People see me with my younger son and say “I don’t know how you do it.”
I know they’re thinking, “I’m glad its not me.”
But they have no idea what’s really going on. Sure, in the physical world, it looks like I’m helping my little (5’2”) nonverbal 24 year old son, diagnosed with Down Syndrome and autism, to navigate a world he doesn’t understand.
But in the spiritual world, its another story.
There I’m learning the most amazing, insightful life lessons from a tall, strong, incredibly courageous spirit who volunteered to spend his entire earthly life teaching others.
What does he teach?
He teaches us patience.
He teaches us to listen.
He teaches compassion, love, acceptance.
He teaches us to go deeper into our relationships with the Lord and with each other. No, he’s not a saint.
But he is a brave young man who accepts his mission and carries it out.
Can any of us say the same?
What would you do, in his shoes?
He’s smart, cool, aware, and very intelligent, yet he longs to know what other guys think and feel, so he can be more like them. He wants to fit in, to be one of the guys. He knows there are so many things he doesn’t know.
Sometimes, we manage to say exactly what he’s thinking — and we’re rewarded by that special look of pure relief, as if he’s saying “Oh, you got it.”
I think he must feel so alone sometimes. He loves company, especially hanging out with his buddies. He’s visibly pleased when someone pays him an unexpected compliment or greets him with a cheerful word.
Most of the time people won’t even look at him. Why should they? He couldn’t look at them. Up until last year he shambled along, head down, neck extended, tongue hanging out. His gait was uneven and he couldn’t lift his head up to look at people. It took all his concentration to focus on getting through the day. That was how Joe manifested to the world.
I decided to try, one more time, to find a therapist who could help my son ambulate better. No one had been able to figure out why he couldn’t walk straight. I spent 13 years on vision therapy which helped, but didn’t uncover the underlying problems.
Then I found the Institute for the Achievement of Human Potential in Glenside, Pennsylvania. They took a look at Joe’s picture and explained his eyes didn’t converge. I taught Joe to read and his eyes converged. He still had nystagmus and strabismus, though. I took him to one eye doctor after another, to find out how well he could see. After 13 years, we discovered Joe could sit for an eye exam because this new eye doctor had a reclining seat which allowed his eyes to stabilize.
Now, he could look at the ophthalmologist for a few seconds. We discovered his vision was about 20/60, good enough. This went on for years as I researched Joe’s long list of needs. It took 12 years to find a New York MD who would prescribe nutritional intervention. (Joe was in a residential program by then, so everything had to come with a prescription, to cover their asses.) After a year of targeted nutritional therapy (trisomy21research.org/), Joe’s tongue muscles began to relax.
In the meantime, I showed Joe a YouTube video I’d found. A nonverbal young man had heard screams from a neighbor’s pool and called 911. He could only vocalize a bit on the phone, but the dispatcher heard the screams and sent help.
“He was a hero,” I told Joe, “he knew how to push the buttons on his cell phone.
Joe had seen his brother and sisters using those phones, and two of the guys at his group home had tablets with games on them. But Joe’s hands were very flaccid. He could pick up pretzels, but he couldn’t turn a doorknob or button a shirt, or type.
Then, I showed him a video of a young man, nonverbal, with autism. This young man was typing. His computer had Dragon software that spoke the words as he typed them. Joe’s eyes got big and round. He stared at the screen.
“Isn’t that cool, Joe?” He gave me a sharp glance. That meant “yes.”
I could see the wheels turning. He was thinking, “I want this, but how?” Typing, using a computer, hearing a voice say exactly the words he’s thinking — Joe wanted that so badly.
“Joe,” I told him, “if you learn to type, you could write a book.”
Again, that direct, intense stare meaning “I want that.” Joe had a new goal, a seemingly impossible goal, to write a book.
I had to get on the phone and start finding people to help him.
He needed to learn how to use his hands for fine motor skills. I got him an appointment at Westchester Institute for Human Development, with a speech language pathologist who specialized in assistive technology. The young therapist was doubtful at first, but as we talked, she saw Joe leaning forward, his body engaged. She could see he was alert and paying close attention to our conversation. Could he learn to use an AAC device?
“Okay, we’ll give it a try.”
I told Joe he’d have to beef up his reading vocabulary if he wanted to type, so I found an online reading program, The Gemiini Program, that had helped hundreds of nonverbal children and adults to read, type and even speak. Joe liked the social stories, especially when we got his siblings involved in the videos. He could watch them talking about working out at the gym, or hanging out with their friends. The reading words flashed on the screen quickly. He was taking it all in.
Then, I got on the phone with our medical insurance provider. I asked for names of speech and occupational therapists willing to work with a nonverbal adult with multiple disabilities. I called every name they gave me, about 30 of them. None of them were willing to work with Joe.
“We only do sports medicine,” some excused themselves. Worse, “we don’t deal with that population,” or “we only work with children.”
The last place I called was a pediatric center for therapy in Westchester County. The two therapists, an occupational therapist (OT) who specialized in balance disorders and a speech language pathologist (ST) who was also an oral motor specialist, were also reluctant to take on an adult client.
“He’s a very small adult,” I spoke persuasively, “would you at least meet him and do a consult? I just need a few minutes of your time.”
They agreed. A ten-minute consult couldn’t hurt.
Joe, shambled into the therapists’ office, head down, tongue out, eyes unfocused. When the OT called his name, Joe didn’t even look up. He’d seen so many therapists over the years. They asked him to perform endless, pointless tasks and he wasn’t having any of it.
The OT stepped forward, placed an open palm on Joe’s chest and pushed him firmly against the gym wall. Joe straightened up and looked at her like she was the Pied Piper.
“I’m stabilizing him,” the OT explained.
From that moment, Joe would do anything she asked. I could see his interest, “Mom, this one knows what she’s talking about.” Within weeks, she had him climbing into a net swing and soaring across the gym, spinning in chairs, standing in a platform swing, fearlessly gripping the ropes.
Not to be outdone, the ST began teaching Joe how to open and close his mouth. After a year of targeted nutritional intervention (TNI), Joe’s tongue muscle had just begun to relax. Now, he could pull it inside his mouth. Seeing this, the ST began to teach Joe to bite down with his teeth. For twenty-four years, he’d been gumming food with his tongue, constantly at risk of choking on his food.
I saw his face, the first time he bit into a potato chip. He looked over at his stepdad and I, his blue eyes round with delight.
“That’s what the other guys do, Joe,” I offered. He was so happy. That’s what my son wants more than anything in the world, to be like everyone else.
Joe just turned 25. He’s not intellectually impaired; he knows exactly what’s going on around him. He can’t keep up with other guys, not yet. But now, he has hope. He can stand up straight and look people in the eye. He works with his therapists every week. Someday he hopes to use his fingers to type. Every day he gets a bit closer to that goal.
He imitates the Christ Child in his helplessness. With all the knowledge locked up in his receptive brain, with all the hours he spends contemplating life’s greatest mysteries — he still can’t tie his own shoes.
But he is the most amazing Teacher.