DNAinfo Chicago Article: State Becoming like ‘Ancient Sparta’

Thanks to DNAinfo Chicago reporter Ariel Cheung for this excellent article using Walker’s story in Walker Finds A Way to illustrate the effects of dire service cuts in Illinois.


State Becoming like ‘Ancient Sparta’ with Cuts to Autism Services: Author

Ariel
By Ariel Cheung | January 28, 2016
@arielfab

LAKEVIEW — Robert and Ellen Hughes didn’t watch Tuesday’s State of the State address.

As far as they were concerned, they’d seen enough to realize the state wasn’t functioning they way they needed it to. Worse, Robert Hughes said, “there’s no end in sight.”

WalkerRobertBusStopa

Walker Hughes (l.) is the subject of his father’s second book, “Walker Finds A Way,” in which the Hughes family navigates the world of adult autism.

In fact, just two days earlier, the Hugheses learned the state’s largest social service provider, Lutheran Social Services of Illinois, was cutting 30 programs, unable to operate them with $6 million owed by the state that was seven months overdue.

Home care for seniors, adult protective services and a day care for adults with disabilities were among the suspended services.

It’s a situation the Hugheses understand all too well.

At the heart of Robert Hughes’ new memoir, “Walker Finds A Way,” is his son Walker’s transition into adulthood as a person with low-functioning autism in Chicago. After aging out of the school system at 22, Walker tests out independent life in a group home at the start of the book.

The smiling young man who adores country singer Clint Black, “popcorn parties” and long walks through Lincoln Park seems eager for a chance at independence, which his parents also grow to enjoy after a brief period of empty nest syndrome.

But as six years go by, Hughes writes that the quality of care at the home declined in an alarming way, leaving Walker desperate to express his distress with limited verbal abilities.

Hughes, who lives in Lakeview, describes a subtle shift in the North Side group home he blames on the state’s financial disarray — an added pressure for the home to take on too difficult of a workload.

“Behind this group home that went bad was the fact they were financially strapped,” Hughes told DNAinfo Chicago. “They were making up rationalizations about Walker because they didn’t have the staff to deal with the situation they had taken on.”

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Hughes and his his Walker took daily walks for years, traveling from their Lakeview home to North and Clybourn, visiting Lincoln Park and making stops at Starbucks or Walgreen’s.

While Walker was unable to verbally tell his parents what was wrong, his physical decline spoke volumes, they said. In two months, he lost 65 pounds. He started coming home with bruises, and his parents were alarmed.

Yet they felt trapped, fearing that pulling Walker from the home would cost him state funding for the service or leave them trapped on wait lists for years.

As they grappled with limited options, Gov. Bruce Rauner announced in April 2015 — World Autism Month — that he was freezing $1 million of state support for people with autism, many of them children.

“Illinois isn’t ancient Sparta, where disabled infants were left to die of exposure on hillsides,” Hughes wrote in the memoir. “But some voters here seem to envy the practice.”

After writing “Running With Walker” in 2003, Hughes felt “his saga was over, as far as strangers reading a book about him were concerned.” In the first memoir, Walker starts off as a “severely active” 2-year-old in the 1980s. At the time, autism was believed to affect one in 10,000 births (now, it’s more like one in 45 children ages 3-17) and little was understood about the spectrum of abilities children with autism could display.

Walker - age 4

Walker Hughes, seen here as a child, is now 30 and continuing to forge his own path as an adult with autism.

As the first generational class of growing autism awareness reach adulthood, their changing needs are being considered at a national level. Earlier this month, presidential candidate Hillary Clinton announced a plan to improve safety, education, employment and housing for people with autism. Former Florida Gov. Jeb Bush and Ohio Gov. John Kasich have also addressed the topic.

As the Hughes family sought a solution to their turmoil, “I thought this is a story that should be told,” Hughes said. “People should know about this.”

“Walker Finds A Way” was released Jan. 21 and is available on Amazon.

Link to DNAinfo Chicago article 

 

 

Autism and the Ghosts of Christmas

W cookie 2015 - Copy

 

 

 

 

Walker,
Christmas Present

 

 

 

And a post from Christmas Past:

Chicago Tribune
December 24, 2006

Are these the shadows of the things that Will be, or are they shadows of the things that May be only?” Ebenezer Scrooge asks the Ghost of Christmas Yet to Come.

Surely fans of Charles Dickens’ “A Christmas Carol” find this scene the scariest in the story. It touches twin nerve endings: our fear of the future and our dread of death.

Unfortunately for me, I’ve experienced this moment, oh, upwards of 65 times, for “The Muppet Christmas Carol” is my autistic son Walker’s favorite film. For years, from the day after Thanksgiving until sometime after New Year’s when I have the courage to put a stop to it, Walker plays this video nearly every day, the words and songs serving as a background to whatever else is going on in our house. I’ve learned to tune it out, but when Scrooge reaches that moment when he begs to know the future, I cringe, if only a little.

As the years race by, Scrooge’s question becomes more and more urgent. My wife, Ellen, and I are 57; Walker is 21. His autism is so severe that he can’t–so far–converse or do productive work. He can’t safely leave the house alone. He can’t tell a doctor what’s wrong when he feels sick.

What will happen to Walker when we’re gone? Or, in the blunt words of countless friends and acquaintances, “What’s your plan?” (It’s amazing how frequently we’re called upon to make casual conversation about our inevitable demise.)

“What’s yours?” and several other not very snappy comebacks teeter on the tip of my tongue but are never uttered. I know that the question is a natural and obvious one, the elephant in the room. But the real answer I want to give is complicated, for the future is only one element in the juggling act the two us must perform as parents.

The short answer is, “We’re doing our best.” While not impoverished, we never seem to have an extra dime. So we work feverishly with a private foundation to establish a group home for Walker and other kids like him, a neighborhood residence where he can have his own world and do his nearest approach to normal work. All the while we do this, we are astonished at the lack of interest that state and federal governments have in a problem that will someday explode in all our faces. According to figures from the National Centers for Disease Control and Prevention, autism now afflicts up to 1 in 166 children and the numbers are getting worse. What will happen to all these children as they reach adulthood? Where is the No Adult Left Behind program that will face this problem honestly?

The future is only one ball we must keep aloft. Another, contradictory one, is hope–Walker’s dreams for his own life and ours for him.

No one is sure what causes autism or how it can be cured, but solid scientific knowledge about it grows steadily. So we persist in trying new medications–he now takes two new Alzheimer’s drugs that seem to have helped him with his concentration and following through on tasks–and trust in his own incredibly positive spirit.

He works hard and happily at writing sentences on his computer. He goes off to his special school each day with a grin and a spring–I should say, leap–in his step. And he tries every waking moment to say things to us, to make his thoughts known. And yes, he does improve, slightly, all the time.

The third ball, for us the trickiest one, is the challenge of valuing Walker as he is, here and now. He can be difficult. He’s a strong, 6-foot-3-inch young man who can suddenly, explosively jerk away from me and run through the mall laughing and shouting “french fries!” to the shock of everyone around us. He can, playfully but incessantly, repeat one-word demands until people feel like running screaming from the room.

But he’s also a charming, flirty, engaged guy who can suddenly turn off the “Law and Order” episode his parents have seen three times before, fall giggling onto the sofa, and with a gleam in his eye shout, “It’s a party all the time!”

Walker is rewarding to live with. Contrary to a recent theory that says autistic people lack empathy, he’s the emotion barometer of the family.

The real challenge that Ellen, Walker’s brother, Dave, and I have is empathizing with him, getting at the motivations and thoughts and needs of a young man who often seems like a kidnapping victim with duct tape over his mouth.

Years ago I saw a circus performer on TV juggle–successfully!–a flaming torch, a sword, and a bowling ball. It was dangerous, it was “impossible,” but most of all, it was funny. This is how my juggling act as a father often feels: risky, contradictory and absurd.

But as Walker cheers happily for the quadrillionth time at the end of his favorite movie and looks into my eyes for my response, I cherish Dickens’ words about the resurrected Ebenezer Scrooge: “His own heart laughed: and that was quite enough for him.”

 

 

 

Mary Schmich: Thanksgiving at the Hughes house

Thanks to Chicago Tribune columnist Mary Schmich for her insightful column about holiday traditions at our house – and many, many houses like ours.

walker kissWalker Hughes, 29, gets a goodbye kiss from his mother, Ellen Hughes, at the Clearbrook CHOICE Center in Evanston. (John J. Kim / Chicago Tribune)


Thanksgiving for Family a Ritual of Frenetic Togetherness

by Mary Schmich, Chicago Tribune
November 24, 2015

Over the years, Walker Hughes’ parents have learned how to customize his Thanksgiving, a ritual that begins early in the day.

Because Walker gets agitated staying in the house while his mother cooks, he and his father ride the Red Line down to State and Lake streets to watch the Thanksgiving parade.

Walker loves the parade but he can’t stay long — too much noise and color, the sensory overload of the human swarm — so when he’s had enough, he and his father start walking.

They walk around the Loop, head up Michigan Avenue, north toward the lake, walking, walking, often all the way home to Wrigleyville, arriving a little before dinner.

The Hughes’ house near the Belmont “L” stop is small, nothing like the farm where, for several years when Walker was young, his parents took him for an extended-clan gathering, the closest the family has ever come to a Thanksgiving that looks normal.

Out in the open land of Tennessee, Walker’s autism was easier to accommodate. He could bolt up from the table whenever he wanted, go out and roam to his heart’s content, with no one worried he’d dart into a busy street.

Here in Chicago, even now that Walker is 29, Thanksgiving is more complicated though it’s smaller: just Walker, his parents and his younger brother, Dave.

The meal is traditional and ample. A giant turkey, Ellen’s special stuffing and pumpkin pie. But no guests, no collective gushing over the big bird, no extended toasts.

Walker, who can speak but doesn’t converse, eats in a minute or two, usually while one of his parents sits with him at the table. Someone is likely to eat on the couch.

Then it’s on to the next phase of the ritual, which may involve “The Muppet Christmas Carol.”

His parents sum the day up in one word: frenetic.

“We’ve had to let go, let go of expectations about pretty pictures of what Thanksgiving is supposed to look like, really in our hearts let go,” his father, Bob Hughes, said when I called Tuesday. “We’ve had to build a different image of holiday in the house.”

Hughes, a retired Truman College English professor, has written about his son through the years, most notably in his 2003 book, “Running With Walker.” He is about to publish a sequel, “Walker Finds a Way: Running Into the Adult World with Autism.”

Knowing how many families deal with similar issues, I called to ask him about holidays with his son, who lives these days in a group home but visits on weekends and holidays.

Neither Bob nor Ellen, a freelance grant writer, pretends that it’s easy. They find consolation in the small things, such as the way Walker lights up at the sound of a Christmas carol or the sight of a Christmas tree.

“My dream of putting out my beautiful china and candles,” Ellen Hughes said, “I have to forget that. But that’s OK with me. You live the life you live and I adore him.”

For many people, maybe most, Thanksgiving Day is a thread that runs from childhood through old age, its traditions designed to connect the present to the past.

Bob Hughes remembers his childhood Thanksgivings in Oak Lawn, with his five siblings, cousins, aunts, uncles, three long rented tables in the basement, the games of box hockey and Clue.

That was never going to be Thanksgiving with Walker.

“It’s been a learning curve,” Hughes said, then he corrected himself. “An acceptance curve.”

Acceptance is the art of turning the difficult into the doable.

After this Thanksgiving dinner, if the ritual goes as usual, Bob and Walker Hughes will get in the car together and drive. Walker likes to ride.

Bob will plug in his earbuds to listen to a book while Walker, who prefers silence, will look out the window.

They’ll drive to various suburban Starbucks — Gurnee, Arlington Heights, Skokie — where the baristas know and greet them, hoping that they’re open.

“We’ll drive and drive,” Bob said, “and he’ll have a smile on his face staring out the window.”

I asked Bob and Ellen Hughes if they ever wished for a simpler, more superficially normal Thanksgiving.

Bob: “Thanksgiving is Walker and Dave. It is the family.”

Ellen: “I never had a Thanksgiving that looks normal. Nobody gets a whole normal set of people. Anyone coming in would think we were tragic, but we’re actually having fun.”

mschmich@chicagotribune.com

Twitter @MarySchmich

 

My New Book

Release Date: 1/21/16

walkerfindsaway

Here it is – ta da – my new book! 

It’s called Walker Finds a Way: Running into the Adult World with Autism.  A sequel to Running with Walker, this book  catches up on life since then, while focusing on the catastro-comedy of my autistic son Walker’s life in the last three years or so.

Running with Walker ended when Walker was 15, with a hopeful and positive feeling about the future.  Things continued to go well for several years until he entered a new land of troubles. Walker Finds a Way chronicles how Walker found an escape route and taught his parents a great deal about autism and life in general. It provides an intimate look at a family and a glimpse of an issue that looms larger in society year by year.

Walker is one of a growing population of young people with low-functioning autism. All over the U.S., when children “age out” of state-supported services, they and their parents suddenly find themselves abandoned by a system that purported to care. Adults with disabilities are practically invisible in comparison to young children with the same difficulties. How can people like Walker lead secure and satisfying lives? How can they have friends and work and feelings of self-worth? How can they make progress throughout their lives in connecting with others?

Walker Finds a Way explores these issues by looking closely and honestly at how one family—ours—faced them. It’s a book—if I do say so myself—that would be rewarding for any reader but especially for family and friends, teachers and caregivers of people with autism.

More information, and to order Walker Finds A Way