Weak central coherence (WCC), i.e. a deficit in central cognitive processes, has long been a popular explanation for the tendency of autistic people to focus too much on detail, and too little on the global context. This what makes reading comprehension difficult. You have to understand how a word belongs in a sentence, how a sentence fits into a paragraph and how the paragraph is connected to the whole piece in order to understand what you are reading. A 2015 study says that WCC may not be the only explanation, people on the autism spectrum actually have a narrower functional field of vision: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0133237.
Rahul gave a startling demonstration of that the other day when we asked him to snip off dry flowers from a potted garden mum plant. Partha wanted to see if he could remove the dried blooms while leaving the closely interspersed buds intact. He did the job perfectly on the plant that was on the left side of the porch. But when I asked him to repeat the task with the other plant, it took him several minutes and multiple hints to find the plant although it was an identical one placed on the other side of the porch. You know how small our front porch is, each plant could not have been more than 2-3 feet away from Rahul.
This actually is not uncommon for Rahul at all. He finds it harder than most people to find a book on a shelf or a particular word on a page. Now that it is his job to keep track of his history work (with lots of help), I'm noticing that he does not have a sense of where he is in the chapter or unit. If he stops mid-section, it's hard for him to relocate it when he comes back. Most people simultaneously focus on a point and scan around it while searching or reading, most of us continually scan our surroundings while doing a task or simply sitting around. We do this in physical and mental spaces. Rahul tends not to do these things. He will have to be taught.
Monday, October 30, 2017
Sunday, October 29, 2017
Living on the brink
The other day Rahul was quite silly in the car on the way to school, a carryover from the weekend ..and I got a little worried as we approached the school entrance. "Are you going to be OK in school Rahul? Are you in a school frame of mind?" Rahul grabbed his backpack and skipped out, blithely proclaiming, "Being good in school is easy. I am good all the time."
It might appear that way, given the fact that this school year Rahul hasn't had a single problem so far. It's been almost two months and, compared to past years, it is an astounding record. (I know, I just know that I'm tempting fate by writing this. But I am a rationalist and I don't believe in tempting fate and so I will write this. Besides, even if he has a terrible day tomorrow and every day after that, it will still have been an astounding record.)
As I said - it may appear to be oh so easy for Rahul to be good in school but it sure does not feel that way. Since I wrote about the E. Coli episode, he has had two health-related worries. One was CTE. He read an article in school about multiple hits on the head being connected to CTE, something football players have. That required some discussion, googling and reassurances. Another day it was a worry about worry. Apparently long-term worry can lead to heart disease and stroke. A long conversation was needed to convince Rahul that this happens only indirectly through high blood pressure or obesity or alcoholism, it's not a direct connection. Then there are numerous instances of the silly look or silly laugh accompanied by "in 2010 when baba said".. or "can I tell you my random sexual thought about...".
Given all of the above, every day that goes by without incident in school seems like a lucky day.
It might appear that way, given the fact that this school year Rahul hasn't had a single problem so far. It's been almost two months and, compared to past years, it is an astounding record. (I know, I just know that I'm tempting fate by writing this. But I am a rationalist and I don't believe in tempting fate and so I will write this. Besides, even if he has a terrible day tomorrow and every day after that, it will still have been an astounding record.)
As I said - it may appear to be oh so easy for Rahul to be good in school but it sure does not feel that way. Since I wrote about the E. Coli episode, he has had two health-related worries. One was CTE. He read an article in school about multiple hits on the head being connected to CTE, something football players have. That required some discussion, googling and reassurances. Another day it was a worry about worry. Apparently long-term worry can lead to heart disease and stroke. A long conversation was needed to convince Rahul that this happens only indirectly through high blood pressure or obesity or alcoholism, it's not a direct connection. Then there are numerous instances of the silly look or silly laugh accompanied by "in 2010 when baba said".. or "can I tell you my random sexual thought about...".
Given all of the above, every day that goes by without incident in school seems like a lucky day.
Monday, October 9, 2017
Guardianship dilemma
It's not a dilemma any more because I made up my mind - we are going for full guardianship.
Since Rahul will soon be turning eighteen, the age of majority, in the eyes of the law he will be an adult whether he is ready or not. There is no question that we have to do something about it. The dilemma was, do we go through the court process and establish guardianship over Rahul (essentially ask the court to declare him unfit to make his own decisions) or do we put together a patchwork of powers of attorney etc. as an alternative to guardianship? Answering it was an agonizing process during which I went all the way from "no way are we taking away Rahul's rights by becoming guardians" to "guardianship will protect Rahul because of his limited language, limited social understanding and anxiety".
Presentations by various non-profit groups somehow gave me the idea that guardianship was a no-no. But talking to Greg, my neighbor Sharon (Mitchell's mom) and other individuals gradually convinced me that, for Rahul, guardianship is probably the best thing.
Last week I went to the Arc of Oakland county (http://thearcoakland.org/) and met with a very helpful lady. She explained all the ins and outs of guardianship and SSI to me and even helped me fill out one of the guardianship application forms. Before the rest of the forms can be filled out we need a psychological evaluation, which will be free if the school does it. I've sent an email to school to see what they say. That's the part that will take some time (maybe a month or two). Once we have that, the Arc will finalize the forms for us and send it to the court. They will basically help us through the whole process. Once we get the guardianship (after who knows how many appearances in court), then we apply for SSI (social security benefits). The guardianship makes the case for SSI stronger (as in "if the court thinks this kid is disabled who are you to disagree"). So now it's a matter of going through all the steps one at a time. Only after all this is done will I start looking into employment options.
I was a bit worried that getting guardianship will reinforce Rahul's childishness and take away his incentive to be independent, maybe damage his self-esteem in some subtle way. But then Rahul himself is very aware of his deficits and it is a matter of putting it to him in the right way, explaining that the goal is to provide additional support, he can still do everything that any other eighteen-year-old would do. At any rate, I feel that I have given the matter sufficient thought since I have satisfied my personal criterion for making good decisions - "at some point during your deliberations be totally convinced of the rightness of each of your alternatives". (To clarify, if you are trying to decide between A and B, at some point in your thought process you should be totally convinced that A is the right answer and at at least one point in your thought process you should be totally convinced that B is the right answer. )
Since Rahul will soon be turning eighteen, the age of majority, in the eyes of the law he will be an adult whether he is ready or not. There is no question that we have to do something about it. The dilemma was, do we go through the court process and establish guardianship over Rahul (essentially ask the court to declare him unfit to make his own decisions) or do we put together a patchwork of powers of attorney etc. as an alternative to guardianship? Answering it was an agonizing process during which I went all the way from "no way are we taking away Rahul's rights by becoming guardians" to "guardianship will protect Rahul because of his limited language, limited social understanding and anxiety".
Presentations by various non-profit groups somehow gave me the idea that guardianship was a no-no. But talking to Greg, my neighbor Sharon (Mitchell's mom) and other individuals gradually convinced me that, for Rahul, guardianship is probably the best thing.
Last week I went to the Arc of Oakland county (http://thearcoakland.org/) and met with a very helpful lady. She explained all the ins and outs of guardianship and SSI to me and even helped me fill out one of the guardianship application forms. Before the rest of the forms can be filled out we need a psychological evaluation, which will be free if the school does it. I've sent an email to school to see what they say. That's the part that will take some time (maybe a month or two). Once we have that, the Arc will finalize the forms for us and send it to the court. They will basically help us through the whole process. Once we get the guardianship (after who knows how many appearances in court), then we apply for SSI (social security benefits). The guardianship makes the case for SSI stronger (as in "if the court thinks this kid is disabled who are you to disagree"). So now it's a matter of going through all the steps one at a time. Only after all this is done will I start looking into employment options.
I was a bit worried that getting guardianship will reinforce Rahul's childishness and take away his incentive to be independent, maybe damage his self-esteem in some subtle way. But then Rahul himself is very aware of his deficits and it is a matter of putting it to him in the right way, explaining that the goal is to provide additional support, he can still do everything that any other eighteen-year-old would do. At any rate, I feel that I have given the matter sufficient thought since I have satisfied my personal criterion for making good decisions - "at some point during your deliberations be totally convinced of the rightness of each of your alternatives". (To clarify, if you are trying to decide between A and B, at some point in your thought process you should be totally convinced that A is the right answer and at at least one point in your thought process you should be totally convinced that B is the right answer. )
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