Friday, April 30, 2010

The Week That Was

We are having a lovely Friday evening on Planet Outreach.  And that's not in spite of the regular lunacy that envelops us, but because of it.


Picture the scene.
The Teenager is to my left, belting out Led Zeppelin on his electric guitar.
To my right, Ellen is murdering practising the tin whistle.
Bob is running around asking for "marshmallows" with perfect pronunciation, and all the while The Teenager is sustaining an encyclopaedic monologue on XBox games.
The table is littered with music sheets, toys and crusts leftover from breakfast...basically nothing that would constitute a good dinner, but could easily be mistaken for the contents of a bin.
Pizza and chips are starting to sound good.
Bob has Transporters twittering on the DVD, In The Night Garden warbling from the sky-box and the Real Bob lamenting the lack of reliable staff from the DS.
In between mangling the tin whistle, Ellen takes enough breath to agonise over what to get for her birthday (FYI a Hello Kitty phone, or another Sylvanian house...the girl doesn't lack ambition).





Ya know what?...  It's great.
This is exactly where I want to be and what I want to be doing.

We have had a hard, but productive week in which a token exchange system was introduced to help us get through Bob's difficulties with his homework.  Up until recently we had no homework issues at all (I picture Jazzy chortling away to herself in a corner somewhere) but a few weeks ago he decided that homework just isn't fun and I won't be doing that any more, thank you.


I talked to Bob's teacher about it and she sent home a token chart, where he chooses a reward he wants to work towards (usually the DS, or a biscuit) and is awarded one token for each piece of homework done...when he has completed the three pieces of work (and has 3 tokens stuck to his chart) he gets his reward.  It works like a dream with Bob's Dad and homework is done at warp speed.
But...when I'm on homework duty he turns into a fun-sized Elton John and it's tantrums and tiaras on the dining room floor.
I'm working on it, and it's hard at the moment but I know it will improve with patience and persistence.
Either that or I need to start testosterone injections and grow a beard.

My optimism is buoyed up by the great ABA course I am now halfway through at the ABACAS school in Drogheda, so I am qualified to bombard you with terms like "token economy" and "chaining" with wild abandon (I find if you say anything with enough authority in your voice, people will generally believe you Know Stuff...I once scored a pachillion points at scrabble using the word "vax", which I insisted was a verb...it still pains my brother and gives me wicked pleasure in equal measures ).
Seriously though, the course is   giving me a deeper understanding of the methods being used at school, and is another step at helping Bob along his road.  I would encourage any of you autie parents to do one when you feel the time is right.

It has been a week of volcanoes, outlandish political pensions and the sudden death of  Gerry Ryan.  An eye test was attended, troubles brewed in Northern Ireland and the Greek economy made ours look positively thriving.
And life goes on.
We just gotta live every precious minute of it, for the short, sweet time we walk this Earth.

I was also tagged by Jazzy with a Gratitude Award, so here is a list of things I feel most grateful for;

1. My gorgeous husband and kids.  'Nuff said.
2. My friend Lavinia telling me to get Bob assessed, when everyone else told me I was over-reacting.
3. The swallows finally making it back to Ireland.  It's Spring!
4. The first sip of tea in the morning.
5. Sleep (oblivion and beauty therapy all in one...genius)
6. My friend Lorraine who came to my rescue in Bob's early autism days as his SNA in Montessori, and continues to earn her wings and halo as my home support...oh, and she's a good drinking buddy too.
7.That my 3 kids have never stopped hugging me, even though one of them is now (yikes!) taller than me.  Their hugs are only lovely.


OK, that'll do you....hmmm...who shall I pass this onto?  I suspect it's been doing the rounds, so I propose that if you're reading this, consider yourself tagged.


I have suddenly found myself capable of reading books without the word AUTISM in the title...after 3 years in a literary wilderness, this is a big deal for a former voracious reader.  I have many books to catch up on, and I am starting with one of my all time favourites, Roddy Doyle.
In my imminent future I see much neglected housework,  weeping eyestrain and many cups of tea.
Happy days.

Monday, April 26, 2010

Never, Ever Give Up

I'm upstairs in my study listening to Bob humming in bed, while policing his occasional freedom dashes to the landing.
He's not gonna win as I have my Reeboks on, but I have to give the kid top marks for tenacity...he doesn't stop trying.




I'd love an ounce of his ability to keep trying.
He uses this skill to pick locks, scale walls and move educational mountains.



I mean this literally...
(...metaphors are for the non-autie community).

I am optimistic that one day this skill will enable him to better verbalize his needs, to be more independent and to become all that he is capable of becoming.

Sometimes I stop trying because of a boring list of "reasons" too tiresome to type...
...yet my *cough* disabled child never says "Never".  
It's just not in his vocabulary.




That's a pretty cool language I'd like to learn.

Wednesday, April 21, 2010

SuperMom Sucks

I'm fed up of being SuperMom.



This morning started with a fully leaded, fuel injected, turbo powered tantrum (for there is no other word to describe it) from my 13 year old neurotypical son.

The day wore on with five loads of washing, the frenzied hoovering of scattered pink fish-tank stones (don't ask) before they became an entrĂ©e, in addition to the usual general feeding, watering and bum-wiping that punctuates our days.

Then I looked in the mirror and saw a living paradox gaping back at me...grey hair and  acne.
Mother Nature is a bitch from hell.



Today I really thought I was losing it.
The tension within me was coiled tight enough to spark a small (but perfectly formed) nuclear chain reaction, resulting in a black, charred hole where my home, and my soul, used to be.

It didn't happen like that though.

And I thought, "Why  the hell not???"
What is the magic ingredient that stops us packing a small bag (mostly full of Dermalogica products), nicking the Husband's credit card and hightailing it to Hawaii...
.....For Ever??

I'm not into sentimentality, so if ever a movie is made about my life, Robin Williams won't be in it.
But...
...it has to be plain old love, doesn't it?



Sure, lots of things may come into play like a sense of duty, guilt (especially if you're oirish), and plain old not-knowing-what-else-to-do...but none of those things would fuel us with the stamina we need to stay on course with our autie kids.

Those Greek legends got it all wrong....while the Gods were wrecking their heads trying to fox heroes with the acquisition of golden fleeces and  remonstration with disagreeable Titans, all they had to do was chuck Jason an autie kid and say "live with that!".


It's enough to test the mettle of any demigod.




Yet us mere mortals seem to be doing an OK job of it, even when we have days that make 'One Flew Over The Cuckoo's Nest' seem a desirable holiday destination.


How come I could hug and kiss my three kids tonight, when earlier today I would have braved any amount of volcanic ash to be catapulted anywhere else...as long as it was far, far away?


Answers on a postcard please.

Saturday, April 17, 2010

15 Things About Me



I was tagged by Lora to post on 15 things about me, so I polished my ego and produced something light for you to enjoy with your morning coffee.
Point and laugh as you will.

1. THINGS THAT SCARE ME
- the dark
- deep water
- not being able to find one of my kids





2. PEOPLE WHO MAKE ME LAUGH
- my sister Mary (strange sense of humour!!!  ...which I completely get, of course )
- my brother John (infantile sense of humour...absolutely love that a 30 year old man telling lollipop stick jokes can make me lose my breath laughing)
- Eddie Izzard (a God among men)



3. THINGS I HATE THE MOST


- hangovers
- Jeremy Kyle
- running out of tea



4. THINGS I DON'T UNDERSTAND


- t'internet (best approached in full body armour wielding a pointy stick)
- the current retro 80's vibes...the 80's were horrible enough first time around...leave it where it is!!!!
- The Theory of Relativity

5. THINGS I AM DOING RIGHT NOW


- erm, drinking a giant mug of tea while typing
- listening to Bob watching Transporters
- loving the daffodils in the morning sunshine



6. THINGS I WANT TO DO BEFORE I DIE
- I've decided I'm not going to die, so this bit doesn't apply

7. THINGS I CAN DO
- drink a very impressive amount of tea
- remain patient with my kids if they wake me at 4am
- read upside down writing

8. WAYS TO DESCRIBE MY PERSONALITY
- contradictory
- lazy
- a bit strange





9. THINGS I CAN'T DO
- drink whiskey (bleurch)
- enjoy Country and Western
- concentrate on the innards of politics







10. THINGS I THINK YOU SHOULD LISTEN TO
- birds singing while you're hanging out the washing....all is well with the world when this happens
- proper traditional Irish music (and not the cross-bred C and W horror show that is often mistaken for it)
- me

11. THINGS YOU SHOULD NEVER LISTEN TO
- a man promising you sweeties if you'll get in his car (unless they're minstrels...yummy)...this is also usually OK if the man in question is your husband
- the lady at the make-up counter insisting that orange foundations warms your complexion...this will only serve to make you look like you're in the terminal stages of liver failure
- me

12. THINGS I'D LIKE TO LEARN
- to speak fluent Irish
- how to dance with a little more grace than a drunk, electrified rhino
- how to plug all the holes in my leaky memory, so that I can remember what day it is







13. FAVOURITE FOODS
- freshly baked pizza
- banana split
- my sister Kay's sponge cake (mmmmmm)





14. BEVERAGES I DRINK REGULARLY
- this will shock you....tea!!!
- the cappuccinos you get in Butlers
- red wine









15. SHOWS I WATCHED AS A KID
- Playschool
- Dr Who
- The Magic Roundabout






16. PEOPLE I AM TAGGING TO DO THIS....
-Taz
- Blue Sky
- Dr Destructo's Ma

Thursday, April 8, 2010

The Correctness of Political Correctness

I stumbled across a blog today that really got me thinking about disability and political correctness.
The writer talks about an incident at a Frankie Boyle gig, in which he told a lady who was offended by his "jokes" aimed at people with Downs Syndrome to "f**k off" (the lady's daughter has DS).
Frankie Boyle's hostility towards the lady is shocking and he clearly felt no remorse at mocking a group of people who have no hope of defending themselves.
But what really bothered me is that I can only assume that most people in the audience felt that people with Downs are fair game for ridicule, since it would appear that no-one supported the lady.

I went for a walk around the hills of Monaghan this evening when my Angel Lorraine arrived, and I was busy whacking the grass away from the verge when it struck me that I felt angry (regular readers will know that it takes a while for my synapses to snap).

I thought "why are people with disabilities reviled???"


The basic unfairness of it is unspeakable.
The fact that there is a need for support groups and advocacy agents is proof enough of society's intolerance of those less-than-perfect.

And I was REALLY pissed that I loved Frankie Boyle on Mock the Week, while he was making a living out of making cheap swipes at a vulnerable group.
The school yard bully makes good...but it's chilling to know that he has an audience willing to pay good money to laugh at his jokes.  And that they think it's OK for him to swear at the upset mother of a Down's Syndrome child in his audience.


Maybe I've been living in a happy little bubble, but boy did it burst today.

Perhaps it's hit me so hard because I would have paid money to see Frankie Boyle perform if he came here, and I had to ask myself the deeply uncomfortable question "what would I have done if I was in the audience?"


Of course I can't answer that, and I'd love to imagine that I would storm out in defiance...but the reality is that I might have uncomfortably squirmed in my seat and said nothing.  It's hard to be the single voice of dissent in the crowd, and I applaud the lady who challenged him.
Maybe anger would get the better of me and give me courage, though, I just can't tell.


While I was abusing the sorry greenery, it also struck me that intolerance of those with disabilities is ingrained in our histories.
When I was a child, there were no kids around with disabilities....because they were ALL institutionalised.  They weren't spoken of, and they were never seen.  Ergo people with disabilities must be something to fear and loathe, right?
Even the bible talks about unclean spirits and possession by devils... vilifying those who are 'different' as being evil.
There are religions who believe that those born with a disability are paying for their sins in a previous life (which also neatly absolves them of any responsibility towards them) and  breaks open the ugly path towards abuse and derision.

This evil culminated in the eugenics movement which involved not only Nazi Germany exterminating all who were considered undesirable, but also saw Sweden enforce the sterilisation of 62,000 people with learning disabilities for fear that they would breed and contaminate their race.
It is deeply disturbing to know that this practice was not only acceptable, but actively encouraged...bringing me back to the Frankie Boyle audience.
Do people who find humour at the expense of the disabled also believe that the world would be a better place without them?

Historically, infanticide of disabled children was practised, and even enforced, in some societies but we like to imagine we have moved on since then.
When derision is poured on our babies by the likes of Frankie Boyle, and when audiences pay to be amused by this derision, it puts a chill in my heart.

Thursday, April 1, 2010

My Social Butterfly

Bob was quite the social butterfly last weekend, as he was invited to the birthday party of the exquisitely pretty Belle (daughter of the fabby  Taz ) which he attended in Drogheda, en route to the hills of Wicklow to visit his uncle John and his bird Alison (got all that???  good, coz I get confused).

We were a little apprehensive, as Bob didn't actually know anyone at the party and it was in a place he was unfamiliar with. But we were among friends so we thought "even if he does (schlock! horror!) behave like an autie kid", that no-one will raise an eyebrow.
Apart from having to carefully guard the birthday cake, and marshal the exit in case of a daring escape attempt, all went exceedingly well.  I would, however, advise anyone who invites Bob to future birthday parties to lock up their marshmallows, as he jealously  guarded them throughout (mostly in his stomach).
He had a hesitant start, but was seduced into the main play area by bubbles and a big orange ball he shared a brief, but passionate, fling with.




He also loved the jungle gym that was produced later on, and used it to work off the marshmallow sugarbuzzz.




It is a big deal for an autie kid to be invited to a Regular Kid's birthday party in his own right...not as an after-thought tag to a big brother or sister.  I want to thank Taz from the bottom of my heart for treating my son with respect, acceptance and a whole lotta love.  You rock honey!

Bob's Dad and the Elder Toads collected us from the party and we braved the M1, the M50 ( Jazzy's *cough* favourite road) and the M11 / N11 (wish they'd make up their minds), with only the occasional  groovy wriggle from Bob's seatbelt, and not too many demands from the elder toads to stop looking at each other.
Road-trips are FUN!!!

After our recent episodes of moonlight screenings of Dora and Fireman Sam, we were a little worried that another dose of unfamiliar surroundings might be the undoing of our recovering Night Owl.
Thankfully, our fears were unfounded and he slept like a....well, not quite a baby, but a 5 year old autie kid who had been partying all day.

On Sunday morning we had an episode (euphemism for minor-ish meltdown) precipitated by a fruitless early morning search for "Bob on YouTube",  but an extra-special blanket hug from Auntie Alison (she adores being called auntie heeheehee)



and a visit to a nearby waterfall calmed his frazzled nerves....(OK, and maybe ours as well).




Hey, we survived An Unusual Weekend Chez Bob  (the pilot episode of a future mini-series) and feel the better for it.
And to think we were worried about parties....bring 'em on baby!!!