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.
10 comments:
If it's any consolation I'm right there with you. We're right at the start of our autism journey having only recently found out (though we're still waiting for the specific diagnostic assessment to take place, but then I always knew something was going on with Nipper). Most days I feel like my head is going to pop from the sheer frustration of dealing with Nipper's behaviour, and worst still, knowing that it's unlikely to get much better unless I can manage it properly. At the moment I'm failing miserably and never feel as if I've done justice to everyone else in the family. But I'm doing the best I can under challenging circumstances. I know I'm in Holland, and I accept it, but I wish I could get the right guide book and speak the language!
Tilly :o)
Gorgeous T.
I hear what you say. It must be so frustrating with idiots like me trying to wrap your story up with a happy ending, not realising the place you are in now.
As ever, you have gift-wrapped your pain in achingly beautiful language. You have such a talent. I understand better now and promise never to be glib again!
All my support,
S x
Tilly: hope you find that guide book
Oh Kristina, I can so relate to every single thing you speak of in here. The regimes, diets, visual promps, statementing, guilt, exhaustion - and never, ever feeling you are doing justice to all the rest of your family.
In the end, I did kind of run away. Friends "popping" round became too much of a living nightmare - it was difficult enough just to get through the day, never mind adding that to the equasion. If I am honest, I had a very tough time accepting my son had autism, I wanted a magic pill to make it all go away - and I was so ANGRY at the random unfairness of it all.
Looking back, I have no idea how we survived those earlier years. Moving to this tiny island which is approx 30x15 miles, and where virtually everyone knows everyone, has proved a Godsend. Sure, some might find it a tad isolating and chlostrophobic ("normal" families, that is), but the space and predicability it affords us is priceless. I know how blessed I am to have had the option of escaping to this slower pace of life, for most this is not possible. I don't "do" diets and regimes anymore - my boy has grown and learned many coping skills along the way. He is happy - a place I never dared hope he would be. It's been a whole combination of things, and the journey continues, but I have finally realised that although our lives may always be different from what I'd originally planned for us, it is so, so much better than I'd even ever dared to hope for way, way back then.
Trust in your instincts, and most of all be kind to yourself, you are an amazing, wonderful mother - please know and believe it DOES get better, with every set back, there is always another path forward.. fate has a funny way of leading us on to the right one for us. ((Hugs))
P.s. I LOVE that sign (smile)!
Hi Kristina - as someone "on the outside" it's hard to know what to say, but your blog continues to be the most honest I've ever read. What you are coping with is relentless. I hope you can keep on keeping on.
Thanks everyone! Even blogger got into the "repeating yourself" thing by posting everyone's comments twice!!
It's been quite an interesting experience, writing this recent post - HONESTY about emotions is quite hard to deal with I suppose, and not always pretty for others. Not at all British!! We're all supposed to look like we're coping at all times. I've had a variety of reactions to this one!! I immediately felt better about life after publishing this post and it's extremely comforting always to hear your words of wisdom and experience, Shrinky(my guru!), and that I'm not alone, Tilly((X)). And to Sonj (my rock!) and Seymour and everyone else who took the time - thank you for stopping and listening with open ears and minds! It IS good to talk! xxx
Each chapter continues to be a learning curve!
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