Serendipity: Our Family’s Special Journey Through Autism

My husband and I are both practicing physicians. We are blessed with two lovely children – Raphael and Ysabell. Sometime in 2001, I decided to lay low in my medical practice and devote more time for our family. It came as no surprise to people close to me for they had always known that my husband and I put our family first at all times. We moved to a home in a more quiet suburban metro, to allow more space for our growing children. We agreed that the arrangement was temporary, and that I would resume private practice after 5 years, when the kids would already be in school. Everything was just perfect.

The Symptoms
Both our children loved to sing and they did sing rather well even at an early age. Most days were filled with songs and lullabies. We hardly noticed at first that that was all that Ysa did all day – sing. Even before age 2, she memorized all Barney songs and rendered them heartily every waking moment. We barely noticed that she would not answer when her name was called; we thought she was just “suplada” like some older women in our family. She called me “Mama” but we failed to see that she was just mimicking a TV ad, and called every one else by the same name. Her brother would often bring her out to play, though she preferred parallel play as expected at her age. Often times, she refused to follow instructions and would throw temper tantrums when she couldn’t get her way. We thought it was her personality and more discipline would be the answer. She was at par, if not advanced, in her gross motor skills though we were very much surprised at her energy. She had no sense of danger, no fear of getting hurt. She never got dizzy when she would spin even for a long time. She was simply amazing! She was definitely not mentally retarded therefore we were not alarmed. We were confident the words will soon flow from her lips, she would talk to us in her own time.

All those times, I kept bumping into her would-be developmental pediatrician, Dr. Francis Dimalanta. We went into specialty training together - in the same hospital at about the same time. Later we had our clinics in the same building and we’ve shared innumerable elevator rides. In December 2002, Ysa was age 2 years 3 months, I asked him on my way to the elevator, how many words should a child have spoken at that age. He gave a reference of about 50 words by age 18 months. My daughter just spoke “hi” and “bye-bye” then. A few months later I asked him again, and he replied there should have been word-combinations by that time. My heart sank, my daughter was stuck with just “hi” and “bye-bye”. My husband and I discussed the situation and soon after we were in Dr. Dimalanta’s office for consultation.

The Diagnosis
Communication Disorder, T/C Autism Spectrum Disorder. Ysa will be under observation. Dr. Dimalanta explained that he needed more time to be definite. Meanwhile she was immediately referred to Therapy Works in Parañaque for behavioural, and later for speech therapy. Ysa went there 3 times a week and since we lived in Dasmariñas, Cavite, that meant 3-4 hours of travel for an hour of therapy each time. My husband and I accompanied her to each therapy session and we were very pleased with her remarkable progress during the first few months… then there was nothing.

After The Diagnosis, Our Journey Began
Outwardly, it would seem like we took the diagnosis rather well. We were calm and just carried on as we were told best to. We actually didn’t know much about what we were up against. Autism during our medical school days was not given much attention. A short paragraph under psychotic disorders was all that was dedicated to it in our Pediatrics textbook.

Rather, we hung on to everything that her developmental pediatrician and therapists said. We bought every material, every contraption that might help, we followed their instructions to the letter… all in the hope that it was something fleeting, something that she will grow out of in no time, and the sooner she snapped out of it the better. For us, autism didn’t have a face.… Until she failed to show any more significant progress. Then the situation started gaining reality. Questions regarding her future, rather its bleakness and uncertainty, started to creep in. We looked beyond the horizon and were faced with a blank wall. We searched for answers and found none. I slowly plummeted then into the depths of despair. I knew my husband was as much bewildered, but he was more collected. He proceeded with his usual calm and became the family’s stronghold.

My husband and I went through a sort of denial. Though we constantly searched for solutions, we didn’t in truth talk much about the real problem. Being the health professionals that we are, we kept our distance. We never took the reins… but our son Raphael would not be denied. He was only four when Ysa was diagnosed with the disorder, but he was already very curious and involved in his sister’s therapy sessions. He would listen carefully to what the therapists would say and apply them to Ysa at home, patiently and consistently. He coaxed her to play and to communicate with him like only children could… And I should say he was successful. He was the only other person in her world. She would listen to him and he would rejoice when she followed his lead. He barely noticed those times when Ysa wouldn’t respond to his prodding. He was just so much into her. If she had to live by a routine, he also followed a schedule so they will always be together.

As for me, my life stood still. I refused to go out. I refused to work. I would just stay with the children and watch them from a distance. I attended to their needs, looked up schools for them, went to school with them everyday and even discussed with their teachers and professional caregivers the details of their progress… but I’ve always kept my distance. The distance afforded me the luxury of not dealing with my feelings straight on. I had to, I didn’t know how.

I was a very strong person before all these. Much of what I had become, I got through hard work and perseverance. Several times I had to prove myself and I could proudly say that I delivered. Although mine was never an easy life, I maintained an open mind and a positive outlook. My decision to stay at home was made freely and willingly, with the hope of picking up where I left off once the kids are ready. But long after the diagnosis, when Ysa was not getting better, the thought that I might not be going back at all was a bitter pill to swallow. Not because I am too eager to get back on my career path, but more so because I had been robbed of the freedom to choose and had my back against the wall. It felt like a part of me had to die and I mourned for it a long time.

In October 2004 my husband decided to work overseas for a few months. The Philippine economy has gotten bad and he was the only one bringing money to the family coffer. Our basic necessities plus Ysa’s special needs posed too much burden on our already strained budget.

Surprisingly, the separation turned out to be our family’s first step towards recovery. My husband had a break from the domestic problems directly breathing down his neck whereas I, I had to rediscover my strength once left on my own. That was the time I confronted Autism right in the face. I devoured books and surfed the net for answers and more answers, then passed them on to my husband whilst afloat some foreign seas. Being doctors, we had the privilege of knowing what “unknown cause” and “associated factors” literally mean, and we were spared the self-blame some parents unwittingly had to contend with, which only added to their despair. We explored all possible management programs – what were available and which we could apply.

I was relieved to find on the web adults with autism actually and actively living their lives. But I realized these were achieved after years of treatment and hard work, by unrelenting parents and dynamic teams of professional caregivers, which only inspired me to move further ahead with my pursuit for cure. I looked into similar provisions close to home. I was happy to learn that the Philippine constitution actually boasts of at least 32 laws that mandate the support, protection and accommodation of disabled persons starting as early as 1968. However, despite the substantial number of existing laws that promote the rights of disabled persons in the Philippines, I also found out that these are mostly not being complied with. Families of Filipino children with disabilities really had to shoulder much, if not all, of the financial expenses entailed in extensive therapies and special education beyond the challenges of daily living that confronted them. Undaunted, we continued to give Ysa all the best that our pockets could afford.

Acceptance
Devouring reading materials written by health care professionals dealing with and parents of children with autism, as well as of individuals themselves afflicted with autism, I have gradually immersed myself in a completely different world – their world, and I have come to accept. Acceptance as not merely accepting the diagnosis, but also embracing the child within, my daughter.

I began looking at her and actually seeing her, listening to her voice and in fact hearing a message, hugging her and saying that autism didn’t matter, I loved her just the same. Small gestures that spelled a world of difference I would learn later, because soon enough Ysa started to show some real progress with her communication skills. Dr. Dimalanta said that Ysa seemed to be out of the Autism Spectrum. But then it did not make a difference anymore. I love my daughter as I love my son, autism and all.

Seemed I had a lot to learn from our son Raphael who probably felt this way all along. Being a child himself, his brotherly love was untainted by worldly expectations. He only knew of his love for Ysa and his heart steered him to the right course. My husband and I discussed this lengthily and from there our family moved on.

I believe it was no miracle that Ysa made remarkable progress at the time that we came to accept her condition. It was more of having acknowledged her condition as an integral part of her and learning to appreciate her own way of being. In our search for a cure, we have found our daughter. Who and what she is…is the only person she has to be. She is our daughter and we are one with her in this journey.

From the pits of depression, I rose and gathered the pieces of my life together. I may follow an entirely different path now but it is not lacking in any way. There was a time when I wouldn’t hear of Ysa being called “special”, but that’s what she really is … our very special daughter. Experiencing Ysa has enriched me and made me a better person. She showed me love and concern without hesitation and inhibitions, she made me feel hope and faith are made of flesh. Our children Raphael and Ysabell turned our lives around and allowed us a glimpse of God at work in them, healing our spirits and nurturing our souls.

I realize my great fortune in having such an extraordinarily special family. Nowadays I would ask myself, am I deserving of all these grace? Am I worthy of this task of caring for a couple of God’s precious angels?

At times when I would muse and wonder how different it could have been if I had a full career, I would see images of Ysa hesitantly running a few steps ahead of me… She would take a few steps, then suddenly look back and smile at me, and with that confident smile on her face, she would take a few more steps ahead and again look back to see if I was still behind her. The knowledge that I am there would give her the courage to move forward. What mother would trade that even for the fanciest career in the world?

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