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For the love of Ryan

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Posted: Friday, March 21, 2008 10:00 pm

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.

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Up 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.

Autism at a glance
  • Autism is the fastest-growing developmental disability in the nation.
  • Roughly one in every 150 children is diagnosed with some form of autism.
  • Boys are four times more likely to suffer from autism spectrum disorders than girls.

    Sources: Autism Research Institute, Autism Awareness Association, Inc., California Department of Developmental Services

    Options for adults with developmental disabilities

    As people with autism, mental retardation or other disabilities transition from the public school system, options vary for what to do next:

    Day programs: Between 25 and 30 programs in the region provide care, activities and instruction from morning through afternoon. Activities range from games and coloring to gardening, cooking and, for many, visiting the local mall. Most provide some independent living instruction. Few focus on job training, however - something advocates for the developmentally disabled say needs to change.

    Residential living centers: There are roughly 250 centers in the region, including San Joaquin, Amador, Calaveras, Tuolumne and Stanislaus counties. They range from board and care homes with skilled support to homes or apartments where adults live alone with only occasional help from visiting aides.

    Job training centers: There are limited options, though programs at San Joaquin Delta College and Person Centered Services in Stockton are two exceptions. Advocates say they'd like to see more offerings by Delta College and more focus on job training at the region's day programs.

    State institutions: The last resort for those with developmental disabilities are state-run Developmental Centers. In recent years, the state has worked to drastically reduce the number of people placed in the centers, partly due to the high cost to run them. They have a population of about 2,600 people. Roughly one quarter of one percent of the region's developmentally disabled are placed in the centers, most by a court order.

    Sources: Valley Mountain Regional Center, State Council on Developmental Disabilities/Area Board 6

    Resources for the developmentally disabled

  • Valley Mountain Regional Center provides services from behavioral therapy to job training. Call (209) 473-0951, or visit www.vmrc.net
  • Family Resource Network provides families with support and training to understand the disability system. Call (209) 472-3674 or (800) 847-3030, or visit www.frcn.org
  • Area 6 Developmental Disabilities Board, a state group set up to protect the rights of the developmentally disabled. Call (209) 473-6930, or visit www.areaboard6.ca.gov

    Glossary

    Developmental disability: A mental or physical condition that occurs during childhood and is expected to continue indefinitely. It constitutes a substantial handicap, affecting one's ability to function independently. It can Include mental retardation, cerebral palsy, epilepsy or autism, or a combination of the disabilities.

    Autism: A disorder of social interaction, communication and behavior. It typically shows itself within the first three years of life and includes cognitive impairment, as with Ryan Weaver. A child diagnosed with autism may have some or all of the following characteristics: often prefers to play alone; fails to start and develop friendships; spoken language is delayed or not present at all; resists eye contact; engages in prolonged odd body movements; fascinated by spinning objects.

    Autism spectrum disorders: Milder forms of autism characterized by highly repetitive behavior, like rocking or marching in place. The disorders, like Asperger Syndrome, do not necessarily include cognitive or language impairments. Many high-functioning individuals, from Bill Gates to Albert Einstein to Wolfgang Amadeus Mozart, have had autism-like disorders.

    Stimming: A term used to describe self-stimulation by people with autism. Common forms include hand flapping, body spinning or rocking or lining up or spinning toys or other objects. The repeated behavior provides needed sensory arousal, and can often help calm individuals with autism. Ryan's stimming includes clutching a set of stuffed animals attached to his belt or rocking back and forth.

    Mental retardation: A condition manifested during childhood that significantly impairs an one's intellectual, social and day-to-day living skills. It ranges in degree from mild to moderate to severe. Those with mild retardation can potentially work and live independently. Those with moderate retardation, including Ryan Weaver, are generally able to learn to care for themselves and live and work semi-independently, while those with severe retardation may need greater support to achieve those goals.

    Beckwith-wiedemann syndrome: A rare genetic overgrowth disorder, characterized by large body size, large tongue, enlarged internal organs, the presence of an abdominal wall defect and low blood sugar in the newborn period. Ryan Weaver exhibited nearly all of the symptoms, requiring 14 surgeries, several on his tongue and tonsils to enlarge his breathing passage, to correct a cleft lip, realign his jawbone and repair his intestines.

    Sources: Valley Mountain Regional Center, WebMD.com, Abby and Clifford Weaver

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."

Contact reporter Chris Nichols at chrisn@lodinews.com.

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11 comments:

  • posted at 9:38 am on Mon, Mar 31, 2008.

    Posts:

    The Pat on the Back award goes to the parents, I commend you Dad and Mom for the dedication, time, acceptance and most of all patience. I say all this because I too have a son who is disabled. He was put into a group home (not my choice) He is well taken care of. Unfortunalty, we live so far away that we don't see each other. But he knows that we love him very much. Once again, Bravo Dad and Mom, I know its difficult at times, But God gave you a Angel!

     
  • posted at 3:47 am on Sun, Mar 30, 2008.

    Posts:

    We want to thank our community,at large(Lodi and beyond)for being so gracious with Ryan.The LNS,the editor,Chris Nichols(reporter),Brian Feulner(photographer),for presenting this story in such a positive and informative way has truely touched our hearts.Thanks,The Weavers.If we can be of help to anyone,contact us at
    weaver.abby@yahoo.com

     
  • posted at 3:18 am on Sun, Mar 30, 2008.

    Posts:

    clifford and abby you are truely amazing

     
  • posted at 1:50 pm on Thu, Mar 27, 2008.

    Posts:

    I want to say thank you to the LNS for this wonderful, heart felt and important local "Life story"! I am proud to know this family! Raymond.

     
  • posted at 5:29 pm on Sun, Mar 23, 2008.

    Posts:

    it is alont of responsiblies your story about your son Ryan let me know i not alone with this and there are loving parents going threw the same thing as i am you have been able to have a schedule for Ryan i have not been able to do that i do take my son every where i go he is always with me your story tell your everyday life and it tell the story of other parents days and nights thank you again for your story i hope to meet you one day

     
  • posted at 5:14 pm on Sun, Mar 23, 2008.

    Posts:

    i have learn by reading your story that most adult or children with disablies get upset and have anger problem my son does you can not force him to do anything he doesn't want to do you learn to found way to get there attention on other thing your son Ryan is tall he a big adult and i am sure it not easy alot of times i also would never put my son anywhere else but with me to raise him maybe one day will meet along the way thank for your story i love reading it

     
  • posted at 5:04 pm on Sun, Mar 23, 2008.

    Posts:

    I don't know you Abby,Clifford,or Ryan my son is a year older than your son i understand what it take to raise a disabled adult it is not easy and it take alot of your time my parent help me alot also my son was in adult program in the lodi school dist i am at this time trying to find a program for adults with developmental disabilities since my son been in school since he was 13 months i gave him a break from school my is son is short but strong and is alot like your son

     
  • posted at 3:36 am on Sun, Mar 23, 2008.

    Posts:

    That's great his parents take care of him. So many in their situation don't. God Bless you!

     
  • posted at 2:37 pm on Sat, Mar 22, 2008.

    Posts:

    seeing as how I have know them all my life as Im cliffs younger brother this is just a little I have seen and heard they have had to go thought and put up with and all they have lost I have been blessed to see Ryan growing and learning and them getting old but arent we all what I have seen and know is how they help other's no matter what and to think what all they are/went through to get to know it all so far as when they pass on we all will losemkw

     
  • posted at 10:24 am on Sat, Mar 22, 2008.

    Posts:

    God bless Ryan and his family. My daughter has Down syndrome, and I've been researching different adult programs for a few years now (my daughter's currently a teenager). I'm impressed with programs in other areas, and we may even move when she grows up.

    Lodi Adult School has a relatively good program for people with developmental disabilities, though, and if we stay in Lodi, my daughter may attend that one.

     
  • posted at 3:49 am on Sat, Mar 22, 2008.

    Posts:

    I am very very proud to know Abby, her husband Clifford and her son Ryan. When ever a care provider is going somewhere in Lodi and I see them, I make sure that he is being cared for properly. The Weavers are very loving and compassionate people and I wish every family with a disabled child could be so loving, untiring and unselfish! Thank you Chris Nichols for putting together such a wonderful article. Raymond Cook

     

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