Look Into My Eyes

It was late afternoon in early December. As the developmental pediatrician assessed my son, B, my husband and I looked on with bated breath. At two years and five months, B was hardly intelligible, speaking jargon, couldn’t keep still for two seconds. We watched as the doctor coaxed B into holding a pen. He gripped the pen with his palm, his fingers skewed and totally unable to control it. She tried to get him to build a tower of blocks, but he hardly gives it a second glance before whizzing about the clinic, staying at each task for only two or three seconds at a time.

B had seemed normal, intelligent and healthy until he was 8 months old, when he caught the measles from a girl with a half-wit mother irresponsible enough to let her daughter stay in the doctor’s waiting room with other kids, even when SHE knew that it was the measles. Even now, just thinking about that fateful day’s events still makes my blood boil with anger, frustration and regret.

After his terrible bout with measles, and barely two weeks later, with roseola infantum, B was not the same baby. He seemed less aware of us, he lost a lot of weight and he seemed to be quieter. We thought he was just taking his time recovering from his first real illness, but as the months passed, he began to turn himself upside down and get extremely active. B being our first child, we had no way of comparing his development with that of other children.

Meantime, O and I were both busy with work and other things. It shames me no end to admit this, but I was too distracted by my career to notice that B didn’t respond when he was called, he didn’t know his name or ours, and he still wasn’t making a lot of sense when he tried to talk. Looking back now, all the warning signs passed me by unnoticed.

It had been increasingly difficult for us to take B anywhere. His behaviour was straining our own marriage and testing our parental fortitude. Even though I had breastfed him till age two, I had not had any meaningful eye contact with my only son. My dreams of reading him stories at bedtime, with him sitting quietly and contentedly on my lap, had all but vanished. He could not sit still long enough for me to even tell him I loved him. I was feeling distinctly unloved as a mother, and wondered why other parents had the consolation of being hugged and kissed by their young, when I could not feel even a hint of gratitude or affection from mine. O and I knew something was wrong, despite vague assurances that “boys develop slower than girls” and “he’ll get round to it eventually.” Our voiceless fears brought us to Dr S.

After an interminable hour of tasks and questions, Dr S faced us and spent the next half-hour explaining the different disorders which were usually suspected in cases like this. She wrote them all down on paper so we could see. She looked at us kindly, paused, and slowly circled a word that would change our lives forever: AUTISM.

That was 3 years and four months ago.

This morning, B got up as usual and cheerfully came into my room saying, “Good morning, Nanay!” (Nanay is Filipino for Mum.)Then he went down for breakfast before getting himself dressed for school. As we met at the foot of the stairs, he surprised me by saying, “Nanay, I love you very much.” My eyes strained to cry but I held back my tears. He hugged me and then said as we broke apart, an impish look in his eyes, “Or maybe I love you very small?” Ha, ha, ha, I said. Too late for that, sweetheart.

I sat beside him as he put his shoes on, and he chattered about what he would do later in drama club and asked if his friend J could come over to play again next week. Before we said goodbye, O and I prayed a morning blessing over B and his baby brother, E. This time, for some unfathomable reason, my tears refused to be held back and I told O, I don’t know why I’m crying. Sitting beside me, B looked into my eyes and gravely asked, “What’s the matter, Nanay? Why are you crying?” I’m just gonna miss you today, sweetheart, but I hope you have a happy day in school, I replied, trying not to upset him. He then gave me a reassuring smile and said, “Don’t worry, Nanay, I’ll see you later.” Kisses and hugs all round, then he was off to school with O. With E busy playing, and no one else around, I gave my tears free rein for a few moments.

Autism Spectrum Disorder, or ASD for short, revolutionised the way O and I approached parenting. It transformed our vision for the kind of persons we would mold our children to be. Instead of having them value success or accomplishment in their pursuits, we realised that all we wanted were children who knew how to love and care, to feel, to know what it means to be human. We became very hands-on parents, very open with our emotions and physically expressive of our love for our son and for each other. We taught ourselves to be experts in our son’s disorder. We devoured books as we found them.

And ASD changed the way we view life itself, our appreciation of human emotion, sensory experiences and relationships, the things which make us truly human. B started having weekly occupational and speech therapy soon after his diagnosis, and I put my career on hold so I could transform our home into a fun, safe, 24-hour therapy center of sorts for B. We played games and obstacle courses, played to his strengths, helped him develop his immature skills, guided him through his emotions and gently taught him how to manage them. B responded to all we did, becoming more and more alive, more and more human, more and more PRESENT, by the day.

At four years and ten months, B was discharged from all occupational and speech therapy, with his condition so vastly improved from the initial diagnosis of classic autism that it was declared to be virtually undetectable, except by trained specialists.

Now, just two months away from his sixth birthday, B attends Year One in a mainstream primary school here in England— reading, writing and spelling extremely well, enjoying new experiences and surpassing everyone’s hopes and expectations. He helps around the house and is quite independent: he makes his bed, dresses by himself, sets the table, brushes his teeth, clears away his toys. He is always ALWAYS laughing, smiling, giggling at some joke or prank. His pure, innocent voice fills the room when he sings along to his favourite CDs, and despite his young age and the fact that he has never had vocal training, he is completely on-key and knows all the words! With his innately shy temperament, he still struggles in developing social skills, finding it challenging to make new friends in a new school, a new country, with people talking in strange accents and saying odd phrases never before encountered. Reaching out to strangers and making new friends is a concern for him, but isn’t it so for most of us, as well?

Truth is, I cry for joy today, out of gratitude for this unexpected gift, because B said he loved me. Not because it’s the first time he’s said it, but because it has just struck me how often he has been saying it, and so earnestly. Because he is forever hugging and cuddling and tickling and squishing, and asking to be hugged, cuddled, tickled and squished back. Because he listens, he understands, he speaks, he connects. Because he cares, he empathises, he responds. Because he looks into my eyes and knows he is loved.

All this, when he shouldn’t be able to. All this, when autism dictates that he should not. ASD should have robbed me of my son’s hugs and kisses, of the loving look I see in his eyes when he gazes back at me, of my hopes for his life as a happy, well-adjusted person. ASD could have taken my son away from me, and it should have, but it did not. It has failed, miserably. For my son is here, and he thinks, he feels, and he loves.

This weblog, then, is the story of how B continually challenges and re-defines the boundaries set before him by ASD, how he confronts his fears and limitations, defies expectations, disproves human theory, and attests how foolish it is to put the power of human love and divine intervention inside a box. It is the story of my son’s quiet victories and triumphs, his momentary setbacks and defeats, his courage and his persistence.

I look into his eyes, and he looks back into mine. Each soul mirroring the other.

It is then that I know: We love, and so begin to live.