Saturday, February 20, 2010

Would The Real Slim Shady Please Stand Up??

Sometimes I feel like The Artist Formerly Known As Prince.

OK, so it's possible that I don't have his talent, his fortune or his penchant for stacked shoes and  velvet jackets (although I do love purple...see we have loads in common)...
...but there is some common ground between myself and His Preening Purpleness.

We have both undergone dramatic identity shifts in which we continue to look and sound the same, but what motivates us has changed to the point of being unrecognisable to our Former Selves.

Sadly, I didn't get to write albums and throw magnificent tantrums (I still haven't forgiven him for cancelling his Dublin gig).   Instead I was soundly squished like a bug ( a fabulously glamarous LadyBug, of course) by the Autism SuperTanker, and while I lay in an sticky splat of grief on the road I had a rather pressing decision to make.

I had to either get up, reapply my mascara and whup some Autism Ass...or I could lie in my pool of self-pity and wait for the next truck to come along.

Oh Gawd, enough already with the motorway metaphors.  I sound like a hungover  Jeremy Clarkson.

So of course I got up.

I slept, ate, drank and dreamt Autism.  I immersed myself in the latest research and flooded my thoughts with causes, theories, treatments and options.
I consumed Autism, and it consumed me.

Today, while I was tidying up, I was listening to Prince (sorry, Squiggle) belt out Let's Go Crazy and I had one of those thunderclap moments.  It was profound enough to make me put my mop down and have a cup of tea.

I thought "if  Bob suddenly became non-autisitc, who would I be???"

What would I talk about, think about, read about?

Autism has become so deeply embedded in my psyche that I can't separate myself from it.

I'm not saying this is a bad thing.  It is what it is, and I need to be this way to help Bob be all that he is capable of becoming.
It's just so vastly different to the person I may have been otherwise.  It is entirely possible that I'm a better, stronger person because of Bob's Autism...but we'll never know.
I just don't want to vanish beneath the endless folds of Autism that envelope me.

I can't seem to read books anymore, and I used to chew novels up for breakfast and spit them out by teatime.
I find myself steering each conversation I have back to Autism, even if the original subject was global warming, or lipstick.
I speed read the papers, searching for the word Autism, and only then will I focus enough to read the entire article.

I think it's time to reclaim who I get a little more balance in my life.
I think I may write myself a prescription for some Selfish Tablets, and if that involves time out for some exercise, shopping and the odd facial then so be it. I already have the full support  of Bob's Dad, so the only thing stopping me is the feeling of  being rooted to the ground by autistic superglue.
I could live with  changing that.


  1. I think its time you start thinking bout yourself. I love the "autie" jeanie so i cant wait to meet this new version.
    I love your way with words, so easy to visualise. Great Blog jeanie

  2. Wow great blog missus! Autistic superglue... yep think that accurately describes it. It really does consume your every breath doesn't it. Like you I used to devour novels of all types but my heart just isn't in it anymore. I must do some soul searching and see can I retrieve any of the old me too xxx

  3. Maybe we should all do this together? Have an autism free day....who am I kidding, an autism free 10 minutes would be something!! All I know is if Button didn't have autism I'd be missing out on some great people!! xx

  4. I so get you on this one, I was a totally different person before the A word came into our lives and like you I eat sleep and breathe it, it has swallowed me up and spits me out at regular intervals, I do try and make a effort to do other things non autie but in the end it all comes down to the kids and their needs. Definitely time for a change and try and find a way back to the old selves for a while xxxx

  5. Thanks girls (and James!)...I was worried you'd think I'd vanished up my own behind.
    I'm not really sure how to go about (I cant' believe I'm saying this) "finding myself"...and if Lisa suggests a hand mirror and Fried Green Tomatoes I'm afraid my gynae sez my soul isn't there lol xxx

  6. Once again Jean you have hit the nail on the head.Last night i got to do one of my fave things ,i became Katy Tyrrell again only do it when i am back home and it feels good a night out with my homies i love being Kate McCafferty and all that comes with it but Katy Tyrrell sometimes i miss her and i liked her but the chuckle bros bought me back to real time this am with a flood and trip to A and E!! So time for me to put away the Tyrrell and bring her out again at easter

  7. Hey Jean, lovely post, and I agree with Taz, I have met far more wonderful people thanks to Smiley and CD than I could have ever imagined, and I always give thanks for that. I'm not nearly as dedicated as you, and often have to be myself and not 'Mum', if you really want to, you will manage it too x

  8. great blog jean, i love your way with words and you should def start finding your inner jeannie and take her out of the bottle from time to time..........and spread your wings for a while xxxx

  9. Oh s**t, I never thought of it but its like getting hit with a sledgehammer now that you bring it up. Oh dear, I must be one of the most boring people in the world to talk too!! Not sure how to go about this, when you 'find youself' will you leave a trail of crumbs? or come back and drop a few hints? Jen.

  10. hi jeanie
    I for one love the autie mum you are I didn't know you without the A subject but I can identify with all you said and I know some out there would prefer me to drop the autism subject but I simply can't and a funny thing occurred to me when i rembered what i did before the autism diagnosis came into our home I spent my time looking for help and solutions for my older sons dyslexia and while i did read novels and went to the pub more i was still always intense about what I did!!!! So we are all guilty of it, don't be too hard on you your lovely x

  11. agree, and my daughter does the same...and when she was 5 spoke of Autism non stop...
    i believe my personality changed since the A word came (uninvited)into our lives 8 years ago xx

    lmao re lipstick & global warming!!!!

  12. Start with Mma Ramotswe and "The Number 1 ladies Detective Agency" by Alexander McCall Smith.
    Good common sense will come dripping through the Botswana sunshine as you read and escape from Autism House, Autism Road, Monaghan.
    Email me your addy and I will send you a few copies to get started. xx

    Katy: I used to go to London too, to reclaim myself, away from the A-word where no one knew me or why I was doing what I did.

    But when you do go forth and conquer the next thing - don't forget to bring what you have. Because out of all this - you have a lot! xx

  13. what a wonderful post hun, and one that i can so relate to right now
    Im right in the same process, im reclaiming me and im enjoying it, i too lost my identity and a lot more and it almost killed me.

    I really hope this is your break out and you can find the real you, it really works and if you need any one to pick you off your ass you just shout in my direction xxxxx

  14. Reading your blog for the first time. Really good post and relevant to so many carers I would say. I was just like you after my little girl's diagnoses at age 3. I couldn't get my hands on enough info - from blogs to books. It got a bit ridiculous to be honest. I nearly gave myself a brain tumour trying to decipher these really medical sciencey tomes (try 'Autism, Brain and Environment' for a fun Saturday night in. Yikes!)

    For a couple of years I bored the arse of family and friends with autism chat and in hindsight I make no apologies for it. It was the least I'd expect from my nearest and dearest and some were genuinely interested and some, I'm sure, were happy to pretend to be.

    But I did get a bit bored with myself. I'd always had three books on the go, even with 4 kids, but really since having Sarah I'd stopped reading.

    I made a conscious effort to start reading my own stuff again. And I started doing other things again too (meals out, a course, pub). And it really worked in that I know that four years on from the diagnosis there is a bit of balance. I'm boring the arse of people in a different way now, haha.

    Get that pile of books going beside your bed. Reading rocks! - it's the best place to start.


  15. Thanks for the comment Maisie's great to know I'm not the only fruitcake out there lol xxx

  16. One book I keep planing to read is "Valley of the dolls", by Jackie Wilson (I think). The autor(ess) had a son with autism, survived cancer, was unsuccessful in her career - this far my mirror image. Then she went on to write this book and became a bestselling writer.

  17. Somehow I missed this one Jeanie?? Glad it didn't totally pass me by as it's fantastic and so well written! Been there and done that with the boring everyone to tears and.,like Maisy May, I don't apologise for it!

    I'd say lots of mums get totally immersed with their children and feel they've lost themselves along the way. But it is that much more overwhelming when there's also a diagnosis to deal with!

    I do find that in the last 2 years I really am finding the real me again. For a small portion of the time that is! It's one reason I don't solely blog about the Autism in our lives.

    To follow on Taz's suggestion maybe we should have an "Autism Free Hour" even! One day a week (to start) and we can all go find ourselves. We should be careful that we don't find anyone else while we're looking!!!:D xx Jazzy

  18. truf , 3 down and one to go....
    jazzy i think the balance will return, but it'll take a bit of effort. your blog is a great reminder to me that there are other things out's so easy to forget!
    Thanks for all your comments xxx

  19. I was and still am so mad at him about his Dublin gig, I had secured several tickets and a night out was planned, hotels were booked for friends, we were all so looking forward to it and he pulls out. That is something you don't have in common. He is a quitter and you are a fighter. Your purple highness I salute you and why are we as mothers so anti-personal time? We all need to re-charge our batteries, so ahead take those selfish pills and enjoy yourself - you have more than earned it! xx

  20. it Irish Mammy. Your Purple Highness is learning fast xxx

  21. Lovely post- don't know how I've managed to miss your blog before.......I think we do consume ourselves with it so it doesn't consume us.....lovely the thought of you hoovering along to Prince LoL

  22. Yep - all consuming is the world of Autism - and like u & so many other I too devoured all that I could.

    But my saving grace is employment - I get to don a hat where I can walk & talk & sound like I know what I am talking about without the mention of the A word (most of the time!)

    but once the work hat comes off the mammy hat come backs on & it most certainly has a thread of Autism ingrained in it - (sounding a bit like Jeremy Clarkson myself :D)

    I dont think we will every get back to the people we where - but i think that is the same for any parent - but the odd holiday is a must.

    love your writting Jeanie xxxx

  23. thanks gruffalo...means a lot xxx