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A Lodi family struggles to give their developmentally disabled son a chance to live life to its fullest as he enters a world of unknowns
It's 6 a.m. when Clifford Weaver flips on the overhead light in his son's bedroom.
Ryan is still covered by his green and black panda bear bedspread, but he is awake and looks his father in the eye.
Clifford runs down a checklist with Ryan of the activities his son will do that day.
"School, then what?" Clifford asks. "What comes after school?"
"School," Ryan replies, his big hazel eyes peeking out from the covers.
"Come on, talk to me," Clifford prods.
Clifford will tell Ryan each activity, and Ryan will repeat it.
"Wal-Mart," Clifford says, signaling Ryan's afternoon trip to the store, where he'll be able to buy a small toy and coloring book.
"Wal-Mart," Ryan repeats quickly.
"Burger, fries," Clifford says, referring to the nearby McDonald's where Ryan will have a Happy Meal.
"Burger, fries," Ryan says with excitement.
"Come on buddy, you need to get ready," his mother Abby shouts from the kitchen, inside the Lodi family's modest East Oak Street home. "It's time for school buddy, you need to get ready."
Ryan, their darling son, is 6 foot 7 inches, 314 pounds and 22 years old.
He has a severe form of autism and is mentally retarded.
He's among hundreds of thousands of other young people in America with developmental disabilities — mental or physical disorders that can cripple one's chances of living an independent life.
p to 1 in 150 young people nationally have some form of autism, according to a 2007 study released by the Centers for Disease Control and Prevention.
In coming years, those children and young adults will leave the public school system, placing a strain on the nation's adult developmental disability services like never before.
The expected swell has been called the "autism tsunami."
Ryan will be among the first to crash through.
A world of unknowns
Ryan is a massive young man. His hands are the size of baseball gloves, his legs like trees and his chest as big as a wine barrel.
His deep guttural voice rumbles out in oneand two-word sentences. Language development is among the biggest challenges for those with autism.
Ryan will leave his public school in June, as all young adults must do by the age of 23.
His next step is full of unknowns.
The options for young adults with disabilities are limited, unclear and often hard to obtain, his parents and advocates for the disabled say.
Clifford and Abby wonder whether they'll find an adult day program to care for him — one that builds on the lessons and independence he's learned in school, one with trained and supportive caregivers. One that won't "warehouse" Ryan, cutting off his potential for personal growth — like learning to cross the street on his own, buy groceries or cook himself a meal.
They wonder whether Ryan will ever be able to work. Will he ever fall in love?
They worry about the day they'll be too old to care for him. Years of stress have aged Abby, 52, and Clifford, 53, beyond their years.
Each have gray hair, and often an exhausted look — a visage that brightens with a kiss from their son.
Their ultimate fear is that without supportive care, Ryan will unravel. That his acting out — his "challenging behaviors" as they're called in the industry — his scratching, pushing and hitting others, will get worse.
Perhaps he'll lose his temper at a day program, where staff won't know how to properly care for him, calm him or communicate with him.
Perhaps Ryan will cause serious harm to himself or someone else, they fear.
Perhaps he'll be locked in a state mental institution, by court order.
Such a place is always an option, adult services professionals have told Abby and Clifford. They could place him there now, "and be done with the matter," as some have phrased it, according to Abby.
"That's not an alternative, because we're not done with him yet. I mean that," Abby said defiantly. "We need someone who's going to allow Ryan to be the person he can be."
A love repeated
Ryan starts his day with a schedule because it is comforting.
Repetition is reassuring for all people with autism — the nation's fastest growing developmental disability.
The routine lovingly carried out by Abby and Clifford includes tying Ryan's size 15 sneakers, shaving his long, broad face, packing his lunch full of red — always red — food items, and preparing his allergy and anti-psychotic medications.
The young man, with short brown hair and a sometimes goofy smile, can get himself somewhat ready.
But he'll always need help.
Ryan's parents are no match for him physically.
They've known that for a long time.
When he was 10, Ryan knocked his father's two front two teeth out while rough housing.
Clifford hasn't attempted a wrestling match since.
And while Ryan's learned restraint, Abby, 52, and Clifford, 53, still struggle with their son's aggression.
He sometimes strikes or pushes others when he doesn't get his way.
The victims are sometimes Abby or Clifford. Other times it's one of Ryan's classmates or a disability aide, charged with taking Ryan on outings in the community.
He's hit, pushed or squeezed aides three times in recent years. Each incident resulted when Ryan felt threatened or that he was being ignored, his parents said.
He pinned one aide against the front door of his house, after the young woman grabbed the key chain attached to Ryan's belt loop — a special chain with stuffed animals attached.
Ryan clutches the animals when he gets flustered. It calms him.
He hit another aide who was talking on her cell phone instead of doing her job, Abby said.
Those with autism have little sense for social rules.
Ryan has been known to push people aside in a walkway as he's passing through, his parents noted.
He's learning to stop, and say "Excuse, me."
Navigating the maze
Ten years from now, there will be roughly 18,000 adults in the region who need developmental disability services — twice the number now, according to Dick Jacobs, executive director of the Stockton-based Valley Mountain Regional Center.
Those with autism, now about 15 percent of the center's clients, will continue to drive that growth, Jacobs said.
Valley Mountain is a private nonprofit contracted by the state. It provides services for adults from Lodi to Sonora to Modesto, and decides which services families should get.
Helping a child move from home to the outside world isn't easy for any parent. It's even tougher for those of a child with disabilities.
Many parents see a "black hole" as they search for answers, said Deena Hernandez, a life quality assessment counselor for the state's Area 6 Developmental Disability Board, also based in Stockton.
"It's not easy — it is a maze," she said.
Abby and Clifford Weaver say the services are more than just hard to find.
They're often limited and sometimes cut off unexpectedly, they say.
Ryan recently lost out on physical therapy to treat his scoliosis, a painful spinal condition, when a Stockton gym changed hands.
No replacement therapy has been offered, Abby said.
Now, due to budget cuts, Ryan stands to lose his behavioral therapist, she added. The doctor has earned the trust of the family, working with them for the past year-and-a-half on how to rein in Ryan's aggression.
Jacobs, the center's director, acknowledged the Delta Regional Project, which houses Ryan's behavioral therapist, will soon close. Staff will be reassigned by the state out of the region, he said.
He said he did not know the details of the loss of physical therapy, and could not comment on the Weaver family specifically.
As far as the disability aides — who are contracted by Valley Mountain through other agencies — Jacobs said Valley Mountain takes serious any allegations of negligence.
He noted that the aides can be fired or retrained if found at fault.
Valley Mountain makes the final call on whether someone like Ryan should have more services. When the group says "No," animosity can often develop, Jacobs said.
"We're trying to support people and make people's lives better, and occasionally we disagree on what would be a better life," the director added.
Out in the open
Ryan is very much a part of Lodi — his parents have made sure of that.
He walks up and down the avenues, takes the city's Dial-A-Ride buses, all with assistance.
He feeds the geese at Lodi Lake. He slides and swings at local playgrounds and checks out children's videotapes at Tom's Used Books and the library.
Not everything, of course, goes smoothly.
Ryan is anxious at Twin Arbors Athletic Club on a recent afternoon.
He struggles to focus on the elliptical machine, asking to move to the next workout.
"(New) machine?" he says to Bart Longorio, a caretaker privately hired by the Weavers, and a self-described gym rat.
"Come on Ryan," Longorio replies. "Five more minutes, come on."
"EEUUHH! No, no, no!" Ryan yells in a high-pitched voice, as gym members look on.
People with autism become bored quickly. Five minutes can seem like an eternity.
It can make the difference between Ryan acting appropriately, and exploding.
Frustrated, he climbs off the elliptical. He throws furtive glances to those around him.
He tries the shoulder press, but can't sit still despite Longorio's pleas.
"HOW ARE YOU GOING TO HAVE," he screams.
His voice then goes to a siren pitched wail: "EEUUUHHHH!!!!!!"
Ryan grabs his gym bag, rips it off the machine and storms out of the exercise room.
Longorio doesn't charge after him, but instead gives him time and space to cool down.
He explains the screamed phrase is a common one — "It's something he says when he gets mad."
After a short break, the two head to the pool to swim laps, an activity that soothes Ryan.
His behavior in the exercise room wasn't appropriate. But it didn't escalate beyond the scream, either.
Individuals with autism resist instruction. They're frustrated easily, and don't have the language skills to express themselves.
Their behavior can seem odd or even frightening to those unfamiliar.
Rhonda Diaz, a staff member at Twin Arbors, was scared when she first saw Ryan.
She, like many at the gym, kept her distance.
"They're intimidated," said Diaz, who's gotten to know Ryan since. "People say 'Why would they have him get stronger' — I say he's got to exercise."
"The way he yells, it's kind of scary," Diaz adds. "I'm not intimidated at all. He's like a gentle giant. He always says 'Thank you' when he comes up to me. He definitely has manners. It's definitely different knowing (his conditions)."
Abby Weaver contends that "it takes a village" to raise a child with developmental disabilities.
Advocates for the disabled agree. There's been a shift in recent years away from the separate but equal treatment of the developmentally disabled.
Today, the emphasis is on integration, in schools, in the workforce and in homes and apartment complexes.
Such inclusion provides more opportunities for the developmentally disabled. It's also the most financially sound approach.
Adult day programs often provide the next step for young people with disabilities, as they move beyond school.
The Weavers have targeted Person Centered Services and the Victor Learning Center, both in Stockton. Each has supportive, trained staff and a range of activities for adults with developmental disabilities, the Weavers and advocates said.
There's no guarantee, however, that Ryan will be accepted at either.
Each has a waiting list.
Ryan must literally wait until someone dies before he can be considered.
Beyond the two programs, options are limited. The remaining ones offer little more than baby-sitting, or taking adults to the mall to window shop all day, the Weavers and industry professionals said.
Ryan's parents are also considering their son's eventual move out of their home. They hope to send him for one weekend a month to a residential care home, slowly exposing him to a world without them.
Again, they don't know if the homes will accept Ryan.
They don't know how Ryan will respond. Will he behave? Will he be terrified?
How will Abby and Clifford adjust without their "big goose?" as his father playfully refers to him.
A big Teddy Bear
Yessica Salgado grew up working in the residential care industry. Her father runs a Stockton home for seniors.
The 25-year-old with long, curly brown hair has worked as an aide for Ryan for 18 months.
The two have a special bond.
Over time, Salgado, who also serves as a job coach for people with developmental disabilities, said she "kind of fell in love" with Ryan.
"My first impression was 'Wow,'" she said, gazing up at Ryan with a look of feigned fright, as the two waited in line at the 99 Cent Store on Kettleman Lane last month. "But as I got to know him, he was a big Teddy Bear. He was so lovable, and I have never seen a (bad) behavior toward me. I think that's because we get along so good."
With a calm demeanor and steady voice, she's able to control Ryan with ease.
Though Ryan will stray for a moment at the store, distracted by the colorful array of toys, candy and gum near the check-out, Salgado simply offers her hand to him, guiding him back in line.
It's late in the evening and already dark, but the two drive to Lodi Lake, because it's on Ryan's schedule.
Changing plans can cause those with autism to act out.
At the lake, there are no geese around.
Ryan dumps slices of wheat bread near the water anyway. It is routine.
Birds will find the food eventually, Salgado says.
Ryan climbs on the swingset nearby and begins to soar high into the night, framed from behind by a massive oak.
The swings are perhaps Ryan's greatest escape, an activity that calms him — and others with autism — like no other.
New heights
With their son in good hands, Abby and Clifford complete paperwork for Ryan. It's needed to keep him on Clifford's health plan.
Clifford spends much of the week in Oakland, where he works at a postal distribution center. Abby takes care of Ryan full-time.
It's rare that the husband and wife have uninterrupted time together.
On this recent day, the two had a chance to go to the gym. Later, they even stopped for a short, infrequent treat: a glass of wine together in Downtown.
The two have not had a vacation since a weekend trip to Old Sacramento last July.
Raising a child with disabilities strains all families and marriages.
It breaks some.
There are cracks in the Weaver family.
Abby and Clifford's eldest daughter, Heather, has stopped visiting and cut off nearly all contact.
She's afraid for her own children around Ryan, Abby said.
Still, somehow, the couple manages to move forward.
Not all the time is somber.
There are moments of pure joy, Clifford said, like when Ryan will run up, grab him around the neck and smack a big kiss on his cheek, then walk off.
Other times the three, Abby, Clifford and Ryan, will walk to Emerson Park together.
Ryan will stare up at the clouds, point out the birds and airplanes above.
Sometimes he'll pull down a tree branch full of blooms for his mother and father to smell.
At the park, Abby and Clifford will run, jump and romp alongside Ryan, their 6-foot-7-inch 314-pound, 22-year-old son.
"There's nothing we won't do," his mother said. "It's like being a kid again."
Stepping back for a moment, they'll watch Ryan climb onto a swing.
He'll giggle as he begins to sway, eventually letting out a deep "belly laugh" as he reaches his soaring height, Abby said.
His face flushes, his eyes brighten. Soon, he becomes serene, rising and falling in the afternoon sun.
"Not too high, Ryan," his father warns.
"No, let him go," Abby responds. "He's doing fine."
Beckwith Wiedemann syndrome
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