Raising little Westies, and life as parent of a special needs son

Category Archives: Autism United

Celebration of success continues

I wish this was my picture!

What a milestone!

I’m all about success and I’m happy to shout from the rooftops to share the success of anyone, with everyone. And Di over at Bright Side Of Life is as wonderful a candidate as any for sharing success.

Di is one of those people I have only met online. I really would love to meet her along with quite a few other people I have only met so far through the screen – Facebook, Twitter or blogs are all fantastic but they are nothing like sharing a barbeque, drink, a quiet moment or a not-so-quiet moment in the midst of the kids.

18,000 page views is a fantastic result for Di, paying off her wonderful work talking about RDI therapy for children with Autism.

As well as her own son Nick, she has done fantastic work for the Autism community in South Africa – while sharing and engaging with people in her home New Zealand as well as Australia, the US, and UK.

18000 is just the beginning. 20 and 50 thousand will be turning up before you know it!


100 Club

Finishing the puzzle… 100th post
Image thanks to Techpedia

Crack the champaign, I’ve hit the Hundred Club of blogging.

Back a long time ago, ImaWestie posted his first comment on Sacha Molitorisz’ blog Whose Your Daddy at the Sydney Morning Herald. In those comments I record my earliest concern:

¶ on a totally seperate note, my wife and I are at a point where we would be delighted to hear our youngest swearing, if only he would talk.

At what age should we be how worried about our son pretty much being non-vocal?

SM, if anyone sensibly wants to contact me on this please pass along my details to them.

Posted by: ImaWestie on April 26, 2008 9:36 PM

So as early as April of 2008 – four years ago, just before his third birthday – I was already concerned about my son’s development.

I think my fully bogan alter-ego appeared as I had already had about enough of being concerned about who I was, where I worked, and who my kids are, when I was looking to talk about a range of topics online.

Since that first appearance, I’ve sprouted up on News Limiteds comments section, the Whirlpool technology forum, on a range of games websites, and continued to appear on the Sydney Morning Herald website from time to time.

I also wandered along to the Autism United community, where I learned so much, and was inspired to record my thoughts, experience and emotions onto blog format. Some of what I wanted to write didn’t fit in amost such a well defined community, so here I came to WordPress.

That puzzle there remains extremely relevant. Tonight, with our dinner, my wife and I celebrated as we used bribery to tempt our youngest son with yoghurt, to get him to eat one (!) pea and one tiny carrot stick. Absolutely smothered in red, tangy, sugery, terrible…. tomato sauce.

But it was a win.

Four and a quarter years down the track, Westie and Mrs Westy are continuing our adventure, hoping we continue to challenge all three of our children, learn more than just what we have to, and expand not just our own horizons but the horizons of our children, too.

Hope to hear more from all of you who like to drop in and “like” my posts without leaving more to let me know what you think. If you have something to add to my writing, to what I know about Autism, being a father or husband, a coach to a junior AFL team, a cyclist or an IT Professional. I’d love to hear it. Because while I might be at my 100th post, that puzzle is far from complete.


Throwing down the gauntlet

It has come to my attention that I have been neglecting things around here. My side of course is that I have had a hectic year – it’s quite difficult for me to comprehend that one year ago I was working in state government helping in a mid-level role, on an information technology project, helping the agency get ready to be swallowed by some other organisation. That role had me living in my home in Western Sydney, commuting by bicycle and suburban train each day for about two hours, seeing my kids every day. At the same time I was extremely involved in assisting my Autistic son as he was half way through his first year in school, and quite involved in my daughter and her Australian Rules Football team the St Clair Crows.

With very little notice, I was made a hard-to-refuse offer with a dollar value attached to finish my public service career and “move on with my life.”

And a chapter of my life – working in the Sydney CBD – closed after about ten short months.

This turn of events had quite a dramatic effect on my life, and in all the noise, my regular blogging went by the wayside. It has been missed, only somewhat compensated by tweeting and Facebook. I have had some fantastic experiences, along with some pretty low points – being “between work” for the longest time in my life.

But that’s behind me now, as I have been back at work since late March. Yet some four months later, still only very infrequent blog-writing – marked mostly by ANZAC Day!

Yesterday, another milestone event happened, when Autism United was closed. I discussed this with a guy I’m very happy to have met since coming to Canberra, and he’s suggested a challenge for me.

Without giving away the target – because I’d rather not reach the target then stop! – it’s a very typical “article a day” challenge. I’m happy I had that chat, and I will endeavor to reach the target he set. But for now, let’s just finish with… Challenge accepted.

Goodbye Autism United. Hello Autism United.

Today is the end of a bit of an era.
Way back in January 2010, in circumstances I no longer really recall, I ended up making my way online to a freshly created community. Incredible that it is so recent, I felt like it started way before that.

A wonderful woman, Nicole, had reached out and finding nothing suitable – started a community.

Which with no shortage of effort on her behalf, came to be found over the next few years by over 250 people, who came looking – and found – support as their child, spouse, sibling, friend or other relative, moved through being suspected, assessed and diagnosed (or not!) as being on the Autism spectrum.

Thank you to Nicole. The people you bought together have been so much help to my wife, my daughter, both my sons, and myself, as we went through the daunting journey from pre diagnosis, through diagnosis and placement in an appropriate school for my youngest son Bob the Builder Fan.

Somewhere in there, one of us managed to write a book. No, not me (I wish!) but Valerie Foley. Yes, it’s fantastic.

Now, two and a half years later, so many of us have moved on from what bought us together. There are more children, some of those children have gone on to start school. Some other life changing events have happened for others including packing up and moving to a whole other country.

I feel blessed to have been part of such a positive Internet family. I seriously don’t recall any discussion getting negative even when some of those discussions have involved quite diverse opinion and fundamental philosophy about life, raising children, autism, and the greater universe or “religion”.

Thank you Nicole. I hope our new home continues to be as positive as the previous home.

Lessons in life

New life. It doesn't get much newer... without being yuck!

While Princess P might be the only one to have really noticed the start of this life lesson – the boys are going to notice the next few weeks.

Guitar Hero Addict has shown himself to be very well behaved around kittens and other young life in the past, and it seems he is something of a “chook whisperer”.

So we are hoping that BTB Fan will find that the new lives coming into our home (briefly) to be a joyful experience.

Real bloggingness

I am here gently touching on the edge of the blogosphere. I’m a bit comfortable surfing on the edge of the tide, while my job is in a chaotic state, but already I notice good things.

Like if you add ASD to a google search for Collingwood… you end up here! Well, within the first dozen or so links anyway. Or if not here, at Autism United! God bless JAFL, and Magpie, for the weirdity that is google pagerankings.

Which is A Good Thing®©(TM).

I’ve created a facebook page (still a WIP). And I’m trying to work out where to host, or, or something. I don’t know if that will end up on wordpress, or google, or… somewhere.

And other than flanno shirts, or bogan acessories… well, what’s a website like that going to be for? But not till at least August. From then on, anything goes. Kids, Bec, and work, willing.

Gently, gently I am pushing myself further out from my comfort zone. Writing more. Writing, no matter what. I guess I’ll be needing pictures, or videos, or something, next.

So FiJo, and Val, and especially Nicole who dragged me into this idea. Thanks to Felicity Moore , and Sacha Molitorisz too – for getting me online, talking about being a parent, before I knew I had anything like a problem to talk about (and to Felicity, for showing me that there is content for a parents website in Australia – I just gotta do the Dads one now). Thanks. I hope this can keep moving on. I hope I keep hitting these keys and just keep writing.

You all know I define my own success. I don’t need #TIGERBLOOD to be #WINNING. So my success will be:

  1. Getting a real domain name.
  2. Getting that domain name into the first few results on google.
  3. Writing. At least once a week. Ideally though, in advance… so I can have the article waiting for the clock to tick over.
  4. Making this thing pay for my hobby. Which might mean more non autsie stuff showing up or something? I mean I am a geek, a commuting cyclist in Sydney, a former army reservist, a wet shaver and aspiring honemeister (which reminds me I need to get those stones out of that box and sharpen that razor….)
  5. But most importantly. Being in touch with more people, who help me with all my kids… spectrummy, challenged, otherwise abled, or just as they are.

That looks like enough of a list for now. It might have to be bumped to its own page so I don’t lose it. But now I’ve written it, I can hold myself to it.

Thanks to my spectrummy parenting community, for giving me a direction to go in.

Another great excuse for shin-ding!

Most my regulars already know about the fantastic web group that Nicole English kicked off over at the Autism United Ning community. Over the long weekend we celebrated not just Queen Elizabeth’s birthday, but also a certain Bogan Princess  (complete with sash presentation). Happy Big For OH!

For the second time, a whole bunch of people who usually only meet each other on-line met at Club B, bringing along a whole bunch of citizens of the spectrum. This time, the weather kept everyone indoors… which did bring about a few concerns but they were pretty minor really! Far fewer trains than last time, but they still made an appearance. It was also nice to see another bloke, not just Westie & Brian. Maybe next time at Club B there’ll be another one… or two… no pressure!

It was a fantastic evening, and a fantastic opportunity to catch up with everyone shortly after the first confirmed “in the wild” sighting of Valerie Foley’s The Autism Experience in an actual book-shop. Budding author that she is, quite a few signed copies were presented, and there was a lot of discussion of how well travelled, dog-eared, and tabbed for future continuing reference each persons copy had already become.

Oh and to the management of Club B, it seems you’re definitely in the sweet spot for the Sydney chapter of Autism United (we need t-shirts, or bag patches or something). On behalf of all the Westies, I hope you open the club to us again and again…

Educating Westies (or: How We Won the Lotto)

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

PECAT – done and dusted. Now it’s official.

On Sunday I mentioned how we were ready to go to PECAT today. And what a full day it was!

Started out OK but chaotic. By the time we had the other two ready for school, Mum, Dad and child ready to go to PECAT, we were already a little bit behind schedule. So we didn’t really need to go out of our way to put Kate’s suggestion into play: we already had a certain individual rattling off the names of a range of Bob the Builder machinery, along with the suggestion to “GO SLEEP!!” from time to time as we went along.

By the time we were parked at Parramatta Westfields we had 6 minutes to do what we thought was a 10 minute walk. Which turned out to be a 15 minute walk because PECAT is at the opposite end of one of the longer streets in Parramatta than we had thought it to be, and the street names down there don’t make much sense.

We weren’t terribly late when we got in there. But they were ready for us.

Strangely they started the session by talking to mum and dad, but they kept taking notes about what our little boy was up to and totally going off the track of their interview to ask about what he was doing at that moment and if he’s always like that, or something fitting in the situation.

Then BTB Fan and myself went into a room to do some play-based activities. He did a pretty fair job of some puzzles, then lost all interest when we got to language – even with things that mum & I know that he knows (he knows what a cup and spoon are for crying out loud!!). But to be fair – it was 11 o’clock and he was damn well hungry! After how many years at university these people assess a 5 yo boy who hasn’t had his recess yet?

Final outcome: Psych and Paediatrician have a bit of a pow-wow and come back with a stunning set of revelations:

BTB Fan is autistic, is recommended for an Autism support class, and we should get him tested for Fragile X Syndrome.

Bec said that it was all she could do to hold back “well, DURR!!!” at the news.

In all, the whole thing took from the time we dropped off two kids at school, until it was time to pick them up again. Hopefully this is what Dept Education needs to give BTB Fan what he needs.

Reproduced from the now-closed autism united ning website
appologies in advance for broken links

Visit by case manager

There are good and bad things about having highly qualified family members.

My sister-in-law dropped in today, which is great. Her husband (my brother) is OS on a great adventure, so she has a bit of time on her hands.

But as the title says: it was a lot like a visit by a case manager rather than by a sister-in-law, because – she is a psychologist with “just a few” years of experience, including several years doing psych assessments for the catholic school system in her area “on the side” of her “real” job

It was a great visit! But all about our son, how he’s going, what we’re up to with him, who he’s seeing, what assessment they are doing with (on?) him…..

A plain old social visit would have been great though!

If you want to know about my brothers adventure send me a message.

Reproduced from the now-closed autism united ning website

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