We choose to be happy every single day. Each time you shrug off a setback, don’t rise to someone baiting you – each time you smile, you make a choice.
This decision is often spontaneous, built on habit reinforced by time. For Pakistani expat Qurratulain Jawad, however, it’s a predisposition that was honed over time. “Suleman's condition made me more positive, because there are two ways I could go into it, one was to cry over it and mess it up and the other way was to accept what it is and move with it – because we get only one life, we need to make the most out of it,” she tells Gulf News in an interview.
She was at the crossroads between despair and happiness five years ago, when her son Suleman one day regressed in terms of speech; his behaviour altered – he was not interested in most things – and concern started to pour in from school. Visits to the doctors yielded little result – they thought speech issues may have been caused because of the bilingual nature of his surroundings - at home, the Jawads mostly spoke in Urdu while in school the medium of communication was English.
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There were suspicions of Autism, the symptoms of which line-up with what he was going through, but the spectrum is a broad umbrella and finding his spot under it took some time.
Finally, she recalls, he was diagnosed with what was once called Childhood Disintegrative Disorder or Heller’s Syndrome, after the Viennese remedial teacher Theodor Heller in 1908 discovered the rapid regression of life skills in some of his pupils. He had termed it dementia infantilis. Later, the US-based Centers for Disease Control and Prevention added it to the Autism Spectrum.
This disorder is rare, affecting about every one or two kids in 100,000, according to US-based Spectrum.org, a news and analysis site on autism research.
“During the phase when we were trying to get the proper diagnosis, we were trying to find the proper intervention – that was a really difficult time but we are actually very much thankful of the support system UAE has in terms of awareness and inclusion, the policies that they have. Because of that things are very easy,” says Jawad.
“We are not a typical family,” she adds. “A child with additional needs of course is different – life is different than what a typical family could have, but it’s beautiful.”
Overcoming challenges
Jawad offers insights from her journey as the mum of a child with additional needs. She explains:
Acceptance is tough: “The very first thing that parents go through and that I went through \as well is finding acceptance. You are trying to fight with yourself, asking yourself ‘why my child?’ You see nobody else’s child is having [the] issues you are among your family or friends … that’s very common, very natural. But it depends on how quickly you can overcome that; that’s a very personal thing.
“When you get over that phase, things start streamlining. You know that okay, my child doesn’t have the potential that other kids have but my child has a potential other people don’t have.”
It can be isolating: “If you are not connected with other special needs families or you don’t have access to a support system then acceptance is highly challenging and can be delayed, but if you find others who have a child with additional needs then you overcome relatively faster, because you see it’s not just you, there are other people and some of them might have challenges more than yours.
“I met a friend of a friend, for example, who has three autistic teens. And when I saw her I told myself, ‘Qurratulain, you are just making noises, your problems are nothing.’ That was quite a turning point for me,” she adds.
Dealing with every day things: “Every parent has their own struggles and what is my struggle may not be another person’s struggles but they might have another type of struggle. For us for example, Suleman had anxiety caused by new people and new places. So if we were going to a new place and there were unfamiliar places, he would have an outburst of anxiety. So managing the child in public if people don’t understand is tough… because people might think he’s having a tantrum but he’s not – he’s having a meltdown,” she explains.
Differences in learning: “One may get frustrated with how a child of Determination is learning as well. For example, typically kids learn when you are telling them something so they learn when they are hearing about something or when they are seeing something. But [maybe] your child is not learning. He needs a different way of learning – maybe he’d learn about it by touching it, maybe he’d learn about whatever you are telling him by exploring it. So they [kids on the Autism Spectrum] have learning differences – some learn from texture, others from doing things. Finding what works is very challenging. And you have to go the extra mile to find what works for them. But when you do it’s really worth it,” she says.
The impact of supporting a child: “My child is a budding athlete; he ran 100km over six weeks before his seventh birthday in 2020. He has extra energy. I realised if I try to reprimand him it’s not going to work, I have to let this energy out. So I enrolled him in sports and now we run every evening. The result is he gets his access energy out and I – who started running alongside him so I could support him – ended up losing 13kg in six months.”
She adds: “Every child may not become a [Indian cricketer] Sachin Tendulkar or tennis champion Rafael Nadal, but every child has the potential to become himself. As parents, we need to provide the right environment for that.”
The world is not a cruel place: “People are very understanding, when they know of someone’s disability. For instance, people are very accepting of wheelchairs – because the disability is visible. My child’s disability is not visible, so it’s not people’s fault … you have to tell people, tell them 100 times, if that’s what it takes. I go outside almost every day and I talk to at least one person about autism every day,” she says.
The early days are hard, of course, she admits and the road isn’t as smooth as all that – every once in a while a pothole will appear and derail things – but processing the damage really depends on you, she says.
Jawad adds that since each child is so singular, what works for each one may be different too. In her case, medication only made things worse for Suleman and therapy had only so much impact. “Therapy, he had had early intervention, but it also has its limitations…even if I send him for therapy for five hours, let’s say. Therapies are expensive and if I’m not practicing what he’s learning there at home, he’s not going to learn. Because that’s five hours versus 19 hours he’s spending with me. He can lose all that. So I got myself trained, I got multiple certifications and I started working with him myself and I found that when I was working with him myself, his response was much better, so gradually I removed him from therapy,” she adds.
“I did not reach out to any councilors when I found out about his diagnosis, but I do think people should – it’s a helpful resource,” she says.
She repeats the sentiment of choosing the glass half full instead of half empty. Of course, with as the true optimist, you could also argue that the glass can be refilled. And that happiness is a choice.
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