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!

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!

It Wasn't Me! The Reality of living with Invisible Vulnerability.

It's taken me two weeks to write this.  Honestly I have been incredibly busy working in my Parents Forum/Sportism capacity, spending time trying to make sense of the SEN Code of Practice Children and Families Bill and organising a children's Xmas party. Though the thought of writing this particular blog would mean I would have to face the stomach churning fear I have for my son's future again. The realisation that no amount of prior preparation and planning, reassurance and creating a shed load of life rules can prevent the overwhelming urge he gets to do some downright stupid, unpredictable, damaging, dangerous, illegal (Oh yes you heard me correctly and I will say it again), ILLEGAL things.  This is Invisible Vulnerability at its best and I have had the corker of all corkers.  Find me a hill top because I really want to scream!!!

It's difficult to explain to most people about the invisible vulnerability of children on the spectrum, and in particular for those children on the higher end who outwardly look like ordinary children in ordinary houses on an ordinary street anywhere in the world!  I will try to explain about our 'Bob' and his latest all mighty 'this is the best one yet' stunt!!!

Two weeks ago  I got the most unpleasant surprise I have had for a while.  The sheer shock made me feel incredibly sick and for a split second lost the ability to make sound judgement or rationale.  The Postman usually arrives around 10.30am, we don't get a lot of mail because everything is usually fired off electronically these days so it's quite a novelty to get some.  The usual 'Occupier' 'Homeowner' mail on the doormat along with a letter from Tesco Banking.  Now normally I would throw something like this in the paper bin because it's usually junk.  Thank goodness I didn't!!!  There before me was a letter asking me for more information for my credit card application.  WHAT credit card application???? I'm a stay at home mum/carer, what the.... You can imagine it can't you I'm pacing the kitchen, reading this letter again just to make sure I've got it correctly.  I am so mad and the who, what, where, when is going through my head.  Instant reaction and I'm on the phone dialling the 0845 number, cursing that one too because it will cost me a fortune!  

Blooming annoying! I get through to a Customer Service Operator, take a deep breath and go through the story.  I'm put on hold, waiting to be put through to the Fraud Department.  No joy there, nobody is answering so I leave a message.  I'm told someone will get back to me the same day.  So I wait. Nothing. I try again before going for our 'Bob' but by this time I've had several cups of tea and thought about it.  I remember two weeks earlier having one of those dismissive conversations with 'Bob' about the Sainsburys credit card which gives you Nectar points.  'Bob' was doing a good job putting his case forward for Mr Autynary and myself to get one, which obviously we swiftly declined.  I didn't think any more of it, that was until that day.  

'BOB'! What had he done now? Wait till I get him in the car! I'm thinking all this on the drive to school, and for one shocking moment I can't remember how I drove a quarter of a mile down the road because I'm head chunnering.  Amongst a sea of mauve I see 'Bob' making his way to the car, now I  know I have to be careful because one slight whiff he's been rumbled I will not get any ownership from him at all.  So there I am diplomatically interrogating 'Bob'.

"Is there anything you need to tell me about Tesco Banking?"

"Noooo" "What you talking about?" a rather shifty answer and a rather puce looking teenager.

And with slight exaggeration

"I have spoken to the Fraud Department of Tesco Banking about an online application for a credit card which I have no idea about or who's applied in my name, do know anything about it?"

"Well it wasn't me!" quick sheepish answer!

"Well the thing is they have the computer IP address and if I haven't applied for one they are going to pursue the person who the address belongs too, so if I was you  I would tell me what you have been filling in on the Tesco's website because they are calling me back?"

So I then get an embellished story about how he thought he was registering on the Tesco's Direct website, and that he knows not to sign up for things in my name, etc, etc, blah, blah.  And quite frankly that's what it sounded like to me.  I knew he had done it so my mind was now shifted in trying to resolve the issue, and I had better check with a credit reference agency to double check that I'd not had my identity cloned or that the little tinker hadn't signed me for HP on a 737 aircraft!

You can imagine, can't you?  I ask him again if he has done anything I need to be aware of and the answer came back reassuringly "No!" So why then was I surprised to go through a similar situation on the following Monday morning with an OPENED Tesco Banking Savers Account in my name and in a separate envelope a 'Thank you for arranging a direct debit into your new Savers Account' letter.

By this time I'm furious!  Then I had to stop. The wave of emotion slowly makes its way up through my body and I find I am staring out of the window in tears.  I know deep down that a mist of Autism and a wave of ADHD have created a difficult situation, a dangerous situation, a vulnerable situation..... VULNERABLE.  I want to scream and scream and scream.  I have to phone up Tesco's Customer Service yet again with a story which sounds like I've made it up, tricky decisions to make about having my details be put on a credit fraud list so if it happens again I have a little red flag over my name.  Hoping that they don't want to prosecute for fraud, or any other law he's broken in the process.  OMG! I would have to tell Mr Autynary, well that would go down in history as the worse thing possible and it would be ALL my fault.  Never mind 'Stop the World!' I just want to disappear into the ether and I don't want to come out.  

I manage to compose myself when I pick 'Bob' up from school and I am quite frank with him.  By this point he really does know the games up and has to admit to everything.  I don't get an apology, lots of explanation as to how it happened and another reassurance it won't happen again!  Somehow I don't think this will be the case and with all the will in the world and lots of hoping, I don't think 'Bob' can make that promise either, which is so, so, so sad.  I don't think I can ever get complacent or allow myself the time off from pre-epting those predictable or unpredictable events which are yet to bestow their troubles on our doorstep! 

What Have I Done With My Life?

I do wonder some days what goes through our 'Bob's head.  I mean he does come up with some weird and wonderful ideas but this one came from left field.  As most of you gather our conversations usually take place in the car to and from school so don't be surprised this one happened after I had picked him up.

'Bob' "I've been thinking..."

Mum "That's dangerous!"

'Bob' "What have I done with my life?"

I'm trying not to avert my eyes off the road but one eyebrow lifting stare to the left is required at this point...

Mum "what are you talking about, you are only 14"

'Bob' "well, I mean I haven't done anything I can remember"

Mum "you've done loads of stuff, you've sat in the cockpit of the concord, been on a train simulator at the engine works, been on lots of holidays, building a plane in the garden” Yes that last one is real!

'Bob' "yeah but what have I done with my life, I need to start thinking about my life...”

How do you respond to that...? I mean I ask myself that question all the time self evaluation doesn't come easy.  I'm hopeless at it.  I'm curious to see how he does manage it.  For 'Bob' the inability to make simple decision is problematic in everyday life so to make such huge whoppers for a life plan is going to be interesting.  His mindset and latest obsessions tend to dictate what he and we do next because unwittingly our lives follow his. Our routine for everyday tasks is firmly set, clothes in set order, when and how we eat breakfast, the morning constitutional, even down to the contents of our lunch box doesn't change day in day out.  How is this young man going to build these into his life plan? Quite simply that is his life! Just because he does things quite rigidly and methodically doesn’t mean it's wrong. Frankly, if life was that orderly most people would find that they have more time on their hands.  Without him realising he gets time management down to a fine art.  It's me that pushes those boundaries.  I'm the one flying around by the seat of my pants! Don't get me wrong I'm not scatty all the time.  I love lists! And boxes and a home for everything.  Maybe he's got something we could bottle!  I still have to make the decision about which clothes get laid out, the contents of the cereal bowl, reminders about cleaning teeth and washing his face though.  If you asked him coco pops or weetabix he would point in my direction “she’ll tell you” would be his response.

Ah and then we have the inability to accept change even if it’s in an orderly fashion.  It causes unhappiness and anxiety which can reach astronomical proportions verging on exaggeration. Then we get the shut down so nothing gets done.  Too many obstacles get placed in the way, and you might as well say goodbye and 'san fairy ann' to sound reasoning and logic! And then we stall!

OK he's 14 some may say too young to be thinking so far ahead, should be enjoying childhood! We don’t have that luxury of time at all because everything takes an age to plan and because of those dreaded obstacles it could take us until he's 40 to get where he wants to be.  'Bob' has so much going on in that little head of his, so many ideas, dreams, lives he wants to live I don't want him to lose that spirit in the process.  We are here to guide him and help him to achieve them; some are so outlandish; at the moment he is planning on buying his own island and creating his own country!  Now you and I know that it's not that straight forward, but in his head it is.  Mr AUTYnary and I will go along, helping him find out information, even create his own family crest.  Knowing all too well that at some point we may have to bring some of those ideas down to earth with a bump!  I want him to embrace that entrepreneurial gumption, I want him to have those opportunities that could see him reach those dizzy heights of success, and I want him to have those chances!  Even if it means I have to don on a life jacket and climb into a dodgy looking motor board dingy, travel the treacherous Irish Sea and climb into a tent on some windy remote uninhabited island off the Irish coast just to find out that setting up your own country might not be a good idea after all!

Hey Ho No. 2 We Are NOT Going To School...

Boy what a difference a day makes!  My last post was all about the first day back and I seriously thought that we would at least get to the end of the week until our first blip! OMGosh! Smack me in the face with a wet fish, twizzle me round and kick my derriere!  It transpires we couldn't get past the second day without an monumental, rip-roaring, completely lose the plot outburst.  Our 'Bob' saved this one just for me when I picked him up from school yesterday.  

It's moments like these that the complexities of having high functioning autism and ADHD are brought home, and I am reminded of the internal war he suffers.  Initially we were told our 'Bob' had Semantic Pragmatic Disorder and I scoured the internet to find out as much information.  I was like a dog with a bone! I had to do something, didn't know what, but something.  My emotions were trying to creep out of the suitcase, and the more I researched the more power I had to push them back in there.  In my mind I was charging right up to the gate, hammering on it, slapping my chest then gesturing with my hands " C'mon bring it on!" just like the gangster films.  If I'd known then what I know now I would have saved that one for later.  I used to sit in the dark with only the light of the computer screen illuminating my tear sodden face, because the more I read the more I realised that this wasn't just a blip in our speech and language development whatever it was it was going to be life-changing.  You all probably wondering where Mr AUTYnary is? I'm sure this will resonate with some of you out there, the bucket of sand was more inviting!  I knew my journey for knowledge or anything else relating to our children to be honest was going to be a solitary one.  What I didn't realise was how close my son and husband's little quirkisms were and how by learning more about our 'Bob' did I learn to understand my husband.

Within 2 years we had gone through Semantic Pragmatic Disorder, Autistic Spectrum Disorder, and then to Asperger's, and our specific learning difficulty - Dyslexia thrown in for good measure! By the time our 'Bob' was 9 yrs old we managed to add ADHD and the diagnosing Consultant decided because 'Bob' had developmental delay in speech it was not Asperger's but High Functioning Autism.  Confusing to say the least but my dog and bone attitude meant that the acquistion of information at the time was top priority.  I had to get my head round it all so I could help 'Bob'. 

Not that I was much help yesterday.  The incident was simple - last lesson of the day, one child winding up our 'Bob, questioning about friendship with girl (who I might add has been one of two friends he has had since the beginning of secondary school that 'get him'), 'Bob' does not want to answer (because you just don't!), pick, pick, pick throw a piece of lego at him and BOOM! Mum arrives and we start.......we go on about how it's always him they pick on, nobody listens, it's not fair, nobody punishes other people's bad behaviour, he always gets the blame, and then for the real cruncher, "It's all you and Dads fault I have this autism and ADHD", "your the one's who have given me this cell", "ADHD won't let my brain calm down" and "Autism and ADHD stop me from fighting my own battles".....and we went on, and on, and on...  

I try the calm approach, trying to reassure, trying to remind him about discussion we had about other people and how they treat us, and that some children find that once they get a reaction from you feel that they can do it time and time again but more importantly how do we control the situation when this happens....I pulled out everything from my mummy armoury....Could I comfort my boy not a cat in hells chance.  I was driving while this was happening, heading for the motorway for a little diversion, I hoped it would work because I was running out of ideas!  Our 'Bob' was firmly told that the conversation would have to stop because I was driving and I couldn't concentrate on his issues and drive at the same time I would have an accident.  Ahhh silence!! The rule card played off.  

I took him to a shop, many will say not a bright move because we don't do supermarkets, but it worked.  We bought our items, we grabbed a coke and some fries, went to get in the car and this young man walking out with me says

  

"Mum, I think I've calmed down now"

"It's my ADHD that makes me do that"

 "I think my outburst was because it was the end of the day and my tablet had worn off" "

I found myself having a moment... my goodness I never thought the day would arrive when my boy would be able to make a complex analysis of his own behaviour and attribute it to his condiiton.  My word our 'Bob' has started his journey into transition..

Hey Ho! Hey Ho! It's Off To School We Go....

The dark cloud had finally immersed our house this morning! I feel I should be playing some dum dum dahhh music in the background.  This year there was no new bag, no new shoes, no new pencil case or pens.  In fact the blazer became such a contentious issue; well quite frankly I just threw my arms up in the air and accepted defeat! Well not completely! Like most mums and most mums with children on the spectrum I try to be two steps sorry two feet ahead.  I cope by having backups, backups that nobody else knows about, those secret little draws or hidey holes stacked with contingencies and a mind of solutions and resources.  It fits in with my strategy and allows me that indulgence of taking things up to the wire - Meltdown Management!  I laugh and tell people I live by the seat of my pants, which is partly true my time keeping is atrocious unless we have Mr and Master AUTYnary with me (where to start with that one it is a post in its self!).  I rebel you see, not often it’s just the teenager in me!

So there I am early this morning washing out pencil shavings out of the bottom of old case, decantering last terms books from rucksack and frantically polishing up a well worn pair of school shoes in silence.  Re-pressed the trousers, shirt and tie - check.  Clothes in the right order - check.  Shoes at the bottom of stairs - check.  Blazer no more said about that - check.  OK let's go.

I'm mindful about our 'Bob's anxiety, even more so this year because he has been so vocal in expressing it!  His school have been really good supporting him. They have spent lots of time talking about social and emotional issues, helping him develop his own strategies to manage these aspects of his life in particular whilst at school and delving into the world of social interaction from which he will recoil.  So I was confident if I made the call and spoke to the Learning Support team, between us we could set about lessening the impact with some discussion and reinforcing positive messages of support. Call - check.

So engrossed with the uniform debacle, forgot all about the fact that 'Bob' had missed the last two days of the summer term because he had an emergency visit to hospital.  Now was this a factor in the anxiety? I mean we didn't fully complete the school term, didn't get to say those goodbyes and the reminders that come with closure of an academic year.  SIX WEEKS ON? Surely not.  I know my boy can hold onto 'botherings' but this one is going to be a record.  The ability to be consumed by irritations, and produced hours and days later is a key skill he developed quite early on.  One in which I usually see coming!  Patterns of behaviour don't generally change plus I know my son! School, being fantastic again, have suggested they get his TA to have a chat with him and will try to discuss how going to hospital made him feel.  I thought "Good Luck!" That old chestnut had been and gone, but there was the off chance he may share the experience!  What they're likely to get is a grunt!

I try not to bellow up the stairs but for a split second I forget.

 "C'mon lazy bones up you get, It's school time!" .....Ooops

There's clonking and banging, and shuffling of feet, then bang, bang, thud, bang, thud....he presents himself with a blanket wrapped round his head.

"Where's me breakfast?" I point in the direction of a breakfast bowl, glass of orange juice and medication carefully placed in a line.  So things just never change and the order in which we receive our breakfast is one, the order in which we put our clothes on and the order in which we scrub up in the bathroom are the others.  

Reassuringly I let 'Bob' know about my conversation with school, to which I get a grunt! I pass on the information about where he goes, what time and how the timetable will look today, I get a grunt!  We manage to not pace the hall but I can see the anxiety is taking its toll, and what he really wants me to do is to get in the car and arrive half an hour before he needs to be.

We don't talk on the drive there.  I pull up and 'Bob' grabs his bag, gets out and disappears in the sea of bobbing heads.  His anxiety may have lifted slightly but mine has just increased. And did he have a good day...no idea he doesn't want to talk about I just get a grunt!

Follow the yellow,red, blue, orange, purple, pink brick road...

I can't believe I'm here! Bloggingland that is. *giddyasakipper*.  I've toyed with the idea of a blog for about 6 months and never been brave enough to take those tentative steps down the path.  My reason you may ask...Our 'Bob' and his transition into adulthood! Our 'Bob' was diagnosed between 6 years old and 9 years old (the diagnosis didn't all come at once surprise, surprise!) with high functioning autism/ADHD, he has a specific learning difficulty - dyslexia.  As his Mummy, Advocate, Chauffeur, screaming at board, cry on shoulder (not that happens much) and general good egg I have the ebegeebees about what the future holds for him and us.  I hope you enjoy our journey and all that it brings, I will try to keep it lighthearted and funny but in my world there are no guarantees!

Our path to the autistic world started life as mere meadow clearing when 'Bob' was months old.  He was THE most placid baby, gorgeous blue eyes and blonde curly hair but suffered from terrible baby asthma/eczema and an intolerance to cow's milk.  As he got older things seem to jump from one frying pan into an even greater one (I will save The Nursery Years for later they are a hoot! honest).  We already had 'Lil' she was a happy 6 year old, bright as a button and met her milestones in double time, clever little thing.  Naively I was waiting for it to all happen the same again. I was a working Mother and proud of it, and just because I had another baby was not going to stop me being the ultimate Super Mom! I was the epitome of Diane Keaton's character in the film "Baby Boom"! Who said I couldn't have it all!  Boy folks did I come down to earth with the biggest bump you could have ever experienced.  Crikey! I had shoulder-pads for goodness sake and I sat around a board table delivering statistical information.  I performed miracles most of the time, bent backwards making tea and coffee whilst balancing my mobile on my nose like a seal!

I gave up work, simple as.  My priority changed when I realised my Son, my little soldier was spending more time sat alone on the naughty mat than doing any other activity when he wasn't with us.  I knew there was something wrong, I just knew in my heart of hearts he was not meeting milestones, life was challenging for him and us, nobody was forgiving for his behaviour and this poor little boy was struggling in the sea of life.

I have been fighting his corner ever since!  I think I can safely say our road is one of many colours, some parts are brighter than others and some are down right drab.  I walk this path because I have too I don't pay too much attention to its appearance but I do like company so if you are up for it let's go for a little walk.........!