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On caring for a child with 'awe-tism'

By RICA BOLIPATA-SANTOS Published Apr 05, 2022 5:00 am

On April 2, 1997, at exactly 12 noon, I gave birth to Teodoro. He was full-term, 7 lbs. and 3 ounces, with an APGAR score of 9 and then 10.

I was 27 and had never really been sick. We had been married for only two years, and still very much wide-eyed and foolish. We did not know what tragedy was and presumed none of it would come to us because we had love and it was real.

But Teodoro stumped us from the moment he arrived. When I would breastfeed him, this strange sound would come from his body, like a heaving and wheezing sound. The doctors told us that his lungs had not yet completely developed and that it would pass. And it did.

He did not respond to toys, to the usual stimulations of life but was sensitive to sound and to music, swooning to the latter, his body descending into some kind of stupor. It was impossible to put him to sleep and some nights we hid inside our closet so that his crying would not wake up other people in the house.

It was difficult to find a doctor, and some would take months and even years to just get in line.

He had digestive problems and in one such episode, we discovered an indentation at the bottom of his spine. The doctors spoke of the delay in the closing of his spine and that if it didn’t close, that would have been the death of him. It didn’t dawn on me yet that this was going to be a lifelong journey for me, for my marriage, and our family.

In a way, my youth and general lack of knowledge about life protected me. I never thought the worst of things, never thought it could be bad. Every hiccup explicable, knowable, and solvable. I never considered that any of it was punishment, or my fault, or the doing of a terrible God. All of that would come later and some of it still comes back to haunt me when I am weak.

In a way, my youth and general lack of knowledge about life protected me. I never thought the worst of things, never thought it could be bad.

In 1997, there were so few resources for finding my way through. Looking back on it now, most of the things I found were accidental, happenstance, or sheer plod.

I researched his changing conditions on my own. I built my own library of books to map a way through. It was difficult to find a doctor, and some would take months and even years to just get in line.

The costs were high and the tests alien to me and frightened Teodoro. While waiting in line, waiting for some kind of guidance, most of life’s decisions for his one precious life were put in my very tiny, very very tiny, very, very, very tiny small hands.

On April 2, 2007, on his 10th birthday, World Autism Awareness Day was declared. I took it as a sign of the universe telling me I will never be alone.

But guardian angels would come, and tell me like it is. At coffee with a beloved doctor who couldn’t help me as her specialty was in something else, I bemoaned the lack of guidance from doctors, the guessing I had to do in the everyday, and she held my hand and said very clearly and firmly: you are the leader in this journey and no one else. The doctors will see him once a year but you will see him every day and learn every nuance of his expression and his person. You are his person.

And she warned me about something else, too: this means you will make sacrifices and you will not fulfill all your dreams. You can walk away, and other parents have, and that’s a sacrifice, too. But you will have to decide what makes your plate and if you’re willing to live with the poverty and difficulty of that plate.

There might be rewards (after all, you can always make sure there is dessert on that plate), but you cannot do it for the rewards. You have to do it because it is what you want to do.

That was sobering, even if it was frightening but I committed myself to that endeavor and I learned to trust myself and my instincts and ultimately, with such breathlessness, trust in the power of love. I mean, we say such things in movies and we think them when no one is watching, but I took them to heart and affirmed that no matter what happened, love would save my son.

On April 2, 2007, on his 10th birthday, World Autism Awareness Day was declared. I took it as a sign of the universe telling me I will never be alone.

In the darkest days of despair, I remember deciding I would call autism, awe-tism. It is a hopeful shift in perspective.

That plate, indeed, is poor, full of expenses and the cost of worry on my heart and my person, as his person. In the 25 years that have passed since he was born, there is not a day my heart has not been in siege.

I have no idea how it continues to tick. I suspect it survives on the strength of my vocabulary. One has to interpret a child with autism and the words you use make all the difference. You need to know the difference between illusion and hope when you are faced with difficulties.

Today, Teodoro’s body challenges him but his autism protects him from depression or anxiety, and even pain. What words to describe this incongruity? I could call it senseless but I could also call it “gift.” You tell me, illusion or hope?

In the darkest days of despair, I remember deciding I would call autism, awe-tism. It is a hopeful shift in perspective. Here is my everyday dessert that makes my plate full and meaningful. How in awe I am of my son and his spirit that continues to shine a light on all my days. How in awe I am of science and progress and medicine and kindness.

Teodoro enters the mall like he owns it, all the security guards used to his gregariousness and weakness. How in awe I am of those who help me care for him, sometimes much better than I do. How in awe I am that Teodoro continues to trump and challenge doctors. Half of me smiles in triumph when they cannot figure him out

Indeed, his fullness is much greater than any set of words you can come up with. There is only so much we can know about the world and on the edge of knowledge are far more mysterious and delicious things. The doctors learn from his mystery, too.

On World Autism Day and every day, let every day be an opportunity for us all to be in awe, of a special child, of any child, of every child, of every child still living within us. The future is full of children with autism who need our acceptance and understanding. Even though there are kind people there are people who still look at us in public with anger and incomprehension.

Let us work every day towards a more inclusive society (have I told you what my dream mall for special children looks like?), and affirm yet again, that nothing fancy will save the world. Only love. Happy birthday, Teodoro.