Showing posts with label Lifespan. Show all posts
Showing posts with label Lifespan. Show all posts

Transitions to Adulthood Panel - ASAN 2020 Gala


I learned a lot from the others on the Panel and from the audience comments.
Thank you. 
The Autistic Self Advocacy Network
, fellow panelists 
Jordyn Zimmerman
 and audience.
https://www.youtube.com/watch?v=2klBB1Tow4A&fbclid=IwAR2XIoXysvRB-Y-uux8JWzfvJjzUVGodcc2aIxvvgrl8Waj6jibOtOdkEv8 




ACI Experiences




 

Delays in Diagnosis

Delays in Diagnosis


Girls, BIPOC, lower SES
  • Delays in Dx → Impacts access to early intervention services (up to age 5)
  • Girls: Traditionally thought to affect only males.
  • BIPOC & lower SES - Access to Healthcare
  • Blacks - mis dx as “Conduct Disorder” instead of ASD
  • Access to state services only if dx before age 22
Dx Later in Life (upto even Geriatric years)
  • Later years - dx is a relief, an explanation of “not fitting in”, provides a sense of community.

Sri Ram School, Gurgaon

Presenting on Autism @SriRam School, Gurgaon with ~ 60 parents and educators. Double screens so I could see the audience on one screen from my end. 

Impact of Autism and Coping Strategies in Indian-American Families


Impact of Autism and Coping Strategies in Indian-American Families.
Hari Srinivasan

APA Poster


Abstract
This paper explores the impact of autism and coping strategies amongst  Indian-American families living in the San Francisco Bay Area. Descriptive information on the challenges faced, coping strategies and a stress score (as measured by the Cohen Perceived Stress Scale) was gathered from 18 Indian-American parents of individuals with autism. The study finds that  high levels of stress amongst the ASD families (sample mean of 19.2) compared to the non-ASD families (population mean of 13). The study found that the age of the ASD family member does not seem to influence stress levels. There is however  a direct correlation between the severity of challenging ASD symptoms and the level of stress.  

This study suggests that if causes are better understood about the underlying physiological conditions for each specific case of autism, rather than classifying autism into one broad bucket, it may lead to more targeted treatments and better support systems could be put in place as well.

Positive outcomes for ASD individuals lead to less stress for families. Families also need more comprehensive support and resources in planning and supporting the needs of their ASD family member. Less stress for families leads to better outcomes for the ASD individuals.


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


Unseen Faces in the South Asian Community

Journalism Assignment -  I had to do actual interviews and write an article based on the interviews. It was ... a new experience.. a bit of a challenge too, but it worked out in the end. It was a different kind of interview(s) - mostly over email and one of the respondents gave their responses over the phone. I was able to get a number of people and thereby different perspectives of the issue... A big thanks to all my interviewees. Overall it was a good experience.

Unseen Faces in the South Asian Community

Cultural isolation is not a new phenomenon amongst immigrant families but what if it is accompanied with the added stresses of managing a disability? This was the case with many families of South Asian origin here in the Bay Area. 

Rajni Madan, who lost a daughter to a childhood disability, noticed the bewilderment of such parents and decided to set up a support group that would engage families. That gave birth to “Jeena,” in 2000. Jeena in Hindi means life, and Rajni wanted families to have hope even as they coped with their sudden onset of challenges. It started with 7 families who reached out to each other, but the group has grown to over 500 families today. The disabilities range from the ever-growing Autism to Cerebral Palsy to chromosomal and metabolic disorders. 


Jeena’s role has evolved over the years and is driven by the needs of the participating families. Founder Rajni Madan made a conscious decision not to ask for state funding for Jeena’s activities to allow for flexibility in its evolving needs.  State funding entails a formal organizational structure and Jeena is entirely parent-run with the help of volunteers. Jeena relies on funding through donations (individuals and corporations) and through corporate grants that cover specific needs. According to Rajni Madan, the number of adults with disabilities is a small minority at Jeena, so most activities at the Milpitas center currently target the needs of the younger children.  There are activities such as playgroups, group outings, bowling, picnics, music and dance classes, which focus on the social and pragmatic needs. Recently Jeena won a grant from the Cupertino Chamber of Commerce for community outings to encourage social appropriateness and independent living skills for teens.

Jeena also has a small funding program for families who are monolingual and are struggling to find resources for their children, which is not available through generic sources like insurance companies or school districts. They also have small project in Mangalore India, where they have helped fund the multi-purpose building of a new adult residential facility.   

What types of challenges do these families face? I interviewed five Jeena families to find out. Some were parents of older children while others were parents of younger children. For Abhoyjit Bhown, father of a 19 year old, “The disability affects not just the individual but everyone in the family. There's often a constant demand of time and energy to ensure the disabled individual can function in various situations - at home, at school, in the community, etc.  This time and energy means that parents and caregivers often give up various aspects of their lives such as work, rest, social activities, and sometimes even sleep.  For other members of the family, they often give up their social activities, have fewer friendships, and often cannot engage in things that their peers normally do.”

The other primary focus is on educational and emotional support for the parents via workshops, trainings, and social interaction opportunities. These workshops focus on learning specific techniques such as safety issues or methodologies and therapies. Parents network via a yahoo group and an online forum which makes physical location a non-factor.

Other families too spoke of similar challenges. A small change in schedule could result in sensory overloads, emotional turmoil and melt-downs. Imbibing independence in their children was a big hurdle. Even attempting to explain their children’s (dis)abilities to other families and relatives can be taxing. It is a non-stop commitment of time and effort and this paradoxically leads to social isolation from other families who don’t face or understand such challenges. 

Ironically the social aspect, which is an important component in improving the quality of life for all involved, is often the first to suffer. All the while, the families are actively engaged in researching ways (be it educational, medical, therapeutic, social or functional needs) to help the affected individuals as there are no clear cut solutions. The needs of the individuals too change each year as they grew, and fresh challenges arose. 

For the parents of the younger kids with disabilities, support groups such as Jeena have provided tremendous emotional and informational support to help them cope and deal with the shock of dealing with the diagnosis. Radha Kannan, parent of a now 10 year old, says, “Jeena helped guide parents to the right type of resources since it is too confusing to navigate the maze and decide where go first.” For Ahmed Hasan, parent of a now 8 year old, Initially, the caring support from other Jeena parents was a huge emotional support; we felt that we were not alone.”

For parents of many of the older individuals, Jeena has provided wonderful social and emotional support and an environment accepting of their child’s challenges. However, for these parents, the added worry is the long term care and needs of their children – post-school, college, post-college, vocation, housing, finance, and emotional needs. For them, support groups provided help in some, but not all areas. They also felt that support from the community for the families lessened as the child grew.  It was important that a support system be in place all their lives, such that they lead meaningful lives. How this was to be achieved, is still unchartered territory. In the meantime, these families were glad to receive whatever support they could get. The role of support groups such as Jeena essentially need to keep evolving, a thought echoed by its founder, to support the needs of its older children, now starting to reach adulthood. 

Jeena may be a parent-run organization but often these parents are the same people who are over-stressed and over-stretched for time and resources themselves. Founder Rajni Madan feels that the biggest challenge Jeena faces is the ability for parents to participate on a regular basis. A lot of times, the community is there to support, but for whatever reasons, the family is not able to participate.Families too shared this frustration. Parents like Sumathy Narayanan, want to reach out and help or participate but often are limited by the demands of their own special family member.

A number of volunteers have come forth over the years to help Jeena and their support has been invaluable in various ways. I spoke to two such people, to get their perspectives -  Prabha Venkat and Sanjana Anand.  Prabha Venkat’s entire family, including her two sons, volunteer at Jeena.   She started by babysitting while parents attended workshops and helping organize events. Her initial aim was to help in any way, even if it be another listening ear. She started to tutor 2 of the kids and this led to her sons being involved, and they started the Jeena Music Band.  She is now an integral part of many of the activities at Jeena.  Sanjana Anand is a teacher at Pt. Habib Khan’s School of Hindustani Music and their organization has been teaching Indian Classical Music to a group of Jeena children for over 2 years now. Her love for teaching music initially brought her to Jeena. It turned into wanting to understand the children and how best to teach them in a way that would make a difference.  Such volunteers have essentially understood that rather than a disability, it should be regarded as, ‘different ability’.  They both acknowledge the importance and role of support groups like Jeena in the lives of the families, especially the emotional and information component.  Prabha Venkat also reiterated the need for immigrant families to think about the next steps - “What is the place for such individuals 20 years from now?

I asked all the interviewees if it was a question of awareness in the community and what could be done to raise awareness. For Suman Kumar, parent of a 16 year old, More parents of typical kids need to be part of Jeena to create positive interactions and create awareness.”  Rajni Madan felt that awareness was far more than it was 11 years ago, but it was also about understanding the abilities of a person.  Disability does not mean an inability to lead a normal and productive life. What was needed was a shift in how disabilities were perceived as was acceptance and tolerance on the part of the community at large.

Sanjana Anand felt that there was still a lot of stigma associated with disability in the South Asian community and hence the reluctance of the mainstream community to face issues that were different from their comfort zone – a kind of fear of the unknown. The unpredictability of the edges could be dissolved only through education.  When the mainstream audience sees Jeena Kids perform at their public concerts,  “It brings about a moment of pause, from their regular lives to understand the importance of organizations like Jeena.” For Prabha Venkat  awareness was a function of exposure. The information age was there to help. Heartstrings have to be tugged , an emotion has to be kindled…then comes maybe curiosity, then interest and before long you have an advocate, a fan and acceptance.”

The need for volunteers is ever-present and growing at support groups such as Jeena.  According to Rajni Madan, the bottleneck has often been matching the time availability of volunteers with the needs of families. Prabha Venkat illustrated this mismatch with an interesting analogy - it was easier to run for “a cause,” than to actually interact with the special needs population. Not that the former is not a worthy cause, but running as an activity is predictable while physical interaction is unpredictable. For most, the unfamiliar territory is difficult to venture into. Her advice to all my fellow typical teens is to get involved and become part of this society because you all have a lot to give even as you learn in return.   

(Information about the support group and how to volunteer is available at their website www.jeena.org)