Mary Kimari noticed something was not right with her first born son Cameron when he was about eight months old. His development was slower than other babies and even though people around her told her to wait for the baby to develop at his own pace; she was getting worried with each passing day when it became obvious that little “Cam” was lagging behind. With her husband, they decided to consult doctors, not knowing that finding out what ails her son would be a journey fraught with uncertainty, anxiety and tears.
“We went through a laborious process between genetic testing, erroneous diagnosis, and sensory challenges before Cam got clinical diagnoses,” she says, opening up on how her son was diagnosed with a rare chromosomal duplication disorder called Potocki-Lupski Syndrome (PTLS).
It took three years to get a proper diagnosis. PTLS is a rare genetic disease caused by duplication of chromosome 17. Just as she was learning more about the condition, doctors delivered yet another diagnosis when Cam was four years old. He was presenting signs of Autism Spectrum Disorder.
She acknowledges that getting the news shifted the dynamics of parenthood for them and changed her interaction with friends. Even when she gave birth to her second son, she realized she will still have to channel a lot of her energy in ensuring Cam is not left out.
“Socialization was a challenge for us at the beginning of our journey. Most of our friends just didn’t understand that our lives had changed. I lost some friends because they were unwilling to accept my child exactly how he is,” she says.
Every time someone mentioned something about her son, or cast her a dirty look when she was out with Cam, it dawned on her that many people are ignorant about autism. Even in Tampa, Florida, where she stays and expected people to be more aware about the condition, she could still meet people who assumed her son was socially maladjusted.
She would constantly hear well-meaning people tell her that her son does not look autistic.
“I am not sure exactly what these people are looking for but there is no one look at autism! Autism is a spectrum which means different kids have different struggles, varying gifts, interests, looks etc. In fact when you meet one child with autism…you meet one child with autism!” she says.
The realization that there was a gap in what people knew about autism, coupled with the fact that there were so many parents bringing up children with autism without having a support system motivated her to set up “Cam Autism Center of Excellence”. It is a Non-profit Organization in USA and Kenya providing convenient, affordable therapy and certification services for children with autism and their families. They engage in several activities, including using social media to educate people across the globe on tips of bringing up children with autism.
“My goal as an autism advocate is to turn my pain into purpose by helping other parents navigate through diagnosis, treatment, maintenance, self-care and parental support,” says Mary.
Cam is now 12 years old, and Mary says it has been a beautiful journey watching her baby blossom. She quickly adds that in the beauty of Cam’s growth and uniqueness, there are challenges that she still faces.
“My son has classic autism and struggles with social interaction, communication challenges and a tendency to engage in repetitive behaviors. Each one of these characteristics brings different challenges to the table,” she says.
In Mary’s words, autism affects everyone in the family including parents and siblings:
“For us the hardest thing was to accept the diagnosis, find treatments and accommodate our new normal. In the midst of all that, we each had to go through a grieving process in our own ways. Yes, autism did affect us financially, emotionally and spiritually. The financial aspect was the toughest especially because we had to pay most of his medical expenses. That was very difficult. With time, we (Mary and her husband) have figured out ways to support our son without breaking the bank so to speak. We have also allowed ourselves to be human by accepting assistance from respite workers and our community. The extra help has helped us grow individually and as a family. It has also allowed us to follow our own passions outside autism.”
Mary has had to create a fence around her child, one she believes helps in making Cam feel accepted.
“We are a family with a special need child and if you chose to be my friend then you have to accept us the way we are. I understand this is not an acceptable proposal for everyone because most don’t understand autism and that’s perfectly okay. Those who get it are part of my inner circle,” she says.
To counter the assumption most people have that children with special needs cannot be disciplined or involved in social activities, Mary says they primarily use the principles of applied behavior analysis (ABA) to discipline challenging behaviors, encourage functional communication and promote social interaction.
Other than dedicating herself fully to mothering her two children, Mary likes to be defined as a wife and a professional in the software industry. She is also the Vice President of KWITU Inc. the largest diaspora group made of Kenyan Women in the USA and in Canada
Mary migrated to USA in 1996 as a teenager immediately after high school and joined the University of Alabama at Birmingham to study Management Information Systems. The daughter of a mom who was a restaurateur and a father who was an occupational therapist at Kenyatta National Hospital, recalls the first three years as being tough, and enduring financial struggles as she navigated through college while seeking side jobs to make ends meet.
She is however grateful for the opportunities America presents, especially in caring for people with special needs.
“There are several resources related to autism such as therapies, schools, supplements, respite, and scholarships,” she says. The situation is a sharp contrast to what she saw when she was growing up in Kiambu and met several people who would have otherwise excelled if they had the right resources, she says.
She enjoys working in diaspora, and says she gets baffled by several misconceptions people have about life in diaspora; especially in social media.
“The narrative of domestic violence and alcoholism by the Kenyan man is always directed at diaspora women. Many want to believe that women are the reason men engage in alcoholism, domestic violence and unfruitful careers,” she says.
She also gets amused by the stereotype that every Kenyan in diaspora is either a nurse, nurse assistant or janitor.
“Kenyans in diaspora are employed in both the public and private sectors and we also have a lot of entrepreneurs,” she says.
Her advice to any Kenyan who is contemplating moving to USA is: “Anything is possible here!” She however adds that to succeed, one must be willing to work hard.