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Raising little Westies, and life as parent of a special needs son
That day again…
The magic day when we’re meant to bust out of our skin telling our special someone, what we should be telling them… every day.
That day, where if we haven’t made the effort we’re being naughty.
That day, where we’re meant to spend money buying rubbish as an expression… of something that only our own, original thought, given freely and unprompted, can truly express.
But to top it off, it is a Monday. A Monday, just after I’ve had plenty of days off while the kids start school.
To Rebecca, yes, I love you as much as I ever have, over our (so close to) twenty years together, fifteen years of being a married couple, your twenty seven months of being pregnant, and our eight-and-a-half years of being parents.
Our time together over the last two years, the last year, even the last four months, has been a mess, tangled, learning curve about as steep as can be. We have been tested, we have tested each other, and ourselves, and here we are… together.
My gift to you is the most precious thing I have, my time, and I hope I can spend it wisely and be as much help to you as you need, to help us both to uncover better versions of ourselves and each other.
To anyone who wanders onto this post, I hope your Valentines Day has been spent thinking of that special person in your life – even if their time in your life has come and gone, or is yet to come. Happy Valentines Day, may it bring you love and happiness today and every day.
This week, our countdown finished: BTB Fan has now started school. He had five brief sessions, four of which were in uniform. Words which seem to bring so many spectrummy parents to pulling their hair out wondering what is causing problems.
But it seems Rebecca and I, and indeed our children, have been blessed: he took to the place like a duck to water. Although, it may help that they start the day with a nice, healthy “secondbreakfast”. It seems pretty popular with not just our son, but his classmates too.
When we arrived on Wednesday (officially his first day – even though he had already attended the previous two days for 30 minutes on Monday, and an hour or so on Tuesday) the teacher hit us that she and the Assistant Principal (who walked in “to reintroduce herself” yeah right) had identified that the “best” course of action would be for him to only attend 9am – 11 am for the first week “or so”. This was due to the other children apparently becoming disruptive due to the heat, having to stay in class instead of play outside.
Our son handled his short days very well. He is “barely”verbal.One of the days, when he got out of the car he ran off to the gates and yelled out (!!! he never does this!!!) “Come on!!” in a really clearly excited tone. Even more impressively, when we said “hey, that’s not “being safe” you have to walk” – he slowed back down to a walk.
The following day, he called out his brothers name when his brother walked off to put some rubbish in the bin, while we were waiting to go into BTB Fan’s class at the start of the day.
While the heat has been terrible – night-time lows have been pretty high – he has handled school really well. So far the plan is for him to be in school 9-12 from Monday, we’d like to see him staying there for lunch sooner rather than later and building toward full days as promptly as the teacher is comfortable.
He did full days, but only 3 days per week, in pre-school for the last 2 years. So we know he can do the full days. But school is a lot more structured than pre-school. And he is in a K-6 special needs class, not a Kindergarten class that has “structured play” between each session of “real work” (reading, counting, whatever).
For his brother and sister, it marked a new start too. New classmates. New teachers. New school. New routine, helping to wrangle an agitated autistic sibling off to do something new, exciting… stressful.
The “brain explosion” has been phenomenal. He has clearly picked up on something, and I’d love to take some credit for spending so much extra time with him since last December. We are getting words – either echolalia, or real, meaningful, if not particularly functional words – we are getting pre-reading, we are getting more thorough attempts at everyday tasks like eating with utensils, getting dressed into a school uniform, having clothes on not pyjamas before going to jump on the trampoline, putting things away when games are over… And while there have been some tantrums, there have been very few starkly, horribly, “autistic moments”. In all fairness, one of those moments may have been on Monday morning – the one morning we took him to school, not in uniform. With his brother and sister in uniform, he was extremely distressed and didn’t want to go anywhere near the school. I sat with him (in the back of Bec’s ute) for over 30 minutes, attempting several times to walk him toward the school. After about half an hour I mentioned there might be a playground, and that got him out of the ute. Into the school-ground, in amongst a whole bunch of kids who had been totally free-range for the last six weeks or so. The autistic moment was passed and there was nothing worse than a bit of screaming and (total!) resistance to going where mum & dad wanted him to go.
Again, today, there was a tantrum-bordering-on autistic moment when Bec left the house without him. Basically, it’s too darn hot to go dragging him around doing grocery-running erands, he was better off at home – it honestly seemed that the whole thing was down to him not being able to say “Stop! Take me too!” This seems more and more to be the root cause behind his “moments”.
All in all, I’m over the moon that I took the time out from work. I’m over the moon that my job gives me that flexibility. I’m over the moon that we still have a house to come back to, unlike so many people afflicted by cyclones, floods, fires or other massive events.
And I’m over the moon to be father to three fantastic kids, one of which is walking his own path in this wild, confusing, world.
When even mainstream entertainment talks about life so point-blank, it must be true mustn’t it? And not just “mainstream entertainment, but also one of the few parenting blogs on Autstralia’s leading news websites1.
This post has been building in me for a while, but having said that, it’s been hard to write and sat here as a draft for longer than anything I’ve written for a long time. Real, good, meaty statistics are sparse on the ground and certainly aren’t the “low hanging fruit” of the statistics world – which is why the whole issue causes me so much angst. I’m a fan of marriage, I’m a fan of life-long relationships, but by the same token if something is broken beyond repair… well, I’m a realist too. Marriage is hard, divorce is hard, but divorce is hardest on kids… and I’ll assume it’s pretty hard on spectrummy kids too.
I really love Parenthood. It’s a shame that they drop in such a widely bounced around statistic which is as made up as so much of the rest of a show which in so many ways does fantastic things to give the wider community an insight into the world of Autsim. Even hearing that “80% of marriages where there is an autistic child end in divorce” is enough to make some people decide “oh well, it’s not just me so if it seems too hard – maybe that’s because it is too hard.”
If the statistic was true: then maybe such a thought would be reasonable and sensible. It would mean that the community is letting couples who have autistic children down, if the divorce rate was so much higher than that of the wider community.
However, it is a statistic that has been severely challenged. In May 2010, Science Daily reported on a study by the Center for Autism and Related Disorders at Kennedy Krieger Institute. Unfortunately, the Australian Bureau of Statistics data does not bring information about disabled children to the fore-front. It does show however that in recent times more than half of divorces are granted to couples with no children under the age of 18. Their stats are also based on “what happened in the last 12 months” not “what has happened to this family”, which is what would be needed in trying to answer this question one way or the other. Although, it seems the challenges for parents with autistic children might continue when those children grow into adulthood.
The other point which should be considered is, the rate of children on the spectrum where one parent or the other (or both!) is also on the spectrum. Australian divorce statistics for people on the spectrum aren’t all that easy to find… let alone, the divorce rate for people on the spectrum, who have children, who are on the spectrum.
In any rate, statistics are about populations and trends. As it is, anybody who pays them too much attention probably wouldn’t get married anyway – especially if you’ve been married at least once before – but people keep doing it. So take the same optimism that got you married in the first place and keep it alive! Talk with your partner about your concerns, and who knows – you just might manage to escape being one of the couples who regardless of children, disabled or otherwise, decides to call it all “too hard”.
1. A great piece, with a great educational, insightful video – just a shame it merrily repeated a commonly believed statistic without saying where the statistic comes from.