Wednesday 30 October 2013

Boots n coats n boots n coats




My son beat boxes using the lyrics "boots n cats n boots n cats", it helps him sometimes when he feels like hitting and slapping me or the dog which is his form of stimming (self stimulation).  Sometimes it works, other times slapping out a rhythm on the new TomToms I bought him works but a lot of the time he just slaps and hits. Thankfully the dog is very patient and only loses it when severely pushed, when he’s feeling pain. Same for me really, he likes to slap me on my upper arm and leg for some reason it’s the best part of my body to feel the sensation he needs and it makes the best sound. He’s now 6’2” and filling out and it is getting painful. Of course I tell him not to do it, to stop but that’s a bit like asking someone with tourettes to stop twitching.

There’s no doubt sometimes I need a break but I find it hard to ask.  But then there was Russell Brand, an advertised evening seeing his show down in Brighton was enough to make me ask.  A mini break no less, a day and a night off.  Wondering around the Brighton lanes and in my head I was singing boots n coats and boots n coats. Most autism Mums will tell you that you start to think like your child as you spend so much time with them but at least I was thinking shopping.  Shopping, I mean shopping for things other than necessities and clothes for your child, that wonderful elusive bubble world where you float around looking for things in the dressing up box and Brighton is one of the best.  Then there it was with its fluffy turquoise shimmer, locking in my gaze “it will be mine, oh yes it will be mine” but “HOW MUCH” I shrank away gutted, I couldn’t justify that……could I?  Carry on rummaging was the only solution, around and around the lanes.  I bought a brand spankey new pair of DM’s with fur lining to help ease the pain, those faithful, wonderful friends who know me so well, alas my old ones had been eaten by the dog.  Then the oasis of the pub, the oracle to help me make my difficult coat purchasing decision. Within an hour the deal was done (after a good haggle) and I was swaggering around Brighton in my coat of one amazing colour.

I set the alcohol level to numb in order to keep coat guilt from creeping in and sat down at last to see Messiah Complex. First there was an amazing poet but he talked about consumerism, then Mr Brand  said that if we believe in nothing we will believe in anything and that maybe our lack of belief has led to a worship of celebrity and consumerism.  I agree with pretty much everything that Russell said, even the bit about the tic tacs, and I was nodding and agreeing and laughing and hiding my coat.  I really don’t want to come across as “oh poor old me” but I’ve been in the situation where on a Monday I’ve only had £10 in my account to feed myself and my son for the rest of the week.  My personal circumstances have changed now and things are better but I know the value of money and I’m the one that’s always saying “Is it a want or a need hmmmmm”.  I left Brighton conflicted.

With Halloween here I’m off to a gig to see a band that I loved in my youth and my young man is eager to put on his much loved costumes, so up to the  loft I went this evening  to gather the dusty dressing up box for us both.  And then behind it I saw an old bag that I once used and inside it was the most wonderful treasure that I thought I had lost.  Dresses I had bought from Camden market and the second hand altered clothes stand The Rack and others purchased at festivals and rallies.  Carefully picked out and rescued before I’d lost my youth, just in case. These weren’t just cloths they were the same as my coat, the special ones.

So I know that worshiping celebrity and consumerism will leave your soul empty but it’s hard to explain the comfort of the special ones.  The story that keeps coming to mind is the one where after the liberation of the concentration camps of the holocaust, someone bought the women survivors  lipstick and they apparently applied it with joy, it made them feel like individuals again.  Being an autism Mum can never be compared to a holocaust survivor, absolutely no way, but when you spend 24/7 caring intensively for someone, to be able to have a bit of time off to just float and wonder around and buy that "special one" is important. It’s a reminder that you need to value yourself, to be an individual and allow yourself a treat or two. In fact I’d say it’s vital.


Sunday 11 August 2013

The Quest

Where was I hmmmm, where am I?  When I started this blog that's what I was asking. For the last 15 years the constant focus in my life has been my son, it's had to be and it always will be but that has meant a great deal of personal loss.  Maybe it's the mid life crisis creeping in, the loss of the identity that we formed in our youth.

A couple of years before I had my son I was roaring over the Dartford bridge on my 1971 Triumph Bonneville surrounded by friends after a weekend of partying.  I remember that weekend well.  Riding off towards the beer tent with my best mate on the back of my bike to load up her rucksack with alcoholic supplies for the weekend. I remember trying to convince one of the Hells Angels running the event that I really should be allowed to ride down the fire lane back to my tent rather than weave through the crowds as it was a hot day and the bike was running hot because of the slash cut exhausts but he was having none of it.  We stalled in the heat right in front of one of my best friends ex boyfriends and his mates. Embarrassing! I pushed gently on the kick starter to try and make sure the piston was at top dead centre and then gave it my hardest kick.  A triumph. Off we went again, best friend waving her arms in the air riding pillion.  We celebrated with the beer and danced all night through until dawn.

That kind of feels like where I left myself.  I haven't really ridden a bike since then.  I've lost touch with some of my old biker friends but not my best friend and strangely she's been on the same journey, she has a daughter with ASD.  Both of us know that to ride a bike risks the loss of a parent to our children that are so dependant on us and partying well if we are lucky enough to get someone to step into our parental shoes for a night we then have to try and summon the energy, of which there is definitely less. Possibly a little less inclination too and that's the tricky bit.  I don't really long to be that person so much, maybe now and again.  So where is my self? What do I long for?  One thing I do know is that if we spend too much time worrying about it and trying too hard to look for it we can get ourselves into a real mess.  I've seen a bit of that, mostly in men.

A few weeks ago, at a family birthday celebration, my step sister stood next to me looked at my son and said "He's gorgeous, he's grown up to be such a beautiful young man"  She's right, I no longer have to worry so much, I can let go a little bit.

When my son was first diagnosed there were only a very few on line support forums, one helped me immensely but we seemed to be alone and few.  Now there is a huge autism community all linking up world wide and forming an identity, one of great pride and strength.  I like to think I helped start it by helping to build our own local autism community which is gradually growing.  I want to make it bigger and now that there are more of us I think it can happen.  I want to hold out my hand to new parents, to throw out the life belts and haul them in to a supportive and empowering environment. 

I don't doubt myself these days or measure myself by the behaviour of others around me as maybe I used to do.  I wouldn't argue with a Hells Angel now but I've stood up to much more in the last few years, the system, the attitudes of others and to personal loss.  I have the love of my son, my family, my friends and my partner around me.  I'm an autism Mum that's quite enough.


Saturday 30 March 2013

Crucifixion......

We're told not to talk about politics or religion so maybe, with that in mind, it would be better to talk about bunnies and chocolate, that would be nice.  Except this morning at 7.30 my mind kept nagging me with these things called thoughts hmmmmm.

I like Jesus.  Why and however he did what he did, whether it was divinity or his own personal wisdom, I like what he said about a lot of things.  It's not surprising people felt a deep feeling of recognition when they heard him and joined him.  But he held a mirror up at the powers that be, he saw them for what they were, flawed human beings corrupted by wealth and power. So as Jesus's followers grew and more people saw what he saw the powers that be became threatened, already feeling uncomfortable in the knowledge that their reflection was fundamentally wrong they had a choice, accept it and change or demean and diminish Jesus and his beliefs and hopefully destroy him.

Shame they chose the latter, but he is still an important revolutionary in my eyes, along with people like Gandhi, Desmond Tutu, Nelson Mandela, maybe even John Lennon. Imagine what the world would be like without them. Jesus went about quietly talking to people, trying to change hearts and minds and he practised what he preached, he was what he preached.  I really dont think that if his followers had overthrown the powers that be at that time and put him in charge, that he would have surrounded himself in finery's and gold, it would have gone against his core beliefs and destroyed him from the inside.

I don't follow a religion but I like the philosophy of Peace and Love, maybe its from being a child in the 70's. Most of the religions, as I understand, are based on Peace and Love and maybe all the other revolutionary's that they speak about were all going around quietly changing hearts and minds.  Imagine now if they saw us arguing over which one was best, going to war and killing people over it. It would seem wrong to argue over who was wiser; Nelson Mandela or Desmond Tutu. So no I stay well away from religion and stick to celebrating the best of humanity and Peace and Love.  Yes I'm an old hippy.

I awoke this morning and found myself thinking about Jesus who died for what he believed in.  When we stand up for our beliefs, the core ones, the ones that form our selfs it takes a strong mind and determination and a deep love for those beliefs.  People that are doing you wrong will always try to belittle you and make you the monster instead of them in order to justify their behaviour and if we're not strong enough we can let them destroy us.  I've been there a few times, at the point where I'm about to give in and let it happen but luckily I've found the determination to resurrect my self again and stand tall. 

I'm not sure whether Jesus actually came back to life after being crucified (although my son thinks that would be cool as it would make him a zombie) but I do know that what he stood for didn't die, people are still listening, perhaps that was the resurrection and the miracle, people practise what he preaches, reaching out with Peace and Love to this day.  And another miracle is when we can survive, when we can get back up after we've been brought to our knees and still have our core beliefs of Love and Peace intact and not damaged or tarnished.  I'm not totally sure what forgiveness means, to me it means understanding the reasons why people hurt you and accepting them, realising that to err is human and that we're all flawed but not sinners.

I've just polished off some Easter Chocolate for breakfast and a cup of tea and I'm looking forward to the eggs and fluffy bunnies.  Here's a picture from my 1970's children's bible to celebrate Easter :)