Raising little Westies, and life as parent of a special needs son
Tag Archives: autism
My return to Canberra was a little abrupt. Well, sure, it was a long time coming, but then it was “so, you start tomorrow, OK?”
This is a very interesting way to live a life, especially with one confirmed Autistic and one suspected “quirky” child. Or maybe that’s two quirky children? Or something. News for another blog, really.
I’m rambling… There was a theme here, somewhere!
Oh yeah. Progress. We are making it.
The plan for this year is all about being prepared, and aiming for improvement.
With my job taking me away from home again, I get to look at BTB Fan with the eyes of both an insider, and a frequent visitor. I’m noticing more and more, that he is picking up means if expressing his personality, and his thoughts or wishes. His teachers report continued progress in academia, however this can be difficult to observe outside of school – until he says or does something I hadn’t expected based on him having to have read or calculated something far more complex than I expect of him. Teachers of Autistics should ensure communication in three directions: to the Autistic child, the parents of the child, and to school management.
So the idea then is to stop having such low expectations. He can achieve more than I give him credit for. Parents of Autistics should provide opportunity to their children, then encourage those children to tackle that opportunity head on.
On the family front, I have been investigating the local property market. This is a little difficult given my absence from the scene five days a week, and the fact that buying and selling is better suited to people far more extroverted than myself. I have finally made some inroads though and have decided: it does not have to be ideal, it has to be sufficient. With that in mind, I have a busy weekend coming in six days time.
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.
It’s been coming for some time now. DSM-IV is to be replaced, by DSM-V.
Along with the deprecation of the term “retarded” as a description of intellectual capability, so to will “Aspergers” be deprecated, to become simply a superfluous means of describing a person on the Autism spectrum. For those lining up to paediatricians to have children either born already or yet to be born, seen and assessed, labelled for the convenience of the education system, this represents a simplification of a complicated ecology of service providers.
However, for those who have grown up over the last forty or so years, and the parents of those who are recently diagnosed… being Aspergian is as important (or more important?) than being male or female, asian, african-american, indigenous or white, athiest, christian or wiccan.
Far be it from me to have too much opinion here, because my own experience is as a parent having a son be diagnosed in an inconsistent manner, clearly told “well for want of a distinct diagnosis lets use PDD-NOS – it’s vague enough to cover anything.” That made way for “Classic Autism” which seemed quite appropriate at the time, however, some of the descriptors for Classic Autism are tied to very specific moments in the persons life.
Lately, Aspergers seems to have become a highly visible description for a set of behaviours and preferences. I wonder, if this description loses official status and predominance… how many people would line up to be diagnosed on the Autism spectrum as an adult?
Are you effected by this change? Do you feel strongly about it? I’d be overjoyed to hear your opinion.
Oops. I have missed a day, it seems, so I am playing catch-up.
My week… for my own sanity, I will start on a Sunday afternoon. Which seems to me about the time my new week commences!
Gather all my clean laundry, pack my bag, pack the car, have dinner, say goodnight to the kids, have a bath and a shave, say goodnight to my wife and go to bed. That generally fills in about four hours quite thoroughly!
Wake at 4 am. Eat without waking anyone if I can manage it. Tuck all the kids back into bed, and give them a last cuddle and kiss before I hit the road for the week. Go back upstairs, brush teeth, get dressed, kiss my wife and jump in the car.
Drive half way or so to Canberra, stop for a coffee, then drive the rest of the way to be at work before 8:30.
Have lunch with Alan, then return to work till 5 or 6pm.
Go to my “home away from home” and unload the car for the week, before having dinner and spending some time online. Generally, be in bed… just before midnight, for usually a 20-hour Monday. Life’s grand!
Be up, showered, eat, and on my way to work… sometime before 8:00 am, but often before 6:40am.
Get to the office, have a coffee, and start work. Work consists of hassling people about what software does, or does not, work with Windows 7, and why they should be using software that is easier to make work. It’s quite repetitive, and my colleagues and I seem to keep having groundhog day moments every week or so.
Knock off work sometime before 6:30 pm, before heading “home” for dinner. Hopefully, catch up with Bec online and be in bed before 11 pm.
Wednesday and Thursday: Often, much like Tuesday. It’s normal for me to eat out at least one of these nights, often with Alan, sometimes with the Aunty I live with while I’m in Canberra.
Get up before 6:30 am, have breakfast, pack my bags and car, head to work hoping to be there by 7:00 am.
Work on Friday inevitably ends up being “chase up some absolutely critical things that won’t actually change the world if they aren’t done before Monday, but it’s essential you get it done TODAY.”
Hopefully, I’ve already worked 40 hours by the time I arrive at work on Friday. So by lunch-time, I can jump in the car, grab some lunch and hit the road for Sydney. I often have to work till 3 or 4 pm, though.
On the way home, I almost always check in at a roadhouse for a coffee and to break the trip. Hopefully I am home by 8pm, in time for dinner with the kids, and in bed by 10pm.
The least structured day of my week. Hopefully I get to sleep in, while Bec goes to a regular meeting – assuming the kids stay quiet. I will catch up with some of the things I can’t do around the home while I’m away, and hopefully get the kids involved. Ideally we will get out of the house on bikes, for a walk, to some organised sport, or for a swim. Bec will usually cook something pretty wonderful on Saturday night, and Magpie will often cook sausages for lunch. It’s just “his thing“!
Sunday morning I will again attempt to sleep in. Something will need to be caught up on that wasn’t finished the day before. Before I know it, it will be lunch time, and I’m back on the whirlwind for another week.
Things have taken a bit of a turnaround at Westie Central (it was what I’d called our house for years before Bec stole the name).
The Angry Birds have leaped from the computer and tablet screen into the Real World. They have bought with them a whole bunch of events, behaviors and activities:
- seeking to engage other members of the family into the game
- being less upset to be told that the computer needs to be turned off
- demonstration of solving problems and actually building things with real world objects – that are ad-hoc and not part of a Thomas the Tank Engine set
- speech as a part of play. This includes both echolalic phrases like “the angry birds are angry” and spouting out bits and bobs in an unprompted manner like “get the green pig“
The most exciting part of all this, is that it has involved interactive play with both his brother and sister, and even mum or dad if we are able to get involved. It is quite an exciting development, and that we are excited about this development in a seven year old boy is a story in itself. His Autism has been persuasive throughout his entire social, communication and emotional development, although thankfully it has (so far) had only limited impact on his physicality and even his intellectual growth – although his ability to demonstrate his intellectual capability seems to be very poorly identified or harnessed.
Forget about all that though. Let’s just celebrate his interaction with his brother and sister!
Some words, mean more than they say