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Parenting a disabled child at age 60

http://www2. arkansasonline. com/news/ 2009/jul/ 01/parenting- disabled- child-age- 60-20090701/

Parenting a disabled child at age 60
BY DONNA ST. GEORGE THE WASHINGTON POST

For Gail Ertel, who has 11 grown children, the golden years are all about McKenzie. She changes her diapers. Picks up her dropped toys and spilled cereal. Reads from her favorite storybooks. Sings as she sways the child in her mesh cocoon of a swing.
Their lives are bound across three generations, a great-grandmother in her 60s and a child of 7 who is autistic, medically fragile and virtually blind. McKenzie babbles but does not talk. Her sign language is minimal. In times of distress, she bites and furies and flails.
The two share a rented townhouse in suburban Woodbridge, Va., where Ertel reveled the day McKenzie learned to eat a Cheerio, to clap her hands, to open a door. Ertel keeps faith in the child's possibilities, lifted by her deep embraces and sudden smiles, her humming of classical music. Recently, McKenzie used a cane for the first time.Ertel cried.
But the economic fragility of their lives has rarely been so clear - their difficulties showing how tough it can be to get by as the solo caregiver of a child with severe disabilities. This is especially so for older caregivers, who often have less income and more of their own medical problems. Nationally, nearly 200,000 children ages 5 to 17 with disabilities are in the care of a grandparent, according to census statistics.
Ertel's sense of stability unraveled when she learned in May that she was ineligible for a Medicaid benefit that helped keep her and McKenzie afloat - $400 a week that Ertel had combined with her Social Security and McKenzie's disability check. For Ertel, it was no small irony that the imperiled benefit was for six hours a day of personal care, which Ertel provides round-the-clock.
Recently, Medicaid officials told The Washington Post that a mistake had been made and that the benefit was not in jeopardy. But Ertel's relief was offset by disappointment. Medicaid officials also said that as a paid caregiver, she is ineligible for respite care, which is what she hadbeen seeking in the first place. It allows a few hours' break every so often, with hired help to fill in.
So Ertel will get by, but will not get relieved, which advocates say is a problem. Time away from caregiving "is an absolute necessity, especially for an older grandmother, " said Jill Kagan of the National Respite Coalition, who said that in some cases too much stress leads to arrangements such as foster care or institutionalizatio n.
In 2001, Ertel's 16-year-old granddaughter gave birth to McKenzie Campbell. Three weeks later Ertel, a widow, took over the baby's care and closed her home day-care business of 19 years. Rearing McKenzie, who was hospitalized 17 times in her first year, was unlike anything Ertel experienced with her own large brood.
Ertel's struggle is but one example of how difficult it can be to do well by children with disabilities and still pay the bills, said Dawn Peifer, president of the Virginia Association for Parents of Children With Visual Impairments. Many parents lose jobs as they juggle medical and therapy needs with work demands.
Peifer met Ertel and McKenzie four years ago at a workshop and has become a friend, Peifersaid. "McKenzie's a smart little girl, and she's got a lot locked inside her little body, and the only one who seems to understand her is Gail."
Ertel said, "I'm pretty sure God prepared me for this years ago because he put me in the children business."
Kelli Castellino, who manages the office where McKenzie gets occupational therapy, said of Ertel: "She's a remarkable woman and does a great job with almost nothing. ... Gail just never gives up. She just rolls with it."
Ertel's days are defined by the child. She bathes her, cooks for her, gives her medicine. She stacks blocks. Plays music. Walks her around the block.
McKenzie sleeps four to five hours a night - so Ertel does, too. She gets by with what she calls "Navy showers" - fiveminute affairs with McKenzie perched on the toilet while Ertel peers around the shower curtain.
McKenzie cannot be left alone for even minutes; she grabs objects off the counter, swishes her hands in toilets, puts everything in her mouth. Ertel monitors her hydration and blood sugar. Two months ago, McKenzie fell into adrenal crisis and landed in the emergency room. "A virus can be lifethreatening, " Ertel said.
Ertel has long pondered the mysteries of McKenzie's medical conditions. She rattles off diagnoses: frontal lobe dysgenesis, septo-optic dysplasia, optic nerve hypoplasia, panhypopituitarism, hypothyroidism, diabetes inspidus. The terms tumble out so easily that one practitioner recently interrupted her.
"What's your medical background?" he asked.
"M-C-K-E-N-Z- I-E," she spelled out.
Ertel brightens as the child does - on a walk to feed the geese, during a choo-choo game in the living room, amid the familiar joy of a soft-baked sugar cookie. The good days are lighthearted. In June, McKenzie took her turn at bat with a Little League team for disabled children.
She so charmed the coach that he carried her around the bases.
The bad days are more stressful. On a recent trip to the supermarket, McKenzie tried to climb out of the shopping cart. She screamed and cried. She tried to bite. Ertel cut the trip short, but not before a fellow shopper cast her a long, disapproving look.
"She has no idea," Ertel said.
Jacquelyn Calbert, a neurodevelopmental pediatrician at Children's National Medical Center, where McKenzie sees seven specialists, said that the girl has autism spectrum disorder and that the combination of visual and cognitive deficits has led to a significant developmental delay. In several ways, the child's functioning is much like a toddler's.
McKenzie understands more than she can express and responds to Ertel's voice, Calbert said. "There is definitely a connection," Calbert said. "She is comforted by her grandmother. "
At night, the two have a ritual. McKenzie climbs in bed, and Ertel places her hands on McKenzie's and prays. McKenzie lies still. "She feels the peace," Ertel said.
Ertel kisses the child. In turn, McKenzie reaches both hands around her great-grandmother' s neck. She pulls her in and hugs tight.

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