When a baby enters the world we listen for their first cries, count their five fingers and toes, and congratulate the mother on the birth of her healthy baby. We envision a future ballplayer, a ballerina or a builder. At that moment, everything is right with the world. A miracle has just taken place.
One of the most fulfilling experiences in life is to be a parent, however, it is not without its challenges and heartaches. During these trials, a parent’s identity is revealed. Most parents will do anything they can to help their child succeed. Virginia Kinyanjui is one of those parents. Although her son was diagnosed with Autism Spectrum Disorder (ASD) at fourteen months old, she persevered in supporting him in every way possible. She was not prepared for her “beauty for ashes” moment that was to come.
Virginia came to the USA from Kenya seventeen years ago in search of the American dream. She taught high school math and later became a nurse. Her third child, Lance Kinyanjui, turned five years old two months ago. He has an eighteen year old sister, Annette, and an eleven year old brother, Shawn.
Lance was born a healthy bouncy baby boy. His infancy was uneventful, and he was a very easy going child. He rarely cried or laughed. He always seemed to be in his own world. When he was around ten months old, it slowly started to become obvious that there was something different about him. Virginia explained:
“He was quiet and never babbled. He seemed unaware of what was going on around him; he never seemed to know us. He had no eye contact and didn’t respond to verbal communication. This was a very dark period for me. Even his brother, who was seven at the time, would comment on how Lance didn’t play like the other babies. This was the start of my many visits to the doctors (developmental pediatrician, neuropsychologist, neurologist, geneticist and audiologist).”
It is difficult to diagnose ASD since it can represent a wide range of degrees of severity and types of symptoms. There is no definitive medical test that can diagnose autism – no brain scan or blood test. The diagnosis is made in a clinical setting by psychologists or specially trained physicians. It is made on the basis of observation and interaction involving both judgment and guesswork. Lance began early intervention at 12 months, and at 14 months a neuropsychologist confirmed Virginia’s worst fears. She said that even the doctor was shocked at how early the symptoms showed up in Lance. Because it is wise to get a second opinion, Virginia contacted a pediatrician at Tufts Medical, and he confirmed the ASD diagnosis. “I was even more heart-broken with the confirmation of the diagnosis because all along I was praying that it would turn out to be a misdiagnosis,” Virginia explained. She took it a step further and participated in a research study at Boston University. They also confirmed the ASD diagnosis.
While reflecting on her pregnancy with Lance, Virginia was hopeful that he would be born healthy and smart. After the final diagnosis, her hopes were dashed and she was heartbroken. She felt physically, emotionally and financially drained. She was balancing two jobs, attending all of Lance’s therapy sessions, and trying to spend quality time with her other two children. “My then 7- 8 year old took it the hardest. He always complained of being forgotten and ignored,” Virginia lamented. She confessed that the diagnosis terrified her, but she didn’t have time to cry. She said, “I had to dust myself off and start fighting. As a healthcare professional, I knew that the earlier Lance received intervention, the better he would be for it.”
Along with Lance’s siblings, Virginia continued to closely watch his development. When he turned two-years-old, they realized that he could read. This caught them by surprise because no one had ever taught him how to read. Since he wasn’t talking, Virginia purchased an iPad for him. He was now able to communicate to everyone in the family. He also used refrigerator magnets to make words and then sentences. He would read books and act them out, yet he still couldn’t talk. For example, if the book said clap your hands and stand up, he would do exactly that. At three years of age, he received an additional diagnosis of hyperlexia – an intense fascination with letters or numbers and an advanced reading ability. He formed his first audible word when he was three-years-old, and according to family members, he hasn’t stopped talking!
After reaching this important verbal milestone, his family realized he could do simple addition and spelling. Currently, Lance can mentally calculate addition, subtraction, multiplication and some division. He has also taught himself to play the piano. He surprised everyone when he started playing melodies like “Old MacDonald”, “We wish You a Merry Christmas”, “Havana”, and many more on a dollar store keyboard! Virginia believes that he learned how to read sheet music from YouTube, because no one in his family can read it. She says that he is also very good with directions. She calls him her “GPS” because he has mastered routes and exits to places that he’s visited – even if he has only been there once.
When it was time to enter the public school preschool program, Lance was given a routine intelligence test due to his autism diagnosis and for proper placement at school. According to his age, he is a preschooler. His test showed that he was at the second grade level in math and is reading on a fourth grade level. The doctor recommended that he should be moved up a grade to Kindergarten, and the school agreed. His testing found that he has a very superior intelligence and is gifted. He has an IQ of 135 which qualifies him to join the Mensa Society.
If you were to meet Lance today, you would see that he is a typical five-year-old and is indistinguishable from his peers. He likes gymnastics, playing soccer with his eleven-year-old brother and playing piano. He loves his pet cat ‘Dan Lollipop‘. He now shows no apparent signs of autism.
When asked about her journey, Virginia explained that she believes that God allows things to happen for a reason. She would like to connect with other Kenyan parents who have gifted students, so they can learn from one another. Gifted and talented programs can be expensive, and at this time Virginia is looking for a school that will benefit Lance. She hopes that her story will encourage all parents to be unafraid to seek help for their child. As Nelson Mandela once said, “There can be no keener revelation of a society’s soul, than the way in which it treats its children.”