Its been a long while since I penned down anything here. In fact, a couple of weeks ago, I deleted several old posts and kept only two to remind me of the people and places that have in many ways shaped my life to a large extent.
When I look back upon the last year, the first six months seem to have gone by in a blur. It is July onwards, that somehow seems to assume a new significance for me. K received an official diagnosis of being on the Autism Spectrum.
In retrospect, there were signs that things were not all that well..the usage of words from his small but stable repertoire had shown a decline over a six month period. Over time, the single unit words as well as the two unit words dropped out and they soon disappeared. When you think about it, it seems almost unreal..like it were actually a figment of our imagination. He became extremely self absorbed, would not engage with his peers and was fascinated with anything that spun...wheels, fans...he loved twirling twigs, strings and would be at it for hours on end. He became a new person over those six months.
I would often tear up just thinking how much of what he knew, that we no longer had access to. The thing about Autism is that there are No answers. It absolutely drives me up the wall to not know what actually happened in that little mind...how did the words do a vanishing act over a period of time? Is it lodged somewhere deep inside and it will make a reappearance at a later time, when the connections in his brain decide to spark up, one fine day?I don't know and I guess no one does.
They say that there is no One single, right way to work with kids on the spectrum. What works for one, might not work for the other. You just need to keep trying. And no matter how difficult it seems to be, be patient and keep talking...one fine day, when you least expect it, they may begin talking!!! Yeah I do look forward to that day..
It can often be a very lonely struggle. Culturally, there is a fairly good amount of acceptance about delayed speech, especially amongst boys. But the truth is, with Autism and especially with speech regression, there is no guarantee that the lost speech will ever make a come back, or the new speech skills that develop will finally get to an age -appropriate level. Both of these may never materialize..and therefore teaching alternative communication skills is really important.
I often tell myself that if he remains primarily non-verbal and we teach him to communicate through sign language, we will just have to make the extra effort to teach ourselves sign language too. If one can learn a foreign language, for whatever reason, one can do this as well.
I think the basic idea is to not give up. No matter what happens, no matter how far he progresses...one just has to keep at it. If this has not been easy for me, I am sure it has not been a cakewalk for him either. To suddenly lose an ability to communicate must be a horrible life experience.
It can be very frustrating at times and one needs tons of patience to constantly engage with him. Little utterings which would pale in significance to what his peers are capable of doing and saying, can be quite an achievement. And every day I look forward to hearing something from him.
There is a real fear, that what he has gained through therapy and one on one engagement with us, can one day, just disappear and you are back to square one. It is one fear I go to bed with, every night. Regressions are real and they can creep back in, at any point in time.
It is in these trying times, that you really need a supportive space to constantly rejuvenate and re-prioritize your life. Friends can emerge as the biggest support system...lending a patient ear to all your ramblings and always, count them as life's biggest blessings!!
***
When I look back upon the last year, the first six months seem to have gone by in a blur. It is July onwards, that somehow seems to assume a new significance for me. K received an official diagnosis of being on the Autism Spectrum.
In retrospect, there were signs that things were not all that well..the usage of words from his small but stable repertoire had shown a decline over a six month period. Over time, the single unit words as well as the two unit words dropped out and they soon disappeared. When you think about it, it seems almost unreal..like it were actually a figment of our imagination. He became extremely self absorbed, would not engage with his peers and was fascinated with anything that spun...wheels, fans...he loved twirling twigs, strings and would be at it for hours on end. He became a new person over those six months.
I would often tear up just thinking how much of what he knew, that we no longer had access to. The thing about Autism is that there are No answers. It absolutely drives me up the wall to not know what actually happened in that little mind...how did the words do a vanishing act over a period of time? Is it lodged somewhere deep inside and it will make a reappearance at a later time, when the connections in his brain decide to spark up, one fine day?I don't know and I guess no one does.
They say that there is no One single, right way to work with kids on the spectrum. What works for one, might not work for the other. You just need to keep trying. And no matter how difficult it seems to be, be patient and keep talking...one fine day, when you least expect it, they may begin talking!!! Yeah I do look forward to that day..
It can often be a very lonely struggle. Culturally, there is a fairly good amount of acceptance about delayed speech, especially amongst boys. But the truth is, with Autism and especially with speech regression, there is no guarantee that the lost speech will ever make a come back, or the new speech skills that develop will finally get to an age -appropriate level. Both of these may never materialize..and therefore teaching alternative communication skills is really important.
I often tell myself that if he remains primarily non-verbal and we teach him to communicate through sign language, we will just have to make the extra effort to teach ourselves sign language too. If one can learn a foreign language, for whatever reason, one can do this as well.
I think the basic idea is to not give up. No matter what happens, no matter how far he progresses...one just has to keep at it. If this has not been easy for me, I am sure it has not been a cakewalk for him either. To suddenly lose an ability to communicate must be a horrible life experience.
It can be very frustrating at times and one needs tons of patience to constantly engage with him. Little utterings which would pale in significance to what his peers are capable of doing and saying, can be quite an achievement. And every day I look forward to hearing something from him.
There is a real fear, that what he has gained through therapy and one on one engagement with us, can one day, just disappear and you are back to square one. It is one fear I go to bed with, every night. Regressions are real and they can creep back in, at any point in time.
It is in these trying times, that you really need a supportive space to constantly rejuvenate and re-prioritize your life. Friends can emerge as the biggest support system...lending a patient ear to all your ramblings and always, count them as life's biggest blessings!!
***
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