Like most parents, we welcomed our first new born with great excitement and anticipation. We did the usual things parents-to-be do - getting ready a nursery with decorations, furniture, toys and clothing. We read books and went to classes on how to raise the boy in his first year. Little did we know none of this would prepare us to cope with what lay ahead. Vincent was born in the US full term without complications. We brought him back to Singapore when he was 10 weeks old. Our aim was to bring him up in a multi cultural and multi lingual environment.
However, when he was three months' old, Vincent became a regular visitor to the doctor's clinic. He was diagnosed with spleen and liver enlargements that required weekly, monthly then half yearly lever function blood tests. His enzyme was at 800+ while the normal kid should be below 50. His enzyme level stabilized when he turned three.
At 14 months', he got an infection from a make up BCG injection. This required general anesthetization and operation to remove the pustule. At two, the doctor found that Vincent had a heart murmur. Thankfully, it was a benign murmur put down to growth. At 3 , Vincent fell over a roadside curve which required three stitches above his right eye brow. At four, he had high fever for two consecutive days and had to be admitted to hospital. In between, there were the common flu and colds.
I imagine many parents have gone through similar scenarios. But these weren't the challenges that confronted our beliefs, tested our strength, and changed the course of our lives. Vincent had met all developmental milestones until we noticed he was different at a year and half. He had no language. This literally meant he did not utter a single comprehensible word. He did not call Mum or Dad. The doctor told us not to worry as boys normally develop language skills later than girls.
We became really worried when he still did not have any language at two years old. This started another stream of consultation with specialists in ENT (Ear, Nose and Throat), neurology, psychology, and psychiatry. It took us more than two years to search, schedule and complete the evaluation. Vincent's hearing was tested. The neurologist couldn't find anything unusual from the visual evaluation and referred us to a psychologist.
The session with the psychologist was disastrous. She was more than one hour late for the appointment. Vincent lost patience waiting and wet his pants during the evaluation, though he had been toilet trained. The psychologist prescribed him as having a "Behavior Disorder". This brought disbelief and confusion to us. The only positive outcome was a list of recommended schools that would accept kids like Vincent.
A dark shadow
We then sought advice from a renowned psychiatrist. I still vividly remember the meeting over Vincent's diagnosis: Pervasive Developmental Disorder, Not Otherwise Specified (PDD NOS). In ayman's term, Vincent was severely delayed in development but the doctor couldn't pinpoint the cause. The psychiatrist's response that Vincent might not ever be able to live an independent life cast a dark shadow over the family.
In between the numerous evaluations, we managed to enroll Vincent into a private school with a special education program starting at age three. This marked the beginning of ever lasting therapeutic and learning programs for Vincent. To augment the learning of spoken language, Vincent was introduced to sign language and so were the parents. It was one of the happiest moments in life to hear Vincent call out 'Mum' and 'Dad' at the age of three years and four months. Though his language advanced from one word to two words level in relative short time, the speed of learning stalled. The speech pathologist advised that he needed to improve his gross and fine motor skills before language learning could accelerate.
At the strong recommendation of the teachers and specialists, we moved back to US when Vincent was five. It started a new chapter of life for Vincent and the family. Through references, we were fortunate to find a developmental pediatrician who specialized in kids like Vincent. She did a thorough evaluation of Vincent and diagnosed him as a kid with Autism Spectrum Disorder (ASD). Autism is a lifelong developmental disability that typically appears in early childhood. Vincent was literal with minimal imagination and common sense, and was inflexible to change. He had no eye contact, could not read social cues, had Attention Deficit Hyperactive Disorder (ADHD) and Obsessive Compulsive Disorder (OCD), showed severe delay in communication, and had gross motor and sensory dysfunction.
He exhibited symptoms of a typical autistic kid, except he was not hiding in a corner. On the contrary, he was very sociable. We started a series of therapies with Vincent. He attended private speech and occupational therapy for a year until the school could effectively address his needs. He also took herapeutic horseback riding once a week and swimming twice a week. Horseback riding helped calm him down and regulate his brain while swimming improved gross motor skills. He did both activities for more than five years.
Seeking the aid of Mozart
During these five years, we performed Patricia Wilbarger brushing at two-hour intervals to reduce sensory dysfunction, even when we were out. At the same time, he was put under Auditory Integrated Therapy (AIT). He listened to Mozart with filtered tune that was supposedly to stimulate brain function differently from regular music. Later on he had music therapy to inspire creativity. He attended 15 interactive metronome sessions to increase attention span. At the end of three months' intensive therapy, he could clap 1,500 times nonstop and consistently. We also engaged a motor specialist to improve his handwriting. The US law mandates public schools to provide support for kids with special needs. Vincent was integrated straight into mainstream kindergarten.
With limited language, mainstream kindergarten was extremely challenging for Vincent. He was easily distracted and so disruptive that he had to be brought out of the classroom. Frequent breaks or walking the school hallways were a daily event. We had to cross our fingers every day and pray that he had a good school day without incidences. With medication and consistent support, Vincent learned the daily routines and began picking up language gradually. During the First Grade language test, he scored at 1%. This meant in a hundred kids, he was the last in language proficiency. At home we worked on cognitive skills, basic and spatial concepts, attributes and functions with flash cards, and a daily follow up of the school's teaching. We also taught him phonics, time, numbers, size, money, etc. It was daunting to teach him 10 cents have more value than 5 cents when the 10 cents coin is smaller than 5 cents. Vincent's language improved to 25% by 2nd Grade. He advanced it to around 50% by the end of 4th Grade, well beyond any specialist's expectations.
Once Vincent picked up languages, he participated in classroom activity with less and less assistance from the special education teacher and the education aide.
Shifting focus
The focus for IEP has shifted to social interaction and communication. Socially we have gone through times than language learning. During kindergarten, neighbor's kids called him crazy and dumb. Fortunately, the name-calling was only hard on us parents as Vincent could not understand them. He was never invited to a birthday party from kindergarten to fourth grade. The school speech therapist drafted programs for Vincent to role-play and sat with him during lunchtime to coach him. We read books and wrote Carol Gray's social stories to demonstrate to him the broad social rules of behavior for each occasion and getting along.
He joined social skills training at a hospital and in the summer camp. Nothing came easy to Vincent. Everything had to be taught. He needed - and needs - written rules and demonstrations to guide him through each social occasion. It was hoped that he would be able to apply instantly once he gained broad base foundations. All the practices and coaching paid off when Vincent finally made three friends at Fifth Grade.
He was invited to their birthday parties. He invited them back for sleep over. He made a couple more friends at Sixth Grade. He maintained two of them as his buddies with whom he talked during lunchtime and played with after school. He no longer was a lone ranger or a target for bullies at school. We were fortunate that Vincent reacted positively to all the therapies and interventions. The developmental pediatrician was very pleased with Vincent's advancement. A psychological evaluation showed that Vincent continues to function in the above average to superior range of intelligence. He was no longer exhibiting significant discrepancy between verbal and nonverbal abilities. The doctor changed Vincent's diagnostic to Asperger Syndrome, the mildest form of the ASD, at the age of nine.
Fulfilling a dream
After many years of challenges, we started treating Vincent more like a normal kid. There are set rules on TV time. He had an allowance to purchase his favorite games and toys. He learned how to do laundry, use the dryer, fold clothes, wash dishes and cars, sweep floors, operate the vacuum cleaner, and change light bulbs, etc. Recently, he started preparing his own breakfast, cooking instant noodles, frying eggs and using a knife.
He needs these skills when he goes to college. We expect him to behave appropriately in public and at gatherings. He said he was responsible for his schoolwork so we stopped checking his homework or reviewing with him before tests. His duty as a student is to perform well academically and maintain his honor roll. He continues reading voraciously, especially science and nonfiction books. As he is not athletically inclined, he has chosen fencing as his only form of sport.
For many years without changing, his goal is to become a Zoo Veterinarian. He is on track to fulfilling his dream. After difficult processes of denial, blame, frustration, anger, acceptance and resolution, we have come to terms with his diagnosis. While we search for treatments that best suit him, we accept, most of the time, who he is and what he will become. We have vowed to provide him whatever normal kids enjoy and we expect him to perform no less than other kids' of his calibre. We understand there are more challenges ahead of him and us but we are confident he will lead a happy and independent life.
