Bring Me a Higher Power - Dear Gloria

I was recently chatting to a friend about an acquaintance of hers who has just done some time in the big white castle of counselling. Well, we were talking about the AA's Twelve Steps, as you do in the more fragrant areas of Greater London and she asked if I believe in a Higher Power. And I've been pondering the matter ever since. 

I'd like a Higher Power in the same way I'd like to be bumped up the waiting list for "emergency counselling" that I've been on since March!  I'm too disorganised for any structured religion and shudder at the thought of making J sit through a church service. J did have a brief dalliance with Hari Krishna-ism at a local fair, when he was magnetically drawn to their marquee and had such a great time dancing and spinning with them that he had to be forcibly removed after an hour. 

I suppose the closest I've got in recent years to an HP is when J was having lots of seizures every day and was so pumped up on steroids that he looked as if he would just float away. I'd make paper boats every day with little pleading "please make my baby better" messages in them and send them down the river. It felt pretty useless but it felt ceremonial and that was nice at the time. 

I'd like to hand it all over to some holy big cheese type on a bad day and just ride the tidal wave of chaos that sometimes strikes our family. 

And then I remembered that we already have our very own HP. She's called Gloria and she sits on the highest of our bookshelves. She's a ceramic angel with large hips and pert appendages and a slightly holier-than-thou expression (quite a lot like some of the PTA mums at G's school when I think about it! ha ha). Well, me and G have an annual Christmas Gloria ceremony where we both write little messages to Gloria about our requirements for the coming year and then we post them into a small opening in a rather un-angelic part of her and make a wish. Last years messages went like this:

G: Dear Gloria, please can you make sure I get loads and loads of presents. I love you. Love G

K: Dear Gloria, please, please let J's diagnosis be wrong. I don't want him to be autistic. Love K

And this year:

G: Dear Gloria, please can you help make my life a bit happier. I cry a lot. Please stop Billy from bullying me. Love G

K: Dear Gloria, please turn my wine to water (maybe with a slight essence of Pinot Grigio); please help me swap my Marlboro Light habit to something involving lycra and sweat; please give me patience on the days when I have to make play doh numbers all day to entertain J; please help me find some uninterrupted time for G (but give me the in-built knowledge of the ins and outs of Lego Indiana Jones so he doesn't have to explain it all to me all the time); please take away my eyebags (anusol just isn't working any more); please give me the sense of humour (but not the hair or physiques) of Bill Bailey and Justin Lee Collins to see the funny side of J tipping yoghurt all over the kitchen floor and then lying down and making angel shapes in it. But above all, please make my family happy, healthy and together.  Love K

I think we all need a Gloria in our lives..... and then there are only the other eleven steps to deal with!

Happy Christmas!

A Life in the Day...

I am woken at 6am by howling puppy. This can only mean one thing. He's pooped in his bed. Great. Yep - there it is - one mortified dog and one poo-smattered bed. Nice. Half an hour later puppy is cleansed and smelling roguishly of girly shampoo and kitchen is disinfected. Fed said puppy and answered rousing chorus of "Doe a Deer" coming from J's bedroom. G has got himself up and glued his nose to the TV screen throughout the proceedings. Husband appears and grumbles about the shortage of milk, before using the last trickle on his own Rice Crispies and rushing off to work - late again. J takes the "let's clean your nappy" comment literally and pops wet nappy into washing machine. It's not until mid-cycle that I notice a merry little avalanche of nappy gel tumbling around the drum. You'd never believe how much those Pampers can absorb. Hoovered it all up including sock which causes the hoover to emit odd asthmatic mooing sounds. 

Noticed small grains of rice in puppy poo in the garden. Mental check concludes that we have not fed him anything rice-like and they most definitely aren't green plastic like the watering can he ate yesterday. A quick perusal of the internet reveals diagnosis of tapeworm. Only wormed him 2 weeks ago but ring vet to order heavy duty stuff.

We then spend a lively hour between 9 and 10 am getting dressed. There's much chasing, cajoling and then shedding of clothing from J and a refusal to switch off Miniclip from G. But we finally make it out of the house - more or less clothed. Jude steps in goose shit and screams dramatically until his beloved (too small) croc is washed and dried to his satisfaction. (Prizes for anyone that can spot a theme to my morning!). Then there's more battling into the car because a friendly neighbour has parked one foot away from J's door and he refuses to enter any other way. Finally we're off. We're on our way to the barbers to get J's hair cut - ha ha isn't life fun!

Explain to the lady at the barbers that J doesn't need to wear the (too scratchy) cape thing and doesn't like the (scary) clippers or (too wet) water sprays and present J with his favourite book - a London A to Z - to occupy him. I turn my back for a nanosecond to talk to G and woman immediately sprays J with a fine mist of water and revs up the clippers. J screams and wails like he is being attacked but it's too late to stop as he now has a tram line in his overgrown barnet - like a reverse mohican. The shop owner hurries over and announces that we are causing a disturbance and must leave but the clipper wielding woman ignores her and continues her hair farming mission. Gripping the snot-covered, shrieking J in her ample satsuma-hued cleavage she makes swift work of turning J into a small Germanic-looking child. We pay, apologise and leave with J's new rats tails bobbing behind us in the wind. 

We make it back home and then allow J to spin in the carpark for 15 minutes to realign his tattered senses while G and I discuss the advantages of the Xbox 360 over the Nintendo DS.

 And then it was midday!

What's it all about...?

I have 2 sons. G is 7 - a unique, cheeky little man who makes me laugh more than anyone else I've ever met and whose biggest ambitions in life are to a) get his first wobbly tooth and b) become a very rich video game designer who goes sky-diving at weekends. J is nearly 4 and, after a long fight with a particularly nasty type of epilepsy (called Infantile Spasms) as a baby, was diagnosed with High Functioning Autism a year ago. J's ambitions in life (if he could communicate them to me) would probably be along the lines of a) to be allowed to eat nothing but Frubes, b) to never be told that he has to stop doing whatever it is he is enjoying doing, however long he has been doing it for, and c) to permanently remain as naked as the day he was born.

As with all families, life in our family is peppered with ups and downs and curious incidents. But the fluctuations that arise from having Autism in the fold go from the sublime to the downright ridiculous and the incidents just seem to get curiouser and curiouser as we go on.

I wanted to write some of this down, firstly because I like writing and it feels cathartic, and, secondly because I couldn't find anything to read that is about Autism in layman's terms. No science bits, no promised "cures". Just the day-to-day experience of what it means to a family when one of your most precious people in the world is autistic.