Living with autism… in love and in pain

By Dang U. Koe, ASP Chair Emeritus.

"Challenging" is an understatement for this mother’s experience, even if she happened to be a graduate of UP College of Medicine who decided to be “just mother” to Alphonse. Our Angel Talker this week, Pinky Cuaycong known as the blogger Kittymama, of her well-crafted Okasaneko Chronicles.

Cuaycong Family

The Cuaycong family tries to face the challenges of raising a family member with autism head on, fueled by their strong faith and love.

In the light of the day the next morning, I wept real tears of joy. After all, we had gone through last year, having him back was a miracle. I knelt on my knees and said a grateful prayer of thanks.

My son was diagnosed with classical autism when he was 18 months old. I had known in my heart that he was different — mother’s intuition, perhaps, plus the added benefit of medical school. But denial took the better part of six months before I could bring him to be evaluated. When the diagnosis came, my husband and I were devastated, and yet, we were also relieved. Autism was something we could work on and defeat. Or so we thought.

Our son, Alphonse, is now 17. Since diagnosis, he has had years of special education, speech therapy, occupational therapy, play therapy, ABA. We have refined his diet, provided him with necessary supplements, modified his environment, and supplied him with books, toys, countless trampolines, and all sorts of stimuli. What we could not afford to buy, we made and improvised. What we could not earn, we borrowed, humbly asking help from my side of the family when we were tapped dry.

Alphonse with the yayas

Alphonse with his brother
Hard Work – 17-year-old Alphonse can be a handful at times, especially with his tantrums and violent episodes. This is why he has multiple nannies (above) and undergoes different therapies such as water therapy to hopefully help ease his mood swings.

Realities

Yet, despite all our attempts to help our son integrate into society, he has remained a child trapped in a young man’s body. Unable to express himself, unable to fend for his needs, unaware of what the world needs and requires from him, my son is and will always be at the far end of the spectrum of autism. He has no savant skills. He cannot do math or calendars or numbers. He has no words to call us by name. And while he is a deeply feeling, sensitive individual, often, he has no means to express these feelings except through rage and anger.

This is the reality of our son’s autism. We’ve lived through years and years of aggression and violence, but one never gets used to them. In the next paragraphs, I have lifted a few lines from my blog to show you a glimpse of what our life is like. Most days, we are fine, working through our challenges, unceasing in toil. Some days, however, turn out to be days of tempest and strife, of grief and pain.

*****

From 21 February 2011

“We were in a middle of a tantrum Sunday afternoon when the doorbell rang. Alphonse was hanging to me by my hair, both hands tangled in the mess of my French braid, which he was forcibly removing from my scalp. He had already bitten me once on the head that day, catching hair and some skin in the process.

"Later that day, he would attack me and his nannies repeatedly, pulling our hair and wrenching our scalps in different directions. In the most vicious one, angry at not being able to ride the car with his dad again and again, he pulled me by my hair when my back was turned to him. He grabbed me by the tail end of my braid and slammed me, back first, to the ground with such force I heard my neck creak and snap in protest.

"This afternoon, after more violent assaults that seemed to come one after another without provocation, the nannies and I stopped trying to reason with him. We retreated to the safety of the schoolhouse while Alphonse was left outside to pace, scream, and vent his ire on something other than our heads. At that moment, as I looked at him through the security grills of the schoolhouse, I realized that we had finally become his hostages. I am afraid of him. We all are.

"And yet, we love him with an ache so deep that just the thought of his pain reduces us to tears.

"It has become harder each day to get out of this vicious circle of violence. I have asked for help from so many people and yet with each turn, we have faced more dead ends. There seems to be no end in sight. We are no longer able to protect ourselves from his fury. We bear with the indignities of being beaten and assaulted by someone we truly, deeply, madly love. Our life is a living hell.

"Alphonse, we love you so much. Come back to us, please.“

From 10 March 2011

“My scalp has a new wound from being bitten and more sore spots where the hair was yanked forcefully many times. Everyone, it seems, has new scratches and bruises every day.”

"Everything is fragile, my friend said to me, and indeed, it is true. Every moment in our lives is a balance of peace and strife, every moment paid for with tears of hopelessness and despair. Many, many times, we are almost without hope. Many, many times, the darkness consumes every single happy thought in our lives.

"We are beaten and bowed. Our backs are bent. Our knees are on the ground. And still we plod on, treading wearily through days and nights of sorrow. All for the love of a child.”

From 22 March 2011

“A lot of people have asked how we are these days and I’ve always avoided answering lest I jinx us out of some good fortune. I seem to do that a lot so I am always wary about giving general and categorical statements on the state of his mental health.

"But the truth is, Alphonse IS a little better, though still far from the way he used to be. Days are easier for all of us as he is constantly kept busy and moving. Nights are harder as his tantrums seem to come on the brink of sleep. I get nervous at night because of this. My anxiety levels shoot up and I almost hyperventilate, were it not most imperative that he does not sense any of my fears. (I am wearing down the nubs of my fingers from using them as replacement rosary beads to calm me down.) Shortly after coming home from our short trip, he directed all his anger at me for three nights- pulling hair, pinching my arms, legs, and belly fat, and kicking me in the gut- but he ignored my presence most of the day.

"His moods are still volatile though more predictable. When he is loud, he is happy. When he is silent and brooding, we know enough to withdraw from his immediate vicinity. He has calmed down a bit but his affect is flat most of the time. His cycles of happiness (mania?) seem entirely artificial to me as I can sense no connection with him to us. He refuses our affections and holds himself at arm’s length from us all the time. And there is always that far-away look, that distant gaze that tells me he is not entirely here with us. Even in moments of calm, he still breaks my heart. I feel like we’ve lost him forever.’’

*****

In January of last year, we started our descent into hell. It took more than six months to come out of that darkness.

We are only beginning to heal now. Each day is precious for all of us. Each day reminds us how far we’ve come and how we made it, with God’s mercy and grace.

And even as I look into the future with hope and faith, with the acceptance of all that our son is and can ever be, I end this on a sober note:

It’s easy enough to talk about the uplifting stuff — the savants with their math skills or pitch perfect singing, the musicians with their intuitive oido, the children who have defied their diagnosis, the “recovered” ones. Why, even I love these kinds of stories; they never fail to bring a tear to my eye. But very few seem to want to know, much less, hear, about the difficulties our children from the lower end of the spectrum face.

The aggression. The self-injurious behavior. The violence. The anger that rages for hours, even in sleep. The destructiveness.

This is the kind of autism no one wants to talk about. For all we continue to fight and believe in, we delude ourselves by ignoring that this is the reality of other families. Families like mine.”

This appeared in the print and online versions of the Manila Bulletin.

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