Best People in the World

Ellen here:
I wrote this essay awhile ago, in response to Trump’s cruelty at the Mexican border.
Posting it finally now in response to the incredible kindness of the staff at Walker’s Clearbrook group home as they ‘shelter in place’ bravely and lovingly with Walker and his friends.

Who can join us in America?  Let me choose.
After all, I’m as American as they come. The first bit of me arrived on Virginia’s shore in 1700 with a Huguenot escaping religious persecution in France. Other Ellen DNA resided in several Revolutionary War soldiers, a drummer boy at the Battle of Bunker Hill.  Mix in Native American women they married. And on from there.

So, I’m a true American. If anyone gets to say who belongs here, I do. My vote? Give me the newly arrived. And the more different from me, the better.

Living for years in Lakeview, Chicago’s epicenter of all things different, my husband and I discovered that we love the ‘different’ that our various friends and neighbors bring to life.

ALee partyIn recent years, our appreciation of people unlike us – especially those from what our hateful President calls ‘s—hole countries’ – shifted into high gear when our son Walker, now in his 30’s, moved into Elaine House, a Clearbrook group home for guys with autism staffed mostly by newly-arrived African immigrants.

Here we found, one after the other, the best people we have ever met. Working terrible hours, often double shifts, for low wages, these recent immigrants patiently make life possible for complicatedly-disabled young men, some in diapers, some throwing fits.

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Again and again, these former ‘s—hole country’ residents have shown us what being a real human really means. Every day, our son and the other guys are treated to hugs, handshakes, high-fives, smiles, shared laughter and real love from these big-hearted immigrants. When we take Walker back to his house after a weekend outing, he hurries inside with a huge, expectant grin on his face.

I don’t take this for granted. Previously, Walker lived in a group home run by pure white, standard Americans. There, he was ignored, abused, even became malnourished while the staff watched tv.

The more I learn about new immigrants, the more I admire them.

After reading Trevor Noah’s book, Born A Crime, I became curious about how many languages the African staffers at Elaine House speak.

So, I asked.

Charles?  7.

Theo?  5. Oh, wait, do you mean also African languages, Ellen?  Then, 11.

And you, Ellen?

Um. Just English and a few words in French.

Oh! Then, we can speak French together!
No, we can’t….That is, I can’t.

Get to know new immigrants – the newer the better – and you will find you agree with me. And forget Trump’s idea that a good immigrant can stand on his own two feet, needs no assistance. Walker’s staff friend Femi has a new baby boy. His little son is still crawling and being spoon fed, but America definitely needs his bright smile.

Let’s open our doors wide to immigrants coming from troubled parts of the world. We need every bit of their courage, kindness, intelligence, and drive if America is to achieve its goal of being the land of the free and the home of the brave.

WBEZ StoryCorps: Sgt. Keith Miller & Ellen Hughes, Walker’s Mom

Mary Schmich: WBEZ and StoryCorps did a really sweet segment based on my column about the night Ellen Jividen Hughes and Robert Hughes took their son Walker, who has autism and was reacting violently to prescription meds, to the Loyola Medical Center ER, where they encountered the world’s greatest security guard, Keith Miller.
It’s four minutes worth your time.

Keith + Ellen
Click to hear it:
https://www.wbez.org/…/storycorps-chicago-ellen-hughes-keit…

Mary Schmich: ER Officers Respond to Autism

Thanks to the Tribune’s Mary Schmich for bringing much deserved attention to hospital security staff who were ready to help.

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by Mary Schmich
2/6/2019

Column: A man with autism, behaving violently, winds up in the ER. The officers on duty respond — by singing and dancing.

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Ellen and Robert Hughes expected the worst when they took their son, Walker, who had been on a violent rampage, to Loyola University Medical Center’s ER. But they were inspired by public safety officers, led by Sgt. Keith Miller, left, who calmed him down by singing and dancing.

On the way to the hospital that cold evening, Ellen Hughes sat in the passenger seat of the car, her husband at the wheel, while their son, Walker, sat in back pulling her hair and trying to strangle her.

It had been an awful day. Walker, who is 6-foot-3, has autism and is ordinarily gentle, had been rampaging through the Hughes’ small Chicago home, suffering, they would later learn, from a “paradoxical reaction” to a medicine that was supposed to calm him down.

He had chased his parents through the house, tackled his father to the ground, even bitten him through his winter coat hard enough to hit flesh.

Get to the hospital, a doctor said.

They obeyed, but as they passed the entry doors of Loyola University Medical Center in Maywood, Walker bit his mother’s hand, hard. She screamed, and a phalanx of men in uniform swarmed in.

“Picture it,” she says, “here’s this fragile little mom, the aged parents. Walker’s huge and he’s violently attacking me and suddenly there’s all these cops on him. I’m thinking, ‘My God, they’re gonna kill him.’ ”

They weren’t technically cops. They were the hospital’s public safety officers, but Hughes knew how wrong things could go between a big, violent man with autism and a bunch of uniformed men wearing badges, bulletproof vests and stun guns.

And then things went an entirely different way.

Walker Hughes is 33. His parents, Robert and Ellen, have spent almost that many years in and out of hospitals, trying to help their son while also trying to help others understand autism. In one hospital, Walker was pinned to the floor, screaming. Once, he was handcuffed to a bed, and ever since, even getting him onto a gurney was likely to be a fight.

At Loyola, Ellen prepared for the fight.

“I’m scared to death and I’m bleeding,” she says, recalling that day in late December. “I’m sitting there sadder than I’ve ever been in my life and I hear this game starting up.”

In the cubicle where Walker had been taken for tests and medication, he kept bolting off the examination table. Instead of brutally restraining him, though, the officers tried a different approach each time he jumped up.

As Ellen described the game in a recent blog post:

“Walker gets up!” they cheered.

They helped him sit back down.

“Walker sits down!”

And he did.

“Walker scoots back.”

He did.

“Walker lies down.”

Yes!

For two and a half hours, the officers coaxed and cajoled. They danced. They sang children’s songs. They sang James Brown. They harmonized on the “Mr. Rogers” theme song.

“Walker loved it,” Ellen says. “He was kind of mystified and charmed and started smiling. They were men his size who considered him a real person. It’s scary when people don’t think you’re a real person. You have autism and you can’t talk — but you’re a person. It’s scary to be treated like a lion from the zoo. We’ve been to the doctor and the hospitals a million times and I’ve never seen anything like these guys.”

What Walker experienced might have been different if not for Sgt. Keith Miller, who was on duty at Loyola that night.

“First of all,” he said, when I talked to him Tuesday, “I am the parent of an autistic child myself.”

His experience with his son, who is 14, prompted him to seek training in how to handle patients with autism who arrive at the hospital. Now he helps train other officers. One thing he teaches is that no two people with autism are the same. He found the key to working with Walker, he says, when Walker mentioned Mary Poppins.

“Right then and there, I knew how to deal with it,” he said. “We started singing ‘Mr. Rogers.’ I did ‘Sesame Street’ voices. We made a game. Clapped, cheered. We stayed there for two and a half, three hours. Very few things were more important than Walker.”

Miller says that police and other public safety officers are waking up to the need for such training.

“I think it’s something that’s new, getting bigger and bigger,” he said, “considering that the diagnosis of children with autism is rising.”

After that night, it took Ellen Hughes a few weeks to collect herself well enough to post something about it on social media. She also wrote the hospital asking it to relay her thanks to the officers.

“You can’t train that kind of spirit,” she says.

Walker is getting good care now and recovering from the wrong medication. Ellen’s hand still hasn’t healed from the bite, but something in her was restored that night.
read on Tribune site

mschmich@chicagotribune.com

Twitter@MarySchmich


And, a Follow-up Tribune Column
:

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by Mary Schmich
2/9/2019

Column: Sgt. Keith Miller and his crew hailed as heroes

‘I’ve learned that the autism community is much larger than I could have ever imagined’

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Sgt. Keith Miller stands outside Loyola University Medical Center in Maywood on March 7, 2019. In late December, he and his crew helped patient Walker Hughes, a man with autism who was having a violent reaction to medication, by singing and dancing to calm him down without force. (Abel Uribe/Chicago Tribune)

For the past month, Keith Miller has been overwhelmed by thank-yous.

From all over the country, parents of children with autism have said thank you. His bosses have said thank you. A woman from Canada expressed her gratitude by sending a box of socks and Canadian candy.

He has heard from national and local media. He has been invited to speak. He has been hailed as a hero.

And all of it because one night he put on his security guard’s uniform, went to work and, in his view, just did his job.

“It’s very, very surprising, and humbling,” Miller said this week when I called to talk about the response to the story of what happened one night in late December at Loyola University Medical Center in Maywood.

Last month, I recounted that story in a column, about how Miller was the sergeant in charge of the security team on the night Walker Hughes arrived in the ER.

Hughes, who is 33 and has autism, was in the midst of a violent reaction to his medication, and as he entered the hospital, he bit his mother. The security guards swarmed. Walker’s mother, Ellen Hughes, remembers thinking, “They’re going to kill him.”

But where others might have seen merely a menace, Miller and his crew — he’s quick to say that if there’s credit to be had, they all share it — saw a man in need of help. Instead of restraining him with force, they calmed him down with songs, dancing and games.

In some ways what happened that night was not remarkable, just another slice of chaotic life in the ER. But hundreds of thousands of people have now heard about the incident, and to many of them it was remarkable that these men in uniform responded with compassion instead of aggression.

From the flood of response, Miller has learned a lot.

“I’ve learned that the autism community is much larger than I could have ever imagined,” Miller said, “that a lot of parents out there are struggling with the same issues. I also learned that a lot of health care organizations aren’t prepared to deal with this. I learned that law enforcement isn’t prepared to deal with the generation with autism coming up. I’ve learned also how fast this issue has affected people.”

The affected people include him.

Miller grew up in Chicago’s Englewood neighborhood, the youngest of four kids raised by their mother. She was the kind of mom, he says, who cooked and babysat for neighbors in need, and she instilled in him the spirit of helping. One of her friends had a son with muscular dystrophy, so Miller spent most nights at the boy’s house, bathing him, lifting him off and on the toilet, helping him into bed. It wasn’t duty, he said, it’s what you do when you care.

“It prepared me to be a lot more compassionate,” he said. “It molded me and prepared me to deal with my son.”

Miller’s son, Cameron, was 12 months old when Miller and his wife began to suspect a problem.

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Sgt. Keith Miller stands with his son, Cameron, who is 14 and has autism. (Family photo)

“He stopped walking, stopped saying bye-bye and making eye contact, started doing the hand-flapping,” Miller said. “We didn’t know what was wrong.”

He was so unaware of autism that when he first heard his son’s diagnosis, he wondered if it meant his child was gifted.

But he and his wife soon learned the truth, and they adjusted their lives to help their son. It was that personal experience, along with some professional training in how to handle people with autism, that guided his response to Walker Hughes.

In the weeks since the story went public, the Hughes family, too, has been overwhelmed with inquiries and kindness, much of it from other families who deal with autism.

“There’s a lot of us,” Ellen Hughes said.

Miller and Hughes hadn’t seen each other since that night in the ER until they were both invited to a recent radio interview. She was struck by how gentle, friendly and dedicated he was and afterward wrote to suggest I talk to him some more.

“He’s amazing and full of stories you will really appreciate,” she said. “And not full of himself.”

As for her son Walker, he has spent most of his time since December in a care facility in the hopes of having his medication regulated. His parents brought him home for a few days recently.

“He was darling, charming, talking to us — and then, suddenly, completely violent and strange,” she said.

She and her husband, Robert, called 911. When the officers arrived, Walker was shouting and pounding on a table.

“I pointed out to Walker that these were officers, just like his friends in the Loyola ER that he had fun with,” she said. “He took a good look at them, got up, put on his jacket, walked down and got in the ambulance. Amazing. I totally credit this to Sgt. Miller and his crew.”

The number of children diagnosed with autism has risen dramatically in recent years. Those children will grow into adults. The children and the adults will need care that as a society we don’t yet provide.

But it starts with the individuals like Keith Miller who know it matters.
read on Tribune site

mschmich@chicagotribune.com

Tough, Sweet Cops

Entry by Walker’s mom, Ellen
January, 2019

As a dedicated Law & Order viewer, I’m very familiar with the good cop-bad cop bit detective teams use to wrangle the truth from a perp. But now, in real life, I have witnessed the amazing miracle a team of big-hearted police officers can work on a guy in serious trouble by using a good cop-good cop routine.

Hit with a severe paradoxical reaction to a med meant to calm him, Walker, our 33-yr-old gentle son with autism, suddenly was raging through the house, shouting, striking out. We called his psychiatrist and quickly headed off to a hospital for help. (Driving in the pouring rain in rush hour traffic with Walker beside himself, shouting and fighting, but I digress.)

The moment we entered Loyola Medical Center Emergency Room’s first sliding door, Walker grabbed me and bit my hand. Hard. Blood, a scream. And lots of police officers all at once.

walker-keithcopgroupLike all autism parents, especially those with jumpy, nonverbal, 6’3” guys like our son Walker, my husband Robert and I can easily imagine how things often go very wrong very quickly when the police get involved.

And here they were suddenly, a bunch of them with bullet-proof vests, badges, taser guns in holsters. About 5 grabbed Walker, held him, while another one took me to a nurse. We were reunited at Walker’s ER cubicle, with Walker now surrounded by 7 large officers, led by Sergeant Keith Miller.

Robert and I, sitting nearby, were overwhelmed with fear, sadness, you name it. Walker was contained. He needed help – blood tests, an EKG, calming meds – but was too wild and upset to accept it.

Then, things changed. When Walker jumped up from the examining table to escape, the policemen instantly turned it into a game.

“Walker gets up!” they cheered.
They helped him sit back down.
“Walker sits down.”
And he did.
“Walker scoots back.”
He did.
“Walker lies down.”
Yes!

“High Fives All Around.”
And, amazingly, Walker smiled and High Fived every one of them.

Immediately, he tried to escape again.

So, the routine was repeated. Over and over again, more and more happily. Smiles all around, a bigger and bigger smile on Walker’s face. If an officer stepped out to handle some other problem, the rule was he had to get his High Five upon returning. Walker still wanted to leave. But he loved the game. Loved the officers.

Then, I heard them all sweetly singing.  “Would you be mine, won’t you be mine, won’t you be my neighbor.” Even a little harmony in there. Walker was happy and relaxed. After a few more children’s songs, there came some James Brown and plenty of other cool stuff. Walker was not restrained, not bruised, not scared. He was befriended and delighted.

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All seven officers stayed right there helping Walker for a couple of hours. Containing him, befriending him. Sergeant Miller, who clearly was essential to this success, dealt with issues throughout the hospital through his shoulder communications device while staying right by Walker’s side. Other officers left, arrived. The medical tests became fun and easy. Walker’s tension eased because he had friends, big guys like him, who liked him.

Later on, we were down to one officer as we waited overnight for an ambulance to nearby Riveredge, a psychiatric hospital, for extended meds reduction.

An ambulance. Before now, Walker had never been willing to:
1) get on a stretcher,
2) be strapped down,
3) get in an ambulance.

But the friendly police officer suggested it, and so this was fun, too.
It’s amazing what a team of highly-trained, combat-ready, loving policemen can do.

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Afterwards, Walker on his way in an ambulance.

DeVos: Disaster for the Disabled

All autism parents should be alarmed and appalled by Donald Trump’s nominee for education secretary, Betsy DeVos. The person the Washington Post refers to as a “billionaire dilettante” knows nothing about, and appears totally unconcerned about, the Americans With Disabilities Act, the bedrock of all our children’s hopes for a real education.

Betsy DeVos apparently ‘confused’ about federal law protecting students with disabilities

By Valerie Strauss, The Washington Post, 1/17/2017

devos-photoBetsy DeVos displayed at best confusion and at worst a lack of knowledge about a key federal law involving students with disabilities during her Tuesday confirmation hearing before a Senate panel that will vote on whether she should become President-elect Donald Trump’s education secretary.

Sen. Tim Kaine (D-Va.) asked DeVos about the federal Individuals With Disabilities Education Act (IDEA), which requires public schools to provide children with disabilities a “free appropriate public education” and governs how states and public agencies provide various services to millions of students.
Link to full article

Reading at Truman College

Upcoming Reading – All Welcome!

2 pm, Tuesday, Sept. 27
Truman College Library
1145 W. Wilson Ave., Chicago

Truman Distinguished Professor Robert Hughes will discuss his new book, Walker Finds A Way – Running into the Adult World with Autism – providing an up close and personal look at autism in real life. Reading, book signing, Q & A.

Autism Chic

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Northwestern University Magazine, Fall 2016

Television idolizes characters on the spectrum, but such portrayals leave many behind.

by Robert Hughes

He’s obnoxious but handsome, rude but brilliant, socially inappropriate and embarrassing and infuriating but always the smartest person in the room. His colleagues might not like him, but they know he has a heart of gold and make excuses for him. The boss would love to fire him but realizes he’s much too valuable to let go.

He — and sometimes she — is that staple of scripted television, the protagonist on the spectrum. From House to The Mentalist to Monk to Bones to Star Trek and, of course, every incarnation of Sherlock Holmes, television has produced heroes who embody several, sometimes many, traits on the autistic spectrum. One character, Sheldon Cooper of The Big Bang Theory, is like a walking textbook of Asperger’s syndrome traits.

When I first started writing about my son’s autism in 1997, I wondered whether or not I needed to define terms like “autism” and “OCD” for the reader. Were they part of the common reader vocabulary? Wasn’t autism rare? When my son was diagnosed, a psychologist friend estimated that there couldn’t be more than a handful of autistic children in the Chicago area. But when I started writing, I quickly learned otherwise; so many families were, like mine, grappling with a staggering rise in the incidence of autism. The rate was said to be one in 10,000 in the 1980s, when Walker was young, but had risen to one in 500 by the late 1990s. It is now estimated to be one in 68 births, according to the Centers for Disease Control and Prevention.

However much experts parse these numbers, the word autism itself is now part of our common vocabulary.

The rise of the protagonist on the spectrum has kept pace with this growth in awareness. Sherlock Holmes is the quintessential example. For most of the time after his creation by Sir Arthur Conan Doyle in 1887, he was an eccentric superhero. His personal psychology wasn’t parsed as it is today: What is his sexuality? Is he autistic? Is he emotionally damaged?

He was simply superior. He was cool.

Today Holmes’ character has an autism-like component that only adds to his mystique: He and the other pop heroes with a similar profile share stunning mentalities along with endearingly obsessive qualities. Medical research and, more significantly, conventional wisdom now recognize that people with autism might be intelligent or even extraordinarily so. I’ve more than once heard acquaintances say casually, “Oh, yes, he’s so smart he’s almost autistic.” In the world of television and movies, there is definitely a kind of “autism chic” — personal trouble with socialization that only adds to the glamour of the character.

Autism chic is, in one way, a very good thing. It entertainingly teaches the viewer empathy: Friends and colleagues of the hero see through the wall of eccentricity the character puts up because they sense the beating heart behind. They are forgiving and tolerant despite the hero’s regular rudeness. They know he needs friends even when he seems to be pushing people away. In this sense, autism chic is a small step toward understanding the world of autism.

But in another sense, it’s a distorting image of autistic people generally. Yes, these TV characters and my son are “on the autistic spectrum” — but — what a spectrum it is! Like millions of others, Walker is on the so-called “low-functioning” end. Because Sheldon Cooper and Sherlock Holmes et al. converse and support themselves, went to college and have occasional comically enhanced dates, they are good fodder for scriptwriters.

My son doesn’t have this kind of TV potential. All these characters can tell a doctor where it hurts. They can say “stop doing that” to someone hurting them. They can walk to the drugstore, select a toothpaste, pay with a credit card and return home without getting hit by a car or losing their wallets. They can chat with people about baseball, play cards, ride a bike. They can connect with others by exhibiting a special skill, a savant-like ability others find valuable or amazing.

My son, like many adults at the low end of the spectrum, cannot do any of these things. He’s a charming man with a warm personality and, for those who get to know him, a fun and rewarding friend. But Mr. Spock he’s not.

Instead, Walker needs a canny, well-funded, intensive support system. He needs society to recognize that his life can’t go forward without help, and help implies friendship, guidance, community and money. He needs people who like him and accept him on his own terms and are able to learn, like Holmes’ Dr. Watson, that a friend on the spectrum can be an excellent friend indeed.

Link to the magazine article

Robert Hughes ’72 MA, ’77 PhD of Chicago retired from teaching at City Colleges of Chicago in 2014. He has written two memoirs about his son, including Walker Finds a Way: Running into the Adult World with Autism (2016).

E-mail comments or questions to the editors at letters@northwestern.edu.

 

And What A Party It Was!

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Thanks to everyone who joined us Friday night for the Chicago Launch Party for Walker Finds A Way! What a terrific turnout for the reading, book signing and lively discussion at Chicago’s very own Women and Children First Bookstore.

Chicago activist Anne Sullivan posted:
The charming and witty author Robert Hughes, reading from his new book at Women and Children First Bookstore last night. To deal with the giant issues of an adult child with autism and still have the energy for this level of advocacy is inspiring! Read his books, then do something yourself to urge our legislature to fund services for people with disabilities. Illinois is the nations 5th richest state. We are 48th in funding for people like Walker. SHAMEFUL! Ellen Jividen Hughes, thanks for inviting me. You guys are the best.

More photos from the night:

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Book Launch Party!

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Book Launch Party for Walker Finds A Way

Friday, July 29, 7:30 pm

Women & Children First Bookstore
5233 N. Clark Street, Chicago

Reading by the Author – Q&A – Book Signing – Treats

Hope you will join us!