Life At The Pace Of A Zen Master
By: Barbara Carson Todd
Tags: Disability, Parenting, Autism, Communication, Nonverbal Communication

Life At The Pace Of A Zen Master

Photo by Robert Nelson on Unsplash

Joe is a handsome, determined 27 year old. To doctors and specialists I describe him as nonverbal, diagnosed with Down Syndrome and autism. Those are the basic facts.

But the truth goes much deeper than that.

Who we are spiritually often breaks through physical reality.

Imagine living with a wise Zen Master during a time of great struggle. You go through great trials, but blessings of wisdom and peace arrive in daily life lessons. Challenges threaten to overwhelm, but you never quite go under. There’s always another blessing, just over the next wave, bringing peace. And you recognize the source. He’s right there.

First, Joe taught us patience. Born seven weeks premature, he didn’t open his eyes for three solid weeks. Like a tiny Buddha, he calmly nursed, slept, and filled up his diapers. A gentle coo let us know he was ready to nurse again. He didn’t cry. Rosy red lips curved into a smile when he was full. Long, dark eyelashes brushed against translucent porcelain, like fine china.

Whenever his twin sister cried (which was often), I would take care of her needs and then pick Joe up, to give him equal time. He’d smile and stretch as I gently stroked his fine blond hair. I’d touch his rosy cheeks and he’d turn to my breast, puckering his lips to feed.

“I know you’re in there,” I whispered, enchanted.

When he finally opened his eyes, I saw amazing depths of star-spangled blue, edged with a touch of pure gold. The pediatrician called them “Brushfield spots.” I called them beautiful.

He would give us a slow smile that lit up his round little face. As an infant, he was a darling, this blonde, blue-eyed little cherub. People would coo over him, then notice the flat nose, the slightly tilted eyes. Later we would learn his rosy cheeks were an early sign of gut inflammation. Dangerous toxins injected into his system as an infant. Decades later, Joe still tests positive for heavy metals.

“Toxins travel to the brain, the heart, the liver,” a specialist explained. “They’re highly damaging. Kids with Down Syndrome have no defense against them.”

There’s a video of Joe from his first Christmas, when he and his twin were almost four months old: his brother and older sisters are running around, playing with toys, having a great time. His twin sister has managed to grab a fistful of tissue paper and is waving it in her tiny hand, laughing. She’s alert, holding her head up, eagerly watching the older ones dart back and forth.

Joe lies prone on his developmental crawling track. I give him a little pat, encouraging him to move. He makes a monumental effort, covers an inch, then collapses. It looks like he’s moving in slow motion, while the rest of the world rushes by.

Every developmental milestone was substantially delayed. His “mild to moderate” diagnosis was revised to “severe.” When people in our tiny rural hamlet met Joe, some would pull back, repulsed. No one else had Down Syndrome; this was unknown territory.

I did have some help. My ten year old daughter learned to make spaghetti and proudly served up her first solo effort. Her six-year-old sister was at my side every afternoon, assisting the therapists who stopped by each week. Both girls would play with their two-year-old little brother and keep him amused. A wonderful student teacher gave us a few hours, once a week, during that chaotic first year. After that, I was on my own. When people asked how I was, I’d just smile and say “fine.” It was too much to explain what was going on. People were busy with their own lives, I reasoned.

It took years to figure out some of Joe’s diagnoses. There was brain damage (seizures, frontal lobe damage, brainstem compression), neurological dysfunction, severe gut and brain inflammation. Then, autism. His hair darkened and behaviors began to emerge. Joe’s gait imbalance was so bad, we thought he was legally blind. There were almost-daily bowel accidents well into his teens. Joe was clearly in pain. We eliminated foods and travelled all over New York and New Jersey to meet with specialists. No one knew how to help him.

Children with Down Syndrome have an non-typical methylation cycle. Their Krebs Cycle is different too. They don’t produce enough glutathione to protect themselves from toxins. They don’t achieve normal acetylation. The list of things his body doesn’t do is a mile long.

That extra chromosome throws everything out of whack.

Without expensive nutritional supplements, most children with Down Syndrome inevitably end up with Alzheimer’s. Plaque begins accumulating in their twenties. We tried a basic supplement from Dr. Turner’s regional clinic, but Joe couldn’t handle it; his digestion was too poor. The future looked bleak.

Finally, someone gave us another name. “Dr. Lawrence Leichtmann. He’s been treating kids like Joe for over thirty years.” Joe was ten years old at that point.

I chatted with a friend as we stood in line at our local bank. “I’m going to save up and take Joe to this guy,” I told her. “Maybe by next year, I can get some answers. Wouldn’t that be amazing?”

“Good plan,” she nodded.

An aquaintance stopped me as I crossed the little parking lot. “How much is this specialist for Joe?”

“Dr. Leichtmann? Five hundred dollars,” I answered. “But I’ll figure it out.”

He thrust an envelope into my hands. “$500 was my guess. Take him now, okay? No, don’t give that back to me. I don’t need it. Will you use it for Joe?”

I could feel the tears welling up in my eyes.

“Please,” he urged. I nodded, and he gave me a smile. Then he turned and walked off.

“Thank you!” I called out, embarrassed that I couldn’t provide for my son. But at the same time, oh, I was so grateful.

Dr. Leichtmann set us on the right path. We found answers, tried new therapies. Some worked, those focusing on re-aligning his body.

The doctor retired shortly after we met him, but friends pointed me to the Trisomy 21 Research Group. Dr. Leichtmann was an advisor on their Scientific Advisory Council, along with a host of top global experts in Down Syndrome and autism. Finding their Facebook page was a lifeline to these experts and to other families going through similar struggles.

(It also helped, tremendously, that I met and married a wonderful man who fell in love with my children, especially Joe. These supplements and therapies were beyond my reach as a single mom with 5 kids. )

At age 23, Joe finally learned to stand up straight and balance without holding on to me. He learned to pull in his tongue — most of the time. Amazing therapists taught him to chew using his teeth, another first. Soon, he was able to go up and down stairs just like all the other kids.

Joe, playing Twenty Questions

One day, he walked into an office, to meet another specialist. Joe looked the doctor right in the eye and extended his right hand. Startled, the doctor actually spoke directly to Joe, treating him like a real person.

That doesn’t happen very often when you’re nonverbal. Docs tend to talk over your head, to people who can talk back. But Joe was growing into a clearly intelligent young man with a lot on his mind.

Joe knows he is loved. Being nonverbal, Joe wonders about all kinds of things. We play Twenty Questions (lots of yes and no answers), to find out what he wants and how he feels about things. We tell him it’s important to be heard. We let him know he’s just like all the other guys, something that’s vitally important to Joe. Every guy has thoughts and feelings. Every guy wonders if he’s okay.

And then, we listen.

“Mom, tell my story,” he’d urge me, again and again.

So, this is part of Joe’s story. He’s cool and handsome. He likes pretty girls. He loves to work, delivering Meals On Wheels and caring for animals. Just like all the other guys out there, he wants to be heard.

Like any good Zen Master, he teaches us to listen.