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!

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!

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!

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

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!

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!

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!

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!

And A Happy New Year To You Too.....

It's that time of year again where we all sit back and reflect on the years successes's and failures, those moments of personal reflection, the if onlys and what ifs, and the rush of steely determination not to let it happen again next year.  The added pressure we put upon ourselves to set some resolutions, just because we feel we ought to! And the prospect of struggling to achieve them because January is probably one of the nastiest of all months in the year for everything; weather, lack of money and the deprivation of all things warming and comforting because you're on a diet!  It's one of those times that I feel the encapsulation of our 'Bob's autistic world would be a much better place!

His only concern is to ensure the creation of another virtual airline, and the offering of sustenance because he can't possibly leave the hub of all activity i.e. The PC!  Mr Autynary is very much the same mindset, no looking back (because it's already happened), no self reflection (because we just don't do that inward looking thing) and certainly no resolutions we couldn't possibly make a decision which one!

This one I know for sure, I'm on my own!  That oh so familiar saying "If you told me that this time last year I wouldn't have believed you...." is very firmly in my mind at the moment because this last year has been filled with extraordinary events and life changing decisions.  I've shoved myself over 'that invisible line', internally kicked and screamed out of my comfort zone and cried my way out of uncertainty.  I have rekindled my relationship with tenacity and have enjoyed inviting in self esteem along for the ride.

Christmas has been and gone, and we have survived! Just!  Nothing changes for us at Christmas the routine stays the same year in year out, albeit we were a little late this year getting stuff organised due to the renovations.  Our 'Bob' managed to eat his soup at the dinner table Christmas day but the plate of food had to be eaten in another room!  Our 'Bob's presents were as instructed and if I had diverted from the list I certainly would have expected an almighty meltdown, it saves anxiety all round if we just play by his rules during the festive season.

We have entered 'no man's land', y'know the time between Christmas and New Year which gets lost in overindulgence, some rather ancient clips of  a Morecombe and Wise Christmas special and re-runs of all the Christmas films ever made!  Throw in Kirstie's vintage Christmas crafts and everything grinds to a halt.  There is a moment in time where I think is this my 'Black Dog' returning or is this just Christmas anti-climax.  It's been such a long time since I have experienced 'ordinary' or 'normal' I couldn't possibly work it out.  I know that bloody 'dog' is loitering somewhere in the background and if I'm not careful will push its way through the back door.  Anybody who has suffered or is suffering from depression will know that there is always a possibility of it sneaking in when you least expect it; Like an uninvited guest who just doesn't pick up the clues to leave!  Well it's not invited to this party!


Where are we going to go next? Who the hell knows!  2014 is holding surprises and a lot of hard work but I say 'Bring It On!'  What I have learnt from last year is to go with it, hold on, it might be a white knuckle ride in parts, but just hold on!  There is a plan loosely lodged somewhere in the grey matter because we have to have a routine but personally I haven't set anything in stone.  What I will say is that I am not going to close any door until I have fully investigated the opportunities.  I have to keep reminding myself that it's OK to have a look, you are not committing yourself to anything.  I have choices and I am the one who will have the final say!!

And my message for the New Year; Acknowledge 2013 and respect all that happened, and then bloomin' hold on tight for 2014! Don't ignore possibilities or opportunities no matter how scary they feel! And in time of doubt or upset remember there are people out there who will support and comfort just know it's OK to reach out.

To you all a very, very sincere Happy New Year and a wish that 2014 will be a year of prosperity, happiness, hope and loads of laughs XXX

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!!!

And The Walls Come Tumbling Down Again.....

Life really does give out its curve balls too generous; I do wish it would hold some back for a rainy day!!!  I realised some time ago that having a child on the spectrum I should be prepared for surprises at a drop of a hat.  Saying that I still have moments of complacency and recently I thought we had it all sewn up.  Well certainly for the immediate future! Our 'Bob's curve ball came round that corner so fast it took the stuffing out of all of us.  

'Bob' has suffered with, one can only describe as, 'déjà-vu' type headaches for nearly two years and fast pulse probably longer than that.  The suspicion lay very much at the door of his ADHD medication, and the Professionals seemed to confirm this or certainly wanted it to be so.  We dragged 'Bob' to all sorts of appointments.  The poor lad has been prodded and poked, his head has been entwined with wire and sticky pads, and we’ve even seen our own heart pumping thanks to ultrasound!  It was a technological exercise recording his heart rate and passing the beeps and blips down the phone line, which of course I can now add to my skill base!  So to have this all confirmed at the beginning of the year as medication induced migraines and sinus tachycardia was a relief! Even though the names would conjure up something horrendous they were in all tense and purpose manageable.  Now then that's what we thought......

The assessments were long gone in the past and 'Bob' was gearing up to finish school for the summer holidays in July, and looking forward to a well earned rest.  The end of term is always slightly stressful because the normal routine is off kilter, and the rules become quite lapsidasicle.  This particular day didn't start too well, and my little 'big' man was complaining he felt unwell.  I sigh quite heavily at this point to myself, and the wonder that somehow I could have prevented what happened does flash through my mind. 'Bob' does have a diva side, and I have to deal with the here and now, busy morning and I really didn't want to have to pamper that shenanigans.  I drop him off at school; go back home and start to plough through the mammoth pile of washing.  I had such an uneasy feeling that day, I felt odd, couldn't put my finger on it just something was niggling.  By lunchtime I've pushed that one to one side and I'm contemplating a little bit of retail therapy! No such luck! Mobile phone goes off.  Not many people phone my mobile only school.  So I knew it would be them, and the possibility it was the call to come and collect a poorly 'Bob'.  Guessed well... it was just that.

He looked dreadful, sullen and pale.  I'd never seen him this bad.  I just about get out of him that he's had 5 of these 'déjà-vu' migraines. BOOM! One after another!  If I could just get him home and put him to bed, darken the room and give him a couple of paracetamol he would be fine.  Great I remember we don't have any!  'Lil' is at home that's the answer, I'll leave 'Bob' with her and quickly go and get some.  If only I had listened to the gnawing in the pit of my stomach, and the pop-in thought he may just have a fit!!

Twenty minutes later I get a call that no mum really wants to hear whilst sat in the middle of the ASDA car park.  Our 'Lil' is hysterical, sobbing I can barely hear what she is saying but the words "Bob" and "Fit" jumped through the hand piece and gripped my throat.

"Call Ambulance" I shout, "I'm on my way!"

Don't ask me what I was thinking; I drove three miles like a woman possessed.  I didn't particularly care if I got caught speeding, but I was bothered I didn't kill anybody!  There was a sense of surrealism, and almost like the car was hovering above the surface of the road.  I don't recall any other sound than the car's engine.

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 I'm not too sure whether I put the hand-brake on, but I abandoned the car somewhere on the road and ran!  I don't know how I stayed calm, just don't!  My daughter is in hysterics running between the lounge and kitchen, and there is my boy on the living room floor!  I can't thank 'Lil's boyfriend enough.  He had the foresight, and calm disposition to take charge of the situation.  He kept my boy safe and put him in the recovery position when he had finished fitting.  Just in time for mum, 'Bob' throws up and starts thrashing about. The ambulance men were wonderful, 'Bob' was really uncooperative, thrashing around and he just kept on throwing up.  I really did feel like I was the one having an out of body experience looking down at him on the gurney.

We spent over 8 hours at the hospital and with a promise to come back in the morning to be discharged properly by the consultant, we headed home.  The start of another long journey for us!  Poor 'Bob' he was absolutely shattered, and so was I!!

Months have past and we haven't had any more 'déjà-vu' migraines or a seizure but the follow up appointment confirmed that my little man's experience was an epileptic seizure and further investigation needs to be done.  So more sticky pads entangled in his unruly mop! And of course this has an impact on everything else.  Nothing is straightforward!  'Bob's ADHD medication cannot be increased, wears off too quickly now and is having an impact on his afternoon lessons. Sensory issues are increasing and this increases his anxiety well that one is another story! The one blessing is that we have managed to persuade 'Bob' to get back into his high bed; After the seizure his anxiety went through the roof he thought another one would happen when he was in bed so he took his mattress off and put it on the floor.  That's where he had slept since July.

If somebody had mentioned co-morbidity before I'm not sure I would have paid much attention, but I sure am sitting upright and paying attention now.  Never mind the wet fish, get me a cold flannel, feathered fan and a cabaña boy!  We are going to have to make changes in school (another meeting!), changes at home (this one SHOULD be easy!) and in fact changes in just about everything we do.  I don't see another fight on the immediate horizon, I see some blending needs to be done with what we've got it and I feel it will be like putting on a new pair of glasses, seeing clearer the job in hand!  We will have a new set of professionals to become acquainted with, and one service we have never ventured in Occupational Therapy.  'Bob' and I will be putting together a sensory bag not box for the car; with one of his blankets, some food and drink, and a little something which might help calm him down.  We've just got to get over the anxiety of actually having one in the car;

"For goodness sake I'm 15 Mum!"

 Need I say anymore...Teenagers!