Back On The Frontline

We're back.......... "Run for the Hills" I hear some of you shout!

I've re-started this blog over a million times, and with every stroke of the keyboard keys just wasn't happy.  Where have we been?  Not far, just my priorities changed.  For those parents who are familiar with transitions will appreciate the saying "when the going gets tough, on goes the armour".

Life was not being kind to our 'Bob'.  Exam year, revision, future decisions, and more decisions = Stress, anxiety, low mood, and lack of self-esteem and confidence.  We needed time out to concentrate on his issues and clear our minds to be able to deal with the decision making placed upon him by the transfer process from his Statement of Education to the new Education, Health and Care Plan.  What a shambles!

Hang on a minute whilst I drag my soap box out from under the stairs.  Now I've been involved at a strategic level locally, wearing my professional cap for a couple of years.  Even having this knowledge did not prepare us for the increased stress and anxiety on our household.  Where was the impact study on decision making process for young people?  Where was the consideration for those young people 16+ who were deemed able to make their own decisions yet are known to struggle with communication?  Where was the discussion around and the plans for those young people who may be affected by mental health issues?  I believe in the principal of the changes, but boy, you can tell that political timetables were running the show.  These changes are the most significant in over 30 years, surely someone would have realised that perhaps squeezing it all through at the same time might be a tad bit optimistic, and not without its prisoners.  My son is not being one of those prisoners, I will NOT let this happen.  So many parent carers have dusted off the shiny outerwear and got out the Brasso, for something we were reassured would not be another battle.  However, this is what it has turned into!   All this gives new meaning to the lyrics "Walk a mile in my shoes...."  Well in this case OUR shoes.

We can all look back in hindsight and make judgement.  The preparations for this have been ongoing for over four years, surely these questions were asked and discussed over a couple of glasses of Pinot Grigio in the Parliamentary Members' Dining Room!  Personally, I am, and I'm sure I'm not the only parent carer out there, exasperated by it all, drained of every ounce of unused energy.  Not that there was much left.  

We as a family have had to change direction, change strategies, aspirations and goals.  Have you noticed the elephant in the room......?  CHANGE!  It doesn't take a genius only someone who is prepared to put in the time to find out what affects young people with Asperger’s or high functioning autism. No need to move the earth, sun or moon here.   So much for the process to be person centred, stumbling your way through it just makes a mockery of the whole ethos!  Soap box put back in its place.

So as I'm typing this our bleary eyed 'Bob' demands clean clothes, but not any old clean clothes, pyjamas!  Pyjamas, it's three in the afternoon and he has only just got up!

"Joggers?" I ask

"No!" proceeded with what seemed to be a 2,000 word verbal essay on why we can't possibly where these particular joggers.

"No PJ’s I'm afraid.  Tough boobie doos, joggers it will have to be my boy!"  

Disgruntled, he disappears to examine further the objected joggers.  It doesn't take too long before he is back downstairs and the whole episode has been forgotten.

Life!  Crikey in for a penny, in for a pound today!   We have a new addition to the family, a 10 week old kitten called Roman, who insists on sitting on the keyboard whilst I'm typing.  So in the true meaning of inclusion here is a little insert from Roo.

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Don't know about you guys, but I've always wondered whether it would be obvious to see those genetic personality traits we all attempt to seek out in our offspring.  It turns out our 'Bob' is a chip off the ol' block and very opinionated like his Mother.  In our attempt to spread our 'Bob's social wings, he has joined a local young person’s forum and Youth Cabinet, and has thoroughly enjoyed it.  He continues to strengthen his ability to voice his views and opinions on autism, disability and the World, and hearing him talk about his difficulties has opened my eyes and my mind to all the other possibilities for his future. He brings tears to my eyes when I least expect it.  Incredibly unpredictable.

Knowing how difficult it is for our 'Bob' to put himself out there, he challenged perception and his own demons, and put himself forward for the local Youth Parliament elections.  Now just putting your name down can be harrowing, but bless him, he wrote his election speech and filmed his election video which was sent round to all local schools.  We went through every result possible throughout the couple of months wait.  Finally the vote count was on, and a reception at the Town Hall meant that 'Bob' overcame a huge amount of social anxiety about unfamiliar places and people to attend.  I was sent away with a flea in my ear because "nobody else will have brought their mums".  Sad face!  I waited in the car park for ages.  

His face said it all!  He was last with 303 votes, disappointed yes.  How do you recover from that blow?  With a lot of positives and a bag full of love.   The fact 303 young people voted for him was incredible!  He was my Hero, it wasn't about beating someone else, it was the 'doing it', it was pushing yourself irrespectively of his internal turmoil to try something new.

With reassurance I told 'Bob' he could try again next year, to which he responded with an emphatic "No".   The embarrassment and now known anxiety had left its mark, an episode in life ticked off the bucket list but NEVER to be revisited again.

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!