Cyndy Langat is a Kenyan autism awareness advocate who founded the Kenya Autism Alliance (KAA) to support parents like herself who have children on the spectrum. KAA's mission is to create "autism awareness throughout the African continent by walking this journey with families that are affected, and by offering hope and resources that will help shine a light to the future of our children."
Tell us about yourself.
My name is Cyndy Langat. I am a mom to two wonderful teenagers. I was born and raised in Kenya and I currently reside in Massachusetts. I am a published author and poet.
What was the journey of your son's diagnosis and what led you to create the Kenya Autism Alliance?
My son’s name is Kyle and he has Autism. He is fourteen. My little genius! I never paid much at attention to my son’s milestones because it wasn’t in my DNA to do so. Children develop when they develop. One day during his two-year doctor’s appointment, his pediatrician became concerned about his development and recommended early childhood intervention. I agreed to it because it was being covered by insurance, otherwise, I did not see the need for it. After one visit by an early childhood professional, I noticed someone about my son’s eye contact. He was in his own world. I knew what Autism was, so I went to the famous Barnes and Noble bookstore and read the symptoms page only! I came home and told myself that my son might just have Autism.
During his second therapy appointment, I nudged the therapist who continually declined to share her sentiments. This was due to legal implications. I completely understood her point. She quietly recommended I visit a clinical psychologist. I did. After two to three hours of testing, I could see the truth through the psychologist’s eyes. She delivered the news. She called it PDD-NOS also known as Autism Spectrum Disorder. I went home, in denial. He was about two years and five months at the time. After a couple days, I decided to take the bull by its horns. I accepted the diagnosis. I began reading, filling out forms and surveys and doing tests upon tests. I went to every therapist at the Children’s Hospital for neurological visits and tests recommended by his pediatrician.
One day, upon visiting the developmental pediatrician and supplying him with all documentation, he told me to delete the label PDD-NOS and teach my son how to cope with society. BOOM! That was my breakthrough, my paradigm shift. I went home a happy mom. I knew exactly what to do. I decided to educate myself on this mystery.
My son was coping well until potty training. He was ready, but speech was not there. He played with poop like it was play-doh. I was shocked but very patient. I began potty training him and it took a year and a half to conquer, but WE DID IT! It was quite the relief but it was followed by meltdowns, tantrums, and sleepless nights. I have an older daughter who’s my hero, and she was Kyle's superhero even though he would hit and smack her when language was scarce. In addition, Kyle had severe asthma. I became very desperate. I began praying really hard for my son, crying night and day and asking God, "Why? Why do single moms get an added burden? Isn’t being single already hard work?" Freedom to go anywhere became a joke. Grocery shopping was never without a tantrum. I lost friends, I gained a lot of knowledge, and learned to manage my expectations.
I began thinking about parents in Kenya, the stigma of a “disabled child” as they like to call them, or “abnormal.” I became very sensitive to these choices of words. I sent my parents an email about the diagnosis. What a disaster that was! My father boarded a flight to the United States to come be with me. My mother had mixed emotions because she considered boys slow developers. My siblings were here but I still felt alone. One day I sat by my computer and created Kenya Autism Alliance. I shared my raw story on Facebook. When I woke up the next morning, I had more than one hundred comments of support, tears and hugs. I then knew that this journey would encourage many.
In December 2011, Kenya Autism Alliance was born. I founded this organization because I had no support. After diagnosis, I had no one familiar to turn to, yet I was in America. I only imagined what my fellow Kenyans were facing and I did not want them to walk the journey alone.
My son is now fourteen, very clever, academically tops his classroom and loves, loves anything Disney. He’s quite the artist, plays the piano with excellent pitch and loves to sing. I would never trade my son for anything! I am happy to say that Autism is the best thing that ever happened to my family. It has completely changed how I view people and how I view life. I participate in the Autism walk every year here in Massachusetts and I plan to continue creating awareness in all ways possible through Kenya Autism Alliance and most definitely through my son.
since founding the kenya autism alliance, what has been your proudest moment?
My proudest moment was when KAA went live on Facebook and support poured in from all over. Listening and reading from parents about their lonely journeys and how KAA has been instrumental has been such a pivotal moment for me.
As a parent-led alliance, what kind of stories and information do members share?
We share stories of diagnosis, denial, desperation to get a cure, triumphs, trials and mini victories such as potty training or speech. We share stories about families, friends, and the stigma surrounding our culture with Autism in the mix. The most frequently discussed topics are behavior, speech and language, aggression, potty training, and safety. Also, ways of coping in the society and travel tips.
Have you faced any personal or professional challenges during this journey of autism advocacy?
No one said advocacy is easy. Sure enough, I have faced issues from losing friends, stigma from friends and family, isolation and desperation. Working and raising a child on the spectrum and having to maintain certain composure has been a tough balance in corporate America. Flexibility with employers has been one of my greatest challenges.
What does the Kenya Autism Alliance look forward to in the near future as it continues to raise awareness and support families?
I can only say that Kenya Autism Alliance will be the springboard of resources to all the parents in Kenya and we hope to expand into other parts of the world. KAA will continue to spread awareness and be the voice of the voiceless.