Down syndrome mission and adventure

While every person deserves to be loved, there exist special persons who have an amazing capability to love others.   At first, they may be misunderstood and cause denial and fear of the unknown, however, once this is overcome by positive information, these feelings are replaced by understanding, acceptance and a life-long adventure often filled with extraordinary happiness.

Such is the world that we never expected but eventually came to know.

It wasn’t easy and didn’t happen without struggles and challenges. I am not shy to admit that the word “disability” wasn’t in my vocabulary, until I saw our son Jeremy when he was born 23 years ago.  Upon confirming his condition through medical tests, my wife and I joined the Down Syndrome Association of the Philippines Inc. (DSAPI).

DSAPI was founded in 1992 by Tony Pasia and Gerry Walmsley, both new parents of children with Down syndrome, whose search for answers led to finding other parents in a similar situation. A random genetic disorder, Down syndrome occurs in one out of 800 childbirths, in all cultures,  ethnic groups and sectors of society.

Jeremy was unlike his sisters in so many ways and had to undergo lots of therapy to help develop his gross and fine motor skills, speech, and eventually, basic life-skills around the home.  Now capable of attending to himself and most of his needs, he is quite independent and behaves very confidently.  Most specially, he is very, very sociable.  While he may not be quick to react to other sports, he has come to enjoy playing golf and perhaps, his unusual flexibility helps his seemingly effortless and fluid swing.  He may not be good at many other things but finding his strengths has been truly rewarding.

That’s the principle behind corporate social responsibility (CSR) programs implemented with some companies.  Rather than forcing persons with disabilities to develop skills that typical persons can do, they are given tasks that are suitable to them and work fewer hours.  DSAPI has partnered with Unilab Foundation’s Project Inclusion where 12 persons with Down syndrome are now working at South Star Drug. Their presence in the head office and stores makes a positive mark on South Star employees and customers. Jeremy was among the first to participate in Shakey’s “Love ’Em Down” program.  Because of positive feedback from customers and co-workers, management now plans to expand this CSR program from seven restaurants to 21 more locations in 2019. We hope more and more corporations follow suit and come up with creative CSR programs for persons with disabilities.

Hans T. Sy of the SM Group has himself been at the forefront of our Happy Walk project for about 10 years, this year leading over 6,000 participants at SMX Mall of Asia, including for the third time, US Ambassador Sung Kim.  The Kingdom of Thailand Ambassador Vasin Ruangprateepsaeng joined for the first time. On its 17th year, Happy Walk was held simultaneously at Cebu, Davao, and for the first time, at SM City in Bacolod, with this year’s estimated total participants topping 9,000.

I also cannot deny that having Jeremy has changed our lives, in ways that we never imagined.  Okay, I will also admit that I learned to play golf because of my son, in order to understand the game that was our main source of raising funds. Understanding and acceptance were crucial to moving in the right direction and attending to Jeremy’s special needs, including so many necessary medical tests.  While keeping developmental goals in mind, it wasn’t always straightforward as he was not always in the mood or in the best of health for his therapy sessions, however, patience was a virtue that had to be practiced daily.  As I reflect on this, it is much like an organization that must have a clear mission, and no matter how challenging the path may be, it must remain focused until it eventually reaches its goal.

Elmer Lapeña (elmer.lapena@testech. com.ph) is president of Testech, an electronics-focused group of companies, and chair of the Down Syndrome Association of the Philippines Inc.

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