Making Peace with Autism

I have decided to change the title of this blog from "A Personal Journey with Autism in Brunei" to "A Peaceful Journey with Autism".

This really derived from an epiphany I have been having lately through dealing with Raiyan's autism. I have been slowly moving away from being that parent who is incessantly endeavouring to improve and better my child, along with always trying to ante the therapy as much and as often as I could, without having taken a moment's break to see who my child is and to see the world from his point of view.

My objective when I started the blog was to mainly chart Raiyan's progress with his new therapy programme and to share it with others, especially in Brunei where autism is still very much hidden and misunderstood. And since I was opening ourselves up for the world, of course it felt personal and it was apt to call the blog "a personal journey with autism in Brunei."

But I have been so absorbed with seeing progress, expecting certain responses and behaviours, (with the somewhat careless notion and confidence that he, as a mere 5 year old will be able to handle it), that at the same time I have neglected to actually get to know the real Raiyan. And that means understanding the reasons behind those times when he blankly refuses to talk to me who is constantly insisting he responds to everything I say. That's when I realised that it makes sense for me to want to ignore someone asking me uninterrupted questions on something I have no interest in right? This is what my gut feeling is telling me now as to why Raiyan may be behaving this way lately. He might be more aware of his personality that now he has more confidence to decide when he should respond and when he shouldn't.

The other day Jo told me that even though his therapy sessions are going brilliantly, she suspects he may not respond as well outside of the sessions because the therapy already takes up so much of his energy and concentration. So much so that he still needs to resort to his own world once in a while. A few months ago, this would have been unheard of for me because we thought to allow him to retreat back will mean regression, and the stoppage of making further headway.

But lately he has been resilient in going back to his old ways, albeit still controllable and in much smaller quantities. Compared to how he was in the last months, he's been throwing himself on the sofa more, he's been shouting more, he's been demanding body contact when sleeping more, he's been ignoring others more, he's been self-talking more AND he's beginning to rekindle his previous obsession with animals (to be fair on him, this may be because he knows we're taking him to Singapore Zoo next week).

But the surprising thing is, despite what may seem to us paranoid parents as regression, he is still successfully completing his ABA programmes at the right pace and when following the programme strictly, he CAN continously talk throughout the 2 hour session.

Which have now led me to think that I should start to relax a bit more and be less controlling over the outcomes of his therapy and let nature takes it course. I've realised that it has been a farce for me to think that his therapy has "changed" him to be a different boy and that the future will "definitely" be much brighter from now. I do not deny that the therapy has worked immensely well but I have been so naive to think that we've crossed the biggest hurdle. We may have when it comes to his communication skills with those close to him, but there is long road ahead in so many other aspects of his life.

But rather than confront these challenges in an aggressive way as I may have done so lately, I am now choosing to handle things in a more "peaceful" and more importantly, in a less stressful way that is free from disturbing thoughts or emotions. Instead of getting either perturbed or in denial about the "lows" (like for eg yesterday a boy from his old class who happens to also be a neighbour avoided him and told Jeff that he doesn't like Raiyan- luckily Raiyan didn't realise but Jeff and I couldn't help getting saddened by it), I shall just embrace it and accept that all of this is part of the bigger picture and overall, they are a part of LIFE that no one but Allah has any control over. There is absolutely no point in getting angry or being militant in getting results when in the end, you know that things don't always go as you plan. We just have to keep the faith that no matter what happens, insyaAllah it will always work out in the end.

PS. The title of this post comes from the book by Susan Senator that I am reading (and of course influenced by) at the moment. And funnily enough, the new title of the blog I actually got from Mom to Max who somehow linked me as this new title even though at the time it was wrong! So it's thanks to her really!

4 comments:

Nisa said...

Hi Ka, check out this infuriating link http://abcnews.go.com/Health/AutismNews/story?id=5419861&page=1.

Also, I like "Peaceful" journey even better! =) Although, I won't be endorsing too much peace by linking you that article. But it's just too infuriating not to share. Heehee.

Pweshes Mama said...

Awwuuu cemana inda bari gila marah to hear someone say that.. but what can u do but just ignore him kan? He's a radio deejay so its his job to get ppl to liten to him even if it includes horrible things. lets just hope ppl arent swayed by what he says!!

pinkilili said...

Hey Rin, hugs to you and your family! Hope to meet the incredible Raiyan someday soon, love ya! Suvs

Pweshes Mama said...

Hi Suvs! hugs to you and your family too honeeeyyy!! I know, I really wish we can have a reunion soon LAH.. next time you and family are coming down to KL, maybe we can plan something.. Love ya too and thanks for ALL your words of support all this time- they realy mean so much to me! Rin

PURPOSE:Hoping for more understanding and less judgment from all.

 To show the importances of early intervention and an evidence based treatment to help reach the full potential of the child.

 Offering other parents hope to have faith in the positive progress of their child.

Amin.
 
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