Tag Archives: autism

Weston Girl Speaks Loudly For Disability Rights

Sabrina Guerra is a non-speaking autistic 10-year-old Weston girl.

But — like everyone — her life is far fuller and richer than a few dry facts.

Just over a year and a half ago, Sabrina began communicating by typing with one finger. She became a passionate advocate for disability rights.

Now she is one of 15 winners statewide, in Senator Chris Murphy’s 7th annual MLK Day essay challenge. 

Sabrina Guerra

Nearly 2,000 elementary, middle and high school students from across Connecticut reflected on King’s dream, and their own aspirations.

Sabrina has channeled all of her experiences into her writing. It is insightful, powerful and sophisticated.

In just 200 words — the essay limit — she teaches all of us about life, and our common humanity.

Sabrina wrote:

Martin Luther King Jr. aspired to bring peace and equality to an oppressed people. I share this dream. I am of a marginalized group fighting for our right to be heard, the right to define ourselves, and the right to belong. I am an autistic non-speaker and I’ve been subjected to mistreatment and segregation because of prejudice and ignorance. Like MLK Jr., I have an inextinguishable flame for justice.

Ableism is a damaging force in society, destroying souls and sowing division. Ableism looms over America’s education system, saturates our medical institutions, and shrouds our media. In my lived experience ableism usurped my right to an equal education. MLK Jr. made history by a tireless campaign toward progress. He refused his challengers’ insistence he and his people patiently wait for justice. As was right and bold then, our revolution is now. Disabled voices must be amplified over those who have no authority to speak for us, define us, nor deny us access.

On countless occasions my mind has sailed to feats of unyielding courage of Martin Luther King Jr. and his peers. Many stinging, similar offenses and parallel dreams tie my aspirations to their journeys and leadership. My advocacy is a fire that burns within my damaged yet proud and beautiful soul.

Sabrina Guerra, in the fall.

Sabrina and her fellow essay winners will be honored at a reception this Saturday.

Senator Murphy has agreed to chat with her. She looks forward to advocating for the disabled community, while she has his ear.

And her finger on the keyboard.

(Sabrina Guerra has a Facebook page, with 3,500 followers worldwide. Click here to see.)

(Senator Murphy says: “The best way to honor Dr. King is to continue his fight for equality and justice. Every year, I’m blown away and inspired by the thoughtful reflections on Dr. King’s legacy from students all across Connecticut. Their hope and determination should remind us all that young people are changing the world.” Click here for more information on his essay contest.)

(“06880” is proud to honor the accomplishments of youngsters in Westport, and our 06883 friends in Weston. Please click here to help us continue our work. Thank you!)

 

This Halloween, Keep In Mind …

WestportMoms is our town’s go-to multi-platform destination for upcoming family and kid events, merchants and helping professional news, and and school and camp advice.

The head moms — Megan Rutstein and Melissa Post — always have every child in mind. They know “it takes a village,” and they always support ours.

The other day, they posted this advice. It comes from Dr. Ali Griffith, and is worth repeating for the (few) folks who don’t follow WestportMoms:

Wynston Browne: Autism Does Speak

Helen Keller lived for many years in Easton.

A few miles away in Westport, Wynston Browne is a 21st-century Helen Keller.

The Staples High School rising sophomore is severely autistic. He does not speak.

From his diagnosis before he was 2 years old, to just a year or so ago, everyone — including his parents and 4 siblings — thought he was intellectually disabled. His IQ was believed to be 60 or so. The books read to him were 1st-grade level.

With his detached look and inability to focus, he was assumed to be off-the-charts disabled.

Last week I spent a couple of hours with Wynston and his parents, Lynda Kommel-Browne and David. It may have been the most astonishing, eye-opening afternoon of my life.

Research shows that for Wynston and others, the inability to speak is not cognitive. It’s muscular.

He cannot make connections between his brain, and his mouth, jaw and tongue. But Wynston’s brain is spectacularly active.

And it always has been.

Using a spelling board — a simple, low-tech device with letters and numbers he points to — and working with an extremely gifted, dedicated and professionally trained communication partner named Elisa Feinman, Wynston has made great progress in the past year.

Wynston’s low-tech spelling board. Pointing to letters is easier than typing, for someone without fine motor skills.

But in the last month, his parents say, his growth has been phenomenal — about 10 years’ worth of progress. They now know he can graduate from high school, and go on to college.

He might even follow the path blazed by Dan Bergmann, a non-speaking Harvard Extension School graduate, who gave his school’s commencement address.

Or the co-valedictorian at Rollins College, Elizabeth Bonker,

Wynston might follow 2 top University of California-Berkeley undergraduates, one of whom graduated with a 4.0 GPA. He’s headed to Vanderbilt, to earn a Ph.D. in neuroscience.

Or UCLA’s first non-verbal graduate,who earned summa cum laude honors.

During the pandemic, Lynda and David heard about organizations promoting the idea that non-speakers had motor — not intellectual — differences. Wynston began working with the letter board about a year ago.

He points to the letter he wants, to spell out words. It’s easier than typing. Because of motor difficulties, when non-verbal people make typos, it’s assumed they lack intelligence.

Elisa holds the board for Wynston. But what he does with it is amazing.

It’s inspirational. And life-changing.

Wynston and Elisa, at work with his spelling board.

In the past month, Wynston’s parents have watched in wonder as he not only answers questions and does math problems, but demonstrates abstract thinking. He expresses his emotions — something it seemed he was never able to describe — and answers open-ended, personal questions.

On Fathers Day, Wynston spelled out, and Elise wrote down, a card to his dad.

“I like to give my dad hugs,” he said. He wanted to honor his father by being “the best person I can.” He vowed to work hard “to increase my skills like communication.”

His spelling board, he added, makes him feel “happy.”

Wynston’s Fathers Day card. He spelled out the answers to Elisa Feinman’s questions; she wrote them down.

Suddenly, Wynston’s world has been unlocked. It’s not unlike Helen Keller spelling “water” for the first time with Anne Sullivan.

There were several books on Wynston’s table. I chose a biography about Temple Grandin — the scientist, animal behaviorist and autism advocate.

I read a few pages out loud. Wynston did not make eye contact; it looked like he was not even listening.

But he sure was.

Wynston Browne learned — and remembered — everything about Temple Grandin.

When I was finished, Elisa asked him some questions. Where did Grandin earn her master’s? (Arizona State). What was her major? (Animal science.) What was her highest degree? (Ph.D.).

He did the same with a book about the atom bomb, which Elisa had read to him a couple of days earlier. He remembered Lyman Briggs (head of FDR’s Uranium Committee — a name and group I’d never heard of), He spelled every word correctly — including “physicist,” which trips up many people.

And he did it all despite never having had a formal spelling lesson.

For years, Lynda says, “He was learning basic math. Because he couldn’t express how easy it was, he exhibited extreme behavior” — rocking and other motions. “That reinforced for others that he did not understand basic math. Bur really, he knew much more than that.”

Elisa held up a board with numbers. Wynston quickly went through addition, subtraction, multiplication and division problems well beyond “basic math.”

Then it was time for a chess lesson. The game demands many types of intelligence: pattern recognition, thinking ahead, analytical skills, long-term memory.

Wynston made his moves quickly and confidently.

Scenes like these excite and hearten his parents — and make them angry and wistful too. They rue the nearly 15 years they held low expectations for him. They wonder what he felt all those years, with so much intelligence bottled up inside, and no way to express it.

Wynston Browne (3rd from left), with his parents and 4 siblings.

“I get goosebumps,” Elisa says, her voice breaking. “I feel we wasted so much time. But now he will excel. and we will push him as far as we can.”

“Wynston is not non-verbal,” Lynda emphasizes. “He is non-speaking.”

She notes one small sign of Wynston’s abilities to think deep thoughts, and express them well. The other day, she asked him which dog he preferred: his service animal, or the family pet.

He chose the one with “a calm temper.”

On the outside, Wynston may not seem calm. He rocks, makes repetitive motions, and is in constant motion.

It took nearly 15 years for the people closest to him — his parents — to realize that his brain was moving just as rapidly. He had thoughts, ideas and feelings — but no way to “speak” them.

Now he does.

Wynston Browne is non-verbal. But he’s not unintelligent.

Far from it. He’s learning how to communicate well. He’s learning many things people thought he never could.

And the rest of us are learning that he may very well be gifted.

(Hat tip: Jill Johnson Mann)

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Evan Stein: “I’m A Very Lucky Father”

Evan Stein is a native Westporter, a 1992 Staples High School graduate, and a proud father.

He now lives in Manhattan, and works as a neuroradiologist in Brooklyn. But he, his wife and boys will be at Compo all summer long. (They ponied up for an out-of-town beach sticker.)

On this Father’s Day, he reflects on the challenges — and joys — of a special type of fatherhood. The piece was posted this past Thursday on “The New Normal.”

Sometimes I feel bad about being a father of a child with autism. And then something crazy happens.

This week it was something tragic. A little boy who was born the day before my son, in the same hospital 10 years ago, died in a tragic accident while on a joyful visit to the Baseball Hall of Fame in Cooperstown. And now, I can’t sleep.

I don’t think my son could enjoy the Baseball Hall of Fame. He doesn’t really like baseball. I think he thinks he’s supposed to like it. He even tried a Challenger League (Little League for kids with special needs) last year.

Josh Stein

When he said he wanted to try it, I ran to a sporting goods store to buy him a lefty mitt. They asked if I wanted to donate $2 to help children with autism. I said, “this whole purchase is to help a child with autism!”

He wore the mitt twice. He stood in the field and waved his bat at the ball. He ran to first. He ate 2 hot dogs.

It’s always 2 hot dogs. He prefers CitiField to Yankee Stadium. It’s not the Mets or the better sight lines. It’s Shake Shack. CitiField has it. Yankee Stadium does not. 2 hot dogs. Always 2 hot dogs. Shake Shack because he’s a hot dog snob.

But he’s mine. If he wants to repeat 10 jokes or skits from Sesame Street with Ernie and Bert or Neil Patrick Harris as the Fairy Shoe Person or Lin Manuel Miranda as Freddy Flapman or a bit with the Good Cop and the Bad Cop from the LEGO Movie or from some other video on YouTube that I can’t stand but he loves, I’ll do it.

I’ll let him do the sequence of jokes and skits 10 times in a row. Sometimes 20. When I’m supposed to do it alone or it’s a team act, like Abbott and Costello, I’ll let him correct me until I get the accent just the way he wants it and say it with the inflection he prefers. I’ll do it over and over because when I get it right he smiles and giggles and laughs.

Josh enjoys Compo Beach.

He’s falling behind his grade level because it’s hard to get him to pay attention to his lessons. His academic progress seems to be slower and slower while the therapists and teachers focus on keeping him focused.

I would work on his homework with him but he won’t let me. I’d teach him multiplication and math tricks I’ve learned but it’s pointless. His memory lets him memorize arithmetic in a way that often surpasses my skills. And he’s starting to get fractions now — at least that’s what I see in his reports from school. He doesn’t do that with me. Mostly, he leaves school in school and only acquiesces to homework with his therapists but not with me. Maybe someday.

He likes when I take him to run short distances at New York Road Runner events and he runs 400 yards with a smile burned onto his face. He loves the cheering and the medal around his neck. And then he wants the 2 hot dogs at Shake Shack. And he wants to pick the Shake Shack. Even if it’s one that’s 45 minutes away without traffic. And I’ll take him because I just want to see him smile.

The Stein family

I give him almost whatever he wants whenever he wants. I’m pretty sure it makes me a bad dad but he has the short end of the stick and I’m not sure the stick is ever going to get any longer. I’ll usually give him whatever I can to make him happy.

Except when he makes me crazy.

I’ll try again tomorrow to not yell when he makes me crazy. When he asks one too many times for me to do it again. When he says something mean to me or his mom or his brother for no reason other than that he likes the way it sounds to say idiot or moron or jerk. He doesn’t mean it and I think he knows it’s wrong but it’s just one more thing that he can’t seem to control. And getting upset is stupid (another favorite word of his) because then he knows he got me and that’s really his goal so when I get upset I’ve lost twice.

But he’s here and he’s mine and I don’t ever want to lose him.

Josh, as a newborn

My son has autism. Being a father isn’t what I thought it would be but maybe it’s the same father I would have always been.

I’ll never know. Can’t really compare it to being a father to my son without autism because he’s still the son to a father who is the father of a boy with autism. It will always be an uncontrolled experiment.

I love being his father. Being father to both of them. Separately and together.

I’m very lucky. Really, I am. Sometimes I just need a reminder of just how lucky.

Ethan And Billy Joel Go Viral

Ethan is a 6-year-old kindergartner in the Westport Public Schools.

He’s on the autism spectrum, as a very high functioning child.

He’s also a very talented musician. After hearing a song 2 or 3 times — pop, classical, whatever — he plays it perfectly on the piano. It’s a full mind and body experience for him — he’s totally into each piece.

Recently, his mother Allison — who, with her husband Michael, is the top fundraiser in Fairfield and Westchester Counties for Autism Speaks — filmed a video of Ethan playing piano, and singing, “Piano Man.”

Ethan’s speech teacher, Shari Goldstein, uploaded it to YouTube. Shari’s friend saw it and sent it along to Reddit. They put it on their “Featured Videos” page.

In less than 2 days, it’s gotten over 55,000 views. Over 300 people have posted great comments.

Ethan loves audiences as much as he loves music. Last year he performed in front of a huge crowd at an Autism Speaks benefit.

But that was nothing compared to this.

Today, Ethan has an international audience.

And it grows every minute.

(To make a pledge toWalk Now for Autism Speaks on Ethan’s behalf, click here.)