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!

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! 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!