自闭症家庭世界之最-自闭症4胞胎

忘了我是谁

这4个孩子今年应该有12岁了。有关他们的报道很少。我只找到一篇文章，还是在google 的存档里找到的，还有一些照片，贴不上来。他们的家长真是太难太难了。唉！

翻译其中一段，孩子们的妈妈描述当年的心情。

“如果是一个（自闭症）孩子都是一个挑战了，但是，事实是，是所有的孩子。你怎么去付帐啊，你可怎么办啊，还有这样那样的事情。”曼太太说。她提高了声音：“我甚至不能告诉你有多糟。然后，你看见的任何一件事情都在不断的提醒你。你打开电视，放广告了，什么人在开车，那你就想，他们永远都不能开车的。每一件事情，都不断的提醒你，他们永远都做不了。”

4个孩子经过长期的ABA和RDI训练，程度好的两个孩子已经可以熟练地玩滑板了。

Autistic quadruplets and their parents work to overcome problems
Meet the Manns
By Tom Corwin| Staff Writer

Leslie Mann remembers when it hit her. As she stood in a shoe store watching her infant son Michael stack boxes over and over and over again, she broke into sobs knowing he and his three brothers -- celebrated quadruplets -- really did have autism and would face long odds ahead.

"It would be challenging if it were one child, but the fact that it was all of them, and how are you going to pay for things and what are you going to do and this or that," Mrs. Mann said, her voice rising. "I can't even tell you how bad it is. And then just anything that you see just constantly reminds you. You turn on the TV and a commercial comes on. Somebody is driving a car, and you think, 'They'll never drive a car.' Everything is just a constant reminder that they'll never do anything."

Telling the story as she sat in her Jones Creek living room, Mrs. Mann paused and took a long, slow breath.

"Then somehow," she said, "you just get it together."

What followed was years of searching out therapies, and hundreds of hours of hands-on work by the family, to the point where three of the boys are living nearly normal lives.

AUTISM IS REFERRED TO as autism spectrum disorders because -- as the Mann boys demonstrate -- it can have widely varying effects on communication and social skills, often accompanied by repetitive behaviors. Autism is an umbrella name for dozens if not hundreds of disorders that can have wide-ranging effects, small and large.

The Mann boys made a splash from the beginning. They were the showstopper ending of a remarkable 24 hours at University Hospital on Dec. 8, 1998, that saw the birth of quadruplets, triplets and twins at the same time. The Augusta Chronicle covered them when Doug and Leslie Mann brought the last of the boys home from the neonatal intensive care unit a month later.

They all appeared to be healthy. But by the time they were 18 months old, Mrs. Mann started to worry. Two of the boys would say a couple of small words, but the other two didn't talk at all.

" 'Oh, don't worry about it, it's because they're quadruplets,' " Mrs. Mann said, recalling the reaction she received at a developmental clinic. "I didn't feel comfortable with that."

A speech pathologist with the state's early intervention program noticed that Michael rocked back and forth constantly. The evaluator remarked that Aidan "was going to need therapy for a long time or his therapy was never going to be over."

The revelation was startling.

"I was flattened, " Mrs. Mann said. "That opened up a can of worms and I started looking into a lot of little things. That's when I started putting the pieces together, looking at the symptoms that they had. It just seemed like autism started coming up."

AT THAT TIME, she couldn't find any autism program locally, but Emory University had one and agreed to check the boys out. The boys were observed in a homelike setting to see how they interacted and responded to changes. Two of the boys would get upset if the slightest changes were made; Aidan seemed oblivious to his surroundings. The diagnosis of autism in all four was confirmed, and the initial prognosis was not good.

"Basically, they said the best that we could hope for, when they were older, is that we would be able to place them into a community residence," Mrs. Mann said. "I can't even tell you how devastating that all is. Here, one day, you think your child is going to be like everybody else and everything is fine. And then the next minute you're told that that's never going to happen, and that's it. It's just absolutely crushing."

It meant coming to grips with a disease that wasn't well-known eight years ago. "It's funny -- when my kids were first diagnosed, I had never met anyone with autism, I never knew anyone with autism, I didn't know what autism was," she said. "Now, it's just everywhere."

Aidan is the most severely affected. At the time of the initial diagnosis, Michael seemed to be the next most affected.

With little to go on locally, the Mann family began researching therapy and eventually settled on Applied Behavior Analysis. They found a provider in Anderson, S.C., who could adapt the program for the boys. The program aims to teach the boys skills needed to navigate social settings and public school.

"It's almost like you're teaching a child, through positive reinforcement, to behave a certain way," Mrs. Mann said. "That's how we got them all to speak at the beginning."

While Aidan still gets the therapy at school, some of the boys switched after a couple of years to Relationship Development Intervention, or RDI. The Manns found a therapist in Raleigh, N.C., initially because there wasn't one that used it in Georgia until a few years ago. The theory behind the therapy is that the emotional centers of autistic brains aren't well connected to the decision-making areas of the brain.

"It's not that one part of the brain is broken; it's that all of the parts aren't talking together as much as we'd like for them to," said Janice Guice, the owner of Essential Communication in Atlanta, the Manns' RDI consultant.

The therapy tries to help the child start making those connections and develop dynamic intelligence, the ability to respond appropriately when circumstances change.

"Because for these children, the world is often very confusing to them and they can't process all of that information," Ms. Guice said. "So we're slowing things down so they know what to pay attention to, how to share experiences, helping them to develop an awareness of themselves and what they like and what they don't like and how other people's likes and dislikes play into that. Probably the biggest thing that we're working on is problem-solving."

In this approach, the parents and caregivers are the therapists and the therapist acts as a consultant. Parents send in videotapes of the therapy sessions and Ms. Guice talks to them every other week about what is or isn't working. Often, parents will work with the child to perform everyday activities. Mrs. Mann sends the boys through the self-pay line at the grocery store, for instance.

Ms. Guice feels it is paying off for the two she works with, Michael and Mark.

"I would say for Mark, I've seen significant improvement in his tolerance of having a moment where he's frustrated," Ms. Guice said. "He has a much greater sense of, 'Now, wait a minute; I can handle this.' "

MARK IS THE LARGEST of the boys and, according to Alex, the best reader. If he has an apparent weakness, it is that he takes things too literally. Faced with dividing up nine chicken nuggets and sausages, "he'll be trying to divide them up with everybody but there's not an even number," Mrs. Mann said. "He'll get frustrated and say, 'It just can't be done! There is no way!'"

Michael is the quietest one, but he is gaining assertiveness, Ms. Guice said.

"Not many parents are sitting around trying to encourage their child to yell," she said with a laugh. "But we're working on it."

Michael is the collector and hobbyist -- first it was dinosaurs and he wanted to be a paleontologist, then Bionicles; now it's Guitar Hero and learning electric guitar.

"We do like our own band," Alex said. "We have drums and Michael has a guitar. And then Mark sings. Whenever I heard a drum part, I try to make it sound right. We're The Rock Legends. I didn't really want that name."

"Dad calls them Quadrophenia, " Mrs. Mann said.

Alex is really into sports, wearing a No. 10 Notre Dame jersey and Yankees cap while he sits at the table with his mother doing his homework.

"Mom, I'm getting really good at catching pop flies in the outfield," he tells her. "Like, Dad can throw them all the way into the front yard at the very end at the street and I can catch them. And when he throws them all the way up to the sidewalk, I can run and catch them."

"Good," Mrs. Mann says proudly.

Alex can be fidgety sometimes, she said, and they work on finger exercises and other issues.

Clearly the most affected is Aidan.

While his brothers can be heard whooping it up on skateboards in the driveway outside, Aidan is in the quiet of the basement therapy room with Jamie Grant, 29, a social service technician who has worked with the Mann family for about five years. He and Aidan sit across from each other at a small table, a container of uncooked rice and dried beans between them.

"Let's dig," Mr. Grant said.

"Dig, dig," Aidan said, smiling.

They dig their hands into the bin and take turns dribbling the rice and beans on each other's arms. The idea is to give Aidan some stimulation through the skin in a way that he can handle and process. Much of the therapy for the Mann boys looks like play, and much of it has to do with sensory integration.

"He's allowed to just be Aidan without me demanding anything of him," Mr. Grant said. "We try to build on it as much as we can."

Mr. Grant navigates a small toy dog through the rice and beans until suddenly Aidan won't look at it or meet his eyes.

"Hello, hello doggie," Mr. Grant said in a high voice, waggling the dog. Aidan doesn't look up. "I'm going away. Goodbye."

When Aidan still won't look up, Mr. Grant edges closer to him, looking into his face, until Aidan looks up again.

"He looked me in the eye. It became a two-way communication again," Mr. Grant said later. "It's a process, really meeting him where he is, just trying to bring him up to where you are."

The family took a Thanksgiving trip to South Bend, Ind., Mrs. Mann's hometown, and shortly after they got back Aidan started to regress.

"The first week, especially when they were back, he would just get really emotional and cry for no apparent reason," Mr. Grant said. "He was aware of it, but it was not something he could control. So we would say, 'Can you tell me what's bothering you?' And he would say, 'I'm just having a bad day.' "

UNFORTUNATELY FOR AIDAN, the bad days would reach their worst in December. Another helper who worked with Aidan gave up and quit, and Aidan defecated in the bathtub and began acting up more. Slowly, over the weeks and months, the parents and teachers are bringing him back.

Mr. Grant, who works 40 hours a week for the Manns, can see progress in all of them.

"They're really different kids from who they were when they were younger, but there's something that remains the same," he said. "They're still recognizable from their 4-year-old selves. Michael is still the quietest one. Alex is still the bossy one. Mark is really, really strong."

Outside the house, Alex and Mark are skateboarding down the driveway to a ramp. Each time Mark will get near the top, he hits a metal bar and his skateboard sticks. Alex adds a piece to the ramp, makes an adjustment and goes back to the top of the driveway.

He weaves his way through the small orange cone obstacle course and hits the ramp, hesitating for a moment at the top, before sliding over and down the ramp on the other side.

"Score!" Mark yells to him, raising his fist in triumph.

妮子

小忘老师，你的2个之最真是雷人啊！