Autism: One Family’s Journey
My daughter Kyla is a gifted artist. Like her spirit and personality, her artwork fills my heart. She blends just the right colors and exquisite details as she constructs characters and scenes. And I’m so very proud of her.
For someone like Kyla, who struggles with communication challenges as the result of autism, drawing and painting provide her with a much-needed chance to express her thoughts, feelings and ideas. The essence of her beautiful soul is captured in each piece of art, and I cherish them all.
Every time I look at one of her masterpieces, I see a young lady who has found a way to express her individuality. I see a sweet daughter, sister, granddaughter, niece and human who genuinely feels loved. And I see the impact that a caring circle of support, which extends well beyond our own family, can make on the life of another person.
As we honor Autism Awareness this month, I’ve given some thought to what I most want to share in the context of Kyla’s life story. Simply put, I want everyone to understand that when someone with special needs is surrounded by those who truly believe in their potential – people who will go the extra mile – amazing things can happen (true for all of us, of course). I also want everyone to understand that the outdated use of demeaning language about intellectual disabilities (i.e. “idiot”) is unacceptable and it is time for us to remove them from our collective vocabulary. It is time to elevate our culture. I can imagine a world where a warm embrace of neurodiversity is universal. I imagine a world in which our Autistic loved ones are treated with the dignity and respect they deserve, and in which they are celebrated for their unique gifts and included as important members of our global community. Finally, I have profound gratitude for the kindness and compassion extended to Kyla and our family by people from so many different walks of life. I want every family facing the challenges of autism to know there are tremendous resources available to help them navigate the path ahead, and there is hope.
Here’s a little more about our story.
On the heels of a move from New Jersey to Minnesota, Kyla was diagnosed with autism spectrum disorder. Upon getting this news, I immediately tapped into my background as a former attorney. Long before becoming a mother, it was my job to research, process complicated information, and advocate fearlessly for whomever I represented. I never imagined applying that skill-set to my personal life, but it helped to ensure that no stone was left unturned. From genetic tests and MRIs to alternative therapists and behavioral specialists, my husband Sri and I brought in every “expert witness” we could, all of whom gave us helpful advice and direction. We marveled at how deeply everyone seemed to care, and the shared sense that Kyla could enjoy a rewarding life ahead.
By age 2, Kyla was working a 40-hour workweek herself in Applied Behavior Analysis (ABA) sessions. We quickly discovered that optimizing her quality of life was indeed going to be a wholehearted effort on the part of each of us, including Kyla herself. And that we couldn’t do it alone. Every member of our team played a critical role in her growth and development. Behavioral therapists, occupational therapists, speech therapists, doctors, teachers, autism advocates, our special education attorney — everyone was contributing to Kyla’s life. And their belief in the possibilities for Kyla helped keep our spirits strong.
Our family relocated from Minnesota to California when Kyla was 4 years of age. By the time Kyla was a kindergartner, she was engaging in self-injurious behaviors. While we knew that they were a manifestation of her utter frustration from not being able to communicate her wants and needs, managing those behaviors required the full involvement of every caring person on her team. It was extremely tough. And they gave it their all. Every day. Even amidst seemingly insurmountable challenges.
The years passed, and by 5th grade, the school district and her therapists were likewise going to great lengths to give Kyla every accommodation and service possible. Whatever she needed, they made it happen. Again, the theme of interconnectedness wove its way into every fabric of our being and our lives.
Kyla is adored by her entire family. As her struggles became more serious, she was surrounded by the unbreakable love of her parents and sisters, Sophia and Scarlett. That said, autism in a family member can break your heart and challenge your spirit. As Kyla’s self-injurious behaviors became increasingly frequent and more intense in 2018 and 2019, Sri and I continued at a fevered pace to search for new treatments, therapies, and help for our sweet girl. Only parents who have walked a similar path truly can understand the unique devastation and horror of seeing your autistic child suffer so deeply that they harm themselves for release. It was in talking to other families with similar experiences that we finally gained clarity about the road ahead, and hope.
Up until 5th grade, Kyla had loved to go for long walks on the Strand in Manhattan Beach, a popular oceanfront walk that will make anyone feel like they are on vacation. Sri, an amazing and dedicated father, in particular must have taken Kyla for hundreds of these walks over the years. One day in the late spring of 2019, Kyla and I set off for a walk on the Strand. At one point, Kyla began to scream at the top of her lungs, dropped down to the ground and began banging her head against the cement pavement. I immediately intervened to stop her, which triggered her severely biting my left arm for what felt like an extended amount of time. I was terrified – so fearful for my baby’s safety while managing being under physical attack and in all dimensions of pain – and all while maintaining a mother’s unstoppable focus on protecting my child. As horrible as this experience was, it also brought about an awakening, a turning point. We knew on that day that it was time for a residential treatment program designed specifically for people with autism. Once we really absorbed that revelation, the fear that overtook me on the Strand that day was replaced by a wave of relief and hope.
Through a dear friend of my daughter Scarlett, we had discovered an organization whose mission was aligned with everything we wanted and everything for which we’d been working: “optimizing the quality of life for people with autism.”
So, we made the cross-country plane trip – from Manhattan Beach, California to Manhattan, New York, and then drove up to the mid-Hudson Valley through the gates to Anderson Center for Autism. Within minutes, I was struck by just how ideal it was for her. Although she had some behavioral challenges that day, she was comfortable there – and cooperative – and overall, seemed HAPPY. In the difficult moments, the staff remained calm, cool, and collected as they effortlessly redirected Kyla. They exhibited true kindness and compassion throughout. I knew that Anderson would be the place that could optimize Kyla’s life and deepen the sense of interconnectedness that had long been growing in our lives. I had scoured the country to find the right fit, and on that day, I knew that Anderson Center for Autism was exactly where she needed to be.
When we presented the idea to our home school district, we were once again met with incredible support for our family and most especially, for Kyla. Everyone wanted to give her the best education and life possible, and this seemed to be the natural next step. They leaned into our request and quickly worked to make our vision for Kyla a reality. Her therapists and pediatricians got involved. Our school district and teachers advocated at a level that would make any lawyer proud to have them on their team in the courtroom.
The Manhattan Beach school district initiated an entire process of helping Anderson to obtain state certification from the State of California, and Anderson reciprocated quickly by obtaining the state certifications they needed to extend Kyla admission to the program. Both groups did so with loving kindness and enthusiasm.
A reminder of what it means to have a circle of support.
Just weeks before the pandemic, Kyla moved to Anderson Center full-time. To have her in a safe, nurturing environment over this past year has been a miracle. And she’s shining bright in her home away from home. How do I know? Well – you just have to look at her art for the answers.
Do I grieve? Yes, of course. That will never stop for me or for any parent who’s been faced with the difficult decision of full-time residential placement for a child. But I know that Anderson is where she belongs at this time in her life. And I know that just as it’s been every step of the way, Kyla continues to build out her caring circle of support around her with people who will do everything possible to unlock her incredible potential.
Kyla’s masterpieces are matched in beauty only by the collection of good hearts that have been part of her journey. My daughter’s support circle has come in the form of family, friends, specialists, doctors, therapists, autism experts, colleagues, and even perfect strangers. Our road has taken us from our home in Manhattan Beach, California to Anderson Center for Autism, just 90 miles north of Manhattan, New York. Along every mile, we’ve met the kind of people who’ve helped Kyla unlock her own greatness.
Kyla’s palette is all her own. It’s rich with color because of the many who celebrate and honor her for exactly who she is. On Autism Awareness Month, may we all remember to do the same for the 1 in 54 impacted.