So. 2012, eh? Blimey. It scares me a little, if I'm honest. You know how cats get when they're exploring new territory? All hunkered down and tiptoey? I feel like that. After the year we've had in 2011 anything could happen. There have been so many changes in the boys; a too-small car; a new car; more debt (sigh);a new furry arrival (another kitty to add to the menagerie); G's diagnosis of Aspergers; Dave's diagnosis of Aspergers; new friends; my beloved granny's death; Dave's architecture company finally going belly up (this was a biggy); new job for me after 10 years of not working.... Suffice to say that change was the watchword of 2011. And we survived. We're ok. A little shell-shocked at times but pretty much fine and dandy when all's said and done.
I've learnt a lot in 2011 and, in no particular order, here are some of the noteables:
Firstly: Hand-holding. Seriously, this is a revelation! I've written before about my Danger Boy - autism and no sense of danger etc. J moves quickly. Add to that J out and about in public - super-sensitive to noise and new experiences, liable to get into a blind panic at any moment... He'd run out into traffic once too often - my heart couldn't take any more near-misses. I called on my autism guru, Gina Davies (google her - she's brilliant) at a time when life had got all too tricky. She gave me some brilliant advice - but "making hand-holding a rule when out in public" was the money shot. It sounds so obvious, doesn't it? But holding hands with a child like J is like holding hands with water! Holding onto a slippery fish that doesn't want to be held onto. Several months of visual prompts and "hand-holding training" it took but now it is The Law. It works. It means that we can go out without fear of imminent death. Phew!
"Wait and See". Another "Doh! Why didn't I do that earlier?" moment. Autism likes solid facts. Autism hates maybes. Life is full of uncertainties and maybes. We live by the visual schedule but we are not psychic dammit! Sometimes our planning can't be water-tight but I've learnt by my many mistakes that promising something that is uncertain does not win prizes. "Wait and see" has saved us! J has accepted this phrase and it's got us out of many many tight corners.
Animals are amazing. There's something magic about the relationship J has with creatures. When J was a tiny poorly baby I used to pop him into the hammock on the veranda of our (then) island house and a pair of Kingfishers (who had rarely been spotted by any of the islanders) would come and land on the railings beside him. I've written before about Claude the Wonderdog - he is still as wonderful as ever. But our cats, Sass and Schmoo are currently unsung heros. J talks to the animals more than anyone else. He "cuddles" the cats frequently (for "cuddle", read "squeezes the living daylights out of"). They are massively important to J (and to G who is a much much better animal owner!) but somehow they know that he loves and needs them. If anyone else carried them upside down in a loving "embrace" they'd get their eyes scratched out but for some odd Stockholm-Syndrome reason, they let J do it and his is the first bed they choose to hop into in the mornings. Odd.
Going on holidays with your in-laws is a delight. Actually family is vital. Who knew? My parents have each boy for a couple of hours a week so that I can spend time with the other - this has kept me going some weeks. The importance of extended family can't be down-played in our situation. People who love and understand and support us, in spite of all of our foibles - Gold!
It took us years to get it but G's official diagnosis of Aspergers was one of the best gifts this year! We always knew that something was up but having it written on a piece of paper - and the understanding that this has brought has smoothed the way for G. I'm not saying it makes things easier - living with an Aspie (or two) is an education at times - but it just makes sense of things. That said, when he tries to pull the "but I can't help it if I have special needs" card to get out of some misdemeanour or other, it turns me into Voldemort Mum! It's not an excuse, but it is a reason..... there's a whole post on this in my drafts folder waiting to be tweaked ...
Drugs. We've looked into every other option but it seems that drugs are the answer for J. He can't live with these extreme levels of fear and anxiety and rigidity any longer. He recently asked me to help him feel less worried. Announcements over loud speakers, sirens and fire alarms have been the curses of 2011 - it's difficult to persuade J to leave the house. It's hard to avoid these things without moving to the North Pole. We have an appointment in a few weeks to get started down this route.
The importance of keeping those windows into my boys' worlds open. Both boys have super-strong special interests. For G it's the history of video gaming. For J in 2011 it's been: trains, the London Underground system, bus routes and now it's motorways (see the theme there?). Dave and I have spent hours and hours travelling on these various forms of transport with J with him noticing every single teeny tiny detail of each. We've spent hours and hours discussing techie stuff with G. Without this input we would not have the connection with our boys that we do.
My husband totally rocks! I've really properly learnt that in 2011. I knew it before, of course, when we got married nearly 13 years ago, but this year I've learnt it all over again. What's that statistic? 9 out of 10 marriages fail if there's a child with Autism in the family? Well, I can understand why. We never came close to this, but suffice to say that it's almost impossible to keep the balance when you're fighting tooth and nail for your child's well-being. Chuck a load of grief/anger/exhaustion/desperation/a few parental ASD genes into the mix and add a dash of financial instability. Well. It's not all hearts and flowers. But in 2011 I've learnt that with enough effort and appreciation from both sides it is possible to become a Crack Team. He's the yin to my yang, the salt to my pepper, the Team Edward to my Team Jacob, the Gavin to my Stacey, the Arkwright to my Nurse Gladys... I do the fire, fluff and frivolity and Dave does all the stuff that keeps the wheels turning, while belting out a good old show tune. It works!
Music is good for my soul. Surfing's even better and a job was just what the doctor ordered! I love going out and having fun. Music makes the world go round. I have some brilliant friends. If I could surf every day I'd be a much much better person. My job (as a Play Assistant at a school for kids with major disabilities) came along in the nick of time - just before I disappeared up my own arse!!
Things change all the time. Never give up. I'm beginning to see that just when things get as bad as they possibly can and I'm at the end of my tether, something magically shifts and it all gets better again. It works the other way too - things that have been staples, things that have always worked for J and G just suddenly need tweaking. Nothing stays the same. I like knowing this because it stops me from despairing or taking things for granted. One thing, however, that will never change is that I will always fight for my boys to be the happiest and the best that they can be. I've learnt in 2011 that some of that fight in 2012 should be with myself - to hold back a bit and loosen the apron strings a tad - let them fly on their own. Find out where the effing laundry basket is, for starters! Hello Independence! Goodbye Slave Mum!
Nobody gets it right all the time - particularly me! However far into this autism journey we get, I still make beginner's errors. I'm getting better but nobody's perfect. The kitten was hiding under the rocking chair a while ago and kept darting in and out to grab a toy. I said to J that Schmoo was like a little eel poking out from under his rock. Innocent enough, you'd think.... J charged out of the room and hid in his bedroom. Nothing would lure him out until I'd convinced him that the chair was a rocking chair that didn't have a rock in it and there absolutely definitely were no eels in our house! It took weeks of checking before he believed me. Oops!
So come on 2012, show us what you've got! We're ready and waiting. Tentatively. A big lottery win would be good. A huge house with a massive garden right by a great surf beach, miles away from noisy traffic? Failing that, happiness, health and one or two tickets to the BMX event at the Olympics would do just fine!
