Kathryn Morris writes that her journey into autism introduced her to a secret society of sick kids and bankrupted families.
Oct. 20, 2021, 2:44 PM BST / Source: TODAY Contributor
By Kathryn Morris
Eight years ago, I gave birth to healthy twin boys. Eighteen months later we took a deep dive into the abyss of autism spectrum disorders.
You may know me from “Cold Case” on CBS. I’ve played the lone detective solving crimes most cops couldn’t solve, in record time, with cool music, for seven seasons.
Like many women, for a long time I was in career mode, with the baby thing not on my radar. I drank a lot of coffee, worked days into nights, traveled the globe, made TV money and was the fun aunt to my co-stars’ babies. Then I wanted more and the dream of motherhood appeared. I fell in love. We had twins. I was complete.
Then the twins were diagnosed with autism spectrum disorder at age 3. A bombshell times two.
My children are perfect. I cannot imagine them without their autism — their brilliant traces of “just being” on that spectrum has made me a better mother and person. However, our epic journey introduced me to a secret society of sick kids, misfits and savants — bankrupted families in constant emergency mode feeling this pandemic-like panic for a lifetime — epidemic numbers of cute babies who grow up into invisible people in permanent quarantine.
I was fortunate as an actor to have the resources to put my life on the back burner and turn over every stone to get treatment and help. (Today, my boys are healthy, happy third graders.) But not everyone has those resources.
For a parent, the “A” word paralyzes and polarizes in an instant — a diagnosis with no instruction manual, life TBD. Unconditional love will not “fix it.” Autism mom friends recall being told their kid would be institutionalized and “to get some Xanax.”
The CDC says one in every 54 children in the U.S. has autism. It was one in 68 in 2013 when my two joined the stats. Our healthy toddler with sparkling green eyes disappeared into a fog of severe autism: non-verbal, inconsolable despair, mystery illnesses, gastrointestinal infections, intense ear and body sensitivity, severe sleep deprivation, balance and muscles so weak he could not walk steady or sit in a chair without falling off. He was often only stable in his father’s arms. His talkative blue-eyed twin was the charming prom king at first — but soon also became sickly and went from “wild child” into extreme sensory overload, with aggression toward others and himself as well as seizures during our frequent all-nighters together.
Tears fell in my home. Our relationship took a hit. I began to pray again, usually in their cribs after dueling meltdowns. I boarded the slo-mo train of early intervention therapies with weepy moms in the same crisis. We bonded, compared notes about being excluded by others and enduring judgment at the park. I saw professional women leaving their jobs when employers grew weary of their mom “situation.”
I wondered, “How would Hollywood work with me with my special needs mama problem?” I was advised by some actors to keep it to myself, as a “maternal affliction” does not really fit on the call sheet. I resented it.
Meanwhile, I was relentless about finding specialists, advocates, special education attorneys — and trying to “Erin Brockovich it” for my friends. I could see they were being given the run-around, not the medical and therapeutic services their child needed — as if there was a secret code to get it.
One day, a veteran autism mom slipped me the number of a biomedical specialist after she noticed my son “staring off” in early signs of seizure activity. “Insurance will not pay for it — but this is the only person who can help you,” she told me.
A cancellation came up in the doctor’s books — it was a miracle. I was escorted behind the velvet ropes into solutions for my sons’ chronic illnesses: specialized diets, authorizations for behavioral and “adaptive life skills,” neurological referrals for the twins. I also got the kind recommendation to take care of myself and get to TACA (a family-support organization called The Autism Community in Action) for a mentor and free resources.
I met the O.G. mom, Lisa Ackerman, who founded TACA. I also met her grown son with autism who is now in college — and I found HOPE.
My children began to get better. My non-verbal son came out of his fog, began to talk, laugh, sing, sleep, walk steadily, run. “Mama, I love you,” he said. He was happy.
My lawyer got him into a transition class where he excelled and rode bikes with his new best friend at recess. Our wild pirate slept like a lamb through the night, his aggression fading and his seizures under control. He was heroic instead of the problem in the early invention pre-school. He seamlessly transitioned into gen-ed kindergarten, making friends like no one knew of his nightmare.
And then I met a mother who changed me forever. Naomi Stokes owns the California Care 4 U respite care agency, providing caregivers for people with special needs in crisis. She is the mother of two adult sons — one with Williams syndrome and her other with severe autism. In her office, where the phone rings off the hook like a 911 call center, I experienced the epicenter. Families who never got the support they needed were in complete duress — financial ruin, racial discrimination on top of special needs labeling, mothers and fathers attacked by their teenage children, escapes from the house, padlocks ripped off, police dogs searching for non-verbal children, severe epilepsy, depression, isolation, sedation, fatalities.
This past December, a call came into the agency about an autistic adult whose mother had died of cancer in their house during quarantine. He blamed himself. “I’m sorry. I guess I didn’t take good enough care of her.”
What would happen to my kids if I was gone?
My respite friends were able to help the grieving son find a safe place to live and heal. But the pandemic has only intensified the desperate need for support, a safety net and resources for people with autism and their families. The autism community deserves more than acceptance — they deserve action.
“I’m watching all of this and I’m scared to death for our families,” said Ackerman, my mentor and executive director of TACA. “In the 20 years doing this, it’s probably the most stressful time I’ve seen for parents.”
I am speaking out now because I want to share my story of hope. Our boys still have autism; their early interventions gave them wellness. I am sleeping again — thriving as a person now and re-engaging with my career as an actor and producer. I am developing content to shine a light on the people of the autism community with The Savants Initiative.
“Are you that Cold Case Lady?” I recall a dad asking me at the park years back, with my son falling off a playground structure in a compression vest and his twin in full meltdown. “I loved that show. You kind of disappeared after that.”
“Yeah. This is what I’ve been doing.”
It was worth every second.
Kathryn Morris
Kathryn Morris is an actor, producer, mother and founder of The Savants, an autism awareness and support network for the parents of children with autism and the community at large. She starred as Detective Lilly Rush on the CBS drama “Cold Case” from 2003-2010.
Latest Comments