Raising little Westies, and life as parent of a special needs son
Tag Archives: “BTB Fan”
Something happened right at school last year: Princess P finally has a fried close enough that it’s a long walk to her house. Far enough that a sleepover makes sense. So we’ve had a few back-to-back sleepover sessions these school holidays.
They have come with a few challenges. The concepts of “ambush mum and dad while you’re on the phone to your friend” or “ask if a reciprocal sleepover is ok when mum comes to pick you up” have both raised their head. Some extremely loud play has ensued and questions have been asked about if the accomodation (Princess P’s bedroom) is in a fit state for guests.
We have also, given the weather, had some issues with sunburn. Given our daughters age, that’s as much her own problem as it is the mother of her friend. But if it continues it will be yet another nail in the coffin of sleepovers till at least Easter.
I would love to think these two-way sleepovers achieve two things: both an “escape to normality” for a girl growing up with disabled brother, and a “window to her life” for Princess P’s friend – some of both Magpie and BTB Fan’s behaviour have been eye-opening it seems.
On an unrelated note. Damn it was hot today. But at least unlike Tasmania, there don’t seem to be any terrible fires throughout New South Wales.
Compared to what other parts of Australia are going through right now, 34 C is pretty easy.
One benefit of Autism that I have come to lean on a fair bit is “rules.”
Generally, once our son knows what The Rules are for a given situation, he actually is quite good at following them. I see this as a consequence of “rigid application of routines.”
This has allowed me to give my son a fairly “long leash” in situations he is familiar with – when we are at the football with his brother and sister, or even, at the local pool.
Today, this fell down a little. And shock, horror, I was called on to actually supervise a seven year old boy.
The problem wasn’t so much the failing to follow the rules – in this instance a quite reasonable and significant saftety type rule – but due to his condition, the inability of the supervising staff to engage him to actually follow the rules. This coincided with me not really being motivated to sit around and supervise him having fun at a time when I was trying to actually achieve something for myself.
So what gave?
There was a consequence for both of us. Actually, all four – because his brother and sister were there – our time at the pool came to an abrupt end, even though I hadn’t done everything I wanted to do. Along with his ability to generally comply with rules, my son really does understand that not following “the rules” usually has consequences. So, with very little discussion, we left.
*sigh* as complaints about children with autism go, that’s a pretty lame effort. He really is coming ahead in leaps and bounds, and these Christmas holidays have been fantastic for him.
This year the 21st century becomes a teenager.
The teens are typically troubling times in most of our lives, with a lot of change and that’s how I’m feeling at this point. I’ve turned 40, and I’m looking at a year ahead with some uncertainty about how I will be able to measure my success.
I have some aspirations, but if I look closely at them they are routes to success not success in themselves. I need to look more closely at why I want these things, and identify what it is about them that marks them as signs of success. Many of the things I am striving for are intangible, which exacerbates my issue.
Maybe. Maybe my success will be achieved when I can drop the whole SMART attitude to my personal life? It seems to result in more concrete results, results that I know when I have achieved, results which I can help my family to celebrate.
I am very outcome focussed in my career. I really enjoy jobs where I have targets identified and where I can look to some kind of scorecard and confirm that “yes, I’m doing my job.” Yet, it seems I may be on a path to deviate away from that kind of work at the moment.
So what might be the outcomes rather than the indicators of success for the Westies for 2013?
- Continued increase in the range of situations where Bob the Builder Fan can resolve the issue through verbal communication
- Complete the assessment process for Magpie, to either confirm there is a need for a treatment program… or not?
- Ensure that Princess P completes primary school ready for high school – both intellecutally AND emotionally. Given that she will be amongst the youngest students in Year 7 at the start of 2013.
- Support Bec through training, work experience, volunteer work, so that at the end of 2013 she has a clearer understanding of what her future direction should be
- Have a house that is market ready. But given what’s across the road, whatever I do to my own house might not mean I have a great circumstance to sell it in (honestly, clik that link and see on A Current Affair what I have across the road from my house).
- For myself… be in a job which is covering my cost of living – with a better idea of what that means if it is another contract role – with a suitable buffer to allow relocating my family out of this suburb if that’s what makes sense in 10 months time.
- And again for myself, have committed to commencing (if not completed) additional study which will help my future career. At this stage, Business Analyst or Project Manager certification, or possibly an MBA.
I think those things are still specific enough, without being so carved in stone that there is no room for an alternative solution I haven’t considered yet.
Food for future thought.
I absolutely love the whole Bourne series of films. They do a fantastic job of setting a stage within a very close-to-real universe which could believably overlap with the one the rest of us happen to inhabit.
Then along came The Bourne Legacy.
A fantastic cinematic experience with a great cast, and a great storyline. Without going too deep, it just happens to be very similar to the movies that came before. It relies on those movies to set the scene. But if you think your experience with the earlier movies is going to tell you everything there is to know about The Bourne Legacy … well you’re in for a shock. You may even get upset that it’s not what you were expecting.
Just like getting on an airplane bound for Rome, and hopping off in … Holland?
Or expecting that your experience with previous children – maybe even children with a disability – will prepare you for a child with Autism.
Taken as an experience on their own, a child with Autism on the most part is a joy. One that may be a lot of hard work. But in the main, Autism itself does not preclude a full enjoyable relationship between child and carer. Let assumptions based on other children assume control of the journey though, and everyone involved will become confused, upset, and possibly needlessly angry.
Enjoy the movie you have. Stop wishing it was a movie that was never made.
Today was a bit of a big one at Westie Central. For the first day since I came home from working in Canberra, Bec had to work, leaving me with all three kids all at once. Which of course is a Big Deal for a dad, even though I’m one of the first to say if they are my kids it’s parenting not babysitting.
There has been far too much electronic time happening in our place since Christmas (or even since Magpie’s birthday). Yesterday I thought that Bec’s return to work was a perfect opportunity to do something about that. So the kids were put on notice that once I returned from my own run, they would be coming with me for a run. So I ran my lap of the suburb, did a few chores and we hit the pavement.
There is a very convenient landmark which is almost exactly 1km from our front gate, which is right on the path of a running track. So all of us headed for that landmark (it’s a bridge), me leading he way with BTB Fan and the dogs. Given the dogs had already finished about 8km, Howie was still eager to go while Lizzie was a bit over it. Yet in only a small fraction longer a time than my standard time, there I was at that bridge with BTB Fan and two dogs.
About a minute later up came Princess P.
Several minutes later again… Magpie finally staggered up. Grumbling about not being at home.
My understanding is the run home was quicker by all parties – except me, who at this point was pushing 10km for the day, and had mown the lawn as well…
Later we headed off to the pool. Both Magpie and Princess P had been told point blank that they would be requried to swim a lap of the full size outdoor pool, because with all the pool time they have had they have spent none of it improving their swimming. I take responsibility for that, but I will reqiure them to put some effort into improving the situation in my own way, if they don’t fix it themselves.
This was accomodated quite readily by Princess P. But somewhere it seems the message had not filtered all the way into Magpie’s head.
As a result… he was less prepared than I had thought he was.
So I had my first in-pool meltdown. In front of some of his school friends, as well as a lifeguard…. Which ended with him swimming his first ever lap of the Olympic pool, back-stroke. Well done mate! At which point I told him that he needed to do it “freestyle” (meaing “front crawl“), and we had another meltdown. In the pool. But again, I perservered, and he swum the lap in the stroke I expected him to use, albeit freaking out and grabbing the lane rope every three to ten strokes.
At the end of it all, he was glad he’d done it, though.
Later, I went through much the same with my littlest Westie, “swimming” (with me supporting his hips) two lengths of the outdoor childrens pool.
Not the best trip to the pool for us. We had been going so well before Christmas, too, but with our routine broken… it was as good an opportunity to establish the routine I need these kids to follow, if they want me to take them to the pool every day while it’s hot and I’m not working.
Stretching our boundaries will bring some growth. One way or another.
Yesterday, my family went out to dinner to both celebrate Magpie’s birthday, and because after being away for so long I just wanted to.
We came home to a message that my nephew is in town and would like to catch up with his cousins. So today for the first time in a long time I went to a Sydney beach – at Coogee – in fact it was the first time I have been to a Sydney beach with my wife or kids!
We had a great day. Well, I did, and BTB Fan seemed to.
My nephew is having the type of career I was worried I may have when I was very young – driving agricultural equipment – but unlike me he is enjoying it and earning a pretty ok living (I drive plenty on my fathers farm).
It was really great to spend the day with him, and his girlfriend. I hope he left knowing how much his offer to spend his time with my family meant to me.
One event I have missed out on by being in Canberra, is my kids attending the Variety Club Christmas Party for kids for 2012. That’s OK, you can check out some of the pictures on my wife’s instagram feed.
I will dedicate tonights’ post to saying thank you to Variety. Along with a few other organisations, Variety have given my kids some opportunities to participate in things like a Christmas Party in an environment where if a meltdown happens, or some child gets too excited, “that’s OK.”
Things like KidsFlicks, where about 1 in 3 kids were in a wheelchair. And like us, none of the families had been to the cinema as a family ever before in the lives of their disabled child.
But today is all about Variety. Thank you Variety! You do fantastic work, and if any of my readers can share in the shout out that will be a case of the more, the merrier. Or even better, dig deep and help pay for them to provide opportunities like they have today for other children.
Today was the official first day of summer in Sydney. Crikey. We certainly knew all about it.
I headed off to the pool with Bob the Builder Fan. For whatever reason the other two kids, as well as Bec, stayed home.
I had the surprise of my life, not that my son wanted to climb into another childs inflatable pool toy… but that when he wan’t allowed to, he started making racing car noises!
While he has played pretend games in the past with objects, this is the first time I’ve seen him pretend to to be something. Of course, it may have happened without me being here, or seeing it, but today was a first for me.
It’s fast approaching.
The end of the year. Time to review where we are at.
How does a family, a parent, measure success? They look to the children.
My wife has advised that in the next couple of weeks our youngest gets a citizenship badge (not bad for a seldomly verbal boy with autism), his brother gets an academic achievement award, and their sister will hopefully be provided a Student Leader role of one form or another.
On her own front, my wonderful wife has managed to continually improve the state of our home, in the same year as she has returned to work on a rather chaotic basis, in the same year as she has continued to lose weight, while becoming fitter, and dealing with a husband (ME!) who is now only home a couple of days a week.
I have managed my transition from public servant, to casual phone monkey, to contracting ICT professional, travelling away from home. The team I am working in, has been doing OK in changing an organisation from a mish mash of obsolete crap, to a modern computer system. It is a big job and our part is a small but important one, we have done it well with sketchy support and at time poor tools, using in the main people who came to work to do quite a different task to the ones they find themself doing.
So far, so good, and tomorrow it’s the last day of Spring.
I hope your year has been as good as mine, so far!