Friday, May 7, 2010

Smelling The Roses

I was feeling a little hard-done by earlier in the week, as the laundry and the dishes  were in danger of becoming a geographical feature in Co Monaghan.
I hauled the same squelchy clothes out of the washing machine, packed the same greasy plates (plus a few thousand tea mugs, god bless 'em) into the dishwasher and hoovered the same manic debris from the same sticky floors.
My feet felt like lead and I felt I was going  insane with the incessant sameness of it all.


But I had a little flash of insight that helped me see the woods and the trees.

I spend a lot of time teaching my kids the difference between want and need.
And I thought that maybe I should start to live by my own lectures.




I was brought up in poverty...and before you worry that this is going to become a hand-wringing boo-hoo fest, you can put away your hankies because I don't do self pity.
We were never hungry, but we lived in a rodent-infested, damp three-roomed house (a kitchen and two bedrooms), with a single cold tap, no central heating and no bathroom or toilet.
That was home to my two parents, six kids and a sick grand-uncle.
Our clothes were hand-me-downs, and holidays were something other people did.
It wasn't quite Angela's Ashes, but it was an uncomfortably close first cousin.
As a child I didn't think anything about it all, but now I am filled with relief that I don't have to raise my kids in the same conditions.



Without being sanctimonious, I feel tremendous gratitude for the kitchen appliances that I am graceless enough to moan about, for the heat I can comfort my family with at the flick of a switch, and for the warm, dry beds I settle my children into at night.
I'm also a little ashamed of myself for complaining about the cost of fuel (for our TWO cars), the price of insurance (for our FOUR bedroomed house) and the unending amount of laundering of our  (FOUR wardrobes full of) clothes.

By extension, I am also almost giddy with relief that Bob has access to an excellent Outreach Unit, is transported there and back by a taxi I don't have to pay for, and that he has some semblance of services for his autism.

His services could (and should) be better, but if Bob was born in 1970 instead of me, he would have been institutionalised in a hospital for the then-called "mentally handicapped".
Goodbye Bob, hello medicated, incontinent, spoon-fed, speechless cast-off.




This is not to say that that just because things are good, that they shouldn't be better...it would be wrong to stop fighting for improved services for our special needs kids just because our current society is good enough not to lock them up and throw away the key (season with sarcasm to taste).
Whoopee for current society.
But sometimes I want so much more for him than he actually needs.
We are lucky enough to live on this small, imperfect rock clinging to the west of Europe, where food, heat, shelter, education, healthcare and justice are expected (if not always delivered) and where we at least have the foundations of improvement dug.

What I want for him is to be normal (may I be burned at the stake for heresy) ...but I suspect that in the wee, small hours of the night that this is what most autie parents wish for. 


But what I need for him is really not much more than he already has.
He has a family who love him, a school who are ambitious for him and he is as healthy as a wild duck.
He has services that are not frequent enough, but that give me the tools I need to educate myself and become his 24/7 therapist (as well as his Doting Mammy, of course).
He has his angel Lorraine for 3 hours a week for home support, to allow me time to search among the drumlins of Monaghan for my mental health (I know it's there somewhere).




If I was in the God Squad, I'd say a prayer of thanks to the patron saint of Tumble Driers, Speech Therapists and Ford Mondeos.
But as I'm likely to spend eternity being gently sautéed in the pits of hell (where they have better parties anyway) I'll just thank my lucky stars that Bob was born where he was, when he was.
And to continue fighting to Good Fight, while smelling the roses in the garden.






32 comments:

  1. love it! you've said it all really! I'm thankful every day that Button landed in our family. Things could always be worse xx

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  2. Fantastic blog hun, Its true we want more than we actually need in this world, its sometimes a case of one upmanship getting the better of us. Having a special needs child there is certainly a difference between need and want, we want more services that our children NEED and are entitled to. I thankgod that we are not in those days where children like ours were thrown into mental asylums and the key thrown away. xxx

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  3. Also felt the hard done by thing this week, so really relate to this, and I know of kids who were locked away when I was young. So glad times have changed xx

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  4. @ Hammie, Taz, Andra and Blue Sky cheers for your lovely comments.
    XXX

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  5. Hey Jean absolutely brilliant post. Strikes so many chords with me x you are so lucky that Bob has found a great school, that's 'one' of my big fears because I think it determines so much. Excellent blog, loved it x

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  6. Thanks Patsy...maybe I've gone a little mad with the extra daylight lol xxx

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  7. Fabulous post chick. I don't just want to read your blog, I need to! You have such a way of putting the words to the thoughts that rattle away in the back of my head at times. Absolutely brilliant writing as usual :D xxx

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  8. @ Petunia...thanks...my giant head is now having trouble getting thru doors xxx

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  9. Exactly what I NEEDED to read today. Thank you.

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  10. When I got to sit down (finally) I was delighted to see you had blogged (see, now your head can get even bigger lol). I want to address every point you made but they seem so big and so well put, that I just can't add to them. Suffice to say it's a big YES from our house. Things could be so much worse, but they aren't. I do find it easier to just go day by day and not sweat the small stuff:) Jen.

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  11. @ Lorraine and Jen, glad to be of service my dears XXX

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  12. oops....I seem to have logged on as my husband above xxx

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  13. LOVE IT!!! What quality writing you have Jean. You are so right in all that you said. Ruth G. xxx

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  14. @Ruth, thanks for that xxx

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  15. wow, your thoughts are so well expressed...feel same as you..didnt exactly come from depts of poverty but with 10 kids I dont know how my mother did it but we survived!! I agree, I WANT my boys to be normal too....xxxx

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  16. Simply brilliant.. Amanda x

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  17. absolutely fabulous, such a lovely post
    we have a lot in common hun, would love to meet you some day but not to talk about pasts but how were doing now xxxxx

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  18. Thanks Amanda and CoolKid...hope we do meet some day xxx

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  19. @ Joey's Mum...I think not coming from a privileged background does make survivors of us. Thanks for dropping in hun XXX

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  20. Brilliant writing thank you so much for sharing your thoughts with us Maria xxx

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  21. You write so well and so evocatively-any way you would consider writing something longer? You obviously have nothing better to do:-)

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  22. I also remember a time with children with Down Syndrome were locked away from the public, sometimes in their homes sometimes in orphanages. Hopefully things have changed for the better. You are right that there is a big difference between what we need and what we want. Well written piece and I too want to worship at the altar of the white kitchen goods!

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  23. Knowing you even slightly, I doubt you will be stewing in hell Jean :-) So, could you add to your prayer (coming from a hardcore agnostic like me) modern medicine. In the days when I feel sorry for myself, I try to remember that without it I would be dead for years. And so would be some of the children we blog about. Amen.

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  24. @ Irish Mammy, I'm glad things are changing too
    @ Truf , medicine is something I'm a little in awe of...my late Dad often said that when he was a child it was fairly regular for a child at school to die, and that no family expected all their kids to make it to adulthood. We are living in fortunate times xxx

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  25. BTW award for you over at mine!

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  26. your so right about lots of things here! My older brother has an intellectual disability and he was never hidden away , he lived with us and had a good life until going into residential care about eight years ago where he continues to have a fantastic life! My point is though my mum didnt receive carers allowance or early services, she had to wait until he was nine for him to get a school place, he was incontinent and she paid for his incontinece sheets, her husband died and she had to work us kids had to mind him, there was basically no support if you chose to keep your special needs child at home. Things are not so bad really for us mums of special needs kids, you are so right about that xxxxx

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  27. Thanks for that popsie...you brother is a really lucky guy. It's really good to appreciate what we have XXX

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  28. allow me inflate that head a wee bit more...brilliant Jean...similar upbringing here..just chattin with one of my sisters yesterday about how our ma coped with 6 kids and 2 old relations livin in such a small house and only electrical appliance was fridge. remember how red her hands were after scrubbin clothes in a basin with Daz/Omo....we are spoilt in comparison and still we whinge...but its not 1970s and things thankfully have improved including educating the ignorant...could never in my wildest dreams imagine my Babs in an institiution and yet back then he could so easily have been....see u at the party....xx

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  29. PML sesame...yep, I remember the red hands very vividly too...see ya there doll xxx

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