My map-reading skills never were up to much but this is ridiculous - I can't get out of this sodding one-way system! The problem is that I can't find the correct map. I've been floundering about in this rough terrain for a while now and I'm beginning to realise that I should stop looking for the damn map and just start running before the wind changes and my brain irreversibly turns to custard. See, the thing is that I'm a bit stuck. The area I'm lost in is that Limboland between J being diagnosed with autism and the place where everything stops starting with an A and I get on with Life.
This first chapter has been a massive learning curve of acceptance and discovering what works for J and for the whole Hughes family. It's been a rollercoaster ride. There have been flurries of great activity - trouble-shooting those terrible times when it's all gone a bit Pete Tong - for J, for G, for me and Dave - finding solutions and putting them into action. There have also been nice even plateaux where we've downgraded from Red Alert to Floodwatch and we've been able to breathe a bit more easily.
Towards the end of 2009 things were really tricky with J - it was virtually impossible to connect with him. He obviously felt out of control with a house move and a new school and was compensating by exerting his "control" over me very effectively! I seemed to be losing him forever to that inexorable lure of self. It didn't feel at all good. Things were so difficult with G (a whole other subject..). I had a good look at all the various "solutions'. Moving us all to a deserted island where we could run wild and free, minus environmental assaults, minus society's constraints and judgements, riding wild horses and clean waves and generally lolling about and being at one with nature - unfortunately was not an option. So, more predictably, I instigated specialist diets (only difference it made was a big dent in waning bank balance); then 20 weeks of The Listening Programme (which amounts to 50 hours of J listening to acoustically modified music to reach the parts of his brain that nothing else can reach and was fantastic, incidentally); then we managed to get Sensory Integration Occupational Therapy included on J's Statement (which means that the LEA have an obligation to provide this for J - YAY!). Timers, strong routines and visual schedules have taken centre stage, as usual. We've moved back down to Floodwatch - setting all the daily routines in stone so that everyone knows what to expect and when to expect it and we all feel in control and fine and dandy.
Hunky dory.......................?
AAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHH! No. Not effing Hunky Dory at all!! I know that at least one half of Hughes family members are happy with this battened-down, reined-in, orderly living, but, I, for one, long for spontaneity, disorder and surprises once in a while!!! A crazy world where friends can casually drop in for a coffee without causing an anxiety attack in J. To even consider J having a sleepover at his grandparents' houses. A world where neighbours could casually invite J round for a play and he'd want to go. To be able to go on holiday and not have 2 weeks' fall-out afterwards where J is frantically reinstating his sense of control. To go to a wedding/bbq with the boys and be able to talk to grown ups without constantly shadowing J to make sure he doesn't escape. A world where I don't have to make "lifts" out of the sofa cushions for 2 hours each day of the summer holidays.......................
This list could go on and on. You know I love my boys for exactly who they are, Right? I do. I really do but in this Limboland place I still sometimes secretly wish things were different. Easier. I miss what I thought I was going to have but never will - if that makes any sense. And then I feel guilty. And that's where I become stuck. Guilt is such a useless emotion - doesn't actually solve anything. Just makes you feel crappy and hopeless and sorry for yourself. Depressed even.
The route that I've been hunting for has a big flashing Las Vegas-style signpost, pointing all the way out of Limboland and directly into LaLaLand. Just like that! Unfortunately, however, it's dawning on me that this mystical place doesn't exist. I'm living my life like a waiting game. Waiting to find The Only Way to make J's life better. Waiting to find The Answer to why G struggles with his life and to fix that for him too. Waiting to win the lottery. Waiting to stop feeling guilty for never being enough or doing enough for my kids. The truth is that we're HERE. There are no big answers apart from getting on with getting on. Good enough IS good enough. (can I repeat myself any more to make my point?! can I repeat myself any more to make my point?!)
This poem, by Emily Perl Kingsley sums it up nicely:
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
