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Saturday, January 16, 2021

Are you an autism parent? Arm yourself with knowledge

Reading Time: 5 minutesI met Veena at an autism workshop for parents from Sydney’s Indian community. It was conducted by Positive Partnerships, a national project funded by the Australian Government to support school-aged children on the autism spectrum. Veena, who’s also part of the organising team, told Indian Link, “These workshops show me I’m not alone.”
Autism.Indian Link
She recounted her story as the mother of a seven-year-old child with autism. “Three years ago, I was in a really dark phase in my life, shaken emotionally and mentally. I wrote a post on Facebook about the challenges my daughter and I were facing in our daily lives. It was a cry for help. I am so glad that someone reached out – a lady who helped me find available services.”
Positive Partnerships provides parents, carers and educators with current, relevant and evidence-based information about the best possible outcomes for the children. It defines autism broadly as a developmental condition marked with social communication issues and repetitive patterns of behaviour. Get more info on the Positive Partnerships website.

I wrote a post on Facebook about the challenges my daughter and I were facing in our daily lives. It was a cry for help. I am so glad that someone reached out – a lady who helped me find available services.

At the workshop specially designed for South Asian families, Indian Link spoke to many parents about how they stay strong and positive through the ups and downs. What came out loud and clear, is that these parents have cultivated the art of focusing only on their children’s strengths than their weaknesses.
Sort yourself first
Harsh Aggarwal, father of a three-year-old autistic child, observed, “When flying, in an emergency, you’re asked to help yourself first and then help others. The same principle applies to my situation as well. If I’m depressed about my son being autistic, how can I help him? First I helped myself by calming down and then I started looking for resources to support my son.”
He added, “There are lots of support systems available these days for kids on the autism spectrum, especially in Australia. But there’s no better therapy than parents! After he was diagnosed with autism, I reduced my working hours from 40 hours pw to 20. After spending a lot of time with him, I know his strengths and weaknesses. While I’m proud of his extraordinary memory, I embrace his weaknesses as well. For e.g., he’s very scared of loud cheers, so for his birthday celebration recently, we requested the guests just clap instead of a making loud ‘happy birthday’ cheer. My son is different, but has his own special skills, so it would be unfair to compare him to other children. I focus only on my son’s extraordinary skills to help him achieve something in life.”

If I’m depressed about my son being autistic, how can I help him? First I helped myself by calming down and then I started looking for resources to support my son.

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After finding help on the online forum, Veena realised that there must be other mums out there needing guidance and a platform to vent their feelings. She has since started a WhatsApp group called Super Moms of Super Kids. It now has close to 70 members actively sharing their stories and helping each other. “I opened up and got help,” she said. I’m in a better place now – a strong, positive mother! I urge other to open up and seek help instead of going into their own shell.”
Shift the focus to their skills
Another dad who preferred to remain anonymous said, “While other kids can ride bikes, my son cannot. But unlike them, he can ride a horse. I see his strengths rather than brooding over the things he can’t do. He’s getting professional training for horse riding and he’s very good at it. But I was not this positive a few years ago. Within a few hours of assessment for autism, life turned upside down for me and my wife. We didn’t know anything about autism, so I started researching to understand what my son was going through. Then we slowly gathered strength to cope with it.”

While other kids can ride bikes, my son cannot. But unlike them, he can ride a horse. I see his strengths rather than brooding over the things he can’t do.

Be less judgemental
Rashmi, another parent, revealed she has learned many life values through her experience. “When my son was three-and-half years old he was diagnosed with autism. That would be a challenge for any parent. I gave up my career for my son. But I’m a better person now. I remember, earlier, I would judge kids who’d misbehave in public places. I was so wrong! I’m not judgemental anymore. I’ve also learned to appreciate the small things in life, e.g. if my son speaks a word.”
Ram told us why he’s proud of his seven-year-old son. “He doesn’t call out people’s names but he’s very good at naming different types of dinosaurs, something he’s popular in school for. He goes to a normal school, which has a support system for special kids. I attended this workshop to learn more about autism. Otherwise, you’ll be like a frog in a well. You meet like-minded parents and we also fix playdates for our children as we’re comfortable with our community.”

I attended this workshop to learn more about autism. Otherwise, you’ll be like a frog in a well. You meet like-minded parents and we also fix playdates for our children as we’re comfortable with our community.

Patience as a virtue
Rajni Chandran said, “I have a 30-year-old son who is autistic. From my experience, I can tell young parents they have to be more patient. When other kids do things effortlessly at the right age, you shouldn’t expect the same pace from an autistic kid. Their progress may be frustrating, but you have to wait patiently. With my son Siddharth, I’m concerned about who will take care of him after me. But I have put aside those worries and am working to help him build strong relationships and a network of friends.”

From my experience, I can tell young parents they have to be more patient. When other kids do things effortlessly at the right age, you shouldn’t expect the same pace from an autistic kid. Their progress may be frustrating, but you have to wait patiently.

Arm yourselves with knowledge
Attending workshops makes a difference in understanding the child’s behaviour. Lakshmi Ajjampura, Project Officer, Multicultural Program, Positive Partnerships recounted, “We are trying to reach out to parents in our community, as there is a social stigma surrounding this issue. The fear of society restrains them from opening up. The parents have to be open minded to avail the innumerable services that are available. If you observe a significant delay in your child’s speech or impaired social interaction, don’t waste time. Try to get an assessment ASAP.”

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