Kari Asher and her daughter Melissa Jones have spent virtually every day of Melissa's 22 years together. Born with a cleft palate and chromosomal abnormalities, Melissa is non-verbal, using sign language and writing to communicate. She is visually impaired and is considered developmentally delayed.
Born on Asher's 18th birthday (when she was married to her first husband), Jones's extra needs were apparent immediately.
"Right in the hospital she couldn't suck out of the bottle and as soon as they saw that, the doctors started doing tests," says Asher, who now lives with husband, Joel Asher, and Jones in Grants Pass, where she works full time in an accounting office.
"Being that young and not knowing anything about raising a baby and then having the extra problems on top was really hard; we didn't even know what a cleft palate was."
By the time Jones was 7 years old, a Medford plastic surgeon had performed three surgeries on the child, using extra skin from the roof of her mouth to form a more typical roof, the back of her throat and a uvula. She was also shuttled to and from clinics all over Oregon.
"You see every single type of doctor at every type of clinic and get every kind of test with this disability," Asher says. "You leave the appointments crying, you hear all sorts of terms you don't understand."
These days, Asher speaks to a great new marriage, the steadfast care Jones has received from Asher's mother, a "belief in miracles" and access to outside resources as the recipe that keeps her and her daughter healthy.
Although she still requires daily help with self-care and is challenged by a very short attention span, Jones has shown great improvement. She's been able to attend public school special education classes all her school-aged life, culminating with three years of vocational "life skills" and rudimentary job skills training. Once declared legally blind, she no longer needs spectacles, she displays a gift for spelling, and Jones's physical coordination is evident as she shoots hoops during Lifespan Respite Network's Kids Club at the Rogue Valley YMCA every other Saturday.
"Her record is 30 in a row," says Asher. "And she's learning while she's in that program to help others — like an aide — so maybe it can become a job."
Another benefit of the Saturday program is the time it gives Asher to decompress with her horse, forge a deeper relationship with God and her church, and for Jones to develop her own friendships.
"She's got two or three good friends through Lifespan and she sees them once or twice a week," Asher says. "They go bowling or to the park or just shopping — she loves to shop."
Jones also participates in vocational classes through ARC of Jackson County. It's Asher's hope that one day her daughter's love for videos, books and spelling might translate into a job stocking shelves at a library or video store.
"Well, sointenly," says the dapper, white-cropped man to his card-playing colleague. It's time to finish the game and move over to the bingo table, set up on the other side of the recreation room at Barnett Woods Retirement Home in Medford.
"Dad, you used to say that all the time: 'sointenly.' It's from The Three Stooges. They always used to say it that way. Do you remember that, Dad?" Thomas looks blankly past the pretty, dark-haired woman in the yellow shirt whom he usually doesn't recognize as his daughter. He's got his eyes on the bingo cards.
Julie Swallow brings her 87-year-old father, Thomas Porter, to the Senior Social Club every Tuesday and Thursday afternoon. Sponsored by the Lifespan Respite Network, the three-and-a-half hour activities period would be a perfect time for Swallow to catch some hours for herself, but she actually prefers watching her dad have fun with his "Boys Club," so she volunteers to stay instead of paying the $17.50 per hour.
"It's playtime for her and Dad," says coordinator Holly Churchill, who organizes several games and serves up refreshments to the seven to 10 seniors with special needs and their family members who attend each Social Club. "It's time for them to appreciate their family memories and, at the same time, to make new memories."
Porter came to live with Swallow and her husband, Edward, in their Phoenix home nine months ago, about four years after his wife died and three years after the couple had moved him to the Rogue Valley.
The step-up in caregiving came after Porter's memory problems worsened. One day Swallow found him locked in his shed out back. She'd considered it "just typical senility" until he had a CT scan about a year ago.
"It showed his brain had shrunk and that he'd had several mini strokes," says Swallow, who is 57 years old and also cares for her 85-year-old mother in Ashland. "They called it progressive dementia."
That made sense to Swallow, who'd witnessed a rapid progression of classic symptoms: accelerated memory loss, not eating, lapses in tasks and paranoia.
"And he's a packer — he packs and repacks his suitcases, saying he's going to move back to Illinois," says Swallow with a light, but somewhat resigned, giggle. "He doesn't pack clothes — it's all just junk."
Since he moved in, Porter's condition has worsened. Although he can feed himself and care for most of his personal needs, he often refuses to bathe, is very demanding, gets bored easily, and has started to wander into nearby neighborhoods.
"It's hard on our marriage and he's just getting more and more difficult to care for," she says candidly, explaining that she's seriously considering moving him to a full-time, assisted-care facility. "I thought it was going to work and be perfect, but it's not working."
Swallow is prepared for the move to drain his resources, with costs for a studio apartment with extra memory care running from $2,100 to $4,500 per month. Once his personal savings are gone, Swallow will count on Medicare.
"Adult foster care wouldn't be as expensive," she says. "But I think he'd have more to do and be happier at a full-time facility where there are more activities and a dedicated staff.
"This is all just so weird," she says, another smile and soft laugh rising to the surface. "I'm sure he never thought he'd live this long and now he can't remember anything."
Noticing her own laughter, she looks up. "You know, if you can't have a sense of humor about all of this, you might as well pack it in," she says. "Some people think I sound insensitive, but it's just my way of dealing with it."
Rowan Lily Hampson is climbing up the six-foot backyard fence that's topped with two feet of make-do extensions; she's trying to escape. Again. Her laughter rings through the open window and she's driving her grandmother just a little crazy.
It's another day in the life of Ruth Temple and this six-and-a-half-year-old who's severely impacted by autism. Although full of the same playful energy as most kids her age, Rowan is unable to talk (other than to say her favorite word, "Eat!" which throws her into fits of proud smiles), isn't potty-trained and is limited to a very strict diet.
"I'm definitely not retired," laughs 62-year-old Temple, a former elementary and middle school teacher. "At this point in time she is all-consuming."
Temple is one of more than 34,000 Rogue Valley residents — nearly one-eighth of the population — who provide unpaid care for someone with a chronic or disabling condition. Sometimes the cared-for person is living in the caregiver's home; other times, the caregiver makes visits to the sick person's home. In either case, most of these dedicated caregivers are middle-aged, employed women who earn a modest salary and still have children at home.
Temple took Rowan in almost three years ago, providing a consistent environment that had been missing in the girl's life. When she came to Temple's Ashland home, Rowan couldn't bear to keep her clothes on for more than a few seconds, went into regular rages, refused to be touched or held, and couldn't be contained or make eye contact.
"She's come a long ways," concedes Temple, who got Rowan to accept diapers and clothes by brushing her legs and arms with a surgical scrub brush every hour for six months as advised by an occupational therapist.
That was the first step of integrating Rowan into a larger world. Next came reworking her diet.
Temple was told of Defeat Autism Now, a nutritional protocol that can be very beneficial to autistic people. She immediately stripped all gluten products, casseine (found in dairy products) and cane sugar out of her granddaughter's diet.
"Right now she is drinking hemp milk and she does like homemade French fries and popcorn with olive oil and brewers yeast and some dried fruit and berries," says Temple. But her favorite is bacon, which Temple cooks every morning and packs into Rowan's school bag for lunch.
At 7 a.m. every weekday, Rowan catches the bus for half-days at a STEPS program at Griffin Creek School. Two days a week after school, she goes to a respite care provider. Temple has also arranged music therapy and cranial sacral massage therapy sessions for her granddaughter.
"She really is doing great. She's always laughing and is just precious," says Temple, who clearly sees the uniquely captivating and joyful aspects of her granddaughter, such as when Rowan is "stimming" — an autistic trait of extreme agitation where a repetitive motion seems to bring comfort and all eye contact is lost.
"Her biggest stimming thing nowadays is the load of pea gravel I've got out in the yard," explains Temple. "She'll pour it through funnels for hours, making a lot of little hand movements that are really interesting. They almost look like Hawaiian dancing or like she's using them to tell a story "¦ it's like the flight of a butterfly "¦ it's just beautiful the way she moves her hands."
That's not to say there aren't regular and exhausting challenges — Rowan is an escape artist who has shown up in neighbors' cars, she wiggles out of her seatbelt and has yanked on the emergency brake while in motion, she has mastered the padlock and can squeeze out of basically anything.
"The hardest part about this is you cannot take a shower, take a nap, you almost cannot take your eyes off her during the day," says Temple. "You get so incredibly tired and it gets kind of depressing."
Although she's located support groups, many of them don't provide childcare.
"I've found the hard way that if I take her somewhere, she falls asleep then is awake most of the night and we don't get back on track for a couple days."
Nonetheless, Temple is inspired by Rowan's development and hopes one day she'll learn to talk. "I believe we're at a crossroads where many positive things will happen," says this dedicated grandmother.