TOI: Rising to the CHALLENGE: January 16, 2011

Shah isnt complaining,but it isnt easy for mothers to give up careers and lifestyles to teach their children how to say hello or use a toothbrush.Bangalores M R Geetha did not quit her job as an auditor,despite having to look after her spastic son Sumanth.She would take him along to office,where she made him sleep,eat and spend time under her supervision.Since Sumanth couldnt walk,Geetha had to carry him along,sometimes even with his heavy artifical limbs on.

In most households with a disabled child,the mother is the primary caregiver and anchor.Most times,the diagnosis that the child is disabled hits her the hardest.Manisha Chandgothia,the mother of nine-year-old Shivang,was shattered when the doctor told her about his autism.For a few days,I was completely at a loss, she says.Then I gathered myself together and started reading up about autism.It helped,and I realised early on that I would have to help my child tide over this.

A mother also needs to perform the delicate balancing act between her normal and special children.Its natural for a mother to be drawn toward the weaker child,but try explaining that to the others, says Singh,whose youngest son has often told her that she loves his brother more.

Marriages can sour under the strain,too.A single mom confessed that her husband blamed her for their daughters muscular dystrophy.He said I had landed him with a liability for life.We split when my daughter was four,my husband is now married again and has a healthy child.

If it isnt the blame game,it is the burden of care.My wife would care for our son every minute of the day,even sleeping in his room for the first nine years.She blamed herself for his cerebral palsy and was so obsessed with caring for him,she didnt let anyone else help.I would hardly ever see her, says a husband who sought relationship counselling to save his marriage.Finally,his wife saw sense and hired a care-giver to share responsibility.The couple now goes out for the occasional dinner date too.

Stress (emotional,physical and social),anxiety,depression,self-blame and blaming the partner are not unusual,say experts.Parents of children with a developmental disability often experience grief at the loss of the perfect child, says Dr Shamsah Sonawalla,consultant psychiatrist at Jaslok Hospital.To be able to handle stress,she suggests parents of special children take up a hobby and regularly spend quality time with their partner.You need to live your life too as you bring up the child.

At the end of the day,there is the joy of little things to make everything worth it a crooked smile,an ability to make eye contact,a bear hug,a misplaced kiss,a limp handshake.While most parents are competitive and pushy,parents of kids with disabilities realise very early on that the marker of success or failure isnt the kid next door or an imaginary set of targets,but a childs own personal progress.

In a society driven by the pursuit of the perfect,flaws are almost as bad as that other F word failure.Most parents whom TOI-Crest spoke to for this story admit that the world is a hard place that functions in a Darwinian manner and that few have time,beyond tokenisms,for those slower or weaker than them.Friends enquire about Shivang,but I can see it is more out of sympathy than genuine concern, says Chandgothia.People stare at him at social gatherings and ask me questions.I dont hesitate to tick them off when they get too inquisitive. Initially,the Janis ignored the insensitive comments and unashamed stares until they decided to take it no more.Once when we were having icecream,a child and his parents began staring at Anmol, says Harsha.Eventually,I went up to the family and gave them a major dressing down.

Thankfully,says Mitra Banerjee,the mother of 37-year-old Abhishek,whose mental age is closer to 9,the children themselves dont understand that they are different from the others.But as parents,we sometimes become handicapped because of the strange way in which others behave with them.They dont need sympathy,just love.

Children respond instinctively to those who treat them with love.Its telling that young Ayushi,who takes special education classes in an IB school in Surat,wants to grow up to be a doctor.I think it is because she meets doctors most of the time and they behave nicely with her, her mother guesses.Families learn to surround their child with people who are compassionate.Kaushik Roy says that he and his wife recalibrated their circle of friends,drawing concentric circles from inside out,we placed all those who were closer to Orko at the centre. Some relatives became acquaintances while some friends became relatives,Roy says.Every family recounts stories of the goodness of strangers.The Janis have found petrol pump attendants and a beggar child showing kindness to their son.

Professional help often proves invaluable.Besides actually providing therapy to the child,working with the family is the next most important part of our job, says occupational therapist Dr Anjali Joshi.Internationally known as family-based intervention,the idea is to provide support to the family so they can help the child and themselves. Joshi says one of the regular problems she has noticed with parents of a differently abled child is that they mistrust their own common sense and follow the doctors orders blindly.Id always advise parents to first trust their parental instinct and go with it. She also rues the fact that helpless parents often run from one professional to another,thinking that multiple professionals will help their child respond faster.That is never the case.Therapy requires both time and patience.In such cases,being part of a support group where you can share your fears is always encouraged.

One of the chief sources of concern remains the lack of a good education system for children who dont fit into mainstream schools.The best special schools have no vacancies and yes,there are others,but they only keep the child engaged,dont help in his development, says Singh.Orko Roy went through a few schools and finally stopped altogether and joined a computer class instead.Hes now at the Birla Academy of Art in Kolkata,where his college-going dream is coming true.Hes become much more confident,coherent and makes eye contact with people now, beams his mother.Anmol was sent to the BM Institute of Mental Health where he learnt well.But he stopped going when he outgrew the group activities.With the new education Act,there might be some hope of integration in mainstream schools,but unfortunately even the special schools are severely lacking, says Gaurang Jani.

The Packards tried to enroll their son in a regular school,but Dwellyn was refused admission.They didnt want to put him in a special school either.We didnt want him to end up making agarbattis and baskets,which is what most special schools do in the name of development, says Donita.Finally,a speech therapist referred them to St Josephs School in Dombivli whose credo was inclusive education and where special kids were taught in resource rooms.In just two years,Dwellyn has undergone a tremendous change.He even initiates conversations in accented Hindi with his classmates and asks them what theyve got in their tiffin box, says Shamal Joshi,his school-teacher.

Mithu Alur was just 23 when she had Malini,after 40 hours of prolonged labour.The baby was born brain damaged.Thanks to her privileged background,Malini was taken to London and admitted to a special school in Chelsea.It was found that she has an above-average intelligent mind in a disobedient body, says Mithu.After five years,they returned to India hoping that the country would have done something for its disabled.While Malinis brother Nikhil enrolled in a good school,there were no good options for Malini.For her and the other less-fortunate Malinis in India Mithu set up the Spastics Society of India (SSI) in Mumbai in 1972.India has made some strides towards education of children with disability by including their rights in the free and compulsory right to education till the age of 14.But it is yet to be implemented, says Alur.

Malini,who recently celebrated her 42nd birthday,got a double masters in womens studies and IT and is a senior event manager at a bookstore in Mumbai.She travels the world with a communicator and power point presentations,lecturing on empowerment processes and policy matters of the disabled.She has started a group on rights and entitlements called ADAPT (Able Disable All People Together).That made Mithu sensitive to the power of words and SSI has now been renamed and merged with ADAPT.Malini has written her autobiography,with one index finger.

Malini,incidentally,is also one of the rare people who speaks at length about sexuality of the disabled in her various lectures across the world.In an hour-long online chat with TOI-Crest,she types: Indian parents always treat a disabled adult like a child.We have bad speech and deformed bodies,but we have the same urges as everybody.However,for disabled people sexual urges are suppressed.Its still easier for a disabled man to find a normal /disabled female partner,but theres always a negative attitude towards disabled women.Most disabled women are repressed and suffer from the trauma of not being seen as sexual or even capable of giving emotional love. Malini believes everyone can help change this situation: Everyone has a role.Parents,relatives,friends and neighbours can all encourage disabled people to meet the opposite sex.Disabled people must experiment,which can only happen if their parents are not over-protective. About herself,Malini types: My love life is as pathetic as any single womans,as it is mostly one-sided.

(Reporting by Sudeshna Chatterjee,Sharmila Ganesan-Ram and Smita Kothari in Mumbai,Rema Nagarajan and Nandita Sengupta in Delhi,Radha Sharma in Ahmedabad,Prithvijit Mitra and Swati Sen in Kolkata and Sruthy Susan Ullas in Bangalore)

* CREATIVE COLOURS: Orko Roy,who has Aspergers Syndrome (a form of autism),with his parents Nina and Kaushik.Orko,who found it hard to grasp a pencil when he was a child,has now mastered the paint brush