Monday, September 28, 2009

A Bolt from The Blue

This morning I watched an interview by Gay Byrne (who I have to admit I had never been a big fan of) of Colin Farrell (who I had dismissed as just another gorgeous party boy who happened to be a great actor ).
Watch it here, if you get a chance.
How wrong my perception was.
Colin Farrell comes across as intelligent, thoughtful and deeply loving of his son, who has Angelman's Syndrome, while Gay Byrne asked insightful questions and actually allowed Mr F time to give a considered many interviewers do that???
Mr F pondered the nature of disability and wondered if it us "normal" people who are the disabled ones, weighted down as we are with egoism, hedonism and negativity. His son, he says, lives in the present and gives and receives love as freely as air. OK, straw poll many of us say that about our "special" kids? I know I can.

Yeah, Bob has little speech, throws tantrums when we don't understand what channel "baby rabbit" is on (anybody??? We speculate it may be Max and Ruby, so have sky plussed an experimental episode), and bites his fingers when he's frustrated...but he's so free with his affection and so unconcerned with ego that it's breath-taking, and a little humiliating.

Bob's school invited us to the school mass last Friday (our SECOND mass in 3 days...maybe there is a beardy god somewhere in the ether chuckling away to himself ), so we tried hard to remember when to kneel, stand and do the whole hokey kokey.
At the start of the ceremony, Bob and his 4 classmates each walked up to the priest with a gift by themselves (with a discreet reinforcer given to each of them when they got there) and then sat by their teachers .
OK, so maybe Bob had to be gently re-directed  from the emergency exits a few times, but the fact is that he did it, with the aid of his fabulous teachers.

Another lovely thing I noticed during the mass, was the acceptance by the rest of the school kids that sometimes the boys made funny noises, or cried or chewed on chewey tubes, but that it was really no big deal.
Not just tolerance, but actual acceptance. How cool is that?

for your viewing pleasure

We could be cynical and say that Colin Farrell can afford to be philosophical, but I really think we could all learn something from his attitude. It doesn't cost a penny to see our fabulous, "neurally-other" kids as the pretty damn amazing people they are.
Imagine I had to go to mass to see it in action??
Maybe God does have an ironic sense of humour afterall, but if I'm struck down by a bolt of lightening in the next day or two, you'll know what happened to me.

Tuesday, September 22, 2009

Swing When You're Winning

Today we were thrilled to discover that Bob's Dad will be refunded €2500 of the €10,500 it cost him to complete his masters degree in nursing .

We have approximately 40 gaping financial holes we could have dropped it into, but it would have been like dropping a sad little pebble down a deep, dark well, never to be seen we had a rebellious thought while we were pottering about in a very pretty garden centre this morning.
We figured that we'll always have debts, but we won't always have a houseful of rowdy kids who need fresh air, exercise and a safe place to blow off steam.... we blew the €2500 (before we even have it, which is kinda comical) on a pretty damn amazing activity centre.
Hopefully we should have it in a month (if the HSE honour their promise)....and I still feel giddy with excitement that we were care-free enough (and caring enough) to say  let's live in the present.

Sure, we could be accused of being irresponsible, but we have a roof over our heads, we shop in Lidl...and soon we'll have an activity centre dripping with children who are quite happy with beans on toast and shoes from Primark.

Hopefully Bob will have a little energy left over from school to play on it.
His teacher  has the boys in until 2pm now, instead of 1.30 and it's astonishing the difference a half an hour makes. She is very ambitious for them and pushes them to the best of their abilities while still loving them to bits...what a cool skill to have. I've mastered the "loving-to-bits" part, but fall short at the disciplined task-master my recent fiscal transactions testify.

I may be cast into the fiery pits of bankruptcy, but I'll have a few go's on the activity centre before I depart.

Tuesday, September 15, 2009

It's life, Spock, but not as we know it xxx

Bob has had a busy start to his school year (as any self-respecting Bob should have).
He has a new class mate, meaning there is now a grand total of 5 boys in his seems when the new facility is ready, they'll have the capacity to teach up to 18 children. I find it a bit worrying to think that he might eventually have to share his 2 teachers and 3 SNA's with 17 other little 'un's, but for the moment all is very well and I'll have a proper little worry about that when, or if, the time comes.

We've been taking part in the Autism Genome Project, which surprisingly isn't a 70's progressive rock band, but a proper research project running in Trinity College. We had our blood taken a few months ago (Bob complained more about being held tight than the about the actual needle), and last week a lovely young psychologist called out to our house to ask us MANY questions about his development. It was kinda exhausting, but was a good excuse to remedy our woes with some medicinal shiraz.

The psychologist visited His Bobness at school last Thursday and spent 2 hours assessing him there. He managed to IQ test him (hurray! the last time we tried this he gave us a two-fingered autie salute by mentally projecting PFO messages to can also see I have become psychic since his diagnosis). It seems we will be sent the results of this IQ test which will be (a) wonderful, if he turns out to be a Boy Genius, or (b) a Really Silly Test if it shows he is anything less than Einsteinian.

I am pretty curious to know what his IQ is, but ultimately it really doesn't make any difference. He's a happy little construction worker, and will continue to give us the most delicious cuddles while spitting hot chocolate down his jumper for a laugh, regardless of a number on a piece of paper.

He had a few unsettled nights lately, which caused my years of bragging about his fairly good sleeping habits to rear up and bite me on my comfortably squishy bum. I have grown to abhor Fireman Sam with an intensity usually reserved solely for the fiendish Barney (it pains me to even hiss his name). He has been waking anytime between 1 and 4 am shouting "UP!UP!" while taking my eye out shoving my glasses on my face...all because he wants to see a self-satisfied misogynist playing with his it possible I read too much into children's television?

After some brainstorming with Bob's Dad  we decided on turning his bed into a haven of All- That- Is -Bob. So, following an emergency dash to Dunnes, the purchase of one Bob duvet set, a Bob fleece and the addition of a frighteningly large stuffed Bob resulted in a full night's sleep.
Fireman Sam is history. Long live Bob!

When we meet with Bob's teachers to discuss his IEP, we plan to encourage them to teach him accounting skills. The construction trade is not what it was, and he could use his skills more productively by rescuing his family from insolvency.
After he has saved his family, I plan to hire him out to the Minister for Finance, and when he has the country back in order (neatly lined up, of course), I will give him back his tool kit.

Thursday, September 3, 2009

Sweet news...but a sour aftertaste

We had great news this week about "Bob"s outreach unit (the artist formerly known as My Son will now be renamed Bob due to his intense, and often useful, attachment to the animated Know-It-All workaholic who has difficulty expressing his true feelings for the passive aggressive Wendy...hey, could the Real Bob be on the spectrum???)


Our little unit has been allocated 450,000 yoyos to develop the service!!! Up until now, the boys have been shifted about to whatever room wasn't being used that year...not exactly banishing them to the broom cupboard, but not exactly meeting their needs either.

The principal has been very vocal in his intent to get the boys included fully within the infrastructure of the actual school...many attempts were made to fob him off with prefabs which he was assured would only be "temporary" (like the "temporary" prefabs that were built 30 years ago in my old primary school and were only replaced 2 years ago).
Thankfully he stood his ground, and when he was met with refusal he just went to that person's cut a long story short he was a complete pain to the DofE and they probably gave him the money just to make him go away. The plan is to give the boys a purpose built unit within the school which will facilitate integration with their mainstream peers.

So far so fantastic.

We are thrilled for Bob and his pals (I'll refrain from calling them Scoop or Muck, but I am so tempted).
In the great scheme of things, accessing services and education has been remarkably easy for us, which gives us great cause for celebration...but I have an awareness of the many kids for whom Outreach is just not suitable, whose parents fret and fund-raise, and sometimes divorce, from September to September, terrified that their ABA school will not exist next year.
It seems that the kids who need ABA are deemed by the DofE as some shadowy sub-culture who refuse to fit their "one-size-fits-all" model of education.
The DofE punishes those naughty, uncooperative kids by drip feeding funding, torturing their parents with cliff-hanger insecurities...and sometimes by closing schools. Bad autistic children! That'll show you!

So my son's Outreach Unit has been rubber stamped as The Model by the DofE, and I am eternally (and selfishly) grateful that Bob will benefit from their ideals...but it leaves a sour taste in my mouth that while the ink is drying on the 450,000 euro cheque, that many other autie kids are relegated to limbo, and are being punished for having needs greater than Bob's.