As I’m on my tablet, this will have to be quick.

While Andi was happily occupied today I got talking to such a nice guy.

Life does dreadful things to some people and often (but not always) it makes them rather special. Inside this man’s poor broken body, horribly affected by psoriasis (he says it was triggered by stress) resides the most beautiful soul. The light shines out of his eyes with a humour that defies his life experience. The things those eyes have seen, and the tasks that body has had to do before it broke, would make the strongest of us weep.

He doesn’t want pity, and I wouldn’t dishonour him with giving any. Respect is what he deserves – respect, support and love. He helped others in wartime situations as a medic and you would think that service would be honoured. Not so. He’s been homeless and now scrapes by.. just.

Now he sees the army very differently. He thought he was helping, but now understands it helps no one in the long run.

One day humanity might change its path, but not while there are profits to be made from the blood of little children.

This week children died in their school in Florida, and every day all around the world children die at the hands of men with guns.

Keep it to myself

Big news! I’ve got a cold. I thought my last blog was a bit cheesy and over emotional, so I should have guessed something was up. I suppose when something goes wrong with our bodies, it reminds us we aren’t just a head with a zillion thoughts after all. No good having a brain if the vehicle to transport it around isn’t working as it should.

I feel quite sorry for my body actually. Usually I pay it very little attention and that’s not much good is it? I’m such a human. I take all the good things for granted, piss and moan about the bad, only notice what I’ve got when it’s gone… all that kind of over thinking, over worrying over everything kind of stuff.

The thing about a cold is that you’re not so ill you have to stay in bed, but you’re not well enough that anyone wants to hang out with you. Andi is avoiding me like the plague. She does NOT want to catch my cold. I don’t know about all autistic people, but this one HATES being ill. She’s not a good patient (whatever that means) and I’m not a good nurse so it’s far better if she stays humming and bouncing and I keep my lurgy and my distance.

I had to go to the shops earlier, and while I waited at the traffic lights I turned on the radio. The song caught me out and made an emotion rise up inside of me like a tsunami. I thought I was going to lose it right there at the crossroads (so symbolic), so I had to turn it off. I can’t feel intensity like that – I just can’t. God knows what would happen to me if I let it out. Better keep it locked up. That’s the trouble with colds, they creep up on you and let your guard down.


It’s all about the Heart

Poor us. We are so locked down. We live out our lives inside a shell so thick and solid we imagine this is how we are meant to be. We don’t know any different. We think this suit of armour is important for our survival and without it we would surely die.

But.. sometimes something comes along and cracks us open. We might get lucky and be busted by something wonderful, pure, extraordinary or divine. We might come to know what we hold inside through some kind of spiritual awakening. But the chances are, if we are to find that person residing inside our shell, we need something like a wrecking ball to get through.  And what or who is that wrecking ball? It’s most likely another human.

It was through Andi and her way of being that I began to know myself. Without her I truly believe I would have carried on being the rather selfish, grey, closed off, impatient soul I was.

But autism teaches us many things. How to stretch further than believed possible. How to find a depth inside – a well of patience so deep it draws you in to a place of calm you never knew you had. How to rise above the judgments of those who cannot know or understand the strangeness in your life, and be at peace with it. How to make friends with your own flaws and failings and forgive them all. How to know that you really know so little, but that is ok because it means there is somewhere more to go.

Andi cracked me open, smashed everything into a million pieces, and I thought I would never make it. I thought it was too much to bear and that I would die. But instead of dying I think I began to live – deeper, fuller, more honestly. An authenticity that I had run from for so long caught up with me, and I had to turn and face it. It’s not about the thinking mind, the brain, the cognitive process.. It’s about love for another human being and the Heart I never knew I had, until I came to know her.




A Good Joke

DSC00529We usually don’t like jokes. We never think they’re very funny. Too often the punchline is far too easy to guess and the person who’s telling it is a moron. Jokes are usually so contrived it’s painful and that’s not very funny either – or clever. Andi watches people trying to tell a joke as if she’s looking at the washing machine. Polite boredom I call it. To an autistic person a joke is usually pointless and I have to agree. I think I’m a little bit autistic too – at least when it comes to jokes.  I did laugh once at a joke about a kangaroo, but I can’t remember it.

What we both like is a bit of visual humour. Andi loves a bit of slapstick. There is nothing funnier to her than an old lady slipping on a banana skin.. (a bit dark I know).

But Andi laughs a lot, and sometimes in the middle of the night when everyone else is asleep. Usually its about the same thing. She likes to watch Honest Trailers on YouTube, and when she finds one that matches what she thinks, she will laugh and laugh and laugh.. rewind and repeat. Then she will come and tell me all about it, over and over again.

One day she could hardly speak for laughing. She giggled and stammered her way through what she’d just seen, but I could understand not one word of it. Usually when she finishes telling me anything, she waits for me to react. I have to say the right thing, or at the very least create the correct expression on my face. And that’s the tricky bit. I mustn’t get that wrong or there are problems. A lot of scowling and huffing and glaring at ‘stupid parents’ and muttering of ‘Never mind!’ while unsaid ‘you fucking idiots’ hangs in the air like thick black smoke. This time I simply hadn’t a clue what expression to pull or what words to say.  She looked and waited and in the end I said.. “Andi, I haven’t the slightest idea what’s going on or what you’re talking about!”

Bingo. It was the right answer. She had no idea what it was all about either, and that was the joke.


The School Run

The best school run I ever knew involved a tiny little bus stopping right outside my house. I would open the front door at a quarter to nine and the kids would tumble out with their book bags. A hop, skip and a jump and they would be on the bus and away to the tiny village school only a couple of miles away, and I would return to the piano and play all day ’til I heard the bus return to drop them off again. It was a very good time.

It didn’t last long, nothing ever does. Change comes how ever much we might resist it. We cling to the good things and push away the bad, but both come and go in their own time. Our wanting and yearning makes no difference.

By the time Andi came along school runs had turned into something else. Now the piano days were gone and mother had to work. Now it was about homework and timetables for the big ones and nappies and childminders for the little one. Too much do, do , do and not enough just ‘be’. Things were getting stretched..

Once it was clear our autistic Andi couldn’t manage the school, the teachers, the children, the noise, the expectations, the rules, the endless ‘you are not good enough’, in fact the whole twisted brainwashing system that it is, I stopped taking her. No more school runs for us. I stayed at home and we learned of life and times together, and we are still learning to this very day.

Next time: A good joke



In the Beginning.. and the tale of the MMR


It was the winter of ’95/’96 and there was another media shit-storm going on. Not poisonous eggs, poisonous cows or invasions of people with brown faces, or even another royal feckin wedding (god help us). No, this time it was all about how our children were all going to DIE from a hideous measles epidemic that was sweeping the nation like a plague sent from hell if us parents didn’t immediately get them all jabbed with the latest Measels, Mumps and Rubella vaccine. Think modern day ‘flu panic with extra pressure. We got letters in the post ‘inviting’ us to bring our children in – even those who had already had both measles and mumps (and cancer as it happens) and if we didn’t do it we would have to live with the horrible consequences of our inaction and be saddled with guilt for the rest of our lousy, rotten, evil, worthless lives.

And it worked I can tell you, I was shitting myself. Andi was 15 months old and up on her feet, talking, smiling, being normal. Legolas (not her real name) was 13 and had already had both these diseases plus something far worse, but still the pressure was on. Legolas (not her real name) dodged this particular bullet as even in my frantic, terrified mental state I could see how illogical it would be to stab someone who had already got their own immune system up and running on both these bad boys. Rubella isn’t a killer in children as far as I know – just not great for foetuses.

Andi wasn’t so lucky.

I can tell you now, if I had listened to my gut instinct (just like the NatWest bank tells us to these days if we get a dodgy phone call) I would never have taken her in. She would not have been vaccinated with the MMR and, who knows, life might have been very different for us. Now I can hear the know-it-alls telling me its just ‘co-incidental’, the vaccine is/was safe, its just fear mongering etc. etc. etc..

Well, fuck that. I was there and I witnessed what happened. The day after the vaccine she began to change. For the next six months if she was awake she was screaming. Did I imagine the hell we fell into? No. And neither did the rest of the family.

Since then I have spoken to many, many parents of children caught in that wave of autism. It was just a coincidence right? We were all just unlucky that some strange quirk of nature brought us all to the same place at the same time. Our stories are just anecdotes right?

But when do enough anecdotes become data?

The most chilling thing I heard was from a lady called Jackie. Her son was born with autism. She knew he wasn’t right, but he was verbal, smiled, and played with his toys. He had a quality of life and so did she. After his MMR vaccine he became a non-verbal, screaming, hitting, head banging, vomiting monster. Jackie (a journalist) decided to investigate what had happened to her son, but the doors began to close all around her. She requested the batch number for his MMR vaccine, but found this information had been deleted from his medical files..  Just another coincidence, right?

Next time: The School run

Nephews and hairdos

Andi has two nephews. She loves to see them but doesn’t want them using her stuff. One day she shut herself in her bedroom to play Spyro the Dragon (20 years on and the little purple dragon is still being played in this house) while nephew number one banged on the door ‘Let me IN! Let me IN!’ She ignored him. She’s good at that, she has excellent selective hearing.

Andi really loves Spyro. She has a little plastic figurine (the original version not the Skylanders mutation) which she keeps with her always. If ever we go out he comes too. He went missing for a few months which didn’t go down well with an autistic person with a strong attachment, but then, to everyone’s delight and surprise, he returned. I expect he just had some work to do.

One of Andi’s sisters owned the PS1, and the Spyro game was really for her, but Andi soon adopted it and now he is synonymous with her – or is it the other way round. I even painted a huge mural on her bedroom wall depicting said dragon in classic seated pose surrounded by scenes of the artisan level if I remember correctly. We had to paint it over when we moved house, but like (or rather not like as they are truly pornographic) the murals of ancient Pompeii, Spyro is still there, under the layers, waiting to be discovered sometime in the distant future. Or probably not.

One day the Nephews turned up with new hairdos. Andi and me thought they looked like the Kray twins (1960’s seriously bad boys from the East End of London). A six year old nephew gangster is a truly dangerous beast. Especially as this particular one had a penchant for knives when he was only four. I would ‘look after’ him while his mother was at work and he would help himself to knives out the kitchen drawer. Needless to say I had to relocate the knives when I knew he was coming, but then again it is worth bearing in mind a four year old gangster can get mightily pissed off if his stash has been rumbled. So, if no knives readily available, he would go for the screwdrivers instead. I used to let him keep one of those.

Next time: In the beginning and the MMR