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Page 20, Filipiniana, September 2003
FILIPINIANA NEWS

Living with autism: Ron Michael's Journey

The Journey [Destination: An outside World called 'normal']
Someone once said there are three partners in every birth of a life: God, Father and Mother. Somewhere in there is a fourth partner called a 'caregiver'. All four would be Ron's partners for life because the bonding that evolved during the time of daily care becomes a never-ending, ongoing harsh and inescapable reality.

[Click thumbnails for larger photo view; Click Back arrow to return to this page] I was Ron's caregiver from the time he was diagnosed with autism in the form of Asperger's syndrome. Ron was a healthy, happy baby. The minute you meet him you already knew this baby had a lot of love to give to the world. At 2½ years old he became quieter. He would play by himself all day. One day he crawled a few steps downstairs where slippers and shoes were scattered on the floor. He accurately paired each and lined them together into a perfect circle. Books immediately fascinated him. In fact, everything fascinated him from pictures in the newspapers to writings and posters on the wall. He was not yet 3 years old. He would take each book from the bookshelves, one by one lined each that filled the entire hallway.

At a dinner party, Ron's parents was approached by the family doctor and suggested they have Ron be diagnosed at the Sick Kids Hospital as soon as possible as he was displaying 'autistic features', the family doctor, noted. Ron's parents took him to the Hospital for Sick Children for diagnosis. From that day on it was never ending appointments to specialists, behavioral therapists, speech pathologists, the Geneva Center for Autism in Eglinton & Yonge, to autism workshops and seminars. The experts said that Asperger's is the high-functioning syndrome of autism. It means we have such high hopes for Ron, although handicapped in verbal as well as non-verbal communication. The speech therapist was very optimistic. After seeing Ron he told us Ron is capable of talking but it may be just delayed. So, since we were told that Ron is a gifted autistic hope opened in us all kinds of  possibilities to seek, find and use all forms of resources available i the city. And that was what Ron's parents, Jun & Lucy started to pursue with intensity and drive.

Mom and Dad: "Only God knows our true needs and anguish. But God provided us with wisdom and abilities we never knew we had. Then, somehow along our journey with our son, in both his and our struggle to be as normal as he could, we've already discovered and always hear God saying, 'It's really going to be okay, for I will walk with you all the way!"

There comes a time in every parent's life when they need to turn their child over to the world. Right away, Ron's parents took advantage of all resources available at the Hospital for Sick Children and the Geneva Centre for Autism in Toronto at Eglinton Ave. Resource and Assistant teachers and speech therapist came to us in our house and shared our journey with Ron in his baby years. Workshops, seminars, tests, support groups, programs and therapies crowded Ron's calendar of appointments. We learned from experts that "while it may seem somewhat distant from the classic mother-child or caregiver-child interactions so important to growing toddlers, especially under age 7, the overall health of community is also a powerful determinant of what makes a child healthy".

Ron's mom took this to heart and spent a lot of time, with her husband totally behind her, bonding with Ron as the three of them bonded with the outside world, mainly their community as a whole. They took Ron with them everywhere they go to visit, to simply walk, to shop, to visit friends and relatives at parties. Their were lots of difficulties and lots of embarrassing scenes. Ron as a baby and a little boy could not adjust to normal events. The crowded room, the noise, the sound all seem to overwhelm him, he would cover his ears, got upset and ended in an 'autistic' tantrum. His mom and dad would simply had to leave as Ron struggle sobbing and screaming, sometimes amidst glaring and angry eyes of people around them who did not understand that Ron was different and instantly assumed his parents are poor parents and even suspect of abusing their child. However, regardless of every consequence like this, Ron's mom and dad never gave up. They continued to brave the 'cruel' and misunderstanding world, they continue to share Ron with the big outside world.

The Caregiver [Tons of silent prayers in the terrifying voyage through a strange world of so much unknown and mystery. one could only guess and feel what is inside the 'special brain' of this child.]

A resource teacher came to the house once a week. I watched intently while the teacher interacted with Ron. The interaction was overwhelming and very new to me. It is a form of Behavioral Modification Therapy. I learned that a babies brain learns more rapidly during their first seven years of their lives. From then on their brain tissues hardens and subjective and perceptive learning slows down. The toddler's brain is use-dependent so the more that it is experiencing the stronger it makes the connection to a given experience that is being learned. In the absence of those experiences, connections do not happen at all. It means that as a caregiver Ron's learning experience will depend on how I give his instructions and how he picks up everything in what I say, how I say it, how I act and how I show my emotions. Everything that I am and what I do and say everyday as I care for him will have a strong influence in his growth and development. This was most scary for me. Amid daily uncertainty, I constantly prayed to be 'perfect' for Ron's sake.

The first time I saw Ron's violent tantrum

...to be continued.

Under construction! :-( Thank you for your patience.