The World I Want My Son to Grow Up In
My hope for a more inclusive Philippines.
I’ve observed that one of the most popular questions often thrown in autism Facebook communities is about what their greatest fear is for their children. Unanimously, the answer to that question would be for the well-being of their autistic children in case they pass away.
They often grapple with the reality of who would take care of their kids when the inevitable happens.
It’s the same for me, for us at home.
I share the same fears as my fellow autism parents:
Takot akong mawalan ng trabaho dahil baka hindi ko masuportahan ang mga pangangailangan ng pamilya ko.
Takot akong lisanin itong mundo na ito at walang mag-aalaga sa anak ko.
Takot akong makaranas s’ya ng kalupitan pag wala na ako para protektahan s’ya.
Takot akong makaranas s’ya ng diskriminasyon at hindi mabigyan ng pantay na karapatan.
Takot ako pag na-iisip ko na sa future ay may mga bagay s’yang gustong gawin pero hindi s’ya mabigyan ng pagkakataon na gawin ito dahil sa kalagayan n’ya.
Takot akong isipin na hindi n’ya makayang intindihin ang mga nangyayari sa paligid n’ya pag wala na ako.
Higit sa lahat, bilang magulang, takot ako kapag naiisip ko na walang magmamahal sa kanya na kagaya o kapantay ng pagmamahal ko.
Then again, because we live in constant fear, we are fueled by the dream of seeing a more inclusive and rosier future for our children here in the Philippines.
Whenever Mommy Khris and I talk, we’d always touch on the topic of the future, when we are already too old to work or when we are no longer in this world. We are doing what we can to prepare Miguel for the future; we want him to be fully independent and be able to care for himself. We want him to be able to pursue the things that he wants and hopefully be able to work without experiencing prejudice.
However, we are also fully aware that we can only do so much in terms of the controllables. We can’t predict what will happen in the future. Nevertheless, we are hoping that Miguel’s little brother Rafa will always be there to support him, maybe check up on him if he is doing fine. We also want Rafa to have a life of his own and to pursue his own dreams.
The present itself is too much to handle; the mounting cost of therapy, the lack of therapy centers and specialists, the scarcity of development experts, among the many other things that we have to think about on a daily basis. I used to not compute our annual expenses for occupational and speech therapies. I just pay the bills when the billing statements are sent to me.
In one of our conversations while eating dinner, Mommy Khris told me that we were paying more than P100,000 each year to one therapy center alone. I was surprised, because I didn’t know that it was that much.
The monthly expenses didn’t seem too much, but when you add everything, you’d be surprised that it was that high. And the cost goes even higher each year, thanks to inflation. This is the same challenge for other special needs families.
On a further note, I am also one with the whole autism community in advocating for the following:
A supportive society that will give opportunities to special needs individuals. It need not be anything big. A good example would be restaurants that hire autistic individuals
A supportive community that will extend kindness to families and guardians of special needs children.
A home for individuals like my son. I’m thinking of something similar to a home for the aged, but a specialized facility that would care for individuals with special needs.
Stipend from the government to help needy families with therapy sessions, education, etc. If not that, then I hope there would be more government-funded therapy centers to help bring the cost down.
A big step towards this call would be the recent approval of Senate Bill No. 1822, or the National Autism Care, Support, and Inclusion Act, in support of care and inclusivity for persons with autism (although I hope the government can also include support for other types of neurodivergent conditions).
I just hope our government can implement this at the soonest possible time. This is an urgent call. In fact, I know some parents who had to stop therapy for their kids because they couldn’t afford the expenses anymore.
Anyway, I’m keeping my fingers crossed and hoping for the best.
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I feel you, Ivan. My eldest has been diagnosed with ADHD, and my secondborn is neurotypical. We have to undergo years of occupational and speech therapy for my eldest. Although my eldest is now enrolled in a traditional school, he is having a hard time forming social bonds. The fear of my son's career and social acceptance is always there at the back of my mind.