Yeah, I am writing after a long time. Nothing has been affecting me a lot lately, that could be the reason.
It has been a pretty interesting month, a roller-coaster month. I won the Circle of Excellence award at work. Sam did great with his grandparents, cruising around Seattle, attending camps, staying without me for seven whole days, putting up with lot of South Indian food like koottu, Cabbage, paruppu podi etc. It has been a great trip for them and for us, finally, I have sent them on a West Coast trip to get a well-deserved break from us.
Oh, and of course, Sam turned 9 lately and things are slowly starting to hit the fan. 9 more years and we will be in the middle of nowhere looking for god-knows-what for his future. I am yet to do an IEP (Individualized Education Plan) with the Seattle School District. Sam has not been to a public school here since he was 4 and apparently, we can order some devices and headphones for him with state funding and what not. He is also being tested for partial hearing impairment to get more services (like microphones, headphones for the teacher and Sam).
We are also doing what is called an AFLS (The Assessment of Functional Living Skills) and it has confirmed my understanding that though there are going to be huge improvements in the next 9 years, it is not going to be anywhere close to an independent life. So, I am bracing myself to make some huge decisions in a decade, relocating, leaving the country, buying a farm, having another kid (or not). In the meantime, Sam's dad has also been slowly cutting off his ties slowly. And Sam seems to be very happy not having to go to his house lately. This was the EXACT opposite of how things were 4 years ago. It is unbelievable what time can do to a young child's mind.
In our team meeting today, we learnt a few things. Sam's new Augmentative device (a Samsung tablet basically with a custom software called Novachat) is going to be heavily relied upon in the near future. With hearing issues being tested, we can finally have a breakthrough in identifying how to help him speak more meaningfully to us. We are throwing in lot of community programs this year to get him to behave in the community, without getting mocked at or arrested for that matter. For eg: Sam cannot walk out of the store without paying for an item he just picked up. This has happened once and it will get him in trouble in 3 years as he will be considered "juvenile". The laws do change for youths and it can get real dirty what with the law enforcement not being trained properly around autism in this country (or any country for that matter).
With all these issues, he is continuing to grow, play, laugh, learn and assimilate. But I do realize this next decade is going to have a HUGE impact on him now that he is learning to understand the rules of the society. I am excited and scared for him. But, I want him to get out, learn things, have trusting people as care givers and hope that he will not get into serious trouble.
We have recently let him sit on a different seat on the bus and just watch what he does and he has been doing great. Buses, boats, airplanes fascinate Sam, so it is no big surprise that he is mesmerized by rides. His verbal stims get lost in these noisy machines. He is just a cute little kid enjoying simple pleasures. I don't know if I can say that in 2-3 years. "Cute" is a word I will need to let go and suddenly expect lot of serious and compliant behaviors from him (again, to not get into trouble with law enforcement). A child I know has been in trouble and cops have been called and that scares the $%^& out of me.
With all these problems and questions, I am consumed by my own thoughts, do I want to bring another child into this already confusing labyrinth of a life? Do I want to just take care of him and have an otherwise fulfilling life doing what I do best, have a satisfying job, love and marital bliss, have fun and travel the world and just be done with what I have? How much sacrifice is too much for a parent? How much selfishness is allowed for parents? How much success should a woman aim to achieve with all these issues? How much is too much?????
When someone asked me this morning, I think I found the answer, "I want to stop renting the superwoman costume and start enjoying the rest of my son's childhood".
With great responsibilities, unfortunately, you don't get great powers.
It has been a pretty interesting month, a roller-coaster month. I won the Circle of Excellence award at work. Sam did great with his grandparents, cruising around Seattle, attending camps, staying without me for seven whole days, putting up with lot of South Indian food like koottu, Cabbage, paruppu podi etc. It has been a great trip for them and for us, finally, I have sent them on a West Coast trip to get a well-deserved break from us.
Oh, and of course, Sam turned 9 lately and things are slowly starting to hit the fan. 9 more years and we will be in the middle of nowhere looking for god-knows-what for his future. I am yet to do an IEP (Individualized Education Plan) with the Seattle School District. Sam has not been to a public school here since he was 4 and apparently, we can order some devices and headphones for him with state funding and what not. He is also being tested for partial hearing impairment to get more services (like microphones, headphones for the teacher and Sam).
We are also doing what is called an AFLS (The Assessment of Functional Living Skills) and it has confirmed my understanding that though there are going to be huge improvements in the next 9 years, it is not going to be anywhere close to an independent life. So, I am bracing myself to make some huge decisions in a decade, relocating, leaving the country, buying a farm, having another kid (or not). In the meantime, Sam's dad has also been slowly cutting off his ties slowly. And Sam seems to be very happy not having to go to his house lately. This was the EXACT opposite of how things were 4 years ago. It is unbelievable what time can do to a young child's mind.
In our team meeting today, we learnt a few things. Sam's new Augmentative device (a Samsung tablet basically with a custom software called Novachat) is going to be heavily relied upon in the near future. With hearing issues being tested, we can finally have a breakthrough in identifying how to help him speak more meaningfully to us. We are throwing in lot of community programs this year to get him to behave in the community, without getting mocked at or arrested for that matter. For eg: Sam cannot walk out of the store without paying for an item he just picked up. This has happened once and it will get him in trouble in 3 years as he will be considered "juvenile". The laws do change for youths and it can get real dirty what with the law enforcement not being trained properly around autism in this country (or any country for that matter).
With all these issues, he is continuing to grow, play, laugh, learn and assimilate. But I do realize this next decade is going to have a HUGE impact on him now that he is learning to understand the rules of the society. I am excited and scared for him. But, I want him to get out, learn things, have trusting people as care givers and hope that he will not get into serious trouble.
We have recently let him sit on a different seat on the bus and just watch what he does and he has been doing great. Buses, boats, airplanes fascinate Sam, so it is no big surprise that he is mesmerized by rides. His verbal stims get lost in these noisy machines. He is just a cute little kid enjoying simple pleasures. I don't know if I can say that in 2-3 years. "Cute" is a word I will need to let go and suddenly expect lot of serious and compliant behaviors from him (again, to not get into trouble with law enforcement). A child I know has been in trouble and cops have been called and that scares the $%^& out of me.
With all these problems and questions, I am consumed by my own thoughts, do I want to bring another child into this already confusing labyrinth of a life? Do I want to just take care of him and have an otherwise fulfilling life doing what I do best, have a satisfying job, love and marital bliss, have fun and travel the world and just be done with what I have? How much sacrifice is too much for a parent? How much selfishness is allowed for parents? How much success should a woman aim to achieve with all these issues? How much is too much?????
When someone asked me this morning, I think I found the answer, "I want to stop renting the superwoman costume and start enjoying the rest of my son's childhood".
With great responsibilities, unfortunately, you don't get great powers.
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