Not a lonely fight, anymore

Shahana Chowdhury kept going back to the story of her 25-year-old son’s recent Hong Kong visit and repeatedly said how proud she was to have seen her autistic child along with 10 others win the best performance award in a cultural programme there.

Her excitement was mixed with gratitude for Begum Nur Jahan Dipa, special educator at the Parents Forum for the Differently Able (PFDA)-Vocational Training Centre, who made it possible.

“I had never thought I could see him this grown up,” Shahana said, referring to the mental and behavioural changes she had witnessed in her son, Miran Mahood Saagir, over the last three years. 

The training centre that has been working relentlessly to free children like Saagir with special needs from the social stigma and empower them by increasing their learning and socialising abilities was founded in 2014 by Sajida Rahman Danny, parent of an autistic son.

On its website, it said it had been working towards ensuring social inclusion of especially able children and in the long run their residential rehabilitation so that they could live with dignity.

Three years before the centre was set up, Danny formed the forum comprising a few parents of autistic children. The forum has now grown into a network of 1,300 parents from across the country.

They share their stories with each other, lend their shoulders to each other in need, and get suggestions and advice from one another in the interest of their children.

Before joining the forum, “every one of us used to think, ‘I am the only mother or parent who has a child like this’,” said Dipa, vice-principal of the training centre.

“We see things differently when in a group.”

The forum arranges counselling of parents and helps build awareness through rallies and participation in national and international conferences.

It works at the policy level as well. Registered with the social welfare ministry, the parents’ forum had submitted recommendations to the government, trying to address the rights of children with autism spectrum disorders (ASDs). 

Many of the recommendations were implemented under the disabled persons rights and protection act 2013: people with disabilities can now have bank accounts and spots allocated in mainstream schools, campaigns are run in various radio and TV channels to make people aware of their rights.

The forum’s achievements have so far lit up the treacherous path of the journey that the parents make with children with autism, cerebral palsy, down syndrome, and intellectual and neurological disabilities. This is what Danny wanted to do.

A two-and-a-half-year-old son diagnosed with severe form of autism was what motivated her to find a way to improve the lives of such children. Twenty years later, the son, Seeam Ul Karim, turned into an active person who loves cycling.

“I am now looking for a job,” said Seeam at the PFDA’s office in Mohakhali DOHS after he had cycled back to the centre in the evening on January 9. He has completed O levels and a course on baking.

A total of 169 neurologically challenged people, including Seeam, have so far received training in baking since March last year under a one-year programme funded by the International Labour Organisation.

Thirty-five of them have been employed by, among others, Shwapno chain store and Bangladesh Parjatan Corporation.  

“We welcome parents of such children, irrespective of their social and financial status, caste, religion … whatever difficulties the children have, we will turn them into stars and make their lives beautiful,” Danny pledged in an interview over phone.

Indeed, some are living beautiful and dignified lives. At the eatery Angel Chef on the ground floor of the PFDA-VTC office, six children work, substantiating Danny’s belief that they could be as capable as any other. All they need is opportunities to reach their potential and empathy of the broader society.

Sitting at one of the tables, Shahana and another member of the forum, Runia Mokbul, recounted the agonising days they had spent fighting to ensure even the basic care of their sons within the social and familial confinement.

“Neighbours, even relatives had scorned me as if it was my fault that my son was like this,” Runia said.

“I changed one school after another [in Dhaka]. All of them said, ‘Your son is mad, why don’t you keep him at home?’ One day my son came from school with blood oozing from an ear,” she said, looking at the ground to avoid being seen in tears.

After a long pause, she recomposed herself and said, “That day was my son’s last day at school.”

Danny too has a personal story behind her efforts to connect parents of children with ASDs and to set up the training centre.

The most difficult decision she had to make was to get a divorce 15 years ago and raise Seeam alone. “He [her husband] did not accept it [the son being autistic]. Spending money or giving support to the boy seemed worthless to him … But I didn’t want to believe he was worthless. I could not give up on him [Seeam].”  

During that time, there was hardly any way in Bangladesh to know what autism is and its impact. When Seeam was seven or eight, Danny flew to Bangkok with her son and found out he had an array of issues -- learning disability, hyper activity, sensory problem, sleeping and anxiety disorders.

Returning home, Danny put Seeam in all kinds of therapies and began giving him even more attention to help him learn every day chores one by one. Her own struggle, sacrifice made her realise not all parents of children with special needs had the means to support them.

She made the next big step. She quit her job at the Unicef in 2015 and started work on building the training centre. 

In the initial years, Danny herself funded vocational training for the children. With the success of the centre, many organisations and individuals came forward to help.

She is thankful for the support she has received all along from Saima Wazed Putul, daughter of Prime Minister Sheikh Hasina and chairperson of Bangladesh National Advisory Committee for Autism and Neuro-developmental Disorders.

Parimal Das, office secretary of the PFDA, also said, “Whenever we approached the government, it responded well and extended its support.”

The government has recently taken up a rehabilitation project for the children with disabilities in Keraniganj in order to ensure their safe living. 

But this is not enough, as, AKM Ahad Ullah, deputy director of the department of social services, said referring to a recent study that people with disabilities account for almost 1 percent (more than 15 lakh) of the country’s population.

This is why members of the forum think projects like the one in Keraniganj should be replicated in other parts of the country.

The organisation also demands a national education policy for the special children.

Only two schools -- Kalyani and SWID Bangladesh -- for children with special needs are under the Monthly Pay Order (MPO) scheme. The forum demands all schools meant for children with special needs be given the much-needed government support.

The most important things are counselling of parents and therapy of children. More centres should be set up across the country to deliver these services, special educator Dipa said.

Sports are therapeutic and can boost the confidence of children with ASDs. Autistic Children's Welfare Foundation arranges regular sports events where children with autism take part in basketball, bowling, and athletic sports, said its founder Tofayel Ahmed.

Many children with autism are capable of studying in mainstream schools if counselling sessions can be organised for all children on a regular basis. In that case, “Children with autism will not be bullied by their peers,” Dipa added. 

Above all, the children with special needs should be given the opportunities to become self-reliant. “They get monthly allowances if registered with the social welfare ministry. But we don’t want that … we want a system in place, so they can realise their potential and live a dignified life,” said Parimal of PFDA and parent of a son with mild autism.