Lately I’ve been feeling kinda guilty about not paying as much attention as I should to autism. I haven’t been as diligent with Raiyan’s programme, I clearly have not been as frequent with updating this blog, I’m so behind in reading other blogs on autism, I haven’t even touched a book on autism in months and my involvement with Learning Ladders Society in helping spread autism awareness has substantially reduced too. It almost seems like if I’m in a relationship with autism, it’s at a point where I’d need to have that “talk” with it and suggest that perhaps we need a “time out” or a “break”.
In all fairness, there are justifications for my neglect that I shall attempt to put forward here. For starters, Raiyan’s programme is not as specific as it was before as now we are meant to do more creative things using natural language, like creating stories together which I am the first to admit I completely lack creativitiy in! Hence, it is not as structured and because of that is trickier to follow through (though there is still no excuse to not do anything!). At the same time, with him progressing well in Year 1, we are spending more time catching up with his school work as every day, he has a new home reader book to go through (where he is now up to level 7!) and every week, there is always at least 2-3 pages of literacy and numeracy home work to complete.
In terms of reading up about autism, I simply haven’t had much time to do so because I’ve been busier with work and I also plead guilty to letting my mind focus more on losing weight at the moment (5.5kg so far!:-)). And lastly with regards to the society, I am less active now since for this year I am no longer a member of the Committee.
Having said all that, there may also be other deep-rooted reasons if I am going to be completely honest. My estrangement with Raiyan’s programme may be also due to my state of comfort or even to an extent, complacency that Raiyan is already doing so well on his own, without having me sit with him and go through his therapy materials with him. He is also constantly occupying himself with some activity and hardly goes beyond his 1.5 hour daily limit of TV that I don’t feel as worried about not engaging him because he’s already engaged himself. If it’s not playing with his blocks, he’s playing with his food basket and setting up his picnic with the teddy bears, or he would be resurrecting his own zoo or Jurassic park with all his animal/dinasour figurines, or he would be drawing and writing up stories in his drawing block or at the very least, he would be playing chase or some interaction game with his siblings and his nannies.
On the whole, it really just boils down to what Jeff and I have recently realized and that is how deeply immersed we actually were with autism last year that it really did seem like we were in a relationship with it! Of course we didn’t have much choice then as there was so much work in trying to get Raiyan to where he is now. But it wasn’t
just about Raiyan and his progress. Subconsciously, our minds
were filled up with nothing but autism. Our conversations were always to do with stories of autism, be it Raiyan’s, or any other stories we had heard of both from reading about it or seeing it ourselves. Our free time was always spent with some activity on spreading awareness, which to me is great but not when I realize now that the only people who would ever take notice are those that are directly affected by autism themselves and this means that us going that extra mile merely resulted in an overexertion on our parts without there being any fruits to our labour. Also, we realized we were treading on unpleasant grounds by starting to be a tad “
oversensitive” with others who we felt didn’t “care” enough about autism and what we had to go through and would often waste time analyzing why people didn’t act a certain way or say a certain thing when we talked about autism. Only to
realise, again, that it’s not because others do not care, but it’s because they have no reason to and that is completely normal.
I’ve also actually gotten more and more
cynical from reading the endless amounts of articles and blogs about autism especially when the debate over vaccines and recovery come into play. I soon discovered that the more literature I read about autism the more confused I got! So much so that I think that is probably the real reason why I’ve strayed away from reading too many of them (except for
teenautism which I’m completely addicted to!).
So during these times of what we feel to be us “cheating” on autism, Jeff and I have been spending more quality time together and not even thinking about autism. We’ve been paying more visits to the cinema, the spa, the gym and have even managed to bring the
kids out for a family outing every weekend for the past few months, a luxury that looking back we certainly did not enjoy in 2008. We even managed to get away to Singapore for 5 days with just the two of us and it was absolutely wonderful. I’ve even found myself to once again be able to happily hang out with my girlfriends without any teeny weeny bit of expectation that they should ask me about Raiyan and his autism. In fact just the other day, one of them specifically asked me about autism and its traits and what were Raiyan’s obvious traits etc, and I didn’t even for a second get impatient over the fact that all of this she could have easily found in my blog and instead, rationally and very calmly told her what she needed to know without having that incessant need to go that much further to make sure she gets the WHOLE picture. I know now that is just an impossible feat AND if she does want to know more, she knows where to find me right?!
But the thing is, despite this so called “liberated” feeling I have, I still find that inner voice in me saying “don’t get too comfortable, autism is a lifelong condition and don’t think for a minute that you can free yourself from it blah blah blah” or “are you crazy to slow down your pace? Raiyan’s not completely recovered yet! You should still be hard at work and be in a non-stop action to improve him blah blah blah..”
In some ways I guess these voices are still good to have as they serve as a constant reminder that autism will probably forever play a big part in our lives and that I should never be naïve enough to think that we have overcome things and that we can get back to our normal lives.
But it’s not like I expect to go back to our old “normal” lives. It’s just adjusting to that “new normal” where I try and attain some semblance of our old lives but to also take on board all the life lessons and the challenges that we’ve accumulated this past year. Hopefully we can use them as tools in handling what the future holds for us whilst also preserving our own identities separate and distinct from the autism. That’s not too much to ask is it? :-D