At 49, Autistic Man
Spends First Nights
Without 'Daddy'
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."
第一个没有爸爸的夜晚
三月初的一个下午，49岁的孤独症患者蒂姆?塔利斯(Tim Tullis)回到和父亲共住的小公寓里，发现父亲不在家。
他到卧室去找，又找了厨房和浴室，都没有父亲的影子。他的姐姐琳达?比格沃尔德(Linda Biegenwald)描述道：“他一直叫“爸爸、爸爸”。我对他说“爸爸在医院”。那天早些时候，比格沃尔德女士的丈夫已经把她的父亲唐纳德?塔利斯(Donald Tullis)送到退伍军人管理医院(the
Veterans Administration Hospital)。他患了黄疸症，很虚弱。她向84岁的父亲承诺当天晚上会陪伴蒂姆，免得他觉得孤独。
随著自己日益接近90岁，老塔利斯最大的担心就是，万一哪天他不在了儿子怎么办。蒂姆的母亲格特?塔利斯(Gert Tullis)约五年前去世了，从那时起，老塔利斯就担起了照料蒂姆的全部责任，给他洗澡、刮脸、准备午饭。爷儿俩舒舒服服地过著平淡的日子：每天晚上一起看《Lawrence Welk》的重播，周末开车到乡村去呼吸新鲜空气，中途停下来点一份Wendy's午餐，在他们的家庭露营车Dodge Caravan里就著餐盘填饱肚子。白天老塔利斯准备好爆米花和水等儿子从罗斯中心(the Ross Center)回来。罗斯中心照顾一些患发展性残疾的老人，是慈善行为健康机构(Mercy Behavioral Health)的一部份。
退休的老塔利斯对照顾儿子的工作基本是胜任的，但体力已日渐不支了。他说：“我很快就84岁了。过不了多久，他回家时会发现我不在了。”1月7日《华尔街日报》头版曾报导过老塔利斯。
随著老龄人口的日益增多，给予伤残人士的资源越来越紧张，越来越多的家庭面临像老塔利斯这样的困难。科罗拉多大学科尔曼中心(the University of Colorado's Coleman Institute)今年一份报告称，约有707,600发展性残疾人士和照顾他们的人──多半是父母──住在一起 ，而这些父母一般在60岁以上。这些年迈的父母是最早一批没有享受机构照顾服务的人，那时社区的帮助极少，所以他们基本上是自力更生。
甚至到今天，他们的选择仍然十分有限。全国大约有8万家庭在排队等候政府资助的居住服务，例如住宅管理或为这些年迈父母提供暂时的帮助。
老塔利斯知道蒂姆终有一天要离开家里。他从来没要求过另外三个大孩子──一个儿子、两个女儿──照顾蒂姆，因为不想给他们增加负担。“我们得让蒂姆学会独立生活，”他说。
一年多以前，蒂姆开始在周四下午和每天傍晚去跟一个叫巴达切维斯基(Badaczewski)的家庭呆在一起。这样做是为了锻炼他习惯离开父亲活动，并学会舒适地度过这些夜晚。
蒂姆一直没有尝试过在外面过夜，直到四月底。老塔利斯被送进医院那天，玛丽安?巴达切维斯基(Marianne Badaczewski)接到蒂姆的负责人打来的电话，说蒂姆需要一个暂时的住所。
玛丽安已经习惯接到这样的电话了。在过去的17年中，她和丈夫拉里(Larry)在家中为发展性残疾人士提供暂时照顾服务。玛丽安曾获心理学学士，拉里获得社会工作硕士学位。他们婚后在一个集体住所生活了四年。他们希望继续这项工作，为了让他们的六个孩子学会帮助别人，同时可以补充家庭收入。他们一家为蒂姆提供住宿和伙食，每天可以从州和联邦基金中获得115美元的补助。琳达?比格沃尔德给弟弟收拾了一袋行李，巴达切维斯基女士来接他。
蒂姆和巴达切维斯基一家一起吃晚饭，就像每周四晚上那样。吃完后，他站起来，轻轻拉著几个家庭成员的手，带他们到门口，一边喃喃道：“去看爸爸、去看爸爸。”他越来越焦急，出了一身汗，一边用手揩著额头上的汗。于是巴达切维斯基女士只好开车带他回公寓去，接著又去他姐姐那里。
但第二天晚上他又回到巴达切维斯基家。蒂姆还是很不安，于是巴达切维斯基女士打电话到医院，让老塔利斯跟他说两句，让他知道他爸爸希望他好好呆在巴达切维斯基家。从那以后蒂姆就一直呆在那儿了。
老塔利斯再也没有回到自己的家中。他被诊断出患肝癌，搬到女儿萨拉?巴纳尔(Sarah Banal)那儿住了。罗斯中心的修女珍妮帮助蒂姆用不干胶贴纸和纱线做一张卡片送给老塔利斯。在卡片上，蒂姆用粗体大号字写上他最喜欢的两个单词：“Daddy”和“Dodge Caravan”。复活节的时候，他把两个画好的蛋装在一个袋子里留给父亲。
老塔利斯很欣慰蒂姆没有来看他，因为担心儿子无法理解他们为什么不能回家。萨拉也觉得这样对父亲有好处。“要不然，他肯定说不出再见两个字，”她说。
老塔利斯4月20日去世了，葬在Mount Royal Cemetery公墓，就在妻子坟墓的旁边。没有人告诉蒂姆这个消息，但显然他在罗斯中心无意中听说父亲去世了。每过一阵，他就会蹦出一句“爸爸去世了”，然后又说“给复活蛋染色”。巴达切维斯基女士后来带他到公墓去。他绕著父亲没有刻文的坟墓踱步，一声不吭。
最近的一个下午，蒂姆来到一座两层的都铎式石头房子前，房子位于一条安静的死胡同里，背面是一片杂乱的木板。蒂姆迈上台阶──现在这里就是他的家了。
等侯他的是六岁的玛德琳?巴达切维斯基(Madeline Badaczewski)──光著脚丫，褐色短发，留著刘海。两人分享一份爆米花，要是蒂姆吃得太快，玛德琳就会拍拍他的手臂，让他吃慢点儿。过了一会儿，他们在游戏房间里了。蒂姆坐在一个La-Z-Boy躺椅上，玛德琳坐在他大腿上，两人一块儿看电视卡通。
过去，蒂姆连上邮局寄封信都不愿意，而现在他跟巴达切维斯基家人一起参加学校演唱会、观看游泳比赛、上教堂。巴达切维斯基家最小的两个孩子伊莱（8岁）和内森（10岁）充当边境牧羊犬的角色，确保蒂姆不掉队。其他孩子也有任务。玛德琳在饭前祷告时帮蒂姆合上双手。她是蒂姆愿意拥抱的少数几个人之一。12岁的卢克每天一大早起床给蒂姆准备早饭：玉米片和水──就像老塔利斯做的那样。17岁的卡罗琳为蒂姆和玛德琳准备爆米花。最大的孩子、21岁的约瑟夫在上大学，他和蒂姆共用一个房间。
最近，蒂姆满50岁了。巴达切维斯基女士做了一份比萨饼和一个大巧克力甜饼。孩子们围在蒂姆身边，一边唱“祝你生日快乐”。
蒂姆的两个姐姐琳达和萨拉最近第一次来看蒂姆。他惬意地坐在他的椅子上看电视。他如此适应那里的生活让她们很吃惊。“他刚刚从与父亲一起生活转到一个大家子里。他看起来很开心、很满足，” 萨拉说。
琳达在给弟弟做一本剪贴本，收集了蒂姆和父母夏天去黄石公园时的照片。她还把母亲用钩针编的一块方块花纹的鲜艳毛毯送给了蒂姆。毛毯从他的椅子上垂到地上。他身边放著一个小镜框，里面是父亲穿著法兰绒衬衫的照片。
蒂姆的姐姐很高兴弟弟顺利过渡到了新的生活，并希望这是个最终的办法。然而，这并不是。巴达切维斯基女士不确定她能收留蒂姆多久。两个年轻时脑部受伤的男子要永久在她家生活，再添一个人就需要获得特别许可和政府的分区。她说，欢迎蒂姆呆在她家，直到他的负责人有新的安排。
与此同时，蒂姆正在学习独立做更多的事情。他能自己倒水喝。“我们正在让他学会开饭前发餐巾，让他经常说“请”和“谢谢”，巴达切维斯基女士说。
当蒂姆想要一根燕麦棒时，巴达切维斯基女士问他应该怎么说，试图引导他说“请”。
蒂姆回答：“过来呀，伙计”。
