Dancing With Myself

 

I have memories of dancing around the living room as a child. Even though I was (and still am) disturbingly uncoordinated – the freedom of movement was liberating. It didn’t matter that I looked like a div because nobody could see me.

Thing is, I am profoundly affected by music. Sounds wanky? Fair enough. However, it is a scientific fact that humans are hardwired to respond to music. Music is important. I mean, can you imagine films without soundtracks? Imagine Renton legging it down the street in Trainspotting without Iggy Pop’s Lust For Life. Or how about Jaws without the ‘duuun dun duuun dun dun dun dun dun dun dun’? Of course not. Films would be shit without music.

Life would be shit without music.

The Notorious G.O.D once said, ‘Yo knuckle-dragging peeps, 55,000 years from now your ancestors will be stressed off their tits and up to their eyeballs in something called ‘debt’ but they will have Coldplay and Radiohead.

Music was always playing in our house so many of my memories are evoked by songs. For instance, when I hear Ella Fitzgerald, I see Mum standing in the kitchen – pinny on – preparing Sunday dinner and it’s like she’s still with me somehow..

Mum ~ Circa 1975

As a teenager I went to a disco on Wednesday and Sunday nights.

YOU?!

Yes. ME!

Discos are usually avoided like the plague by the socially and sensory challenged. However, it was one of those situations where being social was a necessary evil if I wanted to experience music at a volume that would give my parents coronaries. You get this, right?

The routine was that I’d wake up on Wednesday morning (dry heaving) and I’d talk myself out of going. Then I’d get home from school – play my music – and it would give me a confidence injection. So I’d spend three hours faffing with my hair and troweling the make-up on and in the end I would look as far removed from me as I could be. Think actress and stage, rather than girl and disco..

Discos also meant BOYS.

I educated myself on how to be a girl and do boy/girl stuff because I was interested in boys, I just knew I couldn’t be myself or they would leg it faster than their Adidas trainers could carry them.

My research came in the form of teen magazines but the stories annoyed me because they were all ‘Wendy stared dreamily at Lee but he didn’t know she even existed. How could she get him to notice her?’. After a few pages of cringeworthy crap, Wendy gets a makeover at her mate’s house and Lee suddenly acknowledges her existence by snogging her in a graffiti filled bus stop which smells like a urinal. The end.

All this seemed ridiculous to me but apparently this was what was expected of girls if they wanted to attract boys? I did manage to attract a few boys because I remember kissing a random teenage lad to The Power of Love – Frankie Goes To Hollywood’s version. I don’t even think I knew his name before I started attacking his tonsils. Another lad (WHO WORE WHITE SLIP-ON SHOES FFS) bought me a Coke and I snogged him as a way of thanks. Snogging didn’t involve talking, you see. I understand that other female Aspies might identify with this?

Music was a drug to me and I needed my weekly fix of this ‘sound experience’. That’s an experience of sound – not Scouse lingo.

I was a disco junkie.

Sort of.

Because it wasn’t about the socialising. Nor did I need alcohol (not that they served it anyway being an under 18s disco) because I got my high from the bass sound which vibrated in my body. The anomaly is that loud noise usually affects me adversely. I cover my ears if a police car goes past. Loud music though? TURN IT UP!

Perhaps it’s no surprise that I have to wear a hearing aid now?

Anyway, combined with the lights (which fascinated me) I’d have been in heaven if it wasn’t for the other humans. My perfect disco? Just me, the music and lights. You can bugger the DJ right off too. I’ll pick my own tunes. Maybe that’s what my heaven will be? My own personal discotheque and yes, I AM old enough to remember the word, ‘discotheque’.

Spear of Destiny’s Liberator (Indie Rock) was played with full strobe light effects and I’d stand there with my mouth hanging open as if a UFO had just landed in the middle of the dance floor. Another anomaly is that, normally, lights affect me – especially fluorescent – but I LOVED THE STROBE! Couldn’t cope with it now (migraines) but in those days it just hyped me up with a similar effect as when you used to give kids E numbers..

The other thing about Liberator was that on hearing the intro, people would literally skid onto the dance floor and start jumping up and down like lunatics. You didn’t dance to Liberator. You shrugged your shoulders aggressively or swung your handbag round your head like a lasso. Plus, being in close proximity to other people meant you were always bumping into someone, like when I bumped into an older girl and demolished her glass of Coke. WHOOPS! Her mates helpfully inquired whether or not she was going to kick my face in?

‘I’M GOING TO KNOCK YOU OUT, COW!’, the girl informed me (aggressively) before flicking me the V sign.

She was probably all frosted lipstick and no action but I wasn’t in the mood to find out, so I legged it to the toilets as fast as my 6″ sling-backs would allow me..

At the end of the night, saliva would be swapped along with phone numbers. The lights would go on and the bouncers would start herding us towards the exits. To me, it was always a massive anti-climax to see the room devoid of it’s magic because the reality was that the dance floor was strewn with broken glass and fag-ends and it looked crap. It was like going to bed with Sean Bean and waking up with Worzel Gummidge. 😦

Once I got married and had children – going to a disco became a rarity. As life put more pressures on me, I became more and more unable to cope with social situations of any kind, let alone discos. I couldn’t recreate those years where the music would override my issues, so I stopped going. Once I was on my own, I would draw the curtains, put a record on and dance, or at least, my interpretation of dancing. Why do you think I drew the curtains?

I don’t remember exactly when I stopped dancing. I just know that I did. And now my bones are buggered so throwing myself around the living room is no longer an option. Not with my arthritis, dears. However, music is (and always will be) in my soul and the day I am no longer moved by it will be the day that I go to that great disco in the sky where the music never ends and God is a DJ.

That’s a reference to a song, by the way.

Until then, as Shannon once said, “Let the music play”.

“Ah, music,” he said, wiping his eyes. “A magic beyond all we do here!” ~ Dumbledore ~ Harry Potter & The Philosophers Stone

 

 

 

 

 

Richard and Jaco: A Life With Autism

I watched BBC One’s Richard and Jaco: Life With Autism last night.

As a parent, I am able to identify with Welsh actor Richard Mylan’s fears for his son’s future.

As an autistic person, I understand Jaco’s world.

My son will be eight this year but does not have the ability to mask his autism as I have been able to do. Like Jaco, his autism is obvious. He wandered in while I was watching it and saw Jaco wearing his headphones. He said “Look mummy, that little boy looks like me!”

Richard impressed me with his desire to understand his son’s world even though it’s impossible for people to truly understand what they don’t experience themselves. However, Jaco is a lucky little boy to have Richard as a dad and the love he has for his son is a beautiful thing to see.

You get a view of what life can be like with an autistic child like Jaco. He reminds me so much of my own little boy, as in,visibly uncomfortable with environmental stimuli but happy in his world.

In order for him to learn more about Jaco’s future, Richard went to meet various people on the spectrum. First he met Alex Lowry who is a motivational speaker and trainer on autism. An animated man, he is obviously passionate about what he does.

Although Jaco started secondary school and was happy, Richard was interested in finding out about special schools. In one such school he met two teenagers who had been tasked with the job of showing him around. One boy told of the bullying he’d endured in mainstream school culminating in a broken arm and the other told of being ‘kicked out’ of school for being ‘naughty’. Both struggled in mainstream but both spoke highly of the special place where they are understood and most importantly, happy.

Then there was Edward who is severely autistic and in residential care. He is a young man who is happy in his own world and who has a great support network. He, like every other autistic person, does not know what ‘normal’ feels like. All we know is our normal. Ed has an amazing memory and can tell you what day your birthday was on when you were born in a matter of seconds. He is a fascinating person.

Ed’s mother by her own admission has taken a leap of faith in allowing him to live independently but said, “You have to let your kids go don’t you? You have to let them grow up and be independent”.

Bottom line is yes, we do.

The person who struck me the most was the young man who Richard visited in his workplace. This man was literally living his dream of doing admin. Yes, admin! The job that so many people loathe. Yet, he was happier than a pig in muck sorting through all the letters and stuff. What’s more, he is a valued member of the team and according to his boss, contributes to the happy and relaxed atmosphere of the office. What choked me up was when he said to Richard, “If I didn’t have autism, I wouldn’t be as special.”

Richard said “So you see it as a positive thing?”

With eyes that twinkled (and bloody good eye contact thank you very much) the young man replied, “Yes. autism is a very special thing and whoever has it should be proud of it”.

I am proud of who I am and I want my son to be proud of who he is too.

The Boy and I have the same problems but we react very differently. I am an autistic person raising an autistic child and I know how important these next few years will be for him. I can’t sit back and do nothing because he will be a teenager before I know it. I have to prepare my son for a life without me and I have to do it now. I can’t guarantee that his secondary school experience will be as positive as his primary one but I will be watching closely and if he’s unhappy, I will have NO problem in placing him in a special school, especially after seeing how happy those lads were.

My passion comes not only from being his mum but also my years of suffering in mainstream. I know, without a doubt, that I would have been happy in a special school tailored to my needs. With the confusion and crowds removed, I would have thrived instead of having just about survived. However, my time has long since gone. It’s my son’s time now..

I want him to have a relationship. To be able, not only to work, but to be appreciated for his contribution to society. Ultimately, I want him to be able to live independently of us. Don’t get me wrong, I dread the day coming when he no longer needs me but that’s also the day I’m aiming for. It’s what every parent aims for. Sadly, some people are too severely affected for total independence to be an option.

More than anything else in this world, I want him to be happy and to embrace his differences, not hide them as I have done.

We, as parents, do the best we can for our children. We give them the tools they need to survive and they take what they’ve learned out into the world. With autism, the work starts earlier. It has to. Richard Mylan knows that. I know that. Most autism parents will understand that. Another thing that unites us all is the fear of not being here for our special children so we do the very best we can while we are still around.

Thanks to Richard and Jaco for a glimpse into your lives and for helping to spread awareness.

Richard and Jaco: A Life With Autism is on BBC iplayer for one more week. Well worth a watch, folks.

Spectrum Sunday