Tuesday, October 27, 2009

"I Love It When a Plan Comes Together!"

I took Bob off to his ST/OT appointment this morning, after having a great few days with him.
I decided to try giving him a few minutes of tickles and deep massage early (ish... mornings are the work of the devil) to see how that set him up for the day. These are things his OT advised me will help to bring out the best in Bob (that, and LOTS of swinging and jumping...phew! I'll definitely need a boob job and bladder reconstruction by the time he's grown up)
...and hey presto, it was less difficult to make him interact and he was generally happier all day.
And not a dolphin in sight.
No clip-clop of fabulously maned horses galloping over the Himalayas.
And definitely no Shaman wafting suspicious (but rather interesting) smoke over him to exorcise his "demons" (don't get me started on the demon-autism thing...you'll be here all night and you'll get terribly bored and want to sedate me).
It was plain old OT doing it's funky thang. Repetitive (OK, tedious), and definitely not magic...but effective in it's plodding, unsensational way.
I spoke to the OT about the difficulty we've been having with group work (as in, he simply doesn't do groups, dahling, and would much prefer to slither off his chair and eat his artwork). She advised that a group of 5 was likely too much for Sir Bob to cope with so she suggested that we take a step back and do "group" work in pairs. Simple genius.
Bob' autism team work in a different jurisdiction to his school so they can't visit him there(long story involving bureaucratic attempts to move him to another area as the borders were adjusted...and polite, but bullish heel-digging by me), but there is very good relations between them and Bob's Teacher. One of the SNAs has attended some of his sessions and there is a healthy dialogue between us all.
Good communication and a willingness to work hard between the Autism Team, the school and our family have resulted in slow, steady progress. It's not the stuff of blockbusting best sellers, but it's the real, honest bricks and mortar that are building a happy, well-rounded little site manager.

I love it when a plan come together.

On another note, the activity centre that Bob's Dad and I frivilously purchased a month ago arrived today...I have friciton burns on my butt from the slide (the silly people seem to have made it too narrow *cough*...)...and we may stand accused of being less-than-sensible with our meagre euros...but we're having so much damn fun that we don't care!
In your face Recession!!!

Saturday, October 24, 2009

Feel the Fear and Do It Anyway

While I was trawling through a ton and a half of ironing this afternoon, I felt an uncomfortable nausea grip me.

It took a while for me to identify the anxiety I felt as guilt.

I could hear Bob pottering about in the toy room, doing Bob things (licking his fingers, flicking through books and moving his toys about...and perfectly happy to do it)...and I had the intrusive, breath-stealing thought that "I should be doing something with him".
I have moments like these throughout the day...when I'm cooking, when I'm in the shower, when I'm helping Toad no.1 and no.2 with their homework...."I ought to be teaching him something".

The panic can be overwhelming.

I experience a sense of time passing, uncontrollably quickly, while I am powerlessly consumed by Other Things (the Damn Dailies, in Dr Phil-speak). There just isn't enough of me to evenly spread between three children, my lovely husband and a home to organise. That, and the awful fear that I am failing Bob. That I am not doing enough to make sure he eventually fulfills his potential.

I am not fishing for reassurances when I say this...I suspect many of us autie parents feel the same fear.
Now that Outreach is closed for a week I can no longer heave a relieved sigh, knowing that Bob is being taught very capably from Monday to Friday. Now the responsibility is squarely back on my wobbly shoulders.
And sometimes I just don't feel up to the job.
All I can do is love the little monkey with all my heart and hope that it's enough. I do a little ad hoc teaching when the occasion presents itself, but otherwise my therapy consists of hugs, kisses and mega cuddles on the sofa watching Dora (again).
I feel the fear, but resist the urge to rush down to the toy room, manacle him to the dining room table and bombard him with flash cards and ladybird books.
I resist because I know he is happy, so I finish the ironing.

Monday, October 19, 2009

Obsessions Rock!

I have been told over the last few years that it is wise to use your autie kid's obsessions as a teaching tool.

I nodded and smiled politely, and filed this nugget in a drawer labelled must do that some day, beside other gems like body brushing, swimming lessons and regular foot massages.
 All valuable goals to work towards, but all put on a finger so long that they were barely visible on the horizon.
(I have freakishly long fingers...)
...and besides, my son didn't have obsessions (please refrain from laughing at this point, I'm being terribly serious don't you know).

A few days ago I checked to see what Bob was doing, as he was suspiciously quiet and we have two very inviting chimneys in urgent need of exploration. I was relieved (and frankly, surprised) not to find him impersonating a Victorian chimneysweep...and then rather shocked to see him playing with a box of duplo we bought him for his birthday a year and a half ago... the same box of duplo I was considering giving to one of his cousins as it was sadly gathering dust bunnies, weeping and neglected, under a table. If there was ever a need for duplo prozac it was living in our toy room. I felt obliged to remove shoes laces or any dangerous objects from it's immediate vicinity in case it tried to do anything stupid. It was tragic.

So, here was Bob actually building (the irony!), and not only building but putting a Bob figurine through a window, up a slide and under a bridge.
 Feathers knocking me down etc etc.
I could barely see Bob through the feathers.
So I plonked my butt on the floor beside him and used the moment to reinforce prepositions, which Teacher had told me they were working on at school. After many "under"s, "over"s "through"s and behind"s (all thanks to his endless fascination with an animated control freak), a drawer in my mental filing cabinet slid open.
I had an A-Ha Moment.
 So this was using his obsessions.

And as a sweet double whammy, he may also have saved a depressed box of duplo from flinging itself at the mercy of a Charity Shop and ending it's days in bitter, hand-wringing, abandon.
Well done Bob! Obsessions rock!

Saturday, October 17, 2009

A Healthy Slice of Reality (choccie flavoured)

A few evenings ago I was chatting to my funny, handsome, clever little brother (...all those yummy traits wrapped in a handy John-shaped bon-bon...God, I'd hate him if I didn't love him so much) and the conversation turned towards my favourite subject of autism. Well, OK, maybe I turned the conversation in that direction, but what's a girl to do? I like to talk. And the silly boy was held hostage by my verbal diarrhoea on the other end of the phone. He really should have pressed the mute button.

I talked about how autism had changed the direction of our lives in an utterly unexpected, but not negative way, and waxed lyrical about the strengths and qualities Bob excavated out of us, from depths we may not have plumbed otherwise. I philosophised about how we were forced to face adversity and how we emerged, broken and battered, but intact on the other side of acceptance.
Kind of like the bionic man, only prettier.

Midflow through my poetic stream of consciousness, Bob appeared before me...not clothed in ermine with a halo of gold (as I would have John believe)...but plastered in soot from head to toe, identifiable only by the whites of his eyes.
The poetry was promptly replaced by a string of expletives, that reflected reality more truthfully than all the flowery language I used prior to the chimney-sweeping that Bob occasionally indulges in as a nixer (hey, there's a recession dontcha know).
A healthy slice of Reality Pie had been served, with cream on the side.

Ya know what, with the saccharin removed, it tasted just fine.

One industrial-strength shower (and a text to John advising an emergency vasectomy to forestall any similar chimney-sweeping issue, which I hope he'll ignore) later, I thought "is this what acceptance is?"

...I'm at the crossroads between the philosophical truth that autism forces you to become a bigger person that you ever dreamt possible; that you can embrace what you imagined would be your demons only to find that they are the source of your deepest strengths...
...that, and the harsh reality that you will spend years cleaning poo, teaching your 5 year old to wave "bye-bye" and explaining to onlookers that "no, my child is not a spoiled brat, he's autistic, now kindly PFO".

My Reality Pie was sweetened by the chocolate flavoured kisses I shower Bob with...there's always a smudge of choccie spread on him somewhere.

I must talk to John more often XXX

Monday, October 12, 2009

Get On The Bus!!!

James (Bob's Dad) and I recently had a chat with Bob's Teacher about his progress. Her dedication , and relentless will to improve the lot of our little ones, never ceases to astonish me. I think it's her refusal to ever be complacent about their achievements that impresses me most...she loves the boys like her own, and even though she praises each accomplishment to the heavens, she doesn't allow herself to relax and say ah sure they're grand now, lets lie back, wraith-like, on our laurels and declare "this is as far as we go...anyone with autism can get off the bus now".

Bob appears to be a sharp little Builder with a great capacity to thrive on a 1:1 basis. However, when in group work, he declares himself redundant and mentally potters off to the educational dole queue where he engages in Herculean attempts at flinging himself off his chair while shutting the group off. The only construction he attempts is the erection of a mass concrete wall between him, his teacher and his good buddies.

And Teacher does not fondly pat his little yellow helmet and say "ah sure he DOES have autism, bless him"....Teacher says "Bob, this is not good enough. You can do better".

Now James and I have become a little complacent over recent months....we have 3 kids and busy lives and ,hey, we knew what Bob meant when he dragged us to the press and screamed. Obviously he wanted choccie spread sandwiches and we didn't really need to go through the whole rigmarole of "Bob, look at me, SAY what you want" ( especially when Toad No.1 is tapping his foot to get out the door to soccer and Toad No.2 is having an anxiety attack trying to choose between turtle or ladybird earrings).

Bob's Teacher very nicely pointed out that we needed to return to basics in order to break down his self-engineered wall, and to keep him a comfortable passenger on the Big Bad Bus. She didn't say it bluntly, but very professionally, in his daily journal about the intense work they were doing to improve his eye contact and ability to verbalise his needs.

So, lords and ladies, sorry to cram not one but two cliches into one sentence (brace yourselves) back to basics and get on that damn bus !!!!!

Wednesday, October 7, 2009

DIY OT.. Acronym Heaven

Bob, like most kids on the spectrum, has many sensory issues. While they're not life threatening or dangerous, they do impact significantly on his quality of life.
For example, it can be viewed as kinda comical when a small boy strips off and proudly displays his crown jewels to the passing traffic....but fast forward ten years and the comedy will likely be unappreciated by the local constabulary, and the public in general.
Not being able to tolerate walking barefoot on sand or grass is no big deal now, as Bob can still (just about) be hoisted onto Daddy's shoulders and carried across it. In a few short years we'll need wheelbarrow or a forklift to transport him. Either that or I start taking anabolic steroids now and seriously hit the gym.

He gets a ST/OT (Speech Therapy/Occupational Therapy) sessions about once a month, which is great, but hey, he needs it every day, and short of winning the lottery (or kidnapping an unsuspecting OT and keeping them prisoner - tempting, but illegal)...Bob's needs will have to be met by Yours Truly.

Now, I'm not an OT. Sadly, no-one mentioned to me 20 years ago that one day I would have a gorgeous, loopy son who would need lots of OT, lots of the time. I would have worked a bit harder at school, got an OT qualification, and while I was at it, studied ST, psychology and physiotherapy as well.
What an oversight!

Over the last few years I've read, watched , listened, googled and learned and now have a reasonable grasp of the kind of input Bob needs (mostly jumping, swinging and deep massage). I briefly became enamoured with the notion of having a Sensory Room until I got horribly frightened by the technical equipment with the scary price tags...in retrospect I thought that I would feel less incompetent and more able to Make Him Better  if I had space-age gadgets in a dedicated room.

Then I wised up.

I have 3 kids, one husband and two dogs (I hope Bob's Dad won't be offended at being listed after the children, but at least he outranks the mutts).
It's unrealistic to make an entire room out of bounds to all but Sir Bob, and silly to fling money at overpriced toys when we have a mortgage to pay and food to buy. On closer inspection, I found that many of the OT sensory toys that cost upwards of thousands of euros, can be found at a fraction of the price at supermarkets, DIY stores and certain Scandinavian stores...they're just called humble bean bags and fleeces and lava lamps.
 It has been a small epiphany to me that we can do DIY OT, and we don't need to build an extension to do it.

And now lets go on to Any Other Business.
My dear friend Lucy has had a miracle all of her own when her 10 year old son Luke started talking after 8 1/2 years of silence. To say that Luke has inspired hope and joy in all autie parents is an understatement. There have been many emotional tears and cheers of delight for this remarkable young man. Well done Luke, your mammy's years of patient love and dedication is clear to us all