Every day is a new challenge

Ambika Shaligram
Sunday, 1 April 2018

On World Autism Awareness Day, we speak with the families of autistic kids who explain the challenges they face while rearing their young ones

About Autism 
Autism spectrum disorder (ASD) is a neurological and developmental disorder that begins early in childhood and lasts throughout a person’s life. It affects how a person acts and interacts with others, communicates, and learns.

It is called a ‘spectrum’ disorder because people with ASD can have a range of symptoms. For instance, they may have problems in communication, or they do not maintain eye contact. They may also have restricted interests and repetitive behaviour. They may spend a lot of time putting things in order, or they may say the same sentence again and again. They may often seem to be in their ‘own world’.

The causes of ASD are not known. Research suggests that both genes and environment play important roles. There is currently no one standard treatment for ASD. There are many ways to increase your child’s ability to grow and learn new skills. 

Starting them early can lead to better results. One of the treatment is through special education which includes occupational, behaviour and speech therapies, skills training, and medicines to control symptoms. Person with ASD face social, communication, and behavioural challenges. These problems can be mild, severe, or somewhere in between. Early diagnosis is important, because early treatment can make a big difference.
Info courtesy: Prasanna Autism Centre

Once a parent, always a parent. Rearing kids can be fun, a little taxing and mostly exasperating. But when you become parents to special children, you learn that every day is a new challenge, and life ahead is full of ups and down. 

On World Autism Awareness Day, we speak to the families of autistic kids, who are very proud of the achievements that their child has made, and at the same time they are aware that they have a long way to go. Read on...

Small achievements
Arya turned 13 this year. And, so his parents, Ajay and Nikhil Gaikaiwari, decided that he should undergo thread ceremony. Arya sat through the rituals and also co-operated during umpteen photo shoots with relatives. For an autistic child, who gets restless and agitated in crowds, this was a big achievement. 

“We realised that Arya had some issues when he turned two. His physical growth was delayed. He didn’t respond, didn’t make eye contact when spoken to. We learnt that he was autistic,” says his engineer father, Ajay.  They stayed in the US, where both Ajay and Nikhila were working, till Arya was about six. 
“The institutional support is good in the US. The government has some sound policies. But we realised that Arya needs to develop on his social skills. In US, there was hardly anyone around. In Pune, he could at least be with his grandparents. Our streets are alive...,” points out Ajay.

In Pune, Arya was admitted to Prasanna Autism Centre, where the special educators are working on his occupational, speech and behavioural therapy. “He was a very hyper kid. When he used to get excited, he used to drop his pants. Now, he has calmed down. We are helping Arya become independent. Last year, he got potty trained. We have slowly introduced him to taking a bath on his own. He is still getting used to it,” explains Ajay.

“Arya’s language skills suffer and so he is not doing well in academics either. He can hear well, but cannot repeat correctly. For instance, if I ask him to say Upma, he will say Upda. But his memory is good; he has got a good sense of space. For instance, when we come to Fergusson College Road, he exclaims ‘Dosa’. By ‘Dosa’, he means Hotel Vaishali,” adds Ajay.

The Gaikaiwaris didn’t go for second child, because there is a 20 or 30 per cent chance that s/he too might suffer from Autism Spectrum Disorder. “We didn’t want to take a risk. Plus, we have Arya to take care of,” points out his father.

A lesson in patience 
When Shrikant Joshi comes to pick up his grandson, Atharva from the special centre, we catch up with him. Joshi tells us about Atharva, who loves his father a lot, and if the father leaves early for work, without meeting Atharva, he throws tantrums. 

Says he, “Atharva’s physical growth was normal. But he didn’t respond when we called out to him. He didn’t make eye contact. He would be lost in his world, sometimes repeating one action over and over again. When he is quiet, he is quiet. But when Atharva starts crying, then it becomes difficult to control him. Atharva also likes certain sounds, like banging vessels or throwing chappals on the ground.” 

The five-year-old boy hates crowds and hated his school too. But now he likes coming to the autism centre. He also listens to music on the mobile phone, holding the phone close to his ears. “The doctor has advised that this habit isn’t good and we have to wean him away from the phone. Atharva understands a few things, but can’t respond well. Sometimes he surprises you with his responses. On those days, we all are very happy. We think, ‘finally, he has understood’. But that’s short lived,” adds Joshi.

Atharva’s parents have to be patient with him. “My son is very attached to Atharva, but he gets angry at times. My daughter-in-law is patient on most days, but sometimes even she cracks under the pressure,” says Joshi, who adds that Atharva has a baby brother now. 

The family has also started homeopathy treatment for Atharva. “My relatives in Nashik recommended this doctor. Let’s see if Atharva responds to the treatment,” he adds. 

A mother’s battle
Shailaja Sharma’s son Tanay is 20-years-old. An autistic child, Tanay can’t speak. He communicates non-verbally. Much of Shailaja’s life has been shaped by Tanay’s needs. To help him draw out, to become independent, to make him learn a few things, Shailaja went to great lengths, even establishing a vocational centre for kids like Tanay.

Says she, “Tanay is non-verbal autistic. But his receptive speech is good. He understands what he is told. He used to attend Prasanna Autism Centre. But when he was nine, he started getting epilepsy fits, I decided to pull him out of the centre. Around the same period, my husband also got transferred to Mumbai, so we went with him too. In Mumbai, I enabled myself to learn more about autism and epilepsy. I met doctors; I met other parents; I learnt what Tanay would go through when he reached the age of puberty. I tried speech therapy too. But since he is a non-verbal child, we worked on his parallel communication — sign language, picture exchange etc. Tanay can read now.” 

Shailaja, who had done her Masters in Social Work, also worked with Kamayani (an organisation which works for mentally challenged people in Pune) and then went as an observer to Mary Barua’s Action for Autism centre in Delhi.

“Tanay is a happy and affectionate child and I had observed that he liked working with his hands. His fine motor skills were good. So I decided to create a favourable environment for him in which he could work. I was in contact with other mothers, so we pooled in corpus funds and decided to set up a shelter or a centre where children like Tanay could learn as per their abilities. We set up Vihaan, our centre, in a co-operative housing society, in 2011,” she adds.

Children with Autism Spectrum Disorder can be very hyper and aggressive. So they need to be engaged or gainfully occupied throughout the day, else it becomes difficult to control them. “Our group of mothers have hired teachers and educators for these children. We have structured the training programme in which the youth work on art and craft activities like lantern making, diaries, calendars, organic colours for Holi, rakhis for rakshabandhan from 10.30 am to 3.30 pm. Then, they go for sports. All of us want our children to live in a happy, inclusive environment. After we depart from this world, if other members of the family have to take care of him, or if he has to be admitted in a residential home, then Tanay has to be independent. He should be able to do at least a few things on his own. No one likes to take care of dependent family members,” points out Shailaja.

She also wants that the centre to be replicated so that children with autism and their parents have some assistance. “Earlier, in joint family, if one member was weak — whether economically or academically or if he was mentally ill — he was taken care of. This is what we have to achieve in our society. Hence we need more such centres, and we have to make them self-sufficient. Parents need support,” she emphasises. 

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