Rahul celebrated his birthday, ahead of time, on Sunday with Little Caesers pizza, red velvet cake, juice boxes and no party. He had not planned to invite anyone since "there are too many parties around Thanksgiving". But Arun kaku happened to visit and he did end up with one guest.
The reason for celebrating his birthday two days before the actual day was that he would have time to enjoy eating the leftover cake for a few days before he got submerged in the food deluge of the extra-long Thanksgiving weekend.
Monday, November 20, 2017
Friday, November 17, 2017
PTC
The parent-teacher conference was very short this semester.
I has signed up to talk to three teachers. But Mrs. W has been out the last couple of weeks. Her lupus has flared up again. And Ms. P called in the morning sounding hoarse and saying she was going home sick. So that left only Ms. H but I went anyway since I had never met her. There is no substitute for meeting people face to face, especially someone you have to work with.
BTW, Ms. H is Mrs. A! (Mr. A was Rahul's teacher for the last three years but he left this year.) She goes by H but Rahul insists on referring to her as Mrs. A. I took Rahul with me to the conference. Ms. H was very excited to see us and gave both Rahul and me big hugs. She said, "I am jealous of you, you have Rahul for a son." (Rahul is very popular in school these days with his good behavior and all. Also they find him entertaining.) Mrs. A said she used to ask Mr. A for Rahul stories even when he was not her student. I said, "Rahul is doing good this year but he gave Mr. A a very hard time."
If Mrs. W had been there I would have asked about all the classes and plans for next semester. But Ms. H only has Rahul for second hour. So we talked about that. That class is called "On my own" and they are teaching them independence skills such as filling out job applications or deciding what to buy by comparing prices. Also, every Friday they sell snacks to teachers. They have different jobs such as setting up or counting money and they rotate through those. Rahul commented that selling snacks makes him hungry.
Many other teachers came and talked to Rahul, some from earlier years, some he meets only in the hallway but has conversations with. Rahul came home and said that going for the parent-teacher conference was the best part of his day.
I has signed up to talk to three teachers. But Mrs. W has been out the last couple of weeks. Her lupus has flared up again. And Ms. P called in the morning sounding hoarse and saying she was going home sick. So that left only Ms. H but I went anyway since I had never met her. There is no substitute for meeting people face to face, especially someone you have to work with.
BTW, Ms. H is Mrs. A! (Mr. A was Rahul's teacher for the last three years but he left this year.) She goes by H but Rahul insists on referring to her as Mrs. A. I took Rahul with me to the conference. Ms. H was very excited to see us and gave both Rahul and me big hugs. She said, "I am jealous of you, you have Rahul for a son." (Rahul is very popular in school these days with his good behavior and all. Also they find him entertaining.) Mrs. A said she used to ask Mr. A for Rahul stories even when he was not her student. I said, "Rahul is doing good this year but he gave Mr. A a very hard time."
If Mrs. W had been there I would have asked about all the classes and plans for next semester. But Ms. H only has Rahul for second hour. So we talked about that. That class is called "On my own" and they are teaching them independence skills such as filling out job applications or deciding what to buy by comparing prices. Also, every Friday they sell snacks to teachers. They have different jobs such as setting up or counting money and they rotate through those. Rahul commented that selling snacks makes him hungry.
Many other teachers came and talked to Rahul, some from earlier years, some he meets only in the hallway but has conversations with. Rahul came home and said that going for the parent-teacher conference was the best part of his day.
Sunday, November 12, 2017
Rahul's Tae Kwon Do Green Belt
He lost track with his form for a bit, re-started, and then did it right.
Rahul with Master Jack, a sweet and gentle soul.
Rahul with Master Jack, a sweet and gentle soul.
Friday, November 3, 2017
Phone call
Today Rahul called from school. He was worried about the cheetos and pretzels he had eaten regularly in middle school. (We had gotten a whole box of mixed snack bags from Costco and he used to take one to school every day). He wanted to know if it was good fat or bad fat, whether it was going to make him sick, whether is is as good or bad as cake (he has somehow decided that cake is not so healthy but OK), whether it increased his chance of dying at a young age and whether he still had a 99.9999 percent chance of not dying at a young age.
Now this is not a random set of questions. His questioning almost always follows this sequence with each question in the sequence repeated multiple times in different ways. You have to be careful, sometimes the answer is "Yes" and sometimes "No". The wrong answer can end up prolonging the conversation indefinitely. The "99.9999 percent" question is always the last one. To that I always respond with a resounding "YES".
It worries me sometimes that I play along and give him the exact answers that he wants. I do it partly because I don't want him to mess up his good record in school by getting upset and partly because I want to end the conversation soon and get on with whatever else I was doing. One excuse I have is that he doesn't call too often - today was probably just the third day this school year. Also, when he asks these questions at home sometimes I give more qualified answers like "it depends", "it's a matter of quantity" (not for the "99.9999 percent" question, for that one I never risk anything other than a "yes"). I still feel a little guilty because I remember Dr. Pihlgren (the Cognitive Behavior Therapist) saying that he shouldn't be allowed to get into comfortable ruts like that, he should always be challenged so he's forced to deal with fears. I did say to him one day "Rahul, when I'm gone other people are not going to give you exact answers." I need to do more to wean him out of this.
Today though, there was something else that I noticed while talking to him on the phone. The teacher had allowed him to call but was trying to hurry him and get him to hang up soon. (She doesn't know that he has this entire sequence that he needs to go through slowly.) I noticed that Rahul kept responding to her very patiently "Please can I talk two more minutes?", "I need to finish the conversation", "This is important" etc. In the past he would have whined and screamed and had a meltdown. We did get to the "99.9999 percent" question and I did answer it in the affirmative but the teacher forced him to hang up before he was completely done. He probably wanted to ask that question twice more for good measure. I don't know what happened in school after that. I'm curious. I'll update here when I find out.
UPDATE: Nothing happened. He was fine. He felt like he had ended the conversation.
On the way back from school we talked a bit about this. I explained that there is no way I can know what his exact chance of not dying at a young age is, so from now on I am not going to say yes to the "99.9999 percent" question. He agreed. But he politely requested me to answer the previous question (whether something will increase his chance of dying at a young age) for a while and to let him know in advance when I decide not to answer it anymore. He explained that he gets scared because they say scary things in school about food and other things. I agreed that school wants to scare people but it's not people like him who are already careful about what they eat, the scary information is for people who eat too much junk food. He tried to tease out exactly why he gets worried, tried to come up with alternatives to having his questions answered. I again reminded him that we were all going to die anyway.We went on in this vein all the way home and had a very good conversation which did much to improve mutual understanding.
Even three or four years ago I wouldn't have believed that I could ever have a conversation like this with Rahul. To mothers of young children I say hang in there, keep plodding on, your child will make progress - maybe very very slowly - but they will.
Now this is not a random set of questions. His questioning almost always follows this sequence with each question in the sequence repeated multiple times in different ways. You have to be careful, sometimes the answer is "Yes" and sometimes "No". The wrong answer can end up prolonging the conversation indefinitely. The "99.9999 percent" question is always the last one. To that I always respond with a resounding "YES".
It worries me sometimes that I play along and give him the exact answers that he wants. I do it partly because I don't want him to mess up his good record in school by getting upset and partly because I want to end the conversation soon and get on with whatever else I was doing. One excuse I have is that he doesn't call too often - today was probably just the third day this school year. Also, when he asks these questions at home sometimes I give more qualified answers like "it depends", "it's a matter of quantity" (not for the "99.9999 percent" question, for that one I never risk anything other than a "yes"). I still feel a little guilty because I remember Dr. Pihlgren (the Cognitive Behavior Therapist) saying that he shouldn't be allowed to get into comfortable ruts like that, he should always be challenged so he's forced to deal with fears. I did say to him one day "Rahul, when I'm gone other people are not going to give you exact answers." I need to do more to wean him out of this.
Today though, there was something else that I noticed while talking to him on the phone. The teacher had allowed him to call but was trying to hurry him and get him to hang up soon. (She doesn't know that he has this entire sequence that he needs to go through slowly.) I noticed that Rahul kept responding to her very patiently "Please can I talk two more minutes?", "I need to finish the conversation", "This is important" etc. In the past he would have whined and screamed and had a meltdown. We did get to the "99.9999 percent" question and I did answer it in the affirmative but the teacher forced him to hang up before he was completely done. He probably wanted to ask that question twice more for good measure. I don't know what happened in school after that. I'm curious. I'll update here when I find out.
UPDATE: Nothing happened. He was fine. He felt like he had ended the conversation.
On the way back from school we talked a bit about this. I explained that there is no way I can know what his exact chance of not dying at a young age is, so from now on I am not going to say yes to the "99.9999 percent" question. He agreed. But he politely requested me to answer the previous question (whether something will increase his chance of dying at a young age) for a while and to let him know in advance when I decide not to answer it anymore. He explained that he gets scared because they say scary things in school about food and other things. I agreed that school wants to scare people but it's not people like him who are already careful about what they eat, the scary information is for people who eat too much junk food. He tried to tease out exactly why he gets worried, tried to come up with alternatives to having his questions answered. I again reminded him that we were all going to die anyway.We went on in this vein all the way home and had a very good conversation which did much to improve mutual understanding.
Even three or four years ago I wouldn't have believed that I could ever have a conversation like this with Rahul. To mothers of young children I say hang in there, keep plodding on, your child will make progress - maybe very very slowly - but they will.
Independence/House work Update
Here is how Rahul is doing with all the independence and work goals:
- He has regressed a bit as far as waking up in the morning goes. He has been faithfully turning off four alarms every morning and then continuing to lie in bed until an angry mom marches in. (The good thing - compared to a few months ago - is that he responds relatively fast and gets up at that point instead of whining and dawdling for half an hour.) So I started giving him the consequence of not reading at night - we are in the middle of Mission Mumbai in which a New York boy named Dylan joins his friend Rohit's family on their visit to India. As a result Rahul woke up by himself the last couple of days. Let's see how it goes.
- He has been making his own school lunch the last few days (toast bread, heat black bean burger in microwave and put it on bread, put ketchup on it, wrap it up, wash and pack a fruit). This makes him barely-on-time for school because he is very slow. He also needs direction, otherwise he would do everything sequentially and take a lot more time... put the bread in the toaster and sit, when it is done then take out the toast, only then get the black bean burger out and put it in the microwave, sit and wait some more and so on.
- He is changing his bed sheets and doing laundry (with some direction) not every week as planned but more like every other week.
- His bathroom cleaning is not happening as regularly as it should, he does it from time to time
- He empties the dishwasher and puts away the dishes every other day.
- He helps to take out the garbage every week.
- Every few weeks he sweeps the kitchen and mops it. (He now leaves less water on the floor after mopping.)
- He listens to directions more willingly and with less fuss.
- Things he does occasionally - cut vegetables, bag lawn waste
- He is taking more responsibility for history, now he knows what he needs to do, where he is in his list of work and he checks off things he has done. The way the class is structured also allows him to do many things by himself.
- He has regressed a bit as far as waking up in the morning goes. He has been faithfully turning off four alarms every morning and then continuing to lie in bed until an angry mom marches in. (The good thing - compared to a few months ago - is that he responds relatively fast and gets up at that point instead of whining and dawdling for half an hour.) So I started giving him the consequence of not reading at night - we are in the middle of Mission Mumbai in which a New York boy named Dylan joins his friend Rohit's family on their visit to India. As a result Rahul woke up by himself the last couple of days. Let's see how it goes.
- He has been making his own school lunch the last few days (toast bread, heat black bean burger in microwave and put it on bread, put ketchup on it, wrap it up, wash and pack a fruit). This makes him barely-on-time for school because he is very slow. He also needs direction, otherwise he would do everything sequentially and take a lot more time... put the bread in the toaster and sit, when it is done then take out the toast, only then get the black bean burger out and put it in the microwave, sit and wait some more and so on.
- He is changing his bed sheets and doing laundry (with some direction) not every week as planned but more like every other week.
- His bathroom cleaning is not happening as regularly as it should, he does it from time to time
- He empties the dishwasher and puts away the dishes every other day.
- He helps to take out the garbage every week.
- Every few weeks he sweeps the kitchen and mops it. (He now leaves less water on the floor after mopping.)
- He listens to directions more willingly and with less fuss.
- Things he does occasionally - cut vegetables, bag lawn waste
- He is taking more responsibility for history, now he knows what he needs to do, where he is in his list of work and he checks off things he has done. The way the class is structured also allows him to do many things by himself.
Monday, October 30, 2017
Missing the forest for the trees
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.
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.
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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