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Raising little Westies, and life as parent of a special needs son
It has taken me a day to come up with something sensible to say.
In 1996, the day after Australia Day (which back then was “just another public holiday” not “cause for celebration”), Rebecca and I tied the knot in a small country church in a town on the North Coast of New South Wales.
For a while there was some frustration that my whole family wasn’t there. It would be great if I could say that frustration is behind me, but to be honest, one of the lasting memories of that day is my brother not being there – despite having said he would be.
What a shame that such a negative thought would be at the front of my recollection of such an important day!
It didn’t overwhelm my emotions on the day, or the happiness I felt after being formally announced married and leaving the church, even, how I felt after not knowing what to say when I made my speech at the reception.
Since that day, my love for Rebecca has only grown. It has been tested. We have had time apart due to the challenges of life, which saw me finish my time with the Army Reserve. Experience has, and continues to, teach us both what each of us will accept, what each of us deserves.
She has followed me from one end of the state to the other, and then, despite being “country people”, to an inner city suburb of the nation’s largest city. And from there, to the “disadvantaged” western suburbs – where we now own a fibro shack in “the Druitt”.
We have been blessed with three children, and in return been confronted with the challenge of our youngest son having autism. Together, we’re pulling ourselves, and all of our children, through this as well.
The challenges have tested us. But we are together and together we will rise over the challenges and our love will help us overcome whatever confronts us.
Do I want to be in a stronger place for our 20th? Hell yes. But together we can be.
In NSW they have this list for “is your child ready for Kindergarten?” (To “ease the confusion”: Kindergarten in NSW is the same as Prep in Queensland & Victoria – it is the school year for most kids the year they turn 6, but some will not turn 6 till the year after (“year 1”) ).
Here at Westy Central we’ve got Bob the Builder Fan. Pre-verbal. Pre-reading (in fact, at his most talkative when “reading from a book”). Pre-writing.
Assertive – but non-verbal.
On his way to an Autism Support Class in a mainstream school.
Counting, easily identifying who has the biggest piece of cake, or the most biscuits, and why isn’t it him?
With a keen eye for detail. Just not able to tell us why, or what it is, that makes this one different to those ones.
Able to spell his name (computer passwords are great tools for spelling!!) – but not say it. But can name & identify from a tiny fragment of a picture, over 40 Thomas the Tank characters, and 15 or so Bob the Builder characters, as well as his pre-school teachers – and all the teachers and kids from his new class. Can name himself in a photo – but not say “my name is…”
Spent all afternoon drawing… the same happy, sad and angry faces, over and over.
I so want to be at school with him next week. But I know he’ll be… fine. Lost. Great. Terrible. All that and more, all on the same day.
Success on day 1? The teacher at least having a strategy for how the next day can be better. Assuming she doesn’t tell us “Wow! What a great day! We can hardly keep up with him!” (We’ve heard that twice before… LOL!)
This time around the Westies are in luck: not only are we high and dry but no-body remotely related to us has been flood afflicted.
For my early childhood, apparently being flooded in – or out – of the family farm was a routine event. There is a photo of me in a highchair well after the floodwaters had receded. The highchair is on top of the dining table. The water mark on the wall passes about the level of my chest.
And apparently that wasn’t even one of the bad floods! It was after a flood so normal that people could bother taking time to grab a Polaroid of the moment. (And yeah, it was a polaroid taken in 1970-something – so there’s nothing to put online… 😦 )
The evacuations used to be on a truck, or a tractor, or in an “army duck” amphibious vehicle.
This time around, the floods have truly devastated Queensland. They have knocked huge swathes of Victoria for a six. And close to where I previously lived, whole houses over a hundred years old were swept away near Lockhart. And of course, over in WA they were being burned out at the same time. Maybe, before you go giving all your charity money straight to the Queensland appeal, you can check to see if someone closer to home doesn’t need your help first?
For many of us the only issue is if there will be a new tax, or if insurers will increase all policies to pick up the tab for the queenslanders. Strange, I thought I already paid tax so the pollies had some change in the tin to rebuild infrastructure, and I thought insurers re-insured their risks so that my policy wouldn’t have to increase just because other policy holders make claims.
We’ll see where that comes to, and be thankful that this time around, we were left untouched and didn’t have to join the crowd in some evacuation centre.
Having been asked point-blank on the Queensland discussion I thought the only way I could do justice to where we’ve ended up with school in 2011 is a full blog post. (Secondary title courtesy of Rebecca)
For the history lesson.
Bec and I both come from distant parts of NSW. We are not Sydney people at all. About 1998 I “fled a failing project” and came to Sydney “for a few months or so” to get into a “real IT job”.
Well, I got “a real IT job” which became a few more IT jobs. 12 years later, we’ve moved from Inner Sydney (Sydenham) to a suburb of Mt Druitt.
Mt Druitt is a hard place to live, a hard place to grow up. As far back as I can remember, the State Govt has had to come up with all kinds of inducement to get teachers to work in the area – including “we’ll pay your HECS for you if you work here for “x” years” (HECS = “uni fees”).
The suburb is home to the “school that failed the HSC” in 1996 (HSC = “last exam you do in High School” in NSW).
A suburb which is smack bang in the middle of a federal electorate named after one of the legends of the Australian Labor Party, Ben Chifley. And since 1996 we’ve had Labor govt after Labor govt, both federally and at state level.
The education system took a hard cold look at itself after those headlines in 1996. They found a schooling system that fails to connect to locals – the white aussies, the indigenous/aboriginals (every second suburb is named for some aboriginal group or another – they are 40% or so of the population), and the migrants (also about 40% of the population).
Of course, this was all totally irrelevant to Rebecca and I until some time after 2004, when we moved to this suburb.
Rebecca and I made a wonderful life decision to have 1 child every 18 months, three children in a row, starting in July 2002 (we still change our minds daily as to that being a good or a bad way about having three kids).
In the meantime, schools in the Mt Druiit area were transformed. The “Chifley College” was established, giving each previously under-performing high school a specialist area to (attempt to) specialise and excel at.
Whole schools were put on programs such as “Reading Recovery”, or dedicated to problem students (habitual truants etc). Primary schools were tasked as “Opportunity Class” schools. Plumpton High School launched it’s “Teen Mums in School” program (which has lost it’s shine lately). Pre-schools were established, reinvigorated, and raised up from being “day care centres”. And a few schools were set up as integrated support schools. (This mirrored education reform across the state of NSW – but, the Western Region of the NSW Dept of Education had boundary adjustments, and the performance of schools in the Mt Druitt area has remained under the magnifying glass of politicians, journalists, and the Department of Education itself).
We attended a succession of play-groups with the children over the years – all of which were “mainstream” “Playgroup NSW” playgroups. Nothing special there! But great opportunities for social interaction for Mum, Dad and the kids (including things like “Santa on a Harley”)! And the wonderful “my kid is better than your kid” moments that inevitably crop up.
Our daughter attended a fantastic “day-care/pre-school” – about the time BTB Fan was born. Then the money got tight.
Her and Guitar Hero Addict both attended a couple of places the following year (the year of Princess P’s 4th birthday) but they weren’t much good – so they both ended up being taken back out. Princess P drove us absolutely nuts for the whole of 2006 – she was pre-reading for at least a whole year, chafing at the bit, demanding more and more attention, stimulation… while Rebecca and I had an evolving Aspie coming along at full steam.
Princess P started at our local school – the one we are “in zone” for – the year of her 5th birthday. She was 4 1/2, well developed socially, but hadn’t actually attended “real pre-school”. She was reading by the time she was 5 (in July) and fitted in fabulously. I understand that we wouldn’t be able to enrol her if she was turning 5 this year, they have bought the cut-off date early.
The following year, Guitar Hero Addict attended a state pre-school, 2 1/2 days per week. Rebecca dropped him off, and picked him up, with BTB Fan in tow, every session. About this stage we started asking “interesting questions” about our youngest son not reaching “development milestones” at about the same chronological age as his siblings. Our GP said he was too young for us to be worried, but my SIL’s and MIL continued to prod us, and our doubts were there.
I enrolled him in a couple of different day-care places to see what their opinions were: basically they were too busy sucking up to parents to make sure their numbers stayed good to bother observing kids, this was about the time of the ABC Childcare collapse.
At the end of the school year 2008, Bec and I fronted Guitar Hero Addicts’ pre-school and I said “if BTB Fan is to start school the same age his sister did, he needs to go to pre-school in 2009”. At that stage he was 3 1/2 and we were proposing he enrol in Kindergarten (in a mainstream class!!!) in 2010.
The pre-school director said “he’s not coming here without a letter from your treating paediatrician telling us expressly what support services he requires. He is being seen by a paediatrician, isn’t he?” At this stage he wasn’t but that changed pretty quickly.
(By the way, the Director was right on the money: while they did a fantastic job with Guitar Hero Addict, they were in no way equipped to handle BTB Fan.)
We went and saw a paediatrician. He referred us to people. We talked to people. We enrolled BTB Fan in a mainstream, public pre-school. While all this was going on we settled Guitar Hero Addict into Kindergarten. Somehow his sister taught him to read, we think by about April. By about this time, we found an early intervention pre-school run by a church in our area. We worked out that it would be best to plan on two years of pre-school, four days a week. He also saw a speech therapist one day a week. We got onto the early intervention pre-school through recommendation both from the mainstream pre-school which initially accepted an enrolment for BTB Fan, which was endorsed through word of mouth from the mother of a neurotypical classmate at Princess P’s school.
At the start of 2010, we had Princess P heading into 3rd class at the same school that Guitar Hero Addict was heading into 1st class at. This school is a “Reading Recovery” school – which means every kid in the school gets small group time dedicated to reading, for at least one hour per week. Both our children were “off the reading syllabus” (ie: reading at or beyond Year 6 / 12 year old level) by the time they were 1/2 way through 1st class. So, the key subject area isn’t really doing those two kids much good.
Princess P spent 1/2 of 2010 having 1/2 the morning session devoted to learning Samoan – due to the inclusion of two refugees from the Pacific Tsunami. Again, “nice” but… her maths was lagging behind.
But in all, for us Westies, it was a great school… for our two eldest. But a great school targeting educational needs which we pretty much see as “irrelevant”.
There’s the history lesson and intro! Onto…
“Choosing” a school!
Late 2009 I started asking “how do we find a school?” It is one of the questions that bought me to Autism United! Two of my first blogs here covered “The path till now… Diagnosis & pre-school placement and Finding a “Big School”. Rebecca and I sent e-mails. We went to meetings. Eventually we had our son assessed by PECAT (who said “wish we’d seen him last year”).
They wrote a very specific report. BTB Fan’s Early Intervention Pre-School also wrote a very specific report.
We attempted to enrol our son in school, after school, after school. “You’re out of zone, you have to enrol at….” “_____ School has services for children with ______” “You have to enrol in the school you are in zone for” “Enrol at the school that seems to provide the service you need” “Enrol, and the Enrolment Committee will place you at the right location”. We got bamboozled, and confused.
We got a letter (from “the (Western Sydney Dept Education) enrolment committee”) telling us our son would be offered a place at a school we aren’t in the enrolment zone for – but it offers the class we need (an Autism Support Class) within an integrated setting. I took a day off work (sick? RDO? I don’t remember – I needed it and I took it) and Rebecca and I went to cast a very suspicious eye over what kind of hell-hole public education could offer us. At this stage I had already discussed ASPECT schools, ASPECT satellite schools, Autism Schools, etc, to death with all sorts of people (here, face to face with strangers, with work colleagues, with the speech therapist, the paediatrician, the early intervention pre-school).
Rebecca and I were gobsmacked. As she said, we’d won lotto. The grounds are fantastic (and safe, and secure). The extra-curricula activities, for both “with needs” and “mainstream kids” are all what we are looking for (focus on social interaction for BTB Fan, “Real Footy” (Auskick / junior AFL) for Guitar Hero Addict & Princess P). They are responsive to suggestions. They seem to get it. We seem to have been offered a place in a school which is pretty much the holy grail of inclusive education.
But to be fair and honest, it’s too early to actually say that, isn’t it? We haven’t lived it yet. Let’s see what I’m posting at Easter, mid-year holidays, Christmas 2011…
Something tells me, quite a few of our Christmases have come early though.
Reproduced from the now-closed autism united ning website
appologies in advance for broken links
If life is not only chapters, but also “acts and scenes”, then we’re well and truly done with “school year 2010”, “before Christmas”, “Christmas” and even “Guitar Hero Addict and Princess P visit Nan and Pop”.
We’re now “countdown to School Year 2011”. It’s quite exciting, because we have two children starting school and a spectrummy boy moving from Early Intervention to “real school”.
From people I know both online and face to face, Rebecca and I have been blessed in so many ways. Our eldest two children are fantastic, social, intelligent, bright, energetic kids whose talents can often be hard to keep up with. Our youngest son continues to grow and blossom in his own interpretation of how to be a child on the spectrum and whatever else anyone says of him there is no malice to be found anywhere within him.
It’s also worth reflecting that, we haven’t been booted out of our home by mother nature flexing her muscles in our direction. Our thoughts go out to anyone who isn’t sleeping in their own home due to floods, or fires, or some other catastrophe.
And, whatever has come to other parents of spectrummy kids, we seem to have been blessed again with a very close, public school, which integrates special needs classes with mainstream classes, and can accommodate all three of our children. A school which seems to do a great job of encouraging a true community and school spirit attitude. A school with a leadership group that had us walk away from an orientation meeting with nothing but positive thoughts for the place, the staff, and the students.
Well, the countdown is on. 13 days for the school-returners, 15 days for the school-starter. Here’s hoping I’m just as positive in 21 days time!
It’s been amazingly quiet around Westie Central: we’re down to only one child, and it’s the one who wouldn’t say anything if the house was on fire. We know this to be true because he’s set the toaster on fire without saying a word.
Amazingly it’s given his mother and I something we don’t really understand how little we normally have available: time. Time to breathe. Time to just be. Time to do more than the bare minimum essential to get through today, and hopefully get ready for tomorrow – usually we cannot even think about next week, until next week becomes tomorrow.
Amazingly, we’ve actually used that time!
Time to be with our son, uninterrupted.
Time to be with each other, uninterrupted (hey, there are benefits to non verbal, inward focussed children… just kidding. Maybe?)
Time to think, to plan… and then to prepare.
We have one day of it left, spent tonight being very social with one unplanned family visitor (well: one mum, and her three kids!) and one planned dinner visitor (again, really “1 mum plus two kids”) – about the first dinner-only visit I can recall. Two hours past normal bedtime for both our son and his two visitors (twin girls he knows from pre-school), amazingly, there were still three quite relatively calm children providing plenty of time for parents to be people not just parents.
One day. We have to get the most from it!
Having been around the Internet since the 90’s, I’ve done a lot of being a community member for blogs at major media sites in Australia (Sydney Morning Herald and news.com.au). The last three years though have been a crash-course in parenting – not at all what you expect when you’ve already got two happy, healthy kids ready for school – when we found that our youngest child, “Bob the Builder Fan”, has Autism.
After wandering a bit aimlessly on the Internet looking for places to fit in, I could find plenty of mum-friendly sites but fine was a bit tricky. But then Nicole set up a the Autism United community on ning.com.
It has been a great site to be a member of, basically since day 1!
And playing in it’s “walled garden” blog environment convinced me to push out to an open blog. So with the new year, here’s my first go at open blogging.
Hopefully, I’ll share some thoughts on not just the challenges of raising three challenging kids, but also on my dogs, living in Sydney, and my other interests such as Australian Rules Football (and Auskick), shaving, gaming, and whatever else manages to pop up.
By the way, if you do know a dad focussed website feel free to drop all the links you want!