At the dawn of the New Year, I was at one point contemplating changing the direction of this blog to focus more on just the therapy, the society and our relationship with the school and not so much on personal stories about Raiyan (you know entries like “Bossy Boy” and “Chubby”). Instead I wanted to share such stories in the “Pweshes Diaries” blog which just generally talks about my children’s antics.
It was really difficult to put into words how I felt and especially doing so with an attempt to avoid offending anyone. But simply put, Raiyan is such a different boy now after one year of therapy and undoubtedly one who possesses a distinctively genuine personality that on some level, I find it unfair, for him and for others; for me to be writing about him purely in the context of his autism within this autism blog.
Don’t get me wrong, I still believe Raiyan is autistic and that will always stay with him but if I haven’t made myself clear before, I am at the point where I see Raiyan being so much more and in terms of the autism, I see it more as a gift as opposed to a burden. Though I feel like this now, I am by no means discounting or dismissing the difficulties autism has caused for Raiyan in the past; and for other children and their families who are still facing them. Alhamdulillah I am eternally grateful that our family are blessed with where we are now and to also be at a place where we have adapted to the autism by constantly making the effort to talk to Raiyan (and everyone in the house for that matter) in a certain ABA way-clear, broken down, direct and mutually understanding.
Of course there are difficulties still present, such as the lack of social cues, inability to fully express himself and the tendency towards utter egocentricity. These are admittedly ongoing challenges we have to deal with but when put into perspective with past challenges like complete lack of communication, obsessions, rigid routines, resistance to new things and of course the notorious tantrums, what our family has to deal with now is definitely not as nerve-wrecking as it was before. InsyaAllah it does seem like Raiyan is able to successfully manage these challenges seeing how they have not surfaced in a very long time. What we see now is him truly blossoming and quickly catching up with his peers that many who meet him for the first time thinks he’s indistinguishable. Now he independently comes up with the cutest quips that I, just like any other parent, loves to share on this blog just because it’s something coming out of my child as opposed to it being something related to autism.
The situation in Brunei is still very tricky in that not only is awareness on autism limited, the notion that these children can learn to overcome their autistic traits is practically unheard of. When I personally tell people that Raiyan is autistic, they immediately think they have to feel sorry for me. Though I completely do not blame them to feel this way as I know there are many other families out there who still has to constantly face the daunting side of autism in their children, I still can’t help feeling slightly cheated upon receiving the pitiful looks because if they were to really know Raiyan NOW, they would be surprised to see that we actually don’t really deserve the sympathy. This is especially so if you were to see his incredible report card of last term! But nevertheless, I accept that a lot of autism families in Brunei are still facing uphill struggles on a daily basis and urgent attention from the authorities is seriously needed. That’s why I was scared I might then be transmitting mixed messages when I’m talking about Raiyan in such an amazingly positive way.
So what do I do? Seeing how there is still much awareness needed for autism and its diagnosis, prognosis and treatment, do I want to continue to write about Raiyan that makes him seemingly “normal”? I mean it’s logical for one to conclude from reading the blog that autism is not such a big deal seeing how Raiyan is coping with it so well. I reiterate, I really do not want to discount the challenges other families that I know, who still needs to be paid more attention and as horrible it is to accept, it is easier to obtain this attention when a disturbing or depressing image is portrayed.
At the same time, I don’t want EVERYTHING Raiyan does to be construed as an autistic “thing” especially seeing how the complete attachment of that “label” has proved to be such a unnecessary nuisance for him. I mean some of the adorable things he does and say can very well be separate and independent from the autism. That’s why I thought I should share “those” stories on a non-autism blog rather than here. With this in mind, I was almost convinced that this is the way I should proceed with the blog.
However, the negative consequences of autism in Brunei still being perceived as something depressing and "not wished upon anyone" lingers on in my mind. I know of parents who insist to stay in denial about their child’s condition even though the symptoms are obvious and not getting any better. I know of parents who choose to not take their children out because they can’t bear the attention they draw when being out in public. I know of parents who doesn’t even talk about their child nor share stories about them believing it’s taboo to do so. I also know of parents who proudly talk about their child’s conditions and take him out in public even though he is still non-verbal and relatively hard to control, only to be shot patronizing looks from others. This is when I realized that if I stop talking about Raiyan as he is, I will continue to feed into this unfortunate stereotype and this I fear may lead to MORE parents choosing to be in denial about their child that they may potentially miss the boat for early intervention. Far worse, I fear this may lead to MORE parents feeling alienated from the rest of society resulting in built up resentment and frustration simply because they had to suppress or feel the need to deny something that makes up such an intrinsic part of their lives.
So I decided to maintain the blog as it is. I have to trust that others remember that autism is a spectrum and it would seem that Raiyan is on the mild end and there are others on the spectrum who still require more urgent and close attention. I also have to trust that others FULLY read this blog to see that autism IS still a big deal and Raiyan would not be where he is had he not received the appropriate treatment this past year.
I know for now Raiyan may not speak for the majority of autistic children in Brunei and I don’t expect for people to think he that he is. But that’s not going to stop me from continuing to hope to reach out to other parents on the spectrum who does feel they can relate or even aspire to want to relate. In line with my pweshes philosophy, I can only continue to hope and pray that in time, Raiyan and other children like him can not only help to inspire other families to accept the autism and work on it as early on as possible and insyaAllah along the way they too will be blessed with the opportunity to discover its beautiful side that I see today. And once you’re there, I challenge you to not want to share it too. :D
It was really difficult to put into words how I felt and especially doing so with an attempt to avoid offending anyone. But simply put, Raiyan is such a different boy now after one year of therapy and undoubtedly one who possesses a distinctively genuine personality that on some level, I find it unfair, for him and for others; for me to be writing about him purely in the context of his autism within this autism blog.
Don’t get me wrong, I still believe Raiyan is autistic and that will always stay with him but if I haven’t made myself clear before, I am at the point where I see Raiyan being so much more and in terms of the autism, I see it more as a gift as opposed to a burden. Though I feel like this now, I am by no means discounting or dismissing the difficulties autism has caused for Raiyan in the past; and for other children and their families who are still facing them. Alhamdulillah I am eternally grateful that our family are blessed with where we are now and to also be at a place where we have adapted to the autism by constantly making the effort to talk to Raiyan (and everyone in the house for that matter) in a certain ABA way-clear, broken down, direct and mutually understanding.
Of course there are difficulties still present, such as the lack of social cues, inability to fully express himself and the tendency towards utter egocentricity. These are admittedly ongoing challenges we have to deal with but when put into perspective with past challenges like complete lack of communication, obsessions, rigid routines, resistance to new things and of course the notorious tantrums, what our family has to deal with now is definitely not as nerve-wrecking as it was before. InsyaAllah it does seem like Raiyan is able to successfully manage these challenges seeing how they have not surfaced in a very long time. What we see now is him truly blossoming and quickly catching up with his peers that many who meet him for the first time thinks he’s indistinguishable. Now he independently comes up with the cutest quips that I, just like any other parent, loves to share on this blog just because it’s something coming out of my child as opposed to it being something related to autism.
The situation in Brunei is still very tricky in that not only is awareness on autism limited, the notion that these children can learn to overcome their autistic traits is practically unheard of. When I personally tell people that Raiyan is autistic, they immediately think they have to feel sorry for me. Though I completely do not blame them to feel this way as I know there are many other families out there who still has to constantly face the daunting side of autism in their children, I still can’t help feeling slightly cheated upon receiving the pitiful looks because if they were to really know Raiyan NOW, they would be surprised to see that we actually don’t really deserve the sympathy. This is especially so if you were to see his incredible report card of last term! But nevertheless, I accept that a lot of autism families in Brunei are still facing uphill struggles on a daily basis and urgent attention from the authorities is seriously needed. That’s why I was scared I might then be transmitting mixed messages when I’m talking about Raiyan in such an amazingly positive way.
So what do I do? Seeing how there is still much awareness needed for autism and its diagnosis, prognosis and treatment, do I want to continue to write about Raiyan that makes him seemingly “normal”? I mean it’s logical for one to conclude from reading the blog that autism is not such a big deal seeing how Raiyan is coping with it so well. I reiterate, I really do not want to discount the challenges other families that I know, who still needs to be paid more attention and as horrible it is to accept, it is easier to obtain this attention when a disturbing or depressing image is portrayed.
At the same time, I don’t want EVERYTHING Raiyan does to be construed as an autistic “thing” especially seeing how the complete attachment of that “label” has proved to be such a unnecessary nuisance for him. I mean some of the adorable things he does and say can very well be separate and independent from the autism. That’s why I thought I should share “those” stories on a non-autism blog rather than here. With this in mind, I was almost convinced that this is the way I should proceed with the blog.
However, the negative consequences of autism in Brunei still being perceived as something depressing and "not wished upon anyone" lingers on in my mind. I know of parents who insist to stay in denial about their child’s condition even though the symptoms are obvious and not getting any better. I know of parents who choose to not take their children out because they can’t bear the attention they draw when being out in public. I know of parents who doesn’t even talk about their child nor share stories about them believing it’s taboo to do so. I also know of parents who proudly talk about their child’s conditions and take him out in public even though he is still non-verbal and relatively hard to control, only to be shot patronizing looks from others. This is when I realized that if I stop talking about Raiyan as he is, I will continue to feed into this unfortunate stereotype and this I fear may lead to MORE parents choosing to be in denial about their child that they may potentially miss the boat for early intervention. Far worse, I fear this may lead to MORE parents feeling alienated from the rest of society resulting in built up resentment and frustration simply because they had to suppress or feel the need to deny something that makes up such an intrinsic part of their lives.
So I decided to maintain the blog as it is. I have to trust that others remember that autism is a spectrum and it would seem that Raiyan is on the mild end and there are others on the spectrum who still require more urgent and close attention. I also have to trust that others FULLY read this blog to see that autism IS still a big deal and Raiyan would not be where he is had he not received the appropriate treatment this past year.
I know for now Raiyan may not speak for the majority of autistic children in Brunei and I don’t expect for people to think he that he is. But that’s not going to stop me from continuing to hope to reach out to other parents on the spectrum who does feel they can relate or even aspire to want to relate. In line with my pweshes philosophy, I can only continue to hope and pray that in time, Raiyan and other children like him can not only help to inspire other families to accept the autism and work on it as early on as possible and insyaAllah along the way they too will be blessed with the opportunity to discover its beautiful side that I see today. And once you’re there, I challenge you to not want to share it too. :D
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