Sadagopan Raghavan

This is a paper I did for my Developmental Psychology course. The subject for my case study is my grandpa Raghavan. Unfortunately from the time this paper was written  there was significant deterioration in his health and my Raghavan Thatha passed away on Jun 10, 2015.


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Developmental Tasks in the Elderly

Case Study: Sadagopa Raghavan


Hari Srinivasan

Developmental Psychology


Abstract


The subject of this case study is 82 year old male, Sadagopa Raghavan, who currently resides in Chennai, India. The individual has recently been diagnosed with Parkinsonism. This paper looks at his life history and examines his current level of performance per Robert Havinghurst’s Developmental Tasks for his age group.


Method of Data Collection


Information about the subject was gathered from family members and a medical doctor familiar with his case, as well as examination of reports and lab work on his case. Since the subject is my maternal grandfather, statements are also made based on personal observation and knowledge about him over the years. The appendix contains interview questions.


Personal Reflection


My 82 year old Grandpa Raghavan had always represented someone who did not let age limit him. It seemed like he could go on forever. He successfully switched career tracks several times over the course of his life, even starting a new law career at the age of his retirement. I’ve always thought he had a most productive and interesting life. He has always been active and engaged in some activity. A few months ago he was diagnosed with Parkinsonism. Last month he collapsed and spent 10 days in the Intensive Care Unit to the considerable shock of the whole family.  


In the context of our developmental psychology course, we study the different tasks or crisis that we face in different stages of our life. Psychologist Robert Havinghurst defined the developmental task of dealing with aging parents as a crisis of middle adulthood. I feel that dealing with the crisis of aging grandparents or near family members is a developmental task that needs to be included for the younger age groups as well. As children, we assume the immortality of our grandparents, especially if all four are alive, so a potential crack in their seeming longevity comes as a shock.  


Description of Individual and Background


Sadagopa Raghavan was born on Aug 25, 1932, in Chennai, India. He was the third son in a large family, typical of that period with 4 brothers and 2 sisters. His own father had been an entrepreneur, which meant that the family fortunes fluctuated over the years depending on the state of his father’s business ventures.  The family went from extremely wealthy with cars, timber estates, mica mines, and mansions, to being economically challenged.  Thus his childhood included interesting experiences like visiting timber estates in the South western state of Kerala, where along with timber; elephants would also be captured and used for hauling logs.


Raghavan’s education was typical for boys of that socio-economic class of that era in India. My family belongs to the Brahmin caste in India, which usually places a lot of emphasis on education. He and his brothers attended Ramakrishna Mission School in Chennai and went to study at Madras Christian College.


Raghavan had an interesting family. His mother operated a small scale business of her own – raising dairy cows and selling milk to local residents and businesses. His mother even participated in the Indian Independence struggle movement, giving speeches to other local women to inspire them. One time, he spoke of his mother’s sister, a social worker who had chosen to help out the “shudra” (or untouchable community) thus becoming shunned by a number of the Brahmin community. I found it refreshingly progressive for women of that era. Another cousin of his ran a Gandhi ashram which assists and educates the poor.


It was expected that Raghavan would follow the footsteps of his older brothers and do Math in college but Raghavan took up Zoology. He had once said that he would have liked to have been like Jacques Cousteau, the marine biologist, but that would not have been an acceptable profession for a Brahmin boy. As it is, he had to do his dissection projects well away from the house, as no meat was allowed anywhere near a Brahmin home. After completing his graduate degree in entomology from Madras Christian College, he became a zoology lecturer. He often recollects the time he had taken his students on an overnight camp to watch baby turtles hatch on the beach.


Raghavan switched careers and joined the central government service based in New Delhi, India. As was the custom of that time and which prevails even today, his marriage was arranged. He had two children - a daughter (my mother) followed by a son. The government job meant that he worked in various departments such as Archeology, Music Arts and even served as Assistant District Collector in rural areas. After his second child was born, Raghavan went back to college to earn an MBA at the University of Delhi.  The business degree led to overseas opportunities and he was sent as part of the developmental aid initiative to the Kingdom of Tonga in the South Pacific.


Raghavan’s stay outside his native India was probably the most prolific period of his life. He was responsible for setting up the small-scale industries center and Tourism in Tonga amongst other things, He was a terrific speechwriter. Though it was not part of his job description, Raghavan helped write the Maritime Law for Tonga as they had none, and Japanese whaling vessels were illegally poaching whales in Tongan Waters at that time. Whaling was still legal those days and my grandpa has recounted stories of the gigantic whale bones that their dog would somehow find and bring home to chew on.


He then got an executive level position at the United Nations and traveled extensively all over the world for trade talks and industrial development. He was even a speaker at the United Nations Conference for Trade and Development. His name would be featured regularly in the New Zealand and Australian newspapers as well as in other countries of the Pacific and even in the Irish paper. Raghavan has met many world leaders including Queen Elizabeth II on her royal yacht Britannia.


At age 55, Raghavan returned to India. He resumed his Indian Government Service for few years but before retiring he again went back to the University of Delhi and got a Law degree. Thus, as soon as he officially retired at age 58, he was ready for another career. He joined some well-known Supreme Court lawyers as a junior lawyer. But given his experience and articulate writing skills, he was asked to write briefs almost immediately and started arguing Supreme Court cases within a year. 


When a consumer protection governmental commission was set up, Raghavan was asked to join. There was no formal Consumer Protection Law in India till that point, and a Commission was set up to compile existing cases and draft a comprehensive Consumer Protection Law. In a sense, Raghavan is one of the drafters of Consumer Protection Law in India. 


My grandpa is also a great admirer of Ralph Nader and would root for Nader whenever Nader stood for the U.S. Presidency. Raghavan carried on his Supreme Court Law career well into his 70s, winning a majority of his cases. He has worked on some landmark cases such as the Kaveri river water dispute case between two southern states.


He had a very intense personality and was always well-planned and meticulous in everything he did. On the other hand, he did tend to be over anxious and wanted every minute detail planned well ahead of time. 


For all his brilliance he was very poor at handling any kind of gadgets from TV remote controls to learning how to use the computer. It was my grandma who would often do all the computer related activity. Grandpa would discuss Indian temple architecture at length, probably as a result of his years in Archeology. He’d even helped secure the site for the well-known Malai Mandir temple in New Delhi. 


He loved gardening and had quite the green thumb growing all kinds of vegetables and experimenting with hybrid varieties. My grandma reports that grandpa often gave advice on plant growth to their botanist neighbor who worked in the Agriculture Department in the Pacific. Raghavan had developed some dozen varieties of eggplant for instance with different combinations of coloring and had come up with a new sugarcane variety in the Pacific. In India too, he continued his passion using pot plants on the balcony and terrace as they now lived in an apartment.


As they were aging, Raghavan and his wife decided to shift back to their native Chennai in South India, to be close to their siblings and other extended family. They made the move 4 years back. 


However, the move meant the end of the law practice as the Supreme Court is located in the capital city of New Delhi.   Suddenly Raghavan was not a busy man anymore and he had been used to being busy all his life. It was just him and his wife at home and really nothing much to do. Though both of his children visited, they lived in other countries and had their own young families to take care of.  My grandparents still attended all the weddings, other family events and rode enthusiastically on public transportation to events and temples. Mrs. Raghavan had been a homemaker all her life and she continued in that role, though a lot slower.  However, Raghavan simply was not being intellectually stimulated anymore and that is when he visibly started slowing down. 


Mrs. Raghavan reports that in the last couple of years he would just wander around the house, not really interested in anything.  He would read the newspaper and watch the occasional cricket match. Raghavan had always loved writing in his diary yet he never asked to buy a diary for the year 2014 at all. Mrs. Raghavan simply thought he had lost interest and did not think much of it.  


Small unnoticeable memory lapses followed but this was put down to age. He started eating less and became physically weaker. His memory lapses increased while his motor skills decreased. His handwriting skills declined and he became reluctant to even pick up the pen as he could no longer motor plan to write, though he would stare at the paper. 


He was diagnosed with Parkinsonism in September 2014. Some of his medications induced hallucinations and he would imagine people or situations. He would speak incessantly on some topics like court briefs but his speech would often be out of context and unclear. With physiotherapy and medication, his writing skills seemed to improve as well as his memory but the nature of the disorder means waxes and wanes.


Developmental Tasks


Developmental Psychologist, Robert Havinghurst (1968) of the University of Chicago delineated tasks that were to be carried out in each of the 5 major stages of life.  According to Havinghurst:


The developmental tasks of life are those things that constitute healthy and satisfactory growth in our society. These are the things a person must learn if he is to be judged and to judge himself as a reasonably happy and successful person… Some tasks arise from physical maturation… others arise from cultural pressure…and yet others from the personal aspirations of the individual which are part of the personality or self.


Each age group faced different developmental challenges or tasks.  For the Later Maturity stage of above age 60, Havinghurst lists six such tasks.


1.     adjusting to retirement and its reduced income

2.     adjusting to declining physical strength and health

3.     adjusting to change in the health of one’s spouse

4.     establishing an explicit affiliation with one’s age group

5.     Meeting social and civic obligations.

6.     establishing satisfactory physical living arrangements


Havinghurst’s focus is on reorganizing functions and expectations. For example, older adults who do not accept their changing physical and heath limitations and adapt may become maladapted. According to Havinghurst, the continuing refining roles and expectations to meet environmental demands accomplish the maintenance of identity. (ed. By M.S. John Pathy., 2005, pp.54-56).


Four of these tasks (1, 2, 5 and 6) are examined in the case of Sadagopa Raghavan as they seem most relevant to his case.


Task: Adjusting to Retirement and Reduced Income


Fortunately, finances are not a challenge for my grandparents in their aging years. Raghavan’s successful careers, savings and investments over his lifetime meant that they could expect to maintain a comfortable standard of living. Having retired from the Indian Government, meant that much of their medical expenses would be covered under the government medical scheme for their lifetime. So fortunately living and medical expenses are not an overriding issue at this point.


Psychologist  Robert F. Peck (1968) had identified, “Ego differentiation vs. Work Role Preoccupation,” as a conflict that arises in the elderly group. This essentially refers to, “finding ways to appreciate and identify the self without the career being the marker of success.” (ed. By M.S. John Pathy., 2005, pp.54-56). Raghavan had coped with his first retirement by plunging into another career.  It is possible that Raghavan’s behavioral apathy towards new interests in the last two years could simply have been early signs of the Parkinsonism which was yet to be diagnosed. If that health concern had not appeared, it is possible he would have developed new interests in his new environment given his self-driven personality, methodical nature and innate desire to remain active.


Task:  Adjusting to Decreasing Physical Strength and Health


In my grandparents’ house, it was my grandma’s asthma that had been the overriding medical issue. Thus my grandpa Raghavan falling ill had been unexpected. He had always maintained reasonably good health till around age 80. “The caregiver for a married elderly frail person is usually the spouse, who is also elderly.” (Berger 564). Thus suddenly there was a role reversal - “The partner who nurtured may need nurturing care; the healthy partner may have to assume new roles of banker, handyman and decision maker.” (ed. By M.S. John Pathy., 2005, pp.54-56). During one his moments of consciousness during his hospital stay, my grandpa had sadly remarked on the difficulty that my grandma now was facing. Indeed, my 76-year-old grandma now has to manage everything from handling medical claims and treatment to hiring support staff to managing finances in addition to her own fluctuating health. 


However, Raghavan had the foresight to keep his wife well educated on managing finances as a significant burden of IADL (Instrumental Activities of Daily life) has now fallen on her shoulders. IADLs include, “managing medical care, food preparation, filling out tax forms and payments, transportation, communication, maintaining a household and managing finances… IADLs are thought to be even more critical to self-sufficiency than ADLs (Activities of Daily Living)” (Berger, p. 562).  While my grandma is managing well on this front, fortunately she also has significant help from her son on these matters.   


Raghavan has a condition called Parkinsonism. The better known Parkinson’s Disease (PD) is generally associated with Lewy bodies in the brain neurons which can be addressed with dopamine replacement therapy. Parkinsonism, on the other hand, is an atypical form of PD and can include wide-ranging symptoms in addition to typical PD symptoms, and may or may not respond to dopamine replacement therapy. Related neurodegenerative disorders like Progressive Supranuclear Palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) etc., are all classified as Parkinsonism.


Raghavan had initially refused to accept that anything was wrong with him at the time of his diagnosis a few months ago. Initially, he developed mild symptoms of the condition which includes bradykinesia (slowness in the execution of movement),  pill rolling movement  (mild form), tremors and cogwheel rigidity. 


Later, he developed Parkinsonism Dementia.  This is where the patient starts losing their recent memory and they have difficulty in forming new memories. The pathology behind this is decreased dopamine production in the substantia nigra located in the basal ganglia. It has two divisions - one goes to the mesolimbic system (affects memory) and the other to the cerebellum (affects motor). So both memory and motor are impacted negatively. 


Constipation due to slowing of the bowel muscles reduced his appetite. The decreased eating and drinking along with metabolic derangement resulted in hyponatremia (drastic drop in sodium levels). He lost consciousness and had to be rushed to Intensive Care Unit. It was also thought that he may have had seizures and a mild stroke. One of the main attempts in ICU was to restore his sodium levels along with dealing with age-related issues in ICU such as respiratory infection.


After around 10 days in the ICU in November-December 2014, he was moved into the regular ward and started on slow liquid feeds and physiotherapy targeted at motor activity in order to decrease chances of disuse atrophy and stiffness. After two weeks of hospital care, semi-solid soft diet, he was discharged but will need rigorous care at home. He needs to work more on physiotherapy in order to improve his basic walking and motor skills as well as regular food and bowel movements. He needs to avoid excessive bed rest and its related consequences such as bed sores. He will likely need 24 hour case in the near future in case he tries to get up and falls before he regains his walking skills and then daytime assistance with living skills after that. He is not able to independently perform most of the tasks identified in the Activities of Daily Life (ADLs), namely eating, bathing, toileting, dressing and transferring from a bed to a chair (Berger, p.562). But in the few days since his discharge from the hospital, he is showing signs of improvement in areas of walking, eating and trying to get up from the bed on his own.


On a psychological level, there is bound to be a decrease in morale for Raghavan. This is going to be one of his major challenges ahead. He not only has to deal with recovering from a significant hospitalization setback but also needs to be dependent on other people to assist with his daily living skills. Having to wear an adult diaper can appear extremely demeaning for most adults. To get out of the hospital bed to sit or do his walking exercises, he had to wait for the twice daily visits from physiotherapists. That is bound to be a great source of annoyance for a formerly active individual. One time there had been some delay in changing his adult diaper. He had demanded to go home from the hospital, stating that he was, “being treated like a worm.”  As part of his coping mechanism he has sometimes behaved like a stubborn child, refusing to eat or refusing to cooperate with therapists, or getting angry. He had pulled out his nasal feeding tube and his IV line at the hospital and needed his hands to be restrained which further upset him. A thumb impression had to be taken in place of his usual signature for the annual life pension verification, which again upset him. His reaction is not surprising given that in countries like India, only the un-educated use thumbprint signatures.  Counseling and care from close relatives and loved ones always helps in this situation. In his case particularly, memory of the incident may not be properly established, according to my cousin and medical doctor, Dr. Madhu Parthasarthy, who has studied his case. So there maybe distortion in his reaction to it and patience is required while nursing.


Fortunately, Raghavan’s family has been very supportive in his time of need. Raghavan’s son visits often and helps guide his treatment plan. Relatives poured in to visit him at the time of his hospitalization and continue to visit him frequently. Many helped spend nights outside ICU and helped with food and moral support for my grandma. His nephew frequently comes and speaks to him of his younger days to divert his obsession with law, and my grandpa even recalled the names of the family cows and pet dogs they owned when he was a child. Both his sisters visit and talk so much that he has to tell them to stop talking. His brother calls frequently. My grandma’s siblings also offer considerable support, especially my grandma’s younger brother. The visits and calls no doubt cheer him up immensely in his time of need. He will continue to need this support going forward.


Task: Establishing satisfactory living arrangements


When Raghavan and his wife moved to Chennai, they did so with the explicit aim of being close to many of their near and dear ones in their old age. Their plan was actually well thought out, as evidenced by family support during the time of his hospitalization. The advent of Parkinsonism was an unexpected setback. That prematurely moved Raghavan from the old-old elderly to the frail-old elderly category. With physiotherapy, Raghavan is expected to regain some level of mobility, though he is likely to continue needing daytime assistance from staff for daily living skills.


Task: Meeting social and civic obligations


I feel this is one area my grandfather met very well. Throughout his work life, he had always been admired as a conscientious and trustworthy individual by all around him. He engaged in a lot of volunteer work and activity. Whatever task he undertook, he did it wholeheartedly and with great sincerity. When the Malai Mandir Temple authorities approached him a few years back, he declined the need for a public ceremonial acknowledgment for his earlier contributions via a plaque etc.  


He never engaged in corruption that is rampant in developing nations like India despite occupying positions of considerable authority and influence. Over the course of his life, he always strove to find gainful employment for many individuals he had come across of varying backgrounds with no thought of personal gain. He has often been a counselor for many family crises in the extended family circle and amongst friends.


Of course, the sudden advent of a debilitating disorder like Parkinsonism changes the game plan and he is in the process of finding ways to cope with the changed circumstance. The family around him will have to help him in this process.


Summary and Synthesis


Worldwide, the life expectancy of humans is increasing. According to a report by Muthane et al. of NIMHANS (National Institute of Mental Health and Neurosciences, Bangalore, India):


The elderly population in developing countries is predicted to increase by 200- 280% compared with a mere 30-40% in the developed nations. Of the world’s 580 million elderly (>60 yrs), 61% live in developing countries and 22% (of total) live in India. 


A corresponding increase in age-related disorders is only to be expected with this huge increase in aging population in India. The NIMHANS report further cites a study carried out amongst the elderly in Bangalore, India, showing that, “24% had Parkinsonism, with PD being the commonest (71%) followed by drug-induced Parkinsonism (2.55%).” They acknowledge that Parkinson’s and Parkinsonism has become a common neurological problem amongst the elderly in India. A major task going forward for these countries will be a establishing a system of caring for the elderly. (Muthane, 2007).


The major challenge at the individual level for 82-year-old Raghavan is coping with the realities of his chronic illness. Though Parkinsonism is understood to be degenerative in nature, the degree of progression and treatment options are not fully understood. Parkinsonism medications may also produce unpleasant side effects like hallucinations and insomnia and need to be constantly monitored and modified. Other age related conditions could add complications. 


Psychologically, Raghavan still has not come to terms with his new and possibly debilitating diagnosis. He is intelligent enough to grasp that this label is thought to be neurodegenerative and that can be very devastating for anyone to hear. He may be worrying about my grandma’s future and other family issues as well. 


The fact that he is likely to be dependent on others for his daily living skills will no doubt irk him immensely.  The possibility of loss of some of his excellent cognitive abilities and memories due to the nature of his illness may be extremely frightening for him to deal with. 


Struggling with both motor skills and memory loss is overwhelming at best. Continued support and counseling from family and friends will be critical. It will be a trying time for him and his caregivers as they attempt to journey on this new path. 


People around Raghavan will have to help him develop new interests as part of his coping mechanism. For instance, interest in spirituality is both acceptable and age appropriate for him in the context of Indian culture, as is interest in music. In addition practices like regular breathing and meditation exercises may in fact help brain functioning. He may never go back to being the dynamic active individual of old but has to remember that the end game is a decent quality of life and a good respect for the self. 


References


Berger, K.S. (2013).  Invitation to the life span (2nd ed., pp. 499-572). Macmillan Higher Education.

ed. By M.S. John Pathy. (2005). Principles and practice of geriatric medicine. (J. Morley, A. Sinclair, & M.S.J. Pathy, Eds.) (pp. 54-56). Chichester; Wiley, c2006

Havighurst, R. J. (1953). Human development and education.

Muthane, U., Ragothaman, M., & Gujuraj, G. (2007, September 10). Epidemiology of parkinson’s disease and movement disorders in india: problems and possibilities. Retrieved December 11, 2014, from http://www.japi.org/october2007/R-719.pdf


Symptoms of Autism spectrum disorders.

Part of my Developmental Psych Assignment (written in high school)
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Symptoms of Autism spectrum disorders.


For a child to receive the diagnosis of ASD under DSM-V, the child must meet 2 criteria.
1) deficits in social communication and social interaction and
2) restricted repetitive behaviors, interests, and activities (RRBs).
Because both components are required for the diagnosis of ASD, Social Communication Disorder is diagnosed if no RRBs are present.


Communication deficits and restrictive behaviors can often result in challenging behaviors.  Autism is a spectrum disorder meaning that it can range from very severe (non-speaking and/or challenging behaviors) to very almost indistinguishable from peers (verbal with slight deficits in social skills etc). Some individuals can be very gifted in a particular area and they are called Savants. The textbook is actually inaccurate in equating Savants with Aspergers (Aspies) as Savants range in their level of symptoms across the board from mild to significant. An example is the severely autistic Stephen Wiltshire who is nonspeaking and lives in London. Stephen can reproduce entire cityscape views in his paintings after just having seen them aerially for a few minutes from a helicopter. Another example of a savant is from the movie Rainman.


As a person who is pretty severely affected by autism, I have to disagree with a lot of what the author states about autism.  For example Berger in page 275 states,  “Children with any form of autism find it hard to understand emotions… do not want to interact with anyone.. do not understand romantic love .. slow to develop a theory of mind.”  Such broad generalizations are misleading and do not result in effective treatment. I believe the issue is one of communication challenges which make it hard to develop coping mechanisms that typical people use to be able to react in a socially appropriate way. Cognitively understanding an issue should not be confused with sensory-motor execution of a task, which is the observable behavior. I also feel very strongly about the lack of Theory of Mind and Autism and I hope to do more research down the line to debunk this theory. The problem is that when such broad generalizations are used in textbooks, the resultant students come out with a mindset that is not open to other possibilities and the affected autistic individuals suffer from ‘more of the same.’ I’ve had therapist after therapist work with me who seemed to have their head stuck in the sand because that is what they were taught about how autism should be. The kids who don’t fit the mindset profile of autism are written off as unable to improve.


 What do we know about the causes of Autism?


It’s been 16 years since my ASD dx, I’m nowhere close to a breakthrough, so the answer is that we don’t know nearly enough about the causes - there just seems to be too much confusion and too much debate. The fact that its a spectrum disorder makes it all the harder - it’s like searching for a single solution to 100,000 problems. Every breakthrough helps a fraction of the population, the ones that fit that cure’s physiological profile.


 Explanations for the rapid rise in Autism numbers in the US in recent years.


Almost 6% of special education students in the US have the ASD dx and another 6% as developmentally delayed.


A few guesses for rise in numbers
1.    Changes in criteria between DSM-IV and DSM-V means that  ASD (Autism Spectrum Disorder) now includes
  • Aspergers. Diagnosis formely given to folks with no intellectual disability and no language deficits. The aspie community is apparantely unhappy about being clubbed with autism and consider it a major downgrade.
  •  PDD-NOS (Pervasive Developmental Disorder- Not otherwise specified). A dx usually give to more individuals who did not meet all the Autism criteria.
  • Childhood Disintegrative Disorder. Dx given to kids who developed normally till age 3 then regressed.
  • Mental Retardation is now often called severe autism or intellectual disability.

2.    Early intervention: The word autism is ubiquitous in mainstream media and most new parents are aware that it is a serious childhood disorder. So many parents push pediatricians / neurologists or developmental psychologists to give them an ASD diagnosis if there is even the slightest sign of some developmental delay as they want to access to and start early intervention services. Professionals on their part also want to be proactive as early intervention can make a significant difference for many kids. Even children who would have been considered speech delayed in the past are thus getting the ASD diagnosis.  There are thus greater number of diagnosed kids. This also means there are great numbers of children who are ‘recovering’ from autism because this specific subgroup needed only that early timely intervention, which lets them overcome that hump.

3.    Educational Dx. Many school districts classify children as ASD so that they can fit into existing special education classroom models. Many kids with Cerebral Palsy and similar issues progress to an ASD diagnosis as they improve their physical symptoms. For example, my friend had severe CP (umbilical cord wrapped around his neck, cutting off oxygen flow) at birth. But with intensive therapy, he learned to walk by around age 6-7. His school district changed his dx to autism so that he could be put in an autism classroom rather than the one for CP kids who were wheelchair users.

4.    Access to Services. Till age 22, autistic children are covered by IDEA (Individuals with Disabilities Act) which theoretically allows special education services like behavior modification, LRE (least restrictive environment) classroom, smaller classrooms, higher staff ratio extra coaching (resource) and a few other safeguards. A diagnosis of ADHD on the other hand, may not qualify for special education services under IDEA and may only qualify for Section 504 of the ADA (Americans with Disabilities Act). So some parents may push for the ASD diagnosis as it will give their child the extra support which they may not otherwise receive.

5.    Then there are the reported cases of some parents who seek the diagnosis, as it gives their child extra advantages and preferences in terms of individualized learning, testing accommodations etc. This is unfortunate in some ways and could well be heresay, which makes the topic somewhat controversial.

6.    When services are deemed better in a particular location, it naturally draws people from other countries to that place seeking those services for their developmentally disabled child. That child may not have received the ASD dx in the home country due to lack or knowledge or other factors.  This naturally increases the ASD numbers. Both Australia and Canada do not allow a non-citizen child with a disability to enter or their country. News articles have highlighted case of immigrant parents who were asked by Australia to leave their disabled child behind in their native country. Luckily the USA is far more humane and does not impose such restrictions. Similarly non-Canadian citizen with disabilities cannot live in Canada. Essentially I would not be allowed to live in Canada or Australia despite being born in the US and a US citizen.

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Comments
Wow, this is really great. I like how you debunk popular theories about autism.
I hope you write more and more articles in the future. - From Little Hari Balaji

A Kayaking I Go

To say that I am fascinated with water is an understatement. Given a choice, I would live right by an ocean beach or a lake front, where I could see the water all day long. 


Water sports just seem so much more fun than land sports. So when I was asked if I wanted to try Kayaking, I was all agog. My family had been kayaking in Kauai, and rafting on the American River and Rogue River, but I was always a passenger and not an active participant. The DSA instructors had been great with teaching me to ski last winter and this time, they were going to teach me to paddle a kayak. 

Day 1 - Donner Lake 

Day 1 was at the north end of Donner Lake. I was recruited to carry not one but 2 kayaks from the parking lot to the beach along with Michael Hunter. I did have to keep putting down the kayaks a number of times as i had never done this before and the handles do chaff your hands after a bit. In my case, it was more like dropping the kayak, rather than setting them down gently, given my impulsive body, but hopefully i will improve with practice. 






Gary and Michael  were my main instructors for the 3 hour lesson. Its always a bit of a challenge trying to teach someone with my combo of strengths and challenges, a task that requires a good deal of motor organization. So while i perfectly understood Michael's instruction to hold up the paddle with my elbows at 90 degree angle, when it came to the actual motor implementation of this seemingly simple instruction, i was at sea. I could visually imagine my arms up there in that 90 degree, but outwardly, i was restoring to my default stimming behavior, especially when the motor muscles cannot figure out what to do. And there was plenty to stim on as i was surrounded by some gorgeous scenery. 


There were other issues as well. I could not hold the paddle properly for instance and kept dropping it. It is one long black handle, with pink paddles at either end, so where exactly does one put one's hands. It would slide and one side would become longer than the other. Michael first tried to put some kind of fat grip  one one side so that i would have a guide at least for one hand. But the issue with the grip is that its feels a little mismatched in addition to becoming loose. So while one side had a place marker, the other hand did not, so that hand kept sliding all over the place, But the absolutely great thing about the DSA instructors is that they keep trying different things rather than give up. Michael came up with the idea of using 2 rubber tire strips and fastening them on the paddles with plastic tie downs. Now there were 2 grips in which to slide my fingers and grip the paddle. There was less need then for me to worry about how and where to grip the paddles, which helped with the organization. Of course my sensory system still found loopholes on which to stim on - one of the strips was slightly twisted and i kept trying to fix that - a totally unnecessary activity on my part. 

 We had to figure out how to get me to paddle. Finally we figured out that we could do a left-right and 1-2 verbal instruction to help me keep the rhythm.  Voila, the kayak was moving under my own steam without any physical help. The left side of the paddle went into the water, pushed back the water, followed by the same action on the right. i imagined a giant turtle swimming by me - it lifted one big flipper, pushed the water, then lifted its other flipper to do the same. Then it flipped over on its back and did the same. all the while the turtle wagged its tiny tail, saying "how can this not be fun?"

 There I was, paddling to the chant of Gary's 1-2. Now that's progress! I was totally totally thrilled. Though all that paddling was tiring, i was kayaking on my own steam on an absolutely beautiful lake. What more can one ask for?  I can only get better with practice. I have to learn things like steering rather than just propelling the kayak forward etc. At the end of the current lesson, i had to paddle my kayak back to shore and drag my kayak up on the beach as well. The team and nature all cheered for me. Dad gave my effort and performance an A+ and I was promised a dinner at  a restaurant of my choice when i got back. 















Day 2 - Lake Tahoe



Day 2 began at the Tahoe Vista Recreation Area on the north shore of the Lake Tahoe. I had been boating with my cousin bro Arjun,  2 summers back on Lake Tahoe. We had gone all the way to Emerald Bay from the south shore. Lake Tahoe is absolutely massive and equally awesome, The waters start from a light green near the shore to a ocean blue as its depth increases. When you are in well in the middle of the lake, it almost feels like you are on an ocean, with its choppy waves, except you can see the distant mountainous shore all around. In the bright sun, the far shores turn a mysterious gray blue. Marina from DSA, lives right by the lake - OMG, how fantastic is that! - to see such views night and day, all year long.




I helped carry one kayak down to the beach this time with Danielle. (The not-dropping part is still a work in progress.) Day 2 was a kayak adventure tour of almost 3 hours. A group of some dozen people set out - participants and instructors. We set off around 9:45 and came back only at 1pm.  I was on a 2 person kayak this time, with Gary in front. The DSA staff were hoping that i would copy Gary in front of me and paddle accordingly. In retrospect, i think  it will be better for me to be in the front, so that the instructor can keep verbally reminding me to stay on task. I did keep getting distracted and kept stopping my paddling of  the kayak. Once I start to stim, its like a runaway train and hard for me to get back on track on my own. 

 I was pretty tired after the previous day's activity as well. 



I was surrounded by beauty, I was afloat on beauty. All I had to do was stretch out my hand, and i was touching beauty. The sun rays pierced the water, turning it into a rainbow spectrum. The wind added its caress and expressed itself as waves that lapped at the kayak. The water responded with a  sigh that was deep blue; total bliss and contentment.

The sensory systems of the entire group was exhilarated and we all basked in the arms of mother nature. In my case, however this outwardly translates to more stimming. I rocked and made verbal noises. There was so much visual stimulation (of the good kind), but still a lot for my sensory system to process comfortably. I do wish some medical researcher would  find some clues that would help reduce the stimming, and soon. I am so tired of this constant, almost involuntary, stimming behavior.


Our route hugged the shore all the way to Crystal Bay, where the casinos are. Looking at the shore from the water is a totally interesting perspective. You pass other boats headed for deeper waters as well as other kayakers. You see people on shore and they look like action figures walking around. You see boat docks and buildings. Tom came all they way on a paddle board with a single oar. That looked interesting. You have to stand the whole time, so I guess a good deal of balance is called for. Maybe if I get better at the kayak, I can learn paddle board too in the future.


Thanks DSA for taking the time to teach me. 
I have to agree with my friend the turtle and say, "How can this not be too much fun?"




Reflections on Jean Paul Sartre


While on one level, Sartre's philosophy may be a call to self-determination, and I could see some justice in some of his observations. But it was also very depressing to say the least, especially his comment “"Every existing thing is born without reason, prolongs itself out of weakness, and dies by chance." It made our lives seem so meaningless and worthless. 

I just now finished working on a volunteer project for India Literacy Project. My job was translating their number filled field study reports into reader friendly web content.  (Link to writeup) The current initiative focuses on the educating the children of migrant workers in the brick kiln industry in a specific district in southern India covering some 100 kilns and 15000 families. It will be based on a successful model carried out in a neighboring district last year.

However, what I learnt about their lives was shocking and somewhat Dickensian. The workers stay inside the kilns for 5-7 months and work 12-14 hours a day including 7 hours at night. Given this, do they get any time to think about education for their children. Governmental education schemes exist, but they are too far away, or the teachers don’t like all the brick dust the kids bring, in addition to the kids being present only for 5 months in the school year.  So why push for their education right? So more often than not, these children are roaming around in a very unhealthy and dangerous brick kiln environment, babysitting each other, or becoming child labor, so that they can help their parents pay off the advance amounts borrowed from middlemen. So education models for these child would have to cover a number of issues including the continuity of education throughout the school year.

Which brought to mind the seasonal nature of agriculture in the US. Are there similar issues regarding the education of the children of these migrant agri workers?  I realized that I  know very little about them, other than what may have been mentioned in my school history books. Cesar Chavez himself was in and out of school many times wasn’t he? But he barely made it to half a page in my US history textbook.


The next thought was how to link these issues to statements made by Sartre which essentially says that we have the power to transform ourselves. How can  people caught in the perpetual cycle of poverty and illiteracy transform themselves. What is the existent reality of such folks? Or are they doomed, as Sartre proclaims, “Life begins on the other side of despair?”

The Logic and the Absurd



The Logic and the Absurd


In his essay, Will to Believe, William James essentially asserts that there is great value in what he calls our passional tendencies, which may flavor the choices we make.  He contends that where there is willingness to act, there is a will to believe.  Pure logic can’t dictate our beliefs and faith is sensible. Science should not discredit these in a knee jerk reaction by yelling, “There is no Evidence,” for everything cannot be explained by science. Au contraire, if we look for absolute answers, we will close our minds to furthering our inquiry of the truth. Religion is a therefore very much a live hypothesis for James; a live hypothesis being measured by an individual’s willingness to act. Faith or belief becomes an extension, in the sense that it is a “willingness to act irrevocably.” James’ essay is an attempt, "to defendour right to adopt a believing attitude in religious matters, in spite of the fact that our logical intellect may not be coerced."

A Hand at Skiing


I wondered….
Fresh snow under naked toes
Dream-like feeling that only snow knows
Oh Yes..!
scrunch of puff-balls
A delightful sensation I cannot fake
crystals, hexagonal lattice
hydrogen bonds shatter under
crunch...

Oh No...!
its COLD
Despite my perceived relish, I must confess
Definitely
Naked toes in snow are not the best
....no naked toes...
Skiing...
For that, I will be back...



A Hand at Skiing



Skiing has totally got to be the most fun sport (after jet ski!) and I just looove it. I’ve been asked to try it for a couple of years now, but my fear of falling kept me back. My impressions had been built up by the those guys zooming down near vertical slopes so I had made up my mind that such activities belonged strictly in the realm of TV watching and Winter Olympics.

Last winter, however, I was bulldozed into skiing, My cousin Arjun had tried at Thanksgiving and he reported that though falling was inevitable, it was super fun. Janna told me I was confusing the black diamond slope with the beginner slopes which were relatively user friendly. In Dec 2011, my parents had taken me to the Heavenly Ski Resort, as part of a Tahoe trip, and made me watch some of the beginners learning. I was given a parade of examples of other kids who’s tried and were enjoying it. Willy nilly, it became clear that I would end up on those ski slopes.  But it was still with some trepidation that i agreed to give it a try. It was already March 2013, the end of the ski season, so the weather was warmer. But maybe that was better for this nervous nube. A day trip was planned to Tahoe and Alpine Meadows Ski Slopes where DSA held lessons.


Ski rentals were the agenda after checking in at the DSA office at Alpine Meadows. How on earth was I going to manage all these  apparatus was the thought in my mind. Motor planning has been a weak point, which attempts at coordinating those bollywood dance steps had so aptly demonstrated, so how was I going to coordinate these elongated extensions, in addition to coordinating my hands and feet.  Ski boots are HEAVY and very difficult to put on. Walking with those heavy boots was, well, difficult but then I found, they were not so bad as well. I often do have a body-space disconnect, and the heavy ski boots were kind of grounding for me, which felt good. On the other hand, stiff as they are, ski boots are not the most comfortable of footwear, so i was very conscious of the weighty things that hung around my ankles. To add to it all, I was told that I need to carry my skis too. Wasn’t I already carrying around 2-3 pounds at my ankles? Now I had to carry around 2-3 pounds on my shoulders too!


I had 2 instructors and they took me onto the snow. They helped put the skis on and we did some  warm up exercises for some time. I had to learn what to do with the elongations attached to my feet. How do I manipulate each foot. Would I even be able to balance? I had fully expected to fall right away and go sliding and gliding all the way to kingdom come. Au Contraire, to my surprise, I was able to balance reasonably well (and I had 2 instructors to help). It kind of felt like the times I’d been roller skating many years ago. Before I knew it, I was being led in the direction of the Subway ski lift. It was good that I was not given time to think, the immediate task was to get me seated on the ski chair. The instructors had the operator slow the chair down, which made it easy for me to get on.


I watched the ground disappear beneath my feet as we rode up the ski chair. Dad and Mom waved and shouted encouragement from below. Cameras clicked busily. The bigger trick is to get off the lift at the other end without falling, it does not slow down there. Dad had talked a lot about falling off at the other end; I most definitely did not look forward to the falling off the lift. There is a little slope where you have to get off, I got up, and viola, landed on my feet. My skis slid the few feet that slope to the plateau, but I was still very much on my feet. Success!


At the top of the Subway Lift and just by the Meadows Lift,  is a snow travelator, called a magic carpet and we practiced on it for a while. The slope next to it is very gentle and so you go up the carpet and ski down. I was put through the paces. Confidence grew!


I got ready for my first downhill skiing. The subway slope is a beginner slope but then I was still only the beginner of beginners. The slope loomed down, my muscles murmured, “it must be a 80 degree slope,” though my rational mind scoffed at that thought, and attempted to correct the degree accordingly. The instructors used a  kind of harness which helped me be independent yet kept the instructor in control, should the need arise. It must look funny to the onlookers eye. I felt like a reindeer, who stood next to Santa on the snow. A tie of sorts between my 2 skis kept my skis parallel. The goal was to get me to go down the slope without worrying about skis going awry. Down I flew, the World War 2 flying ace. OMG! It was a total rush! The instructors were on either side of me the entire time. No wonder this sport is so well loved. I got to ride the ski lift and ski down quite a few times for the remainder of the lesson.


I was back 2 weeks later for another lesson. It was March 31st and the ski resort itself was closing down. The crowds had thinned down. I still had the tie which kept my 2 skis parallel like two french fries, but this time there was no harness. Instead I held onto one end of the pole, while the other end was held by the instructor and we skied parallely. So there was even more independence as I zoomed down the Subway slope and rode up the Ski Lift. We practiced on the magic carpet too.  Mom was also skiing that day and we crossed each other several times.


There was a light snowfall that day. Snow is not condensed rain as some may think. Rather it forms in the clouds as water vapor condenses around dust particles and falls to the ground. It has its own hexagonal crystal lattice structure - all H2O molecules still.  I watched as the snowflakes fell like little cotton puffs on my sleeve as I rode up the ski lift. I could feel the sensation of the steel edges of the skis slicing through the layer of fresh powder snow on the ground as I skied down. It was beautiful. Nature was gracefully exiting winter with a gentle show of snowflakes.  This was the way to ski - in gentle snowfall!


I had started off being scared of skiing. Anxiety at start had instead turned to a promise of adventure. Thanks DSA for making it happen.  


That was last winter.


This winter I was back with eager anticipation in my eyes. My first lesson was on 12/28/13, then I came for back to back lessons on 1/11 and 1/12/14. For the first 2 lessons, I again had 2 instructors, but for the 3rd one, I was down to one instructor - John. I had no clips on my skis this winter either. One instructor and no clips or harness - that indicates progress. Yeah!  The subway slope was closed this winter for lack of snow, so we had to use the Meadows slope and lift, which is the next level. That slope is steeper so the instructors were more hands on with me.  We even practiced a tried a few turns, that is harder and will probably take more classes to improve. Pizza (wedges) and French Fries (parallel skis)!  In my last lesson with John, I did fall a few times and one time I went tumbling to the side when I was halfway down the Meadows slope. John was trying to make me lean forward and so was skiing backward in front of me and trying to make me do hi-fives so that I would reach out forward with my body while skiing. OMG, He must be really good at skiing, in order to be able to ski backwards. But I feel I am getting better. I look forward to my future classes.


I was actually late for my class on 1/11 with instructors Allie and Carolyn. The weather had turned south and it had started snowing while we were driving to Tahoe. Snow chains or snow tires were mandatory. Soon the snowfall became so thick that traffic crawled to a standstill on 80 West well before Truckee. There was either the need for snow removal or an accident up ahead. Cars were getting thickly coated with snow, the wipers could barely keep up. Dad was getting somewhat worried. Cars were making fresh tracks on the newly fallen snow, the road beneath was barely visible. Most of the traffic was headed for the ski areas. Californians not used to snow, were driving cautiously and very slowly. In the Bay Area, where I live, if it rains even a little bit, the traffic slows tremendously; we just are not used to bad weather.


The ski lesson that day was a first in terms of the weather for me. The sky was overcast with gloomy gray clouds. Snow fell constantly. But this was no gentle snowfall like the one  last March. A strong wind whipped the snow around and sent it forcefully to the ground. The wind rocked the Meadows ski lift as we rode up each time. Tops of green trees peeking out through the snow were bent sorrowfully with the wind. Snow was flying around. Gloom made the world around, including the snow, seem light gray. The gray was uniform from from ground to sky. The force of the  snowflakes stung my face as I tried to ski. Thermals were a default necessity for such a day. I had not needed them before. I also needed a clava to protect my face. Only my nose was visible between the helmet, goggles and clava. I felt like a masked bandit, totally camouflaged.   My gloves, though technically waterproof thinsulate, did get wet from the few falls and I had to get a new pair in between. Though it was wet, windy and cold, it was the winter ski experience. Skiers and snowboarders were falling constantly on the slope that day. Nature was flexing her wilder wings and you have to appreciate all aspects of her personality. My mind extrapolated briefly on what a white-out would be like,  and prayed I’m never actually in one; it is best experienced on TV or in a Jack London short story.  It must be a million times crazier than this.


The ski resort was packed, and crowds milled around the more advanced lifts. Skiers apparently love this weather. The crazier the snow, the better the ski experience apparently. The slopes were crowded as was the restaurant. I ate nachos after my lesson at the bar area. There were clusters of people gathered around the big screen TV. It was gametime - Saints vs SeaHawks. Bay Area was rooting for the Saints in a big way that day.   The Niners would have to face the winners. Drunk and boisterous fans at the bars yelled with disgust at the SeaHawks every move. A SeaHawks win would mean Niners playing them at Seattle. CenturyLink field holds the record for stadium decibel level, which gives them a clear home advantage. It was the first time I’ve seen so many drunk people in one place. It was a study of human behavior under the influence. There were spontaneous bursts of songs; both avid delight and disgust.


We had dinner take out from the China Express restaurant in North Lake Tahoe. We’d eaten there during a summer trip to Tahoe with cuz Arjun. The name of the inn we stayed in, had the word Spa in it, but it was far from a spa, the way its normally thought of. Instead the inn had hotel toiletries with the brand name “spa” in the bathrooms. Really!! Seriously!! Talk about misleading! The walls were so thin, we could hear the conversation next door well into the night. A hotel not to be repeated definitely.
  
The weather was delightful the next day (1/12/14); I was there for a morning class. The sun was out and it was refracting rainbows through snowdrops on the trees. How could I not plunge into visual stims. I kept stopping to pick up and feel the fresh powder snow. I was wearing gloves, but the way the snow fell in a twinkling shower from my hands was delightful to watch. Oh the trials of autism - it allows us to see and appreciate so many details yet is so  disruptive to our motor planning and our activities. Obviously I was going to fall if I tried to bend over to pick up snow, and I did indeed fall a few times. When I rode up the lift, the skis dangled awkwardly on my feet as usual, but when I moved them, the packed snow on them fell in a picturesque shower of powder. So I did it some more and enjoyed the show. The mountains loomed on either side. It was as though the word had been painted a soft white with patches of green and  brown peeking through. It was not cold like the previous day; even the snow goggles were hot, just sun glasses and the helmet were enough. The snow gleamed under the bright sunlight, yet the previous day’s snowfall had left a layer of powder that the skis sliced through while skiing. Nature was displaying yet another side to this appreciative fan. 


Images and Videos


01/12/14 Photos  Videos
01/11/14  Photos  Videos
12/28/13 Photos  Videos
03/31/13 Photos  
03/02/13 Photos  Videos