I've read the dreamy books about the autie kid who progresses from being a screaming dervish of poo and vitriol to being a calm, (non-poo flinging) auto-bot who says "please" and "thank you" and definitely never, ever dips toilet roll in the loo and eats it.
That would never happen at the end of these stories.
Dreams like this are seductive, but have no place in reality.
It's just too painful to wake up from them.
They're like having a sneaky hot chocolate (with a flake on the side) when you're on a diet.
Gorgeous at the time, but the rest of the time you're starving yourself and yet still have a fat arse.
Or fantasizing that you're a size 8 genetics professor (who finds a cure for autism) with washboard abs and absolutely no cellulite...who also runs marathons for fun and has read Ulysses and the entire works of Dostoevsky.
In Russian.
This is a lovely little reverie until you open your eyes and realise you're an over-caffeinated special needs parent with breakfast in her hair and barely enough mental energy to focus on the RTE Guide.
Or picturing yourself chatting to strangers about your kids and almost forgetting to mention that your youngest boy is autistic, because autism is no longer a dominant feature in your life. You would laugh blithely and say "oh autism, that's sooo last year".
These are happy little fantastic interludes, but are utterly counter productive.
Because I wake up and wonder "where did my life go?".
My life is so alien compared to what it could be if my little boy was born without autism.
I hardly need to point out that I adore Finian with all my heart (as I do my 3 kids) but four years on from his diagnosis, I am beginning to see that my goals for him and our family are unrealistic, and therefore heartbreaking.
I have to stop dreaming about family holidays, having a family Sunday lunch in a restaurant or (perhaps most tragically of all) wearing heels anytime soon, as I have to be in constant readiness (and therefore Reeboks) to sprint after my lightening bolter.
Dreams can be dangerous, and my feet touched the bottom of a big black hole when I woke up and smelled the coffee.
Four years on and my house is still a triple-locked fortress.
I still have to exercise extreme caution when washing Finian, just in case it's not chocolate spread smeared across his cheeks.
I am not getting any younger, while Finian is becoming bigger, faster and brighter at a dizzying pace.
I'm finding it hard to keep up, and all my big dreams of four years ago now seem naive and romantic.
But out of the ashes, new dreams can flutter.
I am hopeful that when we get our assistance dog that we will manage to enjoy family walks in the park.
I will never run a marathon, but most days I can escape outdoors for a walk around the Monaghan hills.
I can read a book, chapter by chapter, and enjoy it for what it is and not as a job I need to do.
These are all tangible goals that will not break my heart.
And one day I WILL wear heels.
(p.s I've decided to "out" Bob and give my son his real name...he's not quite as besotted with Bob as he was so it seems a little more grown up)
Hi Jean,
ReplyDeleteGreat to see you posting again, as I always love your posts. This is a topic very close to my heart at the moment. These highs that we autie parents experience from time to time, when everything is going well and autism recedes into the background for a little while, are such a killer as they always come to an end with such a crash. Trying to find an even keel and to adjust your longterm expectations is extremely hard to do. But once you do - and for the first time in the 4 years since diagnosis, I'm the closest I've ever been to doing this - I think that's when you reach true acceptance and get into the groove. I've no doubt that life will continue to be full of peaks and troughs ahead, but the crash might be easier to deal with cos I'll have adjusted my expectations. Btw you have such an amazing way with words :-) Laurie
Delighted to see you back, really hope you get your AADI dog soon and you and finian can take long walks around the Monaghan hills xxxx
ReplyDeleteSo hoping you get back into those heels soon xxx
ReplyDeleteWell finally...been eagerly watching your blog with the little snowflakes falling on it..thinking "does she live here with me in Maine?" Our last snow was only 7 weeks ago...You have been missed.
ReplyDeleteLong term is never realistic..no matter who your child. Dreams can always be altered...I do hope that the dog becomes a reality...And just an FYI-they do sell track shoes with a platform wedge..and you can run in them! May not be heels-but it is a step closer..:)
Damn expectations. I remember four years ago that all you wanted was to hear Finian talk. When I think of that isolated little man four years ago, running around making sure all the doors were at right angles, it seems incredible what you ahve achieved. Hopefully your crashes will get easier and that eventually you will be living in your reality all the time because it's where you want to be.
ReplyDeleteGood to have you back Jean, I've missed your posts. It's hard facing reality and I'm sorry that your dreams for Finian (how very grown up!)are changing. They're not gone... just changing and I hope your new Assistance dog will help with providing new dreams ;-)
ReplyDeletexx Jazzy
I see no reason that you can't create your very own version of 'normal' for your family. Actually, since so many children with autism are out there now, maybe they, and their families, are the normal ones.
ReplyDeleteGood luck with the Assistance dog, and I'll keep my fingers crossed about the heels!
@ Laurie, thanks for that honey! The highs and lows are pretty exhausting, and mostly things are fine. I just had to go through a period of re-assessment to set new goals and it made me feel tired and low. It's really comforting to know other parents feel the same and there's always someone "out there" who understands XXX
ReplyDelete@ Andra, I'm keeping my fingers crossed re the doggie, but I won't be wearing my heels walking over the Monaghan drumlins
@ Blue Sky, I am busy window shopping
@ Kathleen, thanks for the lovely welcome back. Track shoes with wedges, eh?
@ Alison, you're right as usual (you fecker). I forgot that! Will yo please leave your husband and come and live with me?
@ Jazzy, good point. And change can be a positive thing
@ Mother Blogger, I like that! Everyone else is just weird
XXX
Good to hear you are slowly seeing some positives. It is so hard to rediscover life after autism has hit. Over time though things really do get, maybe not easier but a little more comfortable and then, before you know it, you forget your life was ever any different.
ReplyDeleteHope you get those heels soon!
Hi! Found you from another blog and really liked your post. I often wonder the same things...what happened to myself, when will I ever read a book for fun again, instead of reading books about autism. It's a long road, that's for sure. Glad I found your site!
ReplyDeleteGreat to see you back blogging Jeanie. I hope your wait for your pooch isn't too much longer and look forward to hearing about better times soon. They do fantastic stiletto style runners these days btw :) xxx
ReplyDeleteGreat to hear from you, Jean, as always love your post! When reading it felt slightly guilty - its been 4 years since diagnosis for us as well, but it so happens mine is a please-saying, non-bolting little autie. And then I remembered the times I listened to other "spectrum parents" whose children could cross the street on their own, or even (whisper) do homework! It sounds as an unachievable dream at the moment, but who knows?! He might surprise you just yet!
ReplyDelete@ Jessica, me too!
ReplyDelete@ Flannery, it's great to have you here
@ Petunia, can't wait to get our doggie
@ Truf, you're absolutely right...our kids have lots of strengths too
XXX