"A Citizen"s Eye View"

Saturday, November 22, 2014

In My Canada, No One Gets Left Behind.

*Thao immigrated to Canada from Vietnam in the mid 90s. He had no special skills except for the fact that he is a hard worker. He is good, kind, decent and honest. In every way, reflective of those values we like to think of as "Canadian". 

He came to settle in my home city of Hamilton and with the support of the Chinese and Vietnamese communities, was able to gain regular work and was able to establish himself as a brand new Canadian citizen. 

Sometime after that, Thao was able to return to Vietnam in order to marry *Kim, whom he had corresponded with since coming to Canada. He was able to bring his new wife back to Canada where they set up a home together in the heart of the Chinese/Vietnamese community and in 2003, Kim gave birth to a baby boy and bestowed upon him, the English name of *John. They were living the dream

Thao continued to work hard. Despite the fact that he was an unskilled laborer, he has never been without work. And though Kim did possess some abilities, having worked in a camera factory in Saigon, it was decided that she would stay at home to raise John. They lived a humble, but honest life. And with the arrival of their son, it was an extremely joyful one. 

But as John began to grow, Thao and Kim noticed that all was not right with their little blessing. He was not attaining all the usual developmental milestones. He was not learning to talk or to communicate in any of the expected ways. And according to Kim, John remained cold and distant. He did not appear "attached" to her in the same way that other children might. He remained non-verbal and seemed perpetually anxious. He was aloof and distant. 

John began attending Junior Kindergarten at the school where I work at age four. It became immediately apparent that something was not right with John and even though most of us recognized the telltale signs of Autism, there was no diagnosis. Kim blamed herself for John being the way he was and she and Thao had hoped that the school would be able to teach him to speak. There had been no other "intervention" or support for the family prior to that. Mostly because being relative newcomers to Canada and existing primarily within the Vietnamese community, their English was limited so they had no idea that support of any kind beyond school even existed. 

The school was able to eventually help the family make the appropriate connections with community agencies. Coming from Vietnam however, Thao and Kim remained hesitant and wary regarding any involvement with government services. So they were slow and frightful of obtaining any kind of help beyond school. Kim continued to believe that she was for some reason, to blame for her son's disability. Some in the community had suggested that John's condition might be the result of her sins in a past life. She believed them.

Finally, though, an official diagnoses of Autism was arrived at.  And with a diagnosis finally in place, the appropriate school supports could be accessed. This is where I became involved with John. My job was to support him in school. By this time, he was in grade one. He was achieving absolutely nothing except to be an overall disruption to his class and to the school in general with his frequent and violent "melt-downs". Everyone in school knew John by his screaming tantrums. 

With the implementation of structure and programming geared to his needs, John began to improve somewhat. He became less of a disruption and he seemed to be actually learning some very basic literacy and numeracy skills. But it was clear that remaining in a "mainstream" setting was not the most efficient or cost-effective way to go with John so he was eventually transferred to another school which had a self contained classroom for children with Autism. 

In the meantime, The family was able to access more and more government sponsored services such as IBI (Intensive Behaviour Interventions), ABA (Applied Behaviour Analyses) and the help of a dedicated Social Worker in order to help the family to "navigate" the system and to advise on in-home behaviour strategies

It became apparent that in-home support was required in order to assist Kim and Thao to manage with John. My services were enlisted once again due to my previous school connections with John. Though my function was originally to provide "respite", to enable the parents to have some rest from the 24/7-365 ordeal of raising a severely autistic child, it has morphed into a multi-faceted role that now includes friendship. 

I have worked with John and his family now for five years. Kim no longer feels that she is to blame for John's condition, though she continues to go to temple once a week to pray for him just as any Christian mother would do. Thanks to school and the help of government funded community services, John is progressing to the level of his ability, which means that he is learning some basic self-regulating skills and means of communicating his wants and needs. But John is still severely autistic and will always remain so. His future continues to be unclear, especially with regard to when he becomes an adult and Kim and Thao age and become less able to provide for John's basic needs. He is so reliant on them.

Kim has often indicated to me that if she and Thao had remained in Vietnam, she doesn't know what would have become of John. She says that services like IBI are available there, but are limited to those who can pay for them. She feels that she would have had to give up guardianship of John by now if she had not come to Canada. And she cries. But even here, everyone acknowledges that without Kim, John would be in residential care by now. 


Six months ago, Kim was diagnosed with a brain tumor. All of a sudden, all bets were off regarding John and his care. The future seemed to come crashing home much faster than anyone was willing to admit. And this loving little family was thrown into crisis. 

But after multitudinous tests and evaluations, none of which would have been available to Kim in Vietnam, it was determined that her tumor was benign but operable. If she did not have the surgery though, she would go blind. 

Last Wednesday, Kim had her surgery. It was an innovative procedure that is less intrusive than actual brain surgery and was performed by some of the best doctors in the country. She is currently receiving world class follow up care in hospital (though she's not overly thrilled with the food). In addition, social services are providing additional assistance with John in his home so that Thao can continue to work and spend a little time with his wife in hospital. 

Thao told me that in Vietnam, none of the services that his wife has received would have happened. And even if they were available, there would have been no way they could have afforded them. Kim would quite simply have gone blind. And there would have been no way Thao could have provided support for his son and work as well. He would have had to give John up to the state. He hinted that John might have ended up in a "sweatshop" but I can't verify the validity of this claim nor would Thao elaborate. But it's safe to say that he would no longer be living in a loving home and being given the best quality life possible for a child with autism. 

But thanks to Government sponsored social services and health care, Thao and his family are being given every possible opportunity to continue to live and thrive together. One day, John will most certainly have to go off to live in a group home of some kind. He will never be able to live independently, but at least he will never end up in a sweatshop. But right now, the day when John will have to leave his parents seems quite far off and he is being given every conceivable opportunity to remain with his family as long as they are physically able to care for him. 

And Kim will not go blind and will be able to continue to care for the son she has dedicated her life to. All because her family lives in a society that believes everyone, not just the privileged few, has a right to education, health care, community supports and social services. And despite the shortcomings of our current xenophobic, narrow minded, self serving federal government, Canada remains a kind, caring all inclusive family, just like Thao's family.  And in this family, no one gets left behind. 


* The names of family members have been changed in order to protect their privacy. I chose the name "Thao" for the father , because it means "courtesy" in Vietnamese. And this man is one of the most courteous, decent, honorable men I have met. 

I chose "Kim" for the mother's name because it means "gold" or "brilliance" in Vietnamese, which is certainly reflective of her value to the well being of her son and partner. 

I chose the English name of "John" for the son as it means "grace" or "mercy", which the child has received in abundance thanks to the caring and inclusive nature of our society. 

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