When I first learned my son Cash’an had autism, I didn’t want to talk about it. As a trained print and broadcast journalist, professional in communications, and even as an actress who has taken center stage to express my thoughts, emotions and perceptions of the world around me, the last thing I wanted was public focus, pity or random questions with no apparent answers. I had no perspective, no message for TV cameras, no 10-inch newspaper story on how to deal with the fact that my baby was afflicted by a disorder that I, for one so well-read, had never even heard of. I also knew that I had to use every bit of my training to get knowledge - quick. Still, it was in silence.
So there I was sitting up many late nights perusing online websites, books and magazine articles – anything I could get my hands on, to find out more. I did this as my then 2-year-old son sat in his room in the wee hours of the morning, as he often did, lining up toys and anything else he could find – a spoon, a sock, a comb – in intricate patterns that I dare not alter. Changing this design pattern would make him flustered and determined to start the process, with the same order and precise detail, all over again. I’d learn in my research that children with autism not only had irregular sleep patterns and rigid behaviors, but sensory sensitivities, loss of language and lack of cognitive ability to learn in the traditional way how things work in the world. I also read that they are very intelligent – many exceptionally so. As I watched Cash’an one of those late nights, it hit me.
There were many children like my son, who had a world of potential in front of them, but needed someone who loved them and were willing to tirelessly tap into the universe to find ways to help them. I thought: “What happens to those who don’t have that – the ones neglected, abused or hidden because they are misunderstood?”
Coming from a Jamaican heritage, I realized that in the Hartford area, which boasts the second largest West Indian population in the country, many of us don’t air our so-called “dirty laundry" because we are often too proud to let anyone know that we have a child perceived as less intelligent or different from their peers. This was even more apparent as I went to autism conferences and seminars where I rarely, if at all, saw anyone of color. Where were other African Americans, Latinos, Asians or West Indians? My son couldn’t possibly be among a few, could he? I discovered that in fact, there are more boys diagnosed with autism than girls, but children of color are often diagnosed two to three later than their Caucasian counterparts. Six years later, the statistics are still the same.
I decided for Cash’an and his future, and other children like him, I had to try to reach opinion leaders, educators, policy makers, doctors, community leaders and others who could perhaps make a difference. I was never in denial, nor was I ashamed, but something inside me knew that I could not be silent; that I had to find a vehicle to galvanize other parents searching and wanting desperately to save their child from isolation.
After doing TV and radio interviews, writing articles and launching a developing initiative to reach underserved populations, I have the pleasure of participating in the Mommy Minute blog for CTNow and The Courant.
My goal is not only to inform, but to encourage loved ones that people with autism have much to give. Even without words, my son, now 9, has given me a voice. I have a 12-year-old daughter, who skipped kindergarten and has been excelling in school and socially ever since. She has also grown tremendously in ways she may not have if her brother had been typically developing. I also have new husband, who tries hard to understand Cash’an and teach him just how to be a boy with no labels or limited expectations. My husband, having a son himself about the same age on the spectrum (yes, we have two), has already had an incredible influence on Cash’an, showing him how to be responsible, accountable for his actions and independent in public and at home. It is a work in progress.
In our unique family life, we live moments of laughter, frustration and pride from the smallest things to the biggest. With this new forum, I hope to share pieces of those experiences to inspire, enlighten, make you laugh and understand it is OK to cry. Then we start a new day with renewed vision and hope. Neither our sons, nor our lives are defined by autism. Though it is ever-present, it does not control us and we are determined to beat it with our love, spirit, patience, understanding and knowledge.
If you read something you’d like to comment about, please email me at firstname.lastname@example.org.