Monday, November 23, 2009

Twists On The Path


I phoned my sister Ann, who lives in Shakespeare country, but she was working but I ended up having a lovely chat with my beautiful 18 year old niece Hannah.
Now, before you all die of shock...I know I just don't look old enough to have a grown-up niece, and we could pass for sisters and all that (if anyone as much as sniggers I'll track you down  make you listen to Barry Manilow while I poodle perm your hair), Hannah was born 2 months before I met James and she is extra special as we almost feel she is OUR baby.
Hannah has a fab brother, who is a mere 15 months younger than her (my eyes water at the thought), who is autistic.
I couldn't talk to her too long, as my OWN autie kid (autism is the new black don't you know dahling?) demonstrated intense jealousy of the phone and insisted that "BYE BYE" was the appropriate course of action.
While chatting to my lovely niece, I was stunned by her grace and maturity in the face of adversity. There is no questioning that her childhood was not typical, and was far from trouble free...and yet she has grown into a mature, adaptable woman who is as full of love and acceptance as she is pragmatic and ambitious.


If my own neuro-typical kids grow into the beautiful (on the inside as well as the outside) souls that that my niece is, I will be a very happy mammy.
Parents of autie kids take heart...it seems their siblings, as well as themselves, grow into pretty damn amazing people.

Sunday, November 22, 2009

New Goals

Two weeks ago Bob had his IEP (individualised education plan), so James and I trotted along to meet Bob's Teacher and the Principal to discuss new goals.
It was great.
He mostly reached the goals set at his last IEP, but with some of them he still needs a very strong, visible reinforcer (eg it was intended to teach him to respond to simple instructions without prompts, and although he will now carry out simple verbal instructions, it works better when he can see a reward at the end of it...hey, maybe he's destined to be a banker!).
His new goals are ambitious, but are reachable, so they didn't scare us too much.

We aim for Bob to
(1) make fleeting eye contact with the person speaking to him at least once during a conversation,
(2) increase reading readiness and to identify on request 10 common nouns,
(3) to add numbers between 1 and 5 using concrete aids and
(4) to appropriately indicate toileting needs.

Oh...and he'll be getting homework from tomorrow....EEEEEK! Already I am dusting down the ball and chain to anchor him to the dining room table...really, I'm not too worried about it and I can always check out jazzygirl's brilliant blog as she is the Homework Guru.


I got a bit of a bright idea and decided to cut up his flash cards (which have pictures and words on them) and get him familiar with written words independent of pictures. Already he can identify "dog" and "ice cream" (that's mah boy!) and match the word to the picture, so we're off to a good start.


In a few days Ill trim the coloured edges off them when I feel he's pretty familiar with them.

I had some concerns about his resistance to holding a pencil or even a crayon, so I discussed this with Teacher and ordered some theraputty which I sent into school for him. They're already doing lots of work to reduce his tactile sensitivities, but I have a feeling that Bob will be typing before he is writing.

The IEP is a great opportunity to move forwards...put it to good use!

On another note, Bob was sick last week and missed 3 days of school. James and I were really touched by how much he was missed. Isn't it great that it's not all about the 3 R's?

His IEP will be reviewed next February so hopefully by then Bob will be criticising Dostoevsky and using trigonometry to calculate the distance to the sun....although I will be quite happy if he is adding a few numbers and pointing out the odd word in his story books.
 Dostoevsky sucks anyway.

Tuesday, November 17, 2009

Myth vs Reality

I got to thinking over the last few weeks about the confusion I felt in Bob's early days of wandering through AutieLand.
Prior to his diagnosis I researched exhaustively, desperately searching for clues that would pin a name on the bizarre collection of strange behaviours he was exhibiting.

Of course the word  Autism appeared, but I was constantly perplexed by the fact that he often just didn't fit the pictures I was reading about. I spent 15 months on a sickening see-saw of "he has no speech (autism!) , but he has a wicked sense of humour (not autism!)", "his eye contact is poor (autism!), but he loves cuddles (not autism!)" etc etc etc. It nearly drove me insane with worry and uncertainty. Hey, we've all been there, and got the t-shirt/depression/addiction (delete as required) to prove it. Personally, I'd prefer the t-shirt, but my pickled liver and depleted serotonin levels tell another story.
It made me question the myths that surround autism, partly promoted by films like Rainman (which I love, but Bob has trouble counting 5 matchsticks never mind 432 in an eyeblink.....he might eat them though..), but mostly they grew out of lack of knowledge and experience.

The myths are sometimes comical, but are never helpful.

So, because our kids are definitely not mythical creatures let's pick a small handful of fallacies to point and laugh at ...

(a) Autie kids do not feel love
...before you gallop down to the wilds of Monaghan to string me up by my perfectly manicured toes, I know this myth is a pile of poo. Of course our kids love us. Any of us who has cuddled a sick child while watching Dora for the gazillionth (yes, that's a real number *ahem*) time, or got their ears pulled, or their face licked by a kid who just expresses love in that way, knows what it means. Maybe they can't verbalise "I love you mammy" but when we tune into their language we get what they mean.

(b) Autie kids only communicate with us to get their needs met....duh!!! What kid doesn't???

(c) Autie kids have no imagination. How many of you have been told that your child has no imagination?.
Lack of imagination is considered such a strong indicator of autism that it's presence is central to it's diagnosis.
Hmmmm. Now I don't doubt for a second that Bob is autistic...(he's just too damn handsome to be anything else)...but I do question that many of the accepted traits of autism are more myth than fact. Over the past few weeks I snapped a few shots of Bob dressing up in other people's clothes, and playing house with his sister....hmmm...imagination at work methinks.... yet he's still autistic.


                                                      Bob wearing my couture pj's


                                                    Bob wearing "daddy's blue t-shirt"

                                         Bob wearing his sister's bunny slippers (great pins, eh?)

Dressing up is an integral part of evolving imagination, as kids "try on" roles (echos of empathy anyone?) of other people, mentally as well as physically.

(d) Autie kids shun company



Bob and his sister play pretend...together



(e) Autie kids have a special "gift" that compensates for their problems in other areas.
Please stop laughing, I'm being serious!
Now, of course Bob paints art deco masterpieces while performing piano concertos with his toes (when he's not busy correcting Stephen Hawking's Theory of Everything...give the kid a chance!)...but otherwise he's a perfectly normal autie kid.
I know I really don't need to spell it out, but most autie kids are not savants. Otherwise, there'd be a lot of very wealthy autie parents out there who wouldn't need to beg, borrow and steal services for their kids.

(f) autie kids are painfully beautiful....
....now THAT one is true.

Our kids are as individual as the hair on our  heads. 

 They can't be numbered in a catalogue, just recited as poetry.




Sunday, November 8, 2009

Rock n' Rolly

I spent 10 hours of my life yesterday encased in the back of my mother's nissan micra, being gently atomised by it's vibrating protests. A micra just wasn't designed to drive from the north east corner of the 26 counties to the furthest south-west point, just a hen's race shy of the Atlantic.....and back in the same day. I haven't sat in the back of a car for about 25 years, and it isn't fun, no matter how short your legs are.
My brother Joe was driving, and had his masculinity tested to the limited by being behind the wheel of a small girl's car with his mammy in the passenger seat. I added insult to injury by forcing him to call our brother Kevin (I have many brothers and sisters) on my pink Tocco. I managed to torture one of my brothers while simultaneously amusing myself on a long road trip. Result. That's a good day's work for any girl.
Today everything hurts and I am reminded that I am no longer a Sprightly Young Thing, but a par-boiled couch potato with porridge where my youthful ambitions used to be. But that's OK, as I quite like porridge.
The reason for our road trip was that my beautiful baby niece Sorcha was being christened in The Kingdom, and disintegrated joints aside, it was an honour to be there for her special day. We had a lovely afternoon and really enjoyed seeing our extended family again.

Meanwhile, back in Bobsville, James was holding the fort.
He had a busy agenda as Bob had a birthday party in the morning (with one of his classmates...a huge success by all reports!), Toad No.2 had a sleep over arranged, which would begin at precisely 4pm (she had THREE bags packed since last week) and Toad No.1 had his youth club in the evening. Phew! I really couldn't complain about being contorted in the back of a mobile bean tin.....all I had to do was chat to my mum and poke at my brother's ego with pointy sticks.
James decided that lunch that didn't involve cooking or washing up was in order, so they repaired to the nearest burger and chips emporium (aka Burger King in Dundalk). In the shopping centre they went to there is a big motorised Rolly (the green roller in Bob) that you put a euro into for a spin.
These gadgets can either be a blessing or a curse, but James decided to put the opportunity to good use and to put Rolly to gainful employment as a bargaining chip.
Bob was haded a euro and told "lunch first, then spin on Rolly". Bob, who has a 'mild learning disability' (yeah, right) didn't need to be told twice.
Whenever he started to misbehave he was reminded that he had to sit properly, eat his lunch and then he'd get his spin.
One (almost) immaculately behaved lunch later, Bob opened his tightly gripped fist, popped his euro in the slot and revved Rolley into life.
Bob, at the age of 5 1/2, has a few dozen words and still isn't fully toilet trained, and could easily be underestimated (or even pitied) as being a builder's apprentice rather than the engineering maestro we know that he is. But he knows what's important, and is more than capable of engaging with his Daddy and negotiating his reward for good behaviour.
James turned a mundane event (and one which could have been a cause of conflict) into an opportunity to learn...what a cool way to teach, with a spin on Rolly thrown in for good measure.

Friday, November 6, 2009

Home Support Rocks


Over the past few months Sir Bob has been having some "challenging" nights (pc-speak for screaming blue murder at stupid o'clock, with nauseous amounts of ToyStory required to regain peace). There's only so much kid's tv a girl can handle when the rest of the world is snuggled down in bed. People have killed for less.

As Bob's Dad  does shift work, I am often rescued from imminent Death By Insomnia when he in in a day off. But when James is at work (the pesky inconvenience of it!) I have to drag my sorry carcass around with as much enthusiasm as a wet hen.
I got tired of being tired, and I wasn't much fun to live with.

So I took a deep breath and applied for Home Support.

I'll skip being subjected to the Liturgy of the Social Worker ("well, resources are limited...if we give you help now it could be withdrawn at any time...we'll be taking your firstborn and a pound of your best flesh in repayment for a service we're supposed to provide anyway..." yada, yada, yada.) and tell you that I was given 3 hours per week of support from none other than my dear friend Lorraine, who also happened to be Bob's SNA (Special  Needs Assistant) back  in his Montessori days.

So Lorraine arrived one evening last week while James was out foraging manfully in the undergrowth, or hunting wildebeest using only his wits and his bare hands... or whatever it is that fellas do when they go to work.

The difference that hour made was quite breath-taking.
Yeah, it was great to be able to help Toads no.1 and 2 with their homework, or to put away the ironing etc etc, but the true value of having Lorraine there was that I could mentally switch off from my permanent state of amber-alert for a full hour.
It was great, and I felt like I'd had a little holiday.