"I was neither prepared nor qualified to be an Autism Dad"

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"He turned from a happy disconnected boy into a rigid, crying, stressed out and anxious boy, and connecting with him became less and less possible."

 

"My name is Paul and I have a 7-year-old son, Zachary, who has autism. I’m a finance guy by training, and a private chef by passion. But I was neither prepared nor qualified to be an Autism Dad.

Signs that something was wrong

My wife and I first started being concerned when our 1-year-old son didn’t respond to his name being called, and seemed disinterested in the world around him. He was generally a happy baby, but appeared somewhat oblivious to people, beyond getting his physical needs met.

He achieved many of his developmental milestones early, but still had no spontaneous speech by the age of three years. So we brought him in to see the developmental paediatrician in SGH.

"Honestly, we had already guessed that he had autism, so the diagnosis was not a surprise to us. What was a surprise though, was how difficult it was to find an effective way of helping him."

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Initial struggles with raising an autistic child in Singapore

We signed him up for the Early Intervention Programme for Infants & Children (EIPIC), though were waitlisted for more than a year for a school placement in WeCAN at the Autism Resource Centre, as well as for 6 sessions of speech therapy at SGH.

We were obviously anxious, and also sought for help in the private realm. We sent him for occupational therapy, audio-verbal therapy, speech therapy as well as therapy using Applied Behaviour Analysis (ABA), which is held up as the conventional, gold-standard approach for autism.

As a family, we had to make many changes. We made the decision to pour everything we had right from the beginning, believing that early intervention was the key.

Conventional wisdom was that if he didn’t speak by 5 years old, he was less likely to subsequently. So I spent many frustrating hours ferrying him from therapy to therapy, intervention to intervention, all the while feeling lost and clueless as to how to reach my son.

 

Therapy that did not seem to work

Many, many hours were spent with his therapists, who would constantly try to stop him from doing the many behaviours and activities that made him look so different, and instead try to get him to fix puzzles or recognise flashcards.

The techniques were ineffective at best, and soul-destroying at worst.

He turned from a happy disconnected boy into a rigid, crying, stressed out and anxious boy, and connecting with him became less and less possible.

After a day of my son sobbing and wailing for 16 hours, I was convinced we were further away from our goals than when we first began. We made the decision to stop his therapies and look for another way. I had to believe there was a better way. As a father, giving up was not an option.

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Ray of hope

Then one day, my brother-in-law gave us a book called “Autism Breakthrough” by Raun K Kaufman. That book literally changed our lives.

It’s written by Raun, who was himself diagnosed with severe autism at the age of 18 months, and given such a poor prognosis that his parents were advised to put him in an institution and focus on their other children. Thankfully, they did not agree.

At home, they noticed that Raun seemed very peaceful and absorbed in spinning things and rocking his body, even for hours. His mother decided to try and figure out what about spinning things and rocking seemed so interesting.

So instead of trying to stop him from these “autistic-looking”, socially-unacceptable behaviours, she joined him; and instead of that encouraging him to spin and rock more, it actually made him start to look at her and be more interested in her, and that formed the basis for a connection.

The Son-Rise program

The Kaufman’s took a drastically unconventional approach to their severely autistic child, which eventually led him to fully recover without a trace of his former challenges.

Raun joined mainstream pre-school, and eventually graduated with a degree in biomedical ethics from an Ivy League university.

He is now the Director of Global Education for the Autism Treatment Centre of America® (ATCA), and goes around the world teaching parents and professionals on how to help their loved ones with autism, using the novel method his parents created, called The Son-Rise Program®.

 

Giving the Son-Rise program a try

As I read the book, three things stuck out for me, convincing me to give it a try.

Firstly, it did not involve any therapists. Basically, beyond learning how to run a Son-Rise Program for my son, I did not need to pay for any more therapy. In addition, instead of telling us that the fate of our child was in the hands of specialists who spent a lot less time with him than we did, it equipped and empowered us as parents to be the experts for our child.

The second thing was that there were no medicines involved; I was not keen to have to administer some unknown drug to my child.

Finally, the basic concepts were simple and made so much sense. Autism is more of a weakness in social and relational “muscles”, so it made sense to me that a social gym to work out these muscles was what was needed.

All the previous therapies were aimed at “helping” him compensate for his weaknesses by using other skills, but never actually addressed the underlying problem.

Also, if I wanted to connect with him, I had to be willing to enter into his world and show him I loved and accepted him. Then slowly, but surely, form a relationship bridge for him to stand and walk on as he learns what he needs to learn, in order to emerge into my world.

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Taking the plunge

So my wife and I decided to try the concepts and play with our son for 15-30 minutes a day using the Son-Rise techniques described in the book.

We JOINED him when he was in his own world doing his own thing, by doing what he did, sending him the message that we were interested in what he liked, just because we loved him.

We CELEBRATED like crazy every time he showed interest in us or wanted to connect or communicate with us in any way.

We LEARNT to be so user-friendly, that every tiny attempt he made to communicate with us was rewarded with affirmation, celebration and a positive response immediately. He soon learnt that his words were the most powerful weapon in moving us to get what he wanted.

And just with these techniques, he started to talk!

Thanks to the Son-Rise program

For the first time since we started this journey with autism, we actually felt hope. We immediately booked our places in the next Son-Rise Program Start-Up, a 5-day course held in Sheffield, Massachusetts, at the ATCA. Since attending that course in October 2014, our lives have turned from night to day, from despair to hope, from helplessness to confidence.

We now run a home program for our son daily, with a group of amazing volunteers who come to play with him, using the incredibly effective techniques we teach them.

Zachary has come such an incredibly long way in the last 2 years, moving from no speech to speaking in phrases and sentences spontaneously, asking simple questions, commenting on the things he sees.

We got our son back

Now he loves playing with us and prefers this to playing on his own. His imaginative play has grown so amazingly; he creates songs, raps, poems. He spontaneously shows his affection with hugs and kisses, and tells us he loves us.

The Son-Rise Program has not only given us back our son, but has made me a much better father. Although we still have a long journey ahead of us, it is no longer one that I face with dread and fear. I believe my son has the potential to be anyone he wants to be when he grows up, and I will do whatever it takes to get him there."

This letter was written by Paul Chan, Private Chef at Some EnCHANted Evening. To the many parents grappling with raising an autistic child in Singapore, there is hope.

More details can be found at www.embraceautism.sg. Take this opportunity to discover an awesome way to help your child!

Also READ: 5 Early signs of autism in toddlers