This story was originally broadcast May 21, 2004
They are from the same family in a Seattle suburb but they exist in different dimensions. Seventeen-year-old Melissa Garrison is a straight-A student; her 14-year-old brother, Brandon, is autistic. It makes coming of age together, as sister and brother, an immensely more complicated relationship.
For instance, in communicating with Brandon, Melissa says, "You have different voices, for different situations — different inflections that you have to use, so he knows what you are talking about.
"If he is having a tantrum … you can't go in there like you would to a typically developing sibling and say, 'You stop that, or you are going to your room.' You say, 'Brandon, you know, calm down. Why are you doing this? It's time to stop.' "
Brandon's autism means he is walled off emotionally for reasons that are still a mystery — that he cannot master many basic social skills. He may simply wander without making eye contact when someone tries to engage him in conversation.
Their mother, Shelly Cain, remembers that the constant care Brandon needed from infancy raised the first issues that siblings like these face: who gets the attention, and how can a family find time to do other things?
"When Melissa saw other families just pick up and go on the weekend — well, we weren't able to do that."
"There were all these therapists, and people calling nonstop," Melissa said. "And I didn't get why there wasn't time to go out on the weekends anymore. There wasn't time to do this. There wasn't time to do that. Because everybody was so busy with Brandon."
Melissa says that her sense of protectiveness toward Brandon began to develop when their parents were divorced.
"I remember him being scared a lot of the time. He would ask where Mommy was, where Daddy was, whenever we switched houses.
"That's when I kinda figured … I've got to watch out, be careful with him. I don't want to say that I would die for Brandon, because that sounds corny. But I think I probably would."
Don Meyer, who has counseled the fathers of disabled children, founded an organization called Sibshops in 1982 to give kids like Melissa a place to talk about their experiences. "For most parents," Meyer says, "the thought of going it alone, raising a child with special needs without the benefit of knowing another parent in a similar situation would be unthinkable. Yet, this routinely happens to brothers and sisters."
Melissa began attending Sibshop meetings in the Seattle area when she was 12. "These people all know what I am talking about," she says.
Participants may gather around a table over pizza, identify themselves and talk about the conditions of their siblings. It's primarily a social atmosphere.
"I wanted to offer young sibs peer support within a lively, recreational context that emphasizes a kids' eye-view," Meyer said. "Sibshops are not therapy, group or otherwise, although their effect may be therapeutic for some children."
Melissa and her peers have a lot of company. Among the millions of Americans who are affected by disabilities, it's estimated that more than 4 million have a brother or sister who, like Brandon, is developmentally disabled in some way — in language, or learning, or in the ability to care for themselves.
"When kids get to the pre-teen and early teen years," Meyer said, "when they just want to be like everybody else, and have a brother that has autism and some fairly interesting behavior that can bring a lot of unwanted attention."
Melissa says that her relationships with her friends have been affected "to a degree" because of Brandon's autism. "My friends get on me sometimes, because they tell me I sound like a doctor. In science class, we just did a unit on genetic disorders. I was the only person who had heard of them all.
"Everybody asked me, 'What's wrong with you? You sound like you have gone to university.' And I said, 'No. This is how I spend my summer vacations.'"
If Brandon is teased or humiliated by other children, Melissa takes it upon herself to defend him. "I have issues with the word 'retard,' " she said. "Technically, Brandon isn't mentally retarded. And one day this kid at school kept saying it to me, just to annoy me. And I actually ran up to him, and I chased him down the hallway, and I smacked him."
Shelly says Melissa was only 5 when she first began trying to explain Brandon's condition to other people, including delivering a lecture to people who were staring at Brandon at a supermarket. "The lady behind us in line was looking at him," Shelly remembered. "And the lady that was doing the cashiering was looking at him. And Melissa starts. And she goes, 'Oh, it's OK. He is autistic.' "
Melissa then proceeded to offer a description of autism to the surprised shoppers.
According to Don Meyer, siblings like Melissa often grow up faster and are high achievers. Melissa has posted an Internet site to raise money for autism research on behalf of her brother (www.justgiving.com/PFP/Brandon). She wants to enter a care-giving profession.
"Some of the most caring, some of the most compassionate, some of the most thoughtful people walking the face of this planet are brothers and sisters of people with special needs," Meyer said. "And to acknowledge that is not to put on rose-colored glasses. The reason that they're often such marvelous people is that they have had to struggle with some really tough [issues], and as a result of that, they have grown."
"They are so charming," adds Shelly, referring to the relationship between Melissa and Brandon. "Even when they argue. She understands him. And he knows it."
Melissa also knows that Brandon represents a lifelong commitment.
"I know that if I ever get married, I am going to make sure that my husband is OK with that," Melissa says. "I know that if the time does come when Brandon needs somewhere else to go, then it's gonna be me. And I am OK with that. I am ready to accept that. I want that."
"Brothers and sisters have many, if not most, of the same issues that parents have," Meyer says, "and they're going to have those issues for a longer period of time than parents will. This [may be] a relationship easily in excess of 65 years."
"I think [Brandon] has taught her to think out of the box," Shelly says. "Everything isn't going to go according to plan. It's like they created their own world. He took a little bit of his, and she took a lot of hers, and they just combined it to where Brandon is safe."