sushilover
Mouseketeer
- Joined
- Aug 25, 2003
In January, the Wall Street Journal published an article about an adult autistic man living with his 84-year old father. The link to the original article is:
http://www.disboards.com/showthread.php?s=&threadid=488199
This is an update to that article that was published yesterday.
June 3, 2004
At 49, Autistic Man
Spends First Nights
Without 'Daddy'
Tim Tullis Finds New Rhythms
In a Crowded Home;
A Get-Well Card of Yarn
By CLARE ANSBERRY
Staff Reporter of THE WALL STREET JOURNAL
PITTSBURGH -- One afternoon in early March, Tim Tullis, autistic and 49 years old, came home to the cramped apartment he shared with his father, only to find him gone.
He searched the bedroom, the kitchen and bathroom. "He kept saying 'Daddy Daddy.' I said, 'Daddy is in the hospital,' " says his older sister, Linda Biegenwald. Earlier that day, Mrs. Biegenwald's husband had taken Donald Tullis, weak and jaundiced, to the Veterans Administration Hospital. She promised her 84-year-old father that she would spend the night with Tim so he wouldn't be alone.
Mr. Tullis's greatest worry as he reached his ninth decade was what would happen to his son when he was gone. Tim's mother, Gert Tullis, died about five years ago, and at that time Mr. Tullis assumed all of Tim's care, bathing and shaving him, and packing his lunch. Father and son had their comforting routines, watching Lawrence Welk reruns together in the evenings and taking long drives in the country on weekends, stopping for lunch at Wendy's and eating on TV trays in their Dodge Caravan. During the week, Mr. Tullis had popcorn and water waiting when Tim came home from his days at the Ross Center, which works with older adults who have developmental disabilities and is part of Mercy Behavioral Health.
Mr. Tullis, a retired laborer, managed but was slowing down. "Eighty-four is getting up there," Mr. Tullis, who was featured in a Jan. 7 front-page story in The Wall Street Journal, said. "Pretty soon, you know, I won't be around for him to come home to."
In an aging population, with overtaxed resources for the disabled, a growing number of families face the Tullises' predicament. An estimated 707,600 people with developmental disabilities live with caregivers, mainly parents, over the age of 60, according to a report this year by the University of Colorado's Coleman Institute. These older parents were among the first to shun institutional care and did so at a time when there was little community support, so they were largely on their own.
Even today, options are limited. Nationwide, an estimated 80,000 families are on waiting lists for government-funded residential services, such as supervised housing or respite for elderly parents.
Mr. Tullis knew Tim would eventually have to leave home. He never asked his three older children, a son and two daughters, to take care of Tim and didn't want to burden them. "We have to make provisions for him to go on his own," said Mr. Tullis.
More than a year ago, Tim started spending Thursday afternoons and early evenings with a family named Badaczewski, a routine created to get him used to being away from his father and grow comfortable enough to spend the night there.
A trial overnight visit wasn't expected until late April, but when Mr. Tullis was going to the hospital, Marianne Badaczewski got a call from Tim's case manager, saying that Tim needed a place to live temporarily.
She is accustomed to these calls. For the past 17 years, Mrs. Badaczewski, who has a bachelor's degree in psychology, and her husband, Larry, who has a master's degree in social work, have provided respite care for the developmentally disabled in their home. They had lived in a group home for four years after they were married and wanted to continue that work to expose their six children to the needs of others and to supplement their income. They receive about $115 a day in state and federal funds for Tim's room and board.
Linda Biegenwald packed a bag for her brother and Mrs. Badaczewski picked him up.
Tim ate dinner with the family, as he had done every Thursday night. When he was finished, he got up from the table and gently led various family members to the front door, saying "Go see Daddy. Go see Daddy." Because he was growing increasingly anxious, breaking out in a sweat and wiping his brow, Mrs. Badaczewski drove him to his apartment, and to his sister.
But the next night he was back at the Badaczewskis. Because Tim was still very upset, Mrs. Badaczewski called the hospital so his father could speak to him and let him know he wanted Tim to stay with Marianne. He has been there ever since.
Mr. Tullis never came back to the apartment. He was diagnosed with liver cancer and went to live with another daughter, Sarah Banal. A nun at the Ross Center, Sister Jeanne, helped Tim decorate construction-paper cards with stickers and yarn to send to his father. On them, Tim printed in big block letters his favorite words, "Daddy" and "Dodge Caravan." For Easter, he decorated eggs and put two of them in a bag for his father.
Mr. Tullis felt it best that Tim didn't visit, fearing his son wouldn't be able to understand why they couldn't go home. Mrs. Banal believes it was best for her father, too. "He wouldn't have been able to say goodbye," she says.
Mr. Tullis died April 20 and was buried next to his wife at Mount Royal Cemetery. Tim wasn't told, but apparently overheard someone at the Ross Center mention that his father had died. Every once in a while, he blurts out "Dad died" and then "dye Easter eggs." Mrs. Badaczewski later took Tim to the cemetery. He walked around his father's unmarked grave but said nothing.
On a recent afternoon, Tim Tullis walked up the front steps of what is, for now, his home, a two-story brick Tudor on a quiet cul-de-sac with a rambling wood deck out back.
Waiting for him was Madeline Badaczewski, a barefoot 6-year-old with short brown hair and bangs. The two shared a bowl of popcorn. When he ate too fast, Madeline patted his arm and told him to slow down. A little later, they sat in the playroom, Tim in a La-Z-Boy Recliner, Madeline on his lap, watching a cartoon on television.
Once unwilling to walk into a post office and mail a letter by himself, Tim goes with the family to school concerts, swim meets and church. The two younger Badaczewski boys, Eli, 8, and Nathan, 10, act as gentle border collies, making sure Tim stays with the group. The other children have their jobs, too. At mealtime, Madeline folds his hands to say grace. She is one of the few people Tim will hug. Luke, 12, gets up early in the mornings and makes Tim breakfast the way his father did, corn flakes and water. Caroline, 17, has popcorn ready for Tim and Madeline. Joseph, 21, the oldest and in college, shares his room with Tim.
A few weeks ago, Tim turned 50. Mrs. Badaczewski made pizza and a big chocolate-chip cookie. The children surrounded him and sang "Happy Birthday."
Tim's sisters, Linda and Sarah, came to visit him recently for the first time. He was sitting comfortably in his chair, watching TV. They were surprised at how well he had adapted. "It was like he went from just being with my father to a household full of people. He seems so happy and content," said Mrs. Banal.
Mrs. Biegenwald is compiling a scrapbook for her brother, with photos of Tim and his parents on summer vacations to Yellowstone. She gave him the afghan of brightly colored squares that their mother had crocheted. It's draped over his chair. Sitting next to him is a small framed photo of his father in a blue flannel shirt.
Tim's sisters are happy the transition has gone smoothly and wish it were a permanent solution, but it isn't. Mrs. Badaczewski is not sure how long she can keep Tim. Two men who suffered brain damage in their youth live with the family permanently. To add a third would require special licensing and zoning. Until some other arrangement can be found by his case manager, she says, Tim is welcome.
In the meantime, Tim is learning to do more on his own. He gets his own glass of water. "We're working to get him to pass out napkins at the table," says Mrs. Badaczewski and to say "please" and "thank you" with regularity.
When he wanted an oatmeal bar, Mrs. Badaczewski asked him what he should say, hoping to elicit a "please."
Tim responded, "Come here, cookie."
http://www.disboards.com/showthread.php?s=&threadid=488199
This is an update to that article that was published yesterday.
June 3, 2004
At 49, Autistic Man
Spends First Nights
Without 'Daddy'
Tim Tullis Finds New Rhythms
In a Crowded Home;
A Get-Well Card of Yarn
By CLARE ANSBERRY
Staff Reporter of THE WALL STREET JOURNAL
PITTSBURGH -- One afternoon in early March, Tim Tullis, autistic and 49 years old, came home to the cramped apartment he shared with his father, only to find him gone.
He searched the bedroom, the kitchen and bathroom. "He kept saying 'Daddy Daddy.' I said, 'Daddy is in the hospital,' " says his older sister, Linda Biegenwald. Earlier that day, Mrs. Biegenwald's husband had taken Donald Tullis, weak and jaundiced, to the Veterans Administration Hospital. She promised her 84-year-old father that she would spend the night with Tim so he wouldn't be alone.
Mr. Tullis's greatest worry as he reached his ninth decade was what would happen to his son when he was gone. Tim's mother, Gert Tullis, died about five years ago, and at that time Mr. Tullis assumed all of Tim's care, bathing and shaving him, and packing his lunch. Father and son had their comforting routines, watching Lawrence Welk reruns together in the evenings and taking long drives in the country on weekends, stopping for lunch at Wendy's and eating on TV trays in their Dodge Caravan. During the week, Mr. Tullis had popcorn and water waiting when Tim came home from his days at the Ross Center, which works with older adults who have developmental disabilities and is part of Mercy Behavioral Health.
Mr. Tullis, a retired laborer, managed but was slowing down. "Eighty-four is getting up there," Mr. Tullis, who was featured in a Jan. 7 front-page story in The Wall Street Journal, said. "Pretty soon, you know, I won't be around for him to come home to."
In an aging population, with overtaxed resources for the disabled, a growing number of families face the Tullises' predicament. An estimated 707,600 people with developmental disabilities live with caregivers, mainly parents, over the age of 60, according to a report this year by the University of Colorado's Coleman Institute. These older parents were among the first to shun institutional care and did so at a time when there was little community support, so they were largely on their own.
Even today, options are limited. Nationwide, an estimated 80,000 families are on waiting lists for government-funded residential services, such as supervised housing or respite for elderly parents.
Mr. Tullis knew Tim would eventually have to leave home. He never asked his three older children, a son and two daughters, to take care of Tim and didn't want to burden them. "We have to make provisions for him to go on his own," said Mr. Tullis.
More than a year ago, Tim started spending Thursday afternoons and early evenings with a family named Badaczewski, a routine created to get him used to being away from his father and grow comfortable enough to spend the night there.
A trial overnight visit wasn't expected until late April, but when Mr. Tullis was going to the hospital, Marianne Badaczewski got a call from Tim's case manager, saying that Tim needed a place to live temporarily.
She is accustomed to these calls. For the past 17 years, Mrs. Badaczewski, who has a bachelor's degree in psychology, and her husband, Larry, who has a master's degree in social work, have provided respite care for the developmentally disabled in their home. They had lived in a group home for four years after they were married and wanted to continue that work to expose their six children to the needs of others and to supplement their income. They receive about $115 a day in state and federal funds for Tim's room and board.
Linda Biegenwald packed a bag for her brother and Mrs. Badaczewski picked him up.
Tim ate dinner with the family, as he had done every Thursday night. When he was finished, he got up from the table and gently led various family members to the front door, saying "Go see Daddy. Go see Daddy." Because he was growing increasingly anxious, breaking out in a sweat and wiping his brow, Mrs. Badaczewski drove him to his apartment, and to his sister.
But the next night he was back at the Badaczewskis. Because Tim was still very upset, Mrs. Badaczewski called the hospital so his father could speak to him and let him know he wanted Tim to stay with Marianne. He has been there ever since.
Mr. Tullis never came back to the apartment. He was diagnosed with liver cancer and went to live with another daughter, Sarah Banal. A nun at the Ross Center, Sister Jeanne, helped Tim decorate construction-paper cards with stickers and yarn to send to his father. On them, Tim printed in big block letters his favorite words, "Daddy" and "Dodge Caravan." For Easter, he decorated eggs and put two of them in a bag for his father.
Mr. Tullis felt it best that Tim didn't visit, fearing his son wouldn't be able to understand why they couldn't go home. Mrs. Banal believes it was best for her father, too. "He wouldn't have been able to say goodbye," she says.
Mr. Tullis died April 20 and was buried next to his wife at Mount Royal Cemetery. Tim wasn't told, but apparently overheard someone at the Ross Center mention that his father had died. Every once in a while, he blurts out "Dad died" and then "dye Easter eggs." Mrs. Badaczewski later took Tim to the cemetery. He walked around his father's unmarked grave but said nothing.
On a recent afternoon, Tim Tullis walked up the front steps of what is, for now, his home, a two-story brick Tudor on a quiet cul-de-sac with a rambling wood deck out back.
Waiting for him was Madeline Badaczewski, a barefoot 6-year-old with short brown hair and bangs. The two shared a bowl of popcorn. When he ate too fast, Madeline patted his arm and told him to slow down. A little later, they sat in the playroom, Tim in a La-Z-Boy Recliner, Madeline on his lap, watching a cartoon on television.
Once unwilling to walk into a post office and mail a letter by himself, Tim goes with the family to school concerts, swim meets and church. The two younger Badaczewski boys, Eli, 8, and Nathan, 10, act as gentle border collies, making sure Tim stays with the group. The other children have their jobs, too. At mealtime, Madeline folds his hands to say grace. She is one of the few people Tim will hug. Luke, 12, gets up early in the mornings and makes Tim breakfast the way his father did, corn flakes and water. Caroline, 17, has popcorn ready for Tim and Madeline. Joseph, 21, the oldest and in college, shares his room with Tim.
A few weeks ago, Tim turned 50. Mrs. Badaczewski made pizza and a big chocolate-chip cookie. The children surrounded him and sang "Happy Birthday."
Tim's sisters, Linda and Sarah, came to visit him recently for the first time. He was sitting comfortably in his chair, watching TV. They were surprised at how well he had adapted. "It was like he went from just being with my father to a household full of people. He seems so happy and content," said Mrs. Banal.
Mrs. Biegenwald is compiling a scrapbook for her brother, with photos of Tim and his parents on summer vacations to Yellowstone. She gave him the afghan of brightly colored squares that their mother had crocheted. It's draped over his chair. Sitting next to him is a small framed photo of his father in a blue flannel shirt.
Tim's sisters are happy the transition has gone smoothly and wish it were a permanent solution, but it isn't. Mrs. Badaczewski is not sure how long she can keep Tim. Two men who suffered brain damage in their youth live with the family permanently. To add a third would require special licensing and zoning. Until some other arrangement can be found by his case manager, she says, Tim is welcome.
In the meantime, Tim is learning to do more on his own. He gets his own glass of water. "We're working to get him to pass out napkins at the table," says Mrs. Badaczewski and to say "please" and "thank you" with regularity.
When he wanted an oatmeal bar, Mrs. Badaczewski asked him what he should say, hoping to elicit a "please."
Tim responded, "Come here, cookie."
