As I push back in my favorite armchair and read, I begin to hear the words rustling across the page in full surround sound:
‘Why does this written doe bound through these written woods? For a drink of written water from a spring whose surface will xerox her soft muzzle? Why does she lift her head; does she hear something? Perched on four slim legs borrowed from the truth, she pricks up her ears beneath my fingertips. Silence – this word also rustles across the page and parts the boughs that have sprouted from the word “woods.”’
Lying in wait, set to pounce on the blank page, are letters up to no good, clutches of clauses so subordinate they’ll never let her get away.’
So begins “The Joy of Writing”, a beautiful, evocative, lyrical poem by the Polish poet and essayist Wisława Szymborska who was awarded the Nobel Prize in literature in 1996.
Reading has always given me delight and joy. Other than the numerous technical reports, journal articles and proposals I wrote during my 40-year engineering career, however, writing has come to me only in the past five years. I find myself increasingly drawn to it for the pleasure, comfort, and joy it brings. Do others also find joy in writing? I wondered. Szymborska’s poem is to me proof positive that many indeed do.
Writing does much more for us than bring pleasure. An abundance of research supports the notion that it’s a very effective learning tool, helping students grasp, organize, and integrate prior knowledge with new concepts. It encourages active thinking and permits an exploration of ideas. Well before I began my engineering career – when I was a student in high school – I realized that I had not understood something well unless I could write clearly about it. To this day, writing helps me think.
Writing is also an instrument of power; one of the best weapons available to anyone seeking to further a cause. Who hasn’t heard the 19th-century adage ‘The pen is mightier than the sword?’ History is replete with examples. Books can move nations. From Kabir Das to Rabindranath Tagore, from Shakespeare to R.K. Narayan, authors have left indelible imprints on our hearts and minds. Their words lay in wait to pounce on us, as Szymborska says, and once we’re in their grasp, they never let us get away.
I’m writing this article to suggest that you, dear reader, can exercise a different kind of power through writing if you choose – by wielding it as an instrument to heal yourself. Writing can be therapeutic. Research by Dr. James Pennebaker and his colleagues at the University of Austin shows that writing about important personal experiences in an emotional way for as little as 15 minutes over the course of three days brings about improvements in mental and physical health. Their paper in the Journal of Clinical Psychology shows how “this finding has been replicated across age, gender, culture, social class, and personality type.”
In her article “Writing is Therapy,” Kate Hurley describes other research that suggests writing can improve physical wellbeing by boosting immune functioning as well as mood in patients with HIV/AIDS, asthma, and arthritis. She cites research that shows biopsy wounds heal more quickly in patients who keep a journal. The concept is simple, explains Leona Brits: just write whatever goes in your mind, with no filters or judgments. “Don’t think if it’s wrong or right, if it’s nice or rude, or if you should be ashamed. Don’t use your mind, write from your heart!”
The use of writing to ease grief and loss is a well-known and popular tool. Books, how-to guides, and workshops abound. Harvard University’s Health Beat suggests just letting go and recording your thoughts and feelings, beginning with writing for 15 to 30 minutes a day for three to four days. They describe research that such writing has stronger effects over longer periods of time in helping individuals cope with grief.
Researchers have also identified the great social, psychological, and physical health benefits that come from giving thanks, especially in these troubled times, by keeping a gratitude journal; a practice as simple as writing one sentence each about five things you’ve experienced in the past week for which you feel grateful. These benefits “include better sleep, fewer symptoms of illness, and more happiness among adults and kids alike.”
Writing can be for everyone. You can write for yourself – to understand yourself better; to clear your mind or get something off your chest. Write to share your stories with friends or leave a legacy for your children or grandchildren. You can write for a multitude of reasons. You don’t have to write the next bestseller or elegant argument or cutting opinion piece in a national newspaper. Some of my friends tell me that they can’t write, that they are afraid and unwilling to give it a try. My response to them is: if you can tell a story, you can write. If you can remember something from your past, you can write.
Pick up that pen or sit down at that keyboard. Don’t worry about your grammar, punctuation, spelling, or style.
Just write! It’s good for you!
Mukund Acharya is a co-founder ofSukham,an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South Asian community.
Sukham Blog – This is a monthly columnfocused on health and wellbeing.
A group of Bay Area musicians and dancers have come together to spread joy during these challenging times with a Bollywood inspired version of “The Other Side” from the Trolls World Tour. The video features 27 dancers bringing various forms of dance to the feel-good song originally performed by Justin Timberlake and SZA.
Corte-Madera based dancer and choreographer Enakshi Vyas saw her dance life evolve as shelter-in-place started taking shape in March. “Our entire industry changed overnight. We were in a situation where what we needed the most – exercise, art, community – could not exist like they did before. But we had to find a way to keep the community together,” said Vyas. She quickly embraced technology and shifted everything online, hosting dance classes and rehearsals over video chat, and instantly found herself re-energized.
When it came time to consider making her next video, she turned to San-Francisco based Bollywood composer Vivek Agrawal with an idea: what if we choreographed a dance video to a feel-good song where everyone could record from their own homes?
Agrawal, intrigued by the thought, remembered that the new Trolls movie had a track that felt appropriate for the times called “The Other Side.” On why this song in particular, he said, “It is one of those songs that make you smile the first time you hear it. It reminds us that even when we may think things are tough for us, there’s always something to appreciate about the world. For us, even though we can’t be physically together, we can still create beautiful art together, even from our own homes.”
Agrawal recruited Aarti B to lend her vocals to the song. They recorded the entire cover over Zoom, and Vyas recruited dancers throughout the Bay Area and taught them the dance over a series of online tutorials. In less than a week, they had a video ready.
After piecing together video recordings from dancers of all different styles, the group released “The Other Side” on Instagram and Youtube on Friday, May 8th. “I never would have imagined that this cover song project, that we recorded over Zoom, would turn into a 27-dancer, donation-raising extravaganza! What a special moment for us all. I’m so proud to have my voice on this project.” said Aarti B after seeing the reactions on social media.
In addition to encouraging everyone to enjoy the video, the group is inviting viewers to make a donation to AACI (Asian Americans for Community Involvement) to help support essential workers providing behavioral counseling.
Founded in 1973, AACI is one of the largest community-based organizations advocating for and serving the marginalized and vulnerable ethnic communities in Santa Clara County. Our mission is to strengthen the hope and resilience of our community members by improving their health, mental health and well-being.
AACI remains open during the shelter in place order, to care for the vulnerable, low-income, and limited English speaking families who need help. We provide culturally appropriate behavioral health counseling to individuals and families of all ages and backgrounds which is more important than ever during this stressful and uncertain time. Your gift to AACI during Mental Health Awareness month will make a huge difference in the lives of families who are struggling with anxiety and depression.
Enakshi Vyas, a Marin county native, has trained and taught throughout the Bay Area in a variety of styles including but not limited to Jazz, Tap, Kathak, Bharata Natyam, West African Dance, Ballet, Contemporary, Hip Hop, Indian Folk styles, and Bollywood dance. As the director of Elite Naach Academy, Enakshi instructs a variety of stylistic backgrounds and cultures, providing her students with a more complex and diverse dance curriculum. She strives to create a safe space for dancers to explore their versatility, ignite their passion, and find their story.
Vivek is a composer based in San Francisco who previously worked with A.R. Rahman, just left his tech job to pursue music full-time, and is working on his debut album of original Hindi songs. He recently left the tech space to focus completely on music, and is currently working on two projects. One is an album of American pop covers with a Bollywood flare. The other is an original Hindi album of songs that he has written over the past two years.
Aarti is an SF-based professional singer, born and raised in the Bay Area. More recently, Aarti was asked to come to NYC to audition for Mira Nair’s Monsoon Wedding, the Broadway musical. She also was the lead singer in the house band for SF’s high-end Indian restaurant, Rooh. Aarti is currently working to record her first-ever original music and release new music this year.
Last month, after California Gov. Gavin Newsom ordered most of the state’s residents to stay home, I found myself under virtual house arrest with an uncomfortably large number of Gen Zers.
Somehow I had accumulated four of my children’s friends over the preceding months. I suppose some parents more hard-nosed than I would have sent them packing, but I didn’t have the heart — especially in the case of my daughter’s college roommate, who couldn’t get back to her family in Vietnam.
So, I had to convince six bored and frustrated 18- to 21-year-olds that, yes, they too could catch the coronavirus ― that they needed to stop meeting their friends, wipe down everything they brought into the house and wash their hands more frequently than they had ever imagined.
The first two weeks were nerve-wracking. I cringed every time I heard the front door open or close, and when any of the kids returned home, I grilled them remorselessly.
The day after a house meeting in which I laid down the law, I found my son, Oliver, 21, inside his cramped music studio in the back of the house with a kid I’d never seen before. And that night, I saw one of our extra-familial housemates in a car parked out front, sharing a mind-altering substance with a young man who used to visit in the pre-pandemic era.
If I’ve been neurotically vigilant, it’s because the stakes are high: I’ve got asthma and Oliver has rheumatoid arthritis, making us potentially more vulnerable to the ravages of the virus.
But even as I play the role of enforcer, I recognize that these kids are as anxious and worried as I am.
My daughter, Caroline, 18, is filled with sadness and despair, feelings she had largely overcome after going away to college last fall. She recently started doing telephone sessions with her old therapist. Oliver has begun therapy — remotely, for now ― after dismissing it as pointless for the past several years.
A study released this month by Mental Health America, an advocacy and direct service organization in Alexandria, Virginia, shows that people under age 25 are the most severely affected by a rise in anxiety and depression linked to social isolation and the fear of contracting COVID-19.
That is not surprising, even though the virus has proved far deadlier for seniors. Mental health problems were already rising sharply among teens and young adults before the pandemic. Now their futures are on hold, they can’t be with their friends, their college campuses are shuttered, their jobs are evaporating — and a scary virus makes some wonder if they even want those jobs.
Paul Gionfriddo, Mental Health America’s CEO, says parents should be attentive even to subtle changes in their kids’ behavior or routine. “Understand that the first symptoms are not usually external ones,” Gionfriddo says. “Maybe their sleep patterns change, or they’re eating less, or maybe they are distracted.”
If your teens or young adults are in distress, they can screen themselves for anxiety or depression by visiting www.mhascreening.org. They will get a customized result along with resources that include reading material, videos and referrals to treatment or online communities.
The Child Mind Institute (www.childmind.org or 212-308-3118) offers a range of resources, including counseling sessions by phone. If your young person needs emotional support, or just to vent to an empathetic peer, they can call a “warmline.” For a list of numbers by state, check www.warmline.org.
Caroline’s case is probably typical of college kids. She moved back home from San Francisco last month after her university urged students to leave the dorms. Her stuff is stranded up there, and we have no idea when we’ll be able to reclaim it. Meanwhile, she has been planning to share an off-campus apartment starting in August with four of her friends from the dorm. We can get attractive terms if we sign the lease by April 30 ― but what if school doesn’t reopen in the fall?
For Oliver, who’s been living with me all along, the big challenges are a lack of autonomy, a need for money and cabin fever. Those stressors got the best of him recently, and he started doing sorties for a food delivery service. Of course, it makes me crazy with worry every time he goes out, and when he returns home I’m in his face: “Did you wear a mask and gloves? Did you keep your distance? Wash your hands!”
But what can I do, short of chaining him to the water heater? And if going out — and getting some cash in his pocket ― makes him feel better, that can’t be all bad (unless he catches the virus).
If your kid dares to work outside the house, and you dare let him, several industries are hiring — particularly grocery stores, pharmacies and home delivery and food services. Child care for parents who have to work is also in demand, so your fearless teen might want to ask around the neighborhood.
Volunteering ― again, if they dare — is another good way for young people to feel independent and useful. In every community, there are vulnerable seniors who need somebody to shop for them or deliver meals to their homes. You can use www.nextdoor.com, a local networking app, to find out if any neighbors need help.
Food banks are in great need of volunteers right now. To find a food bank near you, go to www.feedingamerica.org. Blood donations are also needed. Older teens and young adults can arrange to donate by contacting the American Red Cross (www.redcross.org). For a list of creative ways to help, check out Youth Service America (www.ysa.org).
While the kids are inside the house, which in my case is still most of the time, put them to work. “Anxiety loves idle time, and when we don’t have a lot to do, our brain starts thinking the worst thoughts,” says Yesenia Marroquin, a psychologist at Children’s Hospital of Philadelphia.
I’ve harnessed the able bodies of my young charges for household chores. A few weekends ago, I decreed a spring cleaning. They organized themselves with surprising alacrity to weed the backyard, sweep and mop the floors, clean the stove and haul out volumes of trash.
Considering the circumstances, the house is looking pretty darn good these days.
Dr. Madhu Bhatia, a psychiatrist in Washington D.C., finished setting up her home office a few days ago, two weeks after the Metro area began to sit up and take notice of COVID 19.
“I’ve already seen an uptick in anxiety among my patients,” she says, “and now, more than ever, I need to stay in touch. I’m expecting an increase in cases, and more Post Traumatic Stress Disorder (PTSD) type symptoms.”
“This is the first time I’m practicing telepsychiatry on this scale,” she adds wryly. “It’s going to be a new experience for me and many of my colleagues – but it may be the future, for a long time.”
The suddenness and speed of COVID19’s onslaught has sent our health care and our social systems into shock. Equally important, (but in danger of being underplayed as all our attention focuses on the battle with the virus), it has been a massive, invisible shock to our collective psyche.
As we live this in real time, health professionals all over the world are getting more concerned about the long-term emotional fallout from the pandemic. The complete cessation of normal activity in lockdown, a constant ticker tape of rising numbers of those infected and dying on TV, and economic insecurity associated with the shutdown is the perfect formula for creating a sense of suppressed panic and helplessness, which, in turn, is a perfect breeding ground for anxiety disorders and depression.
We can look to China, which was ahead of the curve, for the trajectory of anxiety and anxiety related disorders. Early studies on the effect of the pandemic indicate an enormous, lingering impact on mental health. In the first few weeks of the lock down in China, there was mostly worry about contracting the virus and the safety of loved ones. As more time passed in quarantine, financial strain and more stress with family relations piled onto the general worry for safety.
In an ITV report, Dr. Peng Kaiping, the head of Psychology at Tsinghua University in Hubei province (where the epicenter, Wuhan is located), says they are now increasingly seeing symptoms of PTSD among the population.
“It’s important to remember,” says Dr. Bhatia, “that even something as innocuous as more enforced time at home with the family can become a source of great anxiety, if it isn’t handled correctly. There can be something like too much togetherness. Time has to be managed carefully, especially in families which already have underlying stresses in relationships.”
She advises setting up strict daily routines, especially if there are children at home.
“Children need the security a routine provides. However, they also need social interaction with their peers and a sudden cessation of contact with friends creates anxiety. If they are young, set up facetime playdates for them.”
“For teenagers, try to give each individual enough time on their own and permission to retreat into their own space if they want to, but designate a family time where you come together, especially for meals. Make that a pandemic free space, where things like homework or activities are discussed and optimism about the future is restored.”
“South Asian families are often not very good at expressing their feelings, and there is a sense of shame, specifically in the older generation, in admitting that they are fearful. This is a time when parents should reassure their children (and sometimes their own parents), that it’s important to talk frankly about one’s fears and be supportive of each other.”
Therapists and providers are increasingly adapting their practices to technology to get their message out.
Pallavi Surana, a resident of Herndon, Virginia, and a meditation therapist, has guided a group meditation session every Friday for the past 10 years.
With Virginia’s COVID restrictions, she has now taken it to Facetime (the group dials in from home and meditates together) and increased its frequency to an hour every day.
“Daily Meditation is more important than ever during this crisis,” she says. “We are locked in at home, with our fight or flight responses highly aroused. Calming our minds has an enormous impact on our immune systems, and doing it collectively is even more beneficial. Even a short 20-minute session has an impact.”
Alice Walton in a recent Forbes article suggested important ways to preserve sanity and maintain optimism during these trying times.
Gratitude is a therapeutic emotion. Take time to be grateful for family and friends, and for all the things which are working for you in life. In a Harvard health study, it was found that writing down even 5 things you were grateful for, just once a week, had an enormous positive effect on emotional well-being.
Exercise and meditate daily. Treat these activities as necessary, medicinal doses of stress relief and give them priority. There are several online sites offering free exercise routines and meditation. Mindfulness based stress reduction (MBSR), developed by Jon Kabat Zinnat at UMass, has been shown, through many studies, to be very effective. Several organizations now offer this online. Meditation is a proven stress buster and is especially good for our immune systems.
If you aren’t into meditation, studies have shown that just calming your breathing – taking a few minutes a day to sit quietly and breathe deeply – can greatly reduce daily stress. Simple breathing exercises, like those taught in Yoga, (check out these top rated apps), are also great at soothing the mind and producing a sense of well-being.
Your daily exercise routine should be supplemented by “quality time” outdoors. The Japanese concept of “forest bathing,” which means spending as much time in nature as possible and mentally “bathing” in its beauty, is now backed by science. Being around greenery doesn’t just calm the mind – it has a proven effect on our immune system and lowers the levels of the stress hormone, cortisol. Consider positioning your home office where you have a view of the greenery outside.
And last, but not the least, connect to friends and family daily through whatever means available. Social isolation is like a punishment for our species, because we are wired with a strong need to interact. A recent article in the Washington Post by social scientist, Arthur C. Brooks, emphasizes the importance of social interactions which allow eye contact. Looking directly into a person’s eyes while talking releases oxytocin, the pleasure hormone, and is the most beneficial for our social needs. So, choose a medium like Skype or Zoom or Face Time where you can see your friend or family.
Stay safe, dear reader, and remember to hug your family often! Human touch is a proven therapy for anxiety.
Jyoti Minocha is an DC-based educator and writer who holds a Masters in Creative Writing from Johns Hopkins, and is working on a novel about the Partition.
Edited by Meera Kymal, contributing editor at India Currents.
“I’m sorry to inform you your child’s psychological age is at 9 months … ,” Laxmi and Narendran were numbed by these words even as the child psychologist talked on about expressive vs. receptive verbal skills and cognitive abilities; or in their son’s case, disabilities. As their mind tried to grapple with the words, Ravi, their almost 4-year-old, held up his toy car and rotated its wheels, over and over again. Drowning in a feeling of doom and darkness, Laxmi heard herself ask “What can we do to … to …” She remembers that she did not even know how to complete the sentence. All she could hear is the roar of sheer terror for her child and for their family; the pain of dreams aborted and a feeling of wretchedness setting in.
Thus begins the official journey of every family whose child gets diagnosed as being “autistic” at 18 months, two, three, or even five years. Autism is a neurological disorder that sets in within the first three years of life and impacts normal brain development in the areas of social interaction and communication skills.
Autism is approaching the numbers of an epidemic. The figures are staggering—in the 1960s, four in 10,000 children had autism. Today, according to Autism Speaks, an organization dedicated to facilitating global research into the causes, treatments and an eventual cure for autism, one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. U.S. government statistics suggest the prevalence rate of autism is increasing 10-17% annually. The website, Talk About Curing Autism (TACA) states that eight new cases are reported each day in California alone.
And autism is by no means an “American thing,” as disbelieving desi grandparents of autistic children will claim. The Autism Speaks website states that about 1.7 million individuals are autistic in India. A CNN article in early 2008 reported that autism is affecting one in 58 individuals in England and Ireland.
So, what is going on? Is it just the modern over-emphasis on labeling? The causes of autism are still hotly debated among scientific and familial circles. What has been proven is that there is no commonality of cause among the children affected (it is not necessarily genetic), though there are many theories—some reports claim environmental pollution such as chemical dumping into the water table as a factor. Some parents believe that indiscriminate use of vaccines is to blame. “Shilpa was a vivacious child, babbling and making gestures all the time. A week after her 12-month shot, she was a withdrawn child. She regressed completely after that—now, she cannot even say bye bye,” grieves mother Sneha, a part-time accountant in East Bay Area. (Studies refute the vaccine theory.) Some say it is a harbinger of societal evolution; joint families disintegrating to nuclear families to eventually self-sufficient individual worlds where human “social” contact is made via machines (computers). Yet another theory is that some unpredictable connections remain incomplete within the child’s brain in the early developmental years, which could explain why the symptoms span a wide range, the official diagnosis being “Autism Spectrum Disorder.”
The neurobiological incompleteness does however manifest in some classical symptoms, and tests are based on there being consistent evidence of a few. For example, showing no cognizance of one’s own name and not seeking human contact are two symptoms mandatory for a diagnosis.
Autistic means “into one’s own self.” Autistic individuals are not just introverted; they seem to exist in a world of their own. They usually do not respond to hugs; typically do not coo back to baby-talk, and rarely show emotions. Some children indulge in repeated head banging or spinning—walking in circles—continuously. Some will wander off on their own. Most have issues with food—some eat indiscriminately, even dirt; others will eat only pureed food, even at four years. “Krish would stay silent for eight hours straight at his daycare. At first we thought he was just an extremely shy child, but he never imitated actions, repeated new words, or played with other kids. He would stare at nothing for an hour at times … I had been a mother for two years, and I had never heard him say Mamma,” recalls Priti, a mother in Cupertino. Krish was eventually diagnosed as being autistic, his expressive language skills leveled at seven months.
What can be done? Interestingly, in the case of autism, a lot can be done and has been done. Autism cannot be cured, but in a significant number of cases, if diagnosed in the first three years of life, a number of therapies can be put in place to eventually get the child to be a fully functioning, participative member of society.
The remarkable thing about autism and the age of science we live in is that the neurobiological incompleteness can be completed. An autistic child that does not realize that he needs to take his finger away from the scalding surface can be taught to do so. While he may still prefer being by himself, he can be made to feel some joy in being with others a part of the time. He can be taught to not wander away, to explain in advance that he does not like songs instead of screaming; can be taught that when it’s cold outside, he needs to wear a jacket.
Given the right therapies in the right amounts, a significant number of children with these special needs can mainstream—meaning leading independent, productive lives as a part of society. Early intervention support has been put in place by state governments, where an evaluation and ensuing therapy is free up to three years of age. The public school system takes financial responsibility of the child’s education thereafter, via IEPs (Individualized Educational Plans).
However, given the rise in autism and the downturn impacting government funding negatively, parents are facing increased resistance to their requests for better facilities in special classrooms and curriculum that keeps pace with the child’s progress.
To exacerbate the situation, the quality-of-life needs of a child are not taken into account by the school; just the educational needs. A child may be taught the alphabet, but not how to respond to “How are you doing today?” Generally speaking, a classroom or interaction with a stranger/ peer overloads the senses of an autistic child, resulting in “behavior issues”—examples being tuning off, spinning, screaming, or repeated head-banging. Parents of children with special needs have to pay out-of-pocket for empowering their child with strategies to cope. These therapies can be categorized as speech, occupational, behavioral and physiological.
At the forefront of not just sponsoring these therapies but also imparting them, are the special parents of these special kids. “It took us a year to get Suraj to say ‘banana.’ I would get him, through tears and tantrums, to try to say the word first, before actually giving it to him. It broke my heart everyday, he loves to eat them so much, but I had to stay firm,” says Shailaja, an ex-marketing professional. Shailaja’s mode of parenting is typical of autistic therapies, which coax the people around an autistic child into a pattern of intensive modeling and tough love.
Another example of parents unlearning their intuitive persona to don the special-parent avatar is in the occupational area. Swati Shah, founder of Ascend Rehab, an occupational therapy clinic based in San Ramon says, “Most of the kids who come to me have issues with what is called sensory integration—a hyper or hypo-sensitivity to textures, sounds and motion; and poor hand-eye and limb coordination.” Some children are easily and uncontrollably excitable, so parents learn to ask them to use “quiet hands and voice” and get them to wear weighted jackets—literally, jackets with weights in them—to calm them down, like when a heavy blanket is recommended for a baby to help her sleep better.
Applied Behavioral Analysis (ABA) therapy has been the bulwark therapy for most families. Children with autism display a spectrum of behavioral challenges, and ABA works on customizing the program for each child. One child may need help in making eye contact; another might need help in playing with peers.
Kevin Dotts, founder of I Can Too, a leading provider of ABA therapy in California shares, “Every autistic child is unique, just like typically developing kids. Having the same diagnostic label does not make them homogenous.”
ABA therapists typically work in teams of 2-6 with a child on a daily basis and usually meet monthly with the parents to assess progress and re-strategize as needed, the credo being, “If a child cannot learn in the way we teach, we must teach in a way the child can learn.”
A typical program consists of repeated instruction, modeling and rewards for each child, along with a huge dose of love and patience. “I have seen several kids gradually gain confidence, learn to coordinate their behavior and bodies, and come into their own.” says Kavita Singal, an ABA therapist in San Jose.
Some parents prefer literally getting under the skin with autism. Tripti, mother of Shekhar—a five-year-old who was diagnosed with autism at two, found that following a wheat- and casein(milk protein)-free diet helped her son to be calmer. The reasoning gaining increasing acceptance among parents is that some autistic children cannot absorb certain foods well, leading to a kind of toxicity in their bodies which in turn affects the neurobiology— “you are what you eat.” Homeopathy and Ayurveda are also being adopted by parents to improve quality of life for their kids.
All of these additional therapies are typically imparted 15-25 hours a week, and it can take anywhere from two to 15 years for the modeled behavior to be fully ingrained as intuitive behavior.
An added challenge with autism is that even ingrained behaviors can be forgotten, so consistent, long-term therapy is a must. The financial burden on families ranges $2,000-$5,000 a month. One parent often has to give up his or her job in order to tend to the child, adding to the financial strain.
Considering that autism is a medical condition, one would think insurance companies would cover the costs. Not so in California which, unlike some other states, does not mandate coverage for autism therapies. Most insurance companies deny coverage, ironically, on account of the therapies not being “medically necessary;” meaning that no medicines are required, so they cannot be held responsible. Most families are forced to engage in a battle of paperwork and lawsuits to get coverage. A common tactic adopted by the insurance companies is to delay start of coverage for several months, and then capping the costs or forcing several re-evaluations frequently. Sadly, coping with a special child, therapies, and third parties involved is a full-time job, and that’s excluding the emotional drain.
This is a battle fought by parents haunted by the fear that their child will either abandon society or worse, be shunned by society. “Even with the therapies in place, I’m haunted by the possibility that the worst might not be behind us,” says Meera, afraid that Akash, her five-year-old, will never learn how to be with others. It is inevitable that autism will touch all our lives; if a child we know isn’t already affected, one in our neighborhood definitely is, given the figures.
As a society, we must learn to recognize and assist the Meeras of our world. If it takes a village to raise a child, it takes an accepting society to raise a child with autism.
(Names changed to protect privacy.)
Priya is actively involved in special education issues and autism therapies.
Early Warning Signs of Autism
• Does not coo or smile by six months old
• Has trouble sitting, standing up, or reaching for objects by age one
• Does not say simple words like “mama” or “dada” by age one
• Does not turn his or her head to follow sounds or voices
• Does not react to loud noises
• Repeats certain behaviors, including some that are harmful, like banging his or her head
• Makes little or no eye contact and wants to be alone
• Does not play games like peek-a-boo or “pretend”
• Any loss of speech or social skills
Source: First 5 of California
Autism Etiquette: What to do if you meet a family with an autistic child
• Never ignore or pretend the child doesn’t exist. This makes the child and family very uncomfortable. Acknowledge the elephant in the room.
• If you can start with a look straight in the eye and a smile on your face, you would have already built a big bridge to reach out to a child who could really use a friend. This communicates: I care and you are OK just the way you are.
• If you see a child having a difficult time, don’t assume the parent is negligent and throw disapproving looks. My child is acutely sensitive to the piercing glances of strangers even when he is in the middle of a meltdown. Ask if you can help. If you are told to stay away or your advances for help are refused, just smile at the child/mom/dad/care giver encouragingly and leave.
• Inappropriate behavior may manifest itself in different ways—a child maybe playing oddly, maybe grab food that you’re eating, he may be repeating meaningless phrases over and over again. Use common sense, be accepting, smile, be non-judgmental. The less self-conscious the child feels, the more likely the situation is to resolve itself.
• Don’t talk down to a special needs child under the assumption that just because he is behaving like a two-year-old, he thinks like one too. Autism is primarily a communication disorder and you will be surprised how bright, creative and thoughtful these children are. Communicate at an age appropriate level even if you don’t receive feedback to validate it.
• Just accept them for who they are and love them no matter how they behave. You may be surprised to know that the seemingly low functioning child who may appear non-verbal or non-responsive will understand that and relax around you.
What about your kids/teenagers who may encounter this strange behavior? Your children take their cues from you. If you take things in stride, don’t overreact, treat people with respect in spite of their differences, then so will they.–Nandini Minocha
Developmental Disabilities in the Media
The media plays a vital role in social awareness and acceptance of disabilities. In recent years, autism and other disabilities have emerged from the shadows and become part of the mainstream media dialogue. Soap operas and news features have done their part in including special children in our everyday lives. Some Bollywood examples are the recent Shahrukh Khan movie, My Name is Khan, and the older Taare Zameen Par, Paa, Sadma, and Eeshwar.
Hollywood examples include the recent Dear John, and the old Mercury Rising and Rain Man. In 2008, the trials and triumphs of a real-life autistic child were depicted on the NBC soap opera Days of Our Lives. USA Network’s popular soap Monk had an obsessive-compulsive detective solving crimes, and the medical drama House had an episode based on the illness of an autistic child. The forensic anthropologist Temperance Brennan in FOX channel’s Bones is widely regarded as having Asperger’s Syndrome. The popular sitcom The Big Bang Theory also has a central character with Asperger’s.
More recently, NBC’s new hour-long drama Parenthood features Max, a child with Asperger’s Syndrome. The animated show Arthur on PBS introduced a new character in April, also having autism.
Zee TV has been airing Aap Ki Antara, about a special child who is unable to bond with her family and does not have any friends. The pilot episode dealt with how she is bullied by her classmates. The series follows her through her developmental years, each episode delving into the immediate and adjusted reaction others have to her; and how she deals with every situation life throws her way.
The production team for the series did extensive research on autism, spoke with hundreds of special parents in India, and networked with professionals in the field; the information has been built into a website—http://www.beingantara.com
Jeena—Supporting Parents
Amidst all the drama of daily intervention, special education, and insurance battles, the parents of autistic children grow increasingly isolated. One organization in the SF Bay Area lights the path for Indian families with special needs children—Jeena, “Hope for Kids,” http:// www.jeena.org
Jeena is a non-profit organization to support special families with origins in the Indian sub-continent. Member-families have children with a diagnosis of Autism Spectrum Disorder, Cerebral Palsy, ADD/ADHD, and Aspergers Syndrome, among others.
“It can be overwhelming for parents to distinguish between their own needs, the needs of their child, and their family. It gets further complicated as it is difficult to understand the complexity of the system(s) serving children with developmental disabilities,” says Rajni Madan, founder of Jeena. “Jeena’s intent is to focus on the family and empower parents to provide informational and emotional support to one another. The goal is to organize activities that will be beneficial to the special child. We celebrate life and recognize the potential of a child irrespective of the disabilities.”
The celebration of life is evident at the annual show “Jeena Yahan,” where most of the stars on stage are the children. Fun events include quarterly birthday parties, periodic “Mothers’s Night Out” dinners, picnics, and camping trips. Jeena routinely hosts discounted-fee lectures by specialists in the field of special education law, and emergent and established therapies. In addition, Jeena part-sponsors therapists in several fields to hold weekly sessions for special children. Recently, for example, a speech and language therapist conducted speech therapy every other Sunday for 12 weeks for all member children.
“Every family at Jeena understands my life. It is no longer possible for us to sustain friendships with parents who don’t have special needs; but for Jeena, we would’ve had a very lonely life,” says Tara, whose son was diagnosed with autism at three.
Pallavi Surana, a resident of Herndon, Virginia, and a meditation therapist, has guided a group meditation session every Friday for the past 10 years.
