Control - Too Much, Too Little and a Happy New Year

Call me an old grump, but I'm not a big fan of New Year's Eve. I actually think I might be slightly allergic to it these days. All that expectation - a whole evening of waiting for the 2 frenzied minutes after the chimes have expelled the old and struck in the new, singing songs that nobody really knows the words to and then hugging drunken mankind. This fills up a couple of giddy minutes and then there's The Lull. The deflated pause where no one really knows quite what to do with themselves after all the frivolity has abruptly ended and you suddenly remember that mixing the grape and the grain is not clever. So what do we do.....? We start making the Resolutions....give up smoking/give up drinking/lose the Christmas podge/start exercising/become a supermodel/stop being lazy/stop all the fun stuff/promise to start supplementing my diet with health-enhancing seagull plop and other nasties..Yadda Yadda Yadda. Don't get me wrong, any other day of the year I'm right up for a good party. It's just the unrealistic vows of Control that the New Year brings with it: I WILL control my curves, I WILL get my life under control, I WILL make my body a temple...... All of this imposition of Control gives me the hump.

You see, Control is a big thing in our family. It runs our family sometimes. I don't like it. I've said before that I believe Anxiety is central to J's autism. And this anxiety stems from Control - J's desperate need for it and his feeling that every aspect of his life is lacking in it. The more out of control he feels, the more control he seeks.

"The need for control plays a huge part in the lives of all children with autism. Fear of losing control can trigger everything from anxiety to anger, to repetitive and challenging behaviours. Their need to maintain control can manifest in rigidity and strict routines. But if they have control then, invariably, the parent has lost it." (John Clements, Clinical Psychologist)

And ain't that the truth! The Christmas season is particularly challenging for J and his buddies on the Autistic Spectrum. I must add here that J now has several Christmases under his belt and each year he enjoys aspects of it a little bit more than he did the last time - he's not totally Bah Humbug. But he certainly finds it difficult. Aside from the prolonged build-up of mass excitement, the odd traditions (a tree indoors? are you blinking mad?!),the family visits, the strange act of having to sit at a table for meals (hot damn - is that what it's for?!), the hidden and often unwelcome "new things" that are called presents..... aside from all this, life is just thrown completely out of routine for a week. Sigh. J depends on his routines like he depends on air to breathe. Strangely, the more out of control life is for him, the more completely he surrenders to its loss at the time. To anyone other than me and Dave, J is taking life in his stride on the off-schedule occasions (holidays, large celebrations, first year at new school - all join Christmas on the list of challenges). J is quiet and biddable in these situations - he makes a bit like a fawn when it's approached by a predator - quiet and still. Very little eye contact and not a lot of speech (I know fawns can't speak - Bambi? Oh deer! Just get with the simile!).

And then Christmas is over. And then it's Dave's birthday. And then it's J's birthday. And then it's New Year.

And then it's all over. The coast is clear. Routines are reinstated. And then it's time to regain Control for J. Not being a brain surgeon, I'm making a bit of an uneducated stab here, but it's something to do with the Limbic System (regulates anxiety and memory) and its lack of communication with the Frontal Lobes (emotional control centres) that means that the autistic "pot of out-of-controlness" (that's my own scientific term!) does not self-empty with time. For J it's full until he empties it. And that emptying - regaining of control - is done when he feels completely safe. That is, when he's at home with me or Dave and, of course, Claude! We call this "The Fallout".

The first stage of this is endless drawing. 2 whole reams of paper in the last 10 days. These drawings used to be done by us, directed by J (see Everything Starts With an E). Then they became J's own intricate, perspective-perfect drawings of lifts. And now they are beautiful, detailed pictures of tube trains and stations. J has total control over what goes onto the paper. There's no uncertainty when you are in control of something (and with loss of control there is an overwhelming sense of uncertainty). My favourite picture is of the inside of a train carriage - fully detailed, doors, windows, and signs. With just one empty seat in the middle. When I asked him about it he said that it was "my seat". To him no other seat matters - he's not interested in his fellow passengers. In his drawings he can even control whether or not there are any other humans in his world.

Stage 2 is the Control of Mummy. It's quite common for kids with autism to use their parents as tools. When J doesn't want to touch something, he'll direct my hand to it instead. For J, if he can't control anything in his life, the first thing he wants to do is to control me. This goes against all parenting advice - "control that child", "show them who's boss" blah blah.. It's amazing that one so small can exert power over an adult to such a degree. The Control of Mummy phase has recently involved J holding me hostage in which ever room he wants to be in and sitting on me! I do love the cuddles but this control form means that I'm not even allowed one inch away from him. It's a godsend that I have good bladder control - extricating myself for a little penny-spending trip can take time. If the doorbell rings and I have to answer it, I have to carry a screaming, kicking J downstairs with me to the unwitting visitor (our postman must think I'm the worst mother in the world!). Parents are often mockingly criticised for being "afraid of their children's tantrums" and, Yah, Hello - guilty! J's meltdowns can be pretty scary. This is a whole other league to "normal" tantrums. This is acute fear and desperation. I tend to weigh up whether a tantrum is worth it or not.

I sound crap, don't I? Well, we've had 3 days of this now. Luckily G was safely out of the house at various play dates so neglect wasn't involved. This is all more measured than it sounds. J went back to school today. Full routine has now been reinstated. I have drawn up a visual schedule for the day's after-school activities - none of which involve taking me hostage. Boundary time! 3 days out of my life to help J get back on track doesn't seem too high a price to pay. If you imagine a world where nothing is ever certain; people are never predictable; your senses are continually shot to pieces and your one and only hope of feeling ok about yourself is your mummy....Well, sling it, SuperNanny! I've been accused of being both over-protective and molly coddling in the past. All I can say is that I'm doing my best. It breaks my heart to see my own flesh and blood in a state of high anxiety. Of course I'll do whatever it takes.

As a footnote, I just want to tell you one little story about J's need for control - an illustration of what on earth I've been wiffling on about:

A while ago - and not for the first time, J slipped off his precarious perch on the bannisters and fell backwards down the stairs. He was battered and bruised but physically ok. The subsequent crying, however, lasted for well over an hour. Obviously, falling downstairs is total loss of control. The only way that J could regain control was to reenact the whole incident in his own control. Yep - he wanted to throw himself back downstairs. Clearly, I wasn't going to let this happen. However, by putting in a few boundaries but letting him have the control, peace was restored. I put a large heap of cushions at the bottom of the stairs and let J chose whether he wanted to throw himself off stair 2 or stair 3. His control. My boundaries. Bazinga!

So, sorry - this has been a longy. It's a big issue, Control. Thanks for bearing with me. Along with saying Happy New Year I'd like to add that I think we should just all keep on trucking. Nirvana can wait. Do whatever rings your own particular bells. Keep your head above water. Now, who's for a great big January party?!