On a special journey

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Raising a child with autism brings with it a whole new set of challenges.
NT NETWORK examines how parents can be aided to navigate this emotionally stressful journey, especially in pandemic times

CHRISTINE MACHADO | NT NETWORK

On April 5, 2016, life changed for Dinesh Kumari Sharma when she gave birth to her son Shaurya. Two years later, her life changed again.

“I got worried when my son didn’t speak even till the age of one and half years,” she recalls. The paediatrician, however comforted her saying that boys sometimes take a little more time to speak. And so, they waited a few
months more.

When nothing changed, the paediatrician referred the parents to an occupational therapist who diagnosed the
boy with autism.

The path to acceptance

“I didn’t believe her and so I sought a second opinion from a clinical psychologist and developmental paediatrician who gave the same diagnosis. It was Shaurya’s second birthday when I got this confirmed diagnosis,” says Sharma, adding that she was in denial for two weeks after this.

“But then I had to do what I had to do as a mother, as a doctor, and even as a father,” says the dentist by profession who is now separated from her husband.

“It was my husband’s rejection of our son that helped me grow stronger and take the situation head on. It is ironic that Shaurya’s father is an oral and maxillofacial surgeon but his education has made no effect on his attitude towards our child. He has washed off his hands from our son,” she reveals.

“Receiving an autism diagnosis is a turning point for families. I have interacted with parents who are in a state of shock. They believe it might just be a phase and their child might grow out of it if they just ‘wait and see’. I’ve also met parents who breathe a sigh of relief – they have been expecting it and finally have a reason for the child’s developmental delay,” says head, Autism Program, Sethu – Centre for Child Development and Family Guidance, Andre Velho.

In fact, the latter reaction was the case for Elizabeth Kurian Joseph and her husband.

“Ashwin started speaking single words in a year and all his physical development seemed normal. But after four years when he went to school, he seemed to be ‘different’. He didn’t sit in one place, he wasn’t coping with academics, but mainly he wasn’t framing sentences,” recalls Elizabeth.

Ashwin was first diagnosed with a language development delay with ADHD, ie Attention Deficit Hyperactivity Disorder. A year later, it was diagnosed as Mild Autism Spectrum Disorder. “The diagnosis was termed ‘mild’ and I had heard of geniuses amongst people with disabilities so I just hooked onto that hope initially,” admits Elizabeth. In the same week that the diagnosis came through, there also happened to be a three-day workshop by Action by Autism – an NGO from Delhi run by parents, which gave Elizabeth a pretty good idea about the disorder, what to expect in each area, and how to go about the disorder. “Yet I did go to NIMHANS, Bengaluru for a second opinion, which ended up as a sheer waste of money and time. I also did a lot of surfing on the net, sought advice from professionals and started networking with other e-groups and organisations,” she says, adding that it has been a relentless effort to come to terms with the new challenges that spring up every minute and then deal with the same. 

Add to that, the couple also have a younger daughter and they had to help her understand Ashwin’s challenges, while also ensuring that they made enough time for her.

“My daughter is now 17 years old and it’s been a hard task balancing being a mother to both. The initial years were tough, when my son used to attack her with aggression,” confesses Elizabeth. However, post puberty, when Ashwin started settling down, Elizabeth started trekking as a personal activity on Sundays as ‘me- time’ activity. “Slowly I started taking my daughter along too and we did some great treks. We have had quite a few mother – daughter trips since,” she says, adding that based on her observations, siblings of children with autism learn and mature much early than their peers. “They realise that their sibling is different and start adjusting very well. The label autism doesn’t mean anything to them,” says Elizabeth.

But while awareness about autism may have increased in recent times, parents of autistic children still deal with varied reactions from society.

“Our children look physically normal, so whenever they throw a tantrum or display inappropriate behaviour, people around assume it’s due to bad parenting,” says Elizabeth. A lot of times, neighbours and relatives also do not want their children to interact with her children, she says. “I try and explain the disorder in detail to those who are willing to listen and usually they are sympathetic later,” she says.

Another misconception is that people think children with autism are geniuses.

“Well one in 1000 may be one. And when they ask us about the genius quality, it feels as if we parents haven’t tried enough to find out. It gets very depressing,” says Elizabeth. She and her husband have also had to deal with those shelling out advice of ‘babas’ and doctors who have cured autism and insisting that they pay a visit. “Most so-called well-wishers guide you by saying ‘Take each day as it comes’, but if you are a parent of a child with autism, one has to be prepared to take each minute as it comes,” says Elizabeth, adding that over the years she has grown a thick skin, followed her instincts and has done whatever she could in her capacity. 

In Sharma’s case too, despite her husband and his family severing ties with her and Shaurya, she has found it easier to cope with the challenges. Both physical and mental. Owing to the support from her family, especially her mother, her friends, doctors, therapists and hospital staff. “I also practice yoga. It helps a lot,” she says.

Early intervention is best

And indeed, the mental stress that parents of autistic children go through can take quite a toll and there is a need to learn how to manage this while staying strong for their child.

“Parents of autistic children are known to experience high levels of stress and anxiety and can have poor physical health too,” states Velho, who advocates that parents should start intervention as soon as possible following a diagnosis.

“If parents and professionals agree on the child’s strengths and challenges, intervention can begin irrespective of the label,” he says, adding that at Sethu parents are also encouraged to meet a senior autism interventionist.

“This is a session for parents (and other family members) to discuss the diagnosis, answer questions they may have about autism and its impact on their child as well as explain to them how autism intervention happens at Sethu,” he explains, adding that they also send parents reliable resources – handouts, videos, etc, on autism, and have a family interventionist that is available to provide mental health support to parents who are grieving, who may be faced with family pressures and so on. They also have a parent support group with over 150 family members of autistic children where families can share their struggles, celebrate their successes, ask for advice and learn from each other.

“Many families report that having a child with autism is quite isolating. Getting caught up with intensive interventions coupled with the uncertainty of ‘will my child be accepted by other people’ can result in children and their parents being cut off from the social world. Going to parties, places of worship, restaurants and parks can be challenging. This is why we have a support group,” explains Velho. “No one can better understand what a parent of an autistic child is going through, than another parent of an autistic child.” And parents often find comfort and inspiration from each other and start to form bonds and friendships lasting a lifetime with other parents in a similar
situation, he adds.

Pandemic woes

Like with many other things, the pandemic has also made things difficult for families with autistic children.

For Elizabeth though the experience was a little easier as Ashwin is now a much more relaxed adult. And to keep him occupied meaningfully during the lockdown she also got him involved with mat embroidery and then came up with the idea of selling his products under the brand name Ash’win’. “We don’t know what is the future, but my aim is to make him as independent as possible,” she says.

Sharma, meanwhile, chose to see the silver lining by focusing on the fact that she got to spend more time with her five-year-old during the lockdown. But she admits that given that she is a dentist and could thus be at high risk of the virus, it was/is a stressful situation.

“It is so difficult to make my special child understand why he cannot come in contact with me till I have bath when I come home. To see those tears in his eyes when I would run straight to the bathroom without hugging him was thew most painful experience,” she says. Not being able to get therapies done for him was also a challenge. But thanks to the online consultations from his therapists, I was able to do something for him.

“Most autistic children struggle to understand what COVID-19 is, and what health measures it requires. Adapting to social distancing, staying at home and following hygiene norms is confusing and difficult,” says Velho, adding that most children and their parents had to stop interventions they were regularly attending. “There seemed to be an increase in irritability, hyperactivity, sleep issues and appetite changes in children. Anxiety levels, feelings of helplessness and the need for support in parents increased. They struggled to cope with managing the sudden amount of free time their children spent being stuck at home,” he states.

But, he adds, there were families that reported some positive impacts of the quarantine from being able to spend more time with their children such as improvements in their children’s socialisation and communication, participation in household chores and following daily routines. “Some parents also mentioned that they did not have to face the challenges of having to go to public places or the anxiety of socialising with others,” he says.

At Sethu, the team also quickly designed and started implementing online models of assessment and intervention once the lockdown was announced.

“Starting with simply providing visual aids and teaching families how to help their children follow a visual time table, sharing strategies for working on improving eating and toilet habits, involving children in household chores and following a daily schedule, we slowly started implementing more intensive interventions like social-communication, behaviour management, sensory integration, academic work and self-help skills,” he explains. Towards the end of October, they started preparing the Sethu centre for in-person sessions. “A positive outcome of the lockdown has been our ability to continue to support families in-person as well as online, which reduces the number of trips to Sethu, gives us an insight about what’s happening at home and provides coaching in an environment that’s familiar to the child and parents,” he says.

Sethu also quickly adapted its training programs to an online format. They now conduct webinars on different aspects of autism – building social and communication skills, sensory integration, toilet training, addressing sleep difficulties, sexuality education and many other topics. They also invite other experts in the field as well as autism advocates to discuss other important issues like disclosing the diagnosis to children and other people, planning for the future, sharing one’s own autism journey and so on.

But no matter the challenges on the way, say parents, it is important to not let other people’s judgments affect your relationship with the child, and to keep loving them unconditionally.

“I am still learning and there is so much to learn from our children. It is important to focus on the child’s abilities rather than the disability,” says Elizabeth. “Our children may not be geniuses, but with early intervention and love they can be moulded to become independent and productive members of society.”