere, but also can be the problem.  Battles are rife and there is no sign of a peace treaty.  Well, certainly not till we resolve the medication issue at the next CAMHS appointment.

I'm walking around with a heavy mass in my stomach and I can tell you it isn't from eating too many pies!  I dread home time, dread homework, dread bedtime, dread, dread, dread!!

And to top it off, our 'Bob' wants to write a book!!  A teenage Mummy and Me book.  I would love to do this with 'Bob' but not this week.  I'm still struggling with the speed of independence and the challenges loosening the parental grip is presenting.  Am I making too much of his vulnerability, is it just me!  Mr A would say yes if you asked him last month but even he has seen a dramatic change in 'Bob's behaviour.  Am I overreacting? Can't help it, I'm afraid!

Who needs help with transition?  Think it might just be me!

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

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!

Monday, 14 April 2014

"I Hate This House!" - Sibling With A View

It truly doesn't matter how old your children are, or if they're on the spectrum or not!  If they've got a gripe the whole house knows about it.  Sadly, it is usually us mummies who take the brunt of the directed rage.  For other people looking in, a perception of the spoilt brat syndrome, or just a horrible, badly parented child is quite often a stereotypical conclusion.  Step inside the sibling world of a child who is on the spectrum and one who has ADHD, and try to understand how difficult it must be for them.

There's no blame to be had, but it certainly is tricky avoiding the feeling of guilt!  Our 'Lil' is in her twenties now and is 'Bob's older sister.  She's nearly six years older, and for those first six years it was just me, her and Dad.  A lot of the time it was just her and me, Mr A spent lots of time working away and we loved doing girlie stuff.  Every weekend would be girlie road trip, and we would go all over the place.  Even when she was a baby and I didn't drive, somehow we still managed to get out and about.

I recall the times when she was a toddler and I would be getting ready for work.  'Lil' would be sent back to sleep by the noise of the hairdryer, and she would just absolutely love to help me choose my outfit.  I never had any concerns about her development, she was way too smart even from being a couple of hours old, this baby was holding her own head up and being a right old nosey parker!  She didn't miss a trick!  If there is such a thing, she probably had an old head on young shoulders.  I know someone once told my grandmother the exact same thing about me, I was never too sure what they meant, but she is very much like me, probably more ways than she would like!

When our 'Bob' came along, it was quite easy to prepare 'Lil' for the imminent arrival.  She was a proper mother hen before he was even born, and where possible I would involve her in much of the preparation.  She loves her brother so very much, she might not like to admit it half the time because he's 'weird' 'a pain' and generally finds him irritating!  But don't all sisters think that about their brothers at some point.

She does not let Autism or ADHD influence her view of her brother, his behaviour, though sometimes gets a verbal 'thrashing!  I often wonder whether his behaviour held her back from inviting people to our home, and influenced her decision to only have a very small select group of friends.  I suppose when you've experienced a sleepover birthday party and your young brother pee's in your friends shoes, does leave you somewhat mortified and a little bit worried about the unpredictability.

There is a  part of me that has always been concerned that having an 'odd' dad and 'weird' brother, stressed mum may well have contributed towards how she sees her place in the world.  She has to have been influenced by the environment, no matter how hard I've tried to balance out 'normal' (whatever that may be) with the 'quirky'!

Have I ever questioned whether she is on the spectrum? Yep, and she has too!  I am sure she isn't, In my honest opinion she has been influenced by the traits, and yes, there are moments when you think that almighty outburst over something trivial or the inability to make adjustments for someone else's behaviour, or the orderly way we dispense our breakfast might just.... Then she does something else like seeking out a snuggle, or tells you she loves you, or asks me why I look so sad and there is the moment of reassurance!

Not always plain sailing though!  We have had tears before bedtime, she has hated living here on numerous occasions, 'Bob' gets away with everything, we give him more attention and the all time favourite, we love him more!  So far away from the truth, but for her it's real.  For us, we have to acknowledge it does feel real for her and we have had to learn not to dismiss, to be open to change (even though that in itself can be quite controversial), and more fundamental than anything else being able to just listen.  I can't tell you the amount of times she has pushed the boundaries for one's own gains, though, and she has been successful on several occasions.  Sometimes it wasn't worth sweating over the small stuff, it's hard being a sibling of a child with SEN and/or disability, and you have to pick your fights as a parent!

Then you hear a squeal, and this almighty roar of laughter, running through the house like a herd of elephants and you find that one of them has jumped out on the other, or they were tickling one another, or chasing each other around the house with Nerf guns or water pistols.  You find them collapsed in a fit of laughter on the sofa, and you smile, and for that split second you feel the warmth of a job well done.

'Lil' and I know that 'Bob' may not always be there to look out for her, not because he won't, but because he may not recognise when she does need him. I've got time yet to work on that one with him and no matter what 'Lil' says she will always have her brothers back.

I am so very proud of my daughter because despite how chaotic our family life is and what a roller coaster ride we've been on, she has studied hard, got some fantastic exam results, goes to University, has developed a good work ethic (she has been working part time in one job or another since she was 14), and has turned into such a beautiful human being with a good heart.

In honour of National Sibling Day which has just passed, our 'Lil' and 'Bob', through the tears, heartache and happiness, Siblings together forever!

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, and then there was super Jo, who's positivity towards autism is an inspiration over on, 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

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,  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 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!

Tuesday, 11 February 2014

Not forgetting ADHD......

When I think of Autism and ADHD I have this vision of two ginormous A's having fisticuffs and imagine that this is what it's like for our 'Bob' internally.  The two have some similar traits which often can lead to some confusion in diagnosis, but in 'Bob's case these two stood together like regimented soldiers!  Shoulder to shoulder!

 Until 'Bob' was actually diagnosed by the child psychiatrist with ADHD, I seriously thought our life was a journey that we were just going to have to walk down without any help.  I'll never forget the day after 'Bob's ASD diagnosis, we were given a website address, a 'thanks for coming along' and a virtual shove out the door, we didn't even get a leaflet!  We just managed, what else were we to do.  Just managing his day, responding to his behaviour, fighting for support, sitting in the bathroom for hours due to his bowel problems, and always wearing trainers because I was never too sure when he was going to scarper, well quite frankly I was so incredibly tired! 

There wasn't much fight left, and seriously I wondered how long I could carry on.  When my gorgeous little nine year old boy refused to go to school and then announced to Mr Autynary and I he wanted to be dead, I got my second wind.  Mortified that my child was talking about suicide, and death, and not wanting to be in this world was upsetting, but even more cutting was the thought that no amount of love we gave him would  soothe the pain  he quite clearly was experiencing.  An internal pain that he had no idea what it was, where it came from, how to get rid of it, or how to describe it!

Petrified that 'Bob's unpredictability and no understanding of consequence would lead him to take his own life, I insisted an immediate appointment with the GP.  I know we were lucky and not everyone experiences such a speedy response, but we managed to get a CAMHS appointment within the week.  The trigger for 'Bob's anxiety was quickly identified, constant change of teaching staff and a rather dreadful support teacher, and once addressed with school we were able to make necessary changes.  Thank god for the summer holidays!

The road was long, and there were lots of assessments, but when the psychiatrist explained that 'Bob' did in fact have ADHD as well as high functioning autism I was confused.  'Bob' wasn't jumping out of windows, or clambering out of moving vehicles, running around in circles constantly, or kicking the place in!  How shallow my stereotypical opinion was about ADHD.  

Everyone was surprised!  It turns out I wasn't the only one with that fixed opinion either.  Slowly, over time and with a lot of negotiation and tests, 'Bob' was put on ADHD medication.  It wasn't our first choice and we resisted for well over a year before agreeing, but 'Bob' was struggling at school.   He couldn't focus, was distracted so easily, quite argumentative and became this tight little coil ready to explode!  

I wouldn't go as far as to say it worked miracles because that definitely would be an understatement, but it did what it said on the tin, and more importantly 'Bob' was able to access the national curriculum.  He didn't spend days heightened on anxiety or so stressful that literally his and our lives seemed to just stop!  We've got used to living with our mate ADHD, we can put him asleep with a little white tablet for most of the day and respect him when he's not.  

At the moment ADHD and Autism are marching to the same tune, and 'Bob' understands the importance of  his medication (he even reminds me).  'Bob' can identify now when his medication is wearing off and if a situation is not working for him, well, we get to know about it before an emotional tsunami takes place.  We don't know what is going to happen; I hear varying stories about ADHD and possible cures. What I do know is ADHD doesn't have us 'Bob' has ADHD in more ways than one!

Friday, 31 January 2014

And the journey begins.....

There is this incredible difference between thinking about something and it actually happening.  I’ve been preparing myself mentally for our ‘Bob’s transition from what seems an age.  Still struggling to come to terms that my little man is now standing taller than I, and his shoe size is bigger than Mr Autynary’s!  A couple of things have happened in the last couple of months, which give us just a snifter of what is to come.

As many parents in the UK will be familiar with when our little angels or terror teens, whichever is your preference, enter Year 10 there is a rush to prepare them for the ‘outside’ world.  An experience, hopefully in a field of work they are interested in pursuing when the leave education.  I’m sure there are many of you out there know that when you rush something quite often there can be oversights. So when  Mr Autynary and I trundled off last November to the Year 10 work experience parents evening full of hope and exciting thoughts for our boy, what we didn’t realise was the difficulty he would experience in connecting with those typical jobs offered for work experience placements.  After the event we both knew that the information given did not fill us with the reassurances we needed to feel comfortable that ‘Bob’ would find this process accessible.  Shuffling down the queue, and it was quite clear we weren’t the only ones feeling that  way.  Conscious that the person we needed to speak to would identify us as parents of a child with ‘special needs’!  So uncomfortable was that turn to the right!

Our ‘Bob’ was dead set on trying to find his placement within Manchester Airport, he had it fixed in his mind and that this is where he wanted to go and there really was no backup plan.  There was plenty of confusion about the whole process, which just compounded all his anxieties.  There was an expectation that the students should take the lead and have that experience of sourcing placement, researching contact information, putting together their CV and talking to potential placement employers.  For ‘Bob’ that was just not going to happen, and he had convinced himself that it was up to me and Mr Autynary!  If you ask him about himself or ask him to make a decision, his response will be

 “Speak to her”, meaning me!

‘Bob’ does not favour conversation face to face, so how on earth am I going to get him to talk to someone on the phone!  Well, it didn’t happen, I can tell you, flat refusal!  The moment I raised the issue, he got into an almighty meltdown and shut down.  It would take days before we could even slip it into conversation, and with the constant fear that we would upset him we only manage this when he was in really good spirits.

I knew it was up to me to start this ball rolling, I’d already informed school, we were having difficulties, but we still felt that although they were talking to ‘Bob’ about it in school, there was an expectation that he had to complete this himself.   It’s the ‘doing’ bit that was the problem and it was practical help we needed.
Taking the bull by the proverbial horns, I spoke to the work experience placement officer at the Airport.  She was a nice enough woman, somewhat patronising and after asking me where we lived and what school ‘Bob’ went to informed me that we didn’t meet the Airport’s criteria because we were out of their catchment area.  Interestingly enough, she then followed this through with informing me about the criteria of other employers, and typically they would insist on speaking to the young person concerned.  By this point my defensive hackles were up, and I had to explain that ‘Bob’ was on the autistic spectrum, to which she said

“Well, you have to say that one in the first place!” “You still don’t meet our criteria, though!” and “Well employers will still need to speak to the young person!”

Ya’don’t say Sherlock!! 

By this point I am livid and with desperation started flying off messages to people I knew who might be sympathetic and help!  Then I’m outraged, if I’m struggling how many other parents of young people with Asperger’s or high functioning autism are having the same difficulties.  When you actually start to strip back the logistics, support for the young person and risk assessment of the individual needs, the process takes on a different dimension.  One which I think has been overlooked!

How many parents out there in desperation for their children to experience the same journey like their peers, are relying on taking them to their own place of work, or family or friends!  Even more upsetting how many children are left behind at school?

‘Bob’ is now resided to the fact that there is no hope!  I have had some contact from great supporters, but yet nothing has been forthcoming, and conscious he won’t be left behind I’m resided to the fact that he will have to come with me and experience one week working as a volunteer!  Not exactly the industry our ‘Bob’ wants to work in when he leaves school, but if it means he will experience the process of going to work and a working environment then we can tick this off.   Worryingly though how many young people with autism do just that, volunteer, because there are not the employment options out there!  Food for thought.

Monday, 20 January 2014

The Dentist!

I don't know about you, but I am absolutely petrified of the dentists! I'm from a generation that was frog marched to see the school dentist at the local clinic, thrust into a cold dental chair, filings and extractions without numbing, and the unnecessary view of hairy nostrils!  So I promised myself I would not put my children through that ordeal.

From our 'Bob' being little I used to take him with me to my dental appointments, I wanted to acclimatize him to the experience not scare the ebby jebbies out of him, so took the softly softly approach and braved it out myself.  It had worked with his sister so in my naivety thought it 'worked for one it will work for the other one'.  How far from the truth could it have got.  Unaware at this stage about autism and ADHD, just thought he was being a 'little monkey' when he refused to open his mouth for the dentist or the time when he bite his finger.  Well, I must say he's a dentist and should have known better than flaunt a digit near a four year old child's mouth!  We just about managed to get him there once a year, and that was agonizing; The screams, the blatant refusal, the chasing round the surgery and trying to coax him out from under the dentist's desk!  It got to a point when he used to check his teeth whilst he was upside down on my lap on a swivel chair!  And when the old dentist decided to retire, OMG!

There were moments in time that the least of my worries was a trip to the dentist and I will hold my hands up we didn't necessarily meet our checkup dates!  After our 'Bob's diagnosis, our lives levelled out and an acceptance that it was never going to be quite how you had dreamed of and you would just have to get on with it.  The 'normality' of life had to find its place in the new version of ours, so visits to the dentist had to be dealt with head on along with everything else.

Dreading having THAT conversation where you actually have to say out loud, "He has high functioning autism.." and wait for the "Oh right.." followed by an awkward silence.  Assuming you were going to have to take the lead on this and partake with all that autistic information you had soaked up like a sponge; Sharing suggested strategies, website addresses and offering leaflets that you had to do so many other times before with professionals was at the forefront of your mind!

How refreshing to hear " OK, how can we make 'Bob's visits easier?" "Tell me about his sensory issues?" "I'll talk to 'Bob' about everything we will be doing and show him the equipment and we take it all at his pace!"  Had I found an angel? Was this a fluke? Am I hearing right?  

True to his word our dentist took time out to get to know our 'Bob', built up trust and went at his pace.  There were the odd times when we had some glitches but the difference was we were working together.  Our 'Bob's dentist shows him on his high tech screen his x-rayed teeth, explains the dark patches and the light patches, why he has to have the treatment and if he didn't what the outcome would be.  When he struggled with his first extraction and the huge needle used for numbing, the fact it took two appointments to actually complete the procedure did not faze the dentist at all.  

After many years struggling to understand why my children had teeth difficulties, our new dentist was the one who identified that 'Bob' and his sister had a genetic abnormality of the tooth enamel, and it had nothing to do with their dental care.  Slight relief after 'Bob' spent years chewing his toothbrush and eating toothpaste, that his brushing skills weren't too bad!  And it's amazing how effective a free mini toothpaste tube can be on our morning teeth cleaning routine.  Though I sometimes wonder if  it's the buzz he gets as he whips it from the box on the window sill as we make our hasty exit from the surgery!

Our recent extraction last Friday was another successful trip.  Our 'Bob' talks the hind legs off a donkey, but the dentist seems to have the patience of a saint; he's also quite firm with 'Bob' too, and you have to be sometimes or 'Bob' will just go off on a tangent and completely railroad you.  It's remarkable how 'Bob' can change the subject back to the flight path of the new Dreamliner, and how on earth you can make the comparison between it's wind speed and how quickly you can remove a tooth beggars belief!

You can so understand how parents on finding remarkable professionals just want to spirit them away, and don't want them to move on.  Investments have been made in those relationships, and it makes a huge difference in the daily battles; one less can lighten the load so much for families.  Our dentist might not be everyone's cup of tea, and there is nothing 'magical' about his manner, but if you could bottle his attitude and approach carry it around with you, sprinkle the fairy dust on all the professionals you meet, what a slightly less stressful life we would all lead!

Tuesday, 7 January 2014

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!