The Family Dynamic and Siblings with Autism what life is like....

[Guest guest]

The Family Dynamic and Siblings with Autism what life is like.... http://www.time. com/time/ health/article/ 0,8599,1698128- 3,00.htmlMonday, Dec. 24, 2007Autistic Kids: The Sibling Problem By Amy Lennard

GoehnerA few months ago, I took my sons to buy shoes. Nate is 14 and autistic. is 8 and "typical." And I'm the parent — most of the time. Before we got tothe store, said to me, "If Nate has a tantrum, I can handle him. Youjust focus on buying shoes. I'm better at handling tantrums than you.Sometimes you just yell and it makes things worse. No offense."None taken. He's absolutely right.The "typically developing" siblings of autistic children are, in fact, thefurthest thing from typical. Often, they are wiser and more mature thantheir age would suggest. And they have to be, given the myriad challengesthey face: parental responsibility; a feeling of isolation from the rest oftheir family; confusion, fear, anger and embarrassment about their autisticsibling. And on top of all of it, guilt for having these feelings.As their parents, there's a lot we can do to help. For starters, we caneducate them

early on, by explaining their sibling's disorder — aconversation that should be ongoing. Dr. Raun Melmed, co-founder and medicaldirector of the Southwest Autism Research and Resource Center in Phoenix,suggests including non-autistic children in visits to the doctor or otherautism professionals. Early intervention doesn't have to be "thought of asbeing geared only to the involved child," Melmed says. In his office, Melmedreassures siblings that "other brothers and sisters have negative andconfusing thoughts about their [autistic] siblings. That is common." He alsoinstructs parents to reaffirm that message at home. "Parents need onlyacknowledge to their healthy children that they know what they are goingthrough and that negative feelings are normal," he says.A great way for kids to feel "normal" is to meet other siblings of

autisticchildren, which they can do at sibling workshops. At the Kennedy KriegerInstitute for children with developmental disabilities in Baltimore, socialworker Snyder-Vogel runs a program called Sibshops. "The workshops givethese kids the opportunity to realize they're not alone," Snyder-Vogel says."[We play] a lot of games that help them interact and problem-solve withpeers. Kids don't even realize they're getting support."At a recent Sibfun workshop at the Jewish Community Center on Manhattan'sUpper West Side, therapists used puppet shows to illustrate issues that arecommon among siblings of special-needs kids.

When asked what they thoughtthe puppets were feeling, the children in the audience needed no prompting,immediately shouting out words like sad, disappointed and jealous.Siblings will commonly have negative feelings — some might never connect orwant to connect with their autistic siblings — but the good news is thattypical siblings often turn out to be more compassionate and caring thanaverage. "These siblings have seen what it's like to have a hard time inlife," says , executive director of Rutgers University'ss Developmental Disabilities Center, a program for people with autismspectrum disorders and their families, and author of *Siblings of Childrenwith Autism: A Guide for Families* (Woodbine House).There are many other, more specific challenges that affect siblings ofspecial-needs kids — and many of them apply to sibling relationships ofevery kind. Here are some of the issues that most

frequently confronttypical siblings — and their families — with advice from professionals.*Challenge #1: "Why won't he play with me?"*For younger siblings of autistic children, one of their first doses ofreality usually comes when their older brother or sister won't play. "Thechild on the [autism] spectrum may seem indifferent or have a meltdown whenthe sibling tries to interact," says Rutgers' .Seven-year-old Adam, whose autistic brother is 11, says, "I can'treally play games with like I can with my cousin [also 11]. likes to play games on the computer — but by himself, not with me. He getstoo angry if he loses and then doesn't want to play." Adam's father, ,says soberly, "I'm sure represents the brother Adam might have had."*Solution: Find common ground*Parents can start by telling the typical sibling that his brother or sister"is doing the best he can, and

here are some things you can do with him,"says Judy Levy, director of social work at the Kennedy Krieger Institute."Maybe in the future he'll be able to learn to play with you in other ways,but right now this is what he can do." encourages parents to "find ways in which the siblings can relate[or] share an interest." That can be something very simple, as Elliotlearned at an early age. "It turns out my brothers [ and ] arereally ticklish," says Elliot. "Tickling was a good way to bond with them,and for them to show affection back by laughing and wanting it again." (Andagain and again — and again.)*Challenge #2: "It's not fair!"*Every parent has heard his or her child say, "It's not fair!" But forfamilies with autistic and typical siblings, "not fair" is the reality, whenit comes to one child being treated differently from the other. Bounds has one autistic child, Charlie, 13, and

one typical child, , 15,about whom Bounds says, "He'd get very upset when he would bump his knee orcomplain of feeling sick. He thought we weren't sufficiently concerned abouthim, in the spirit of 'I could be over here dying, and all you care about isCharlie.'"That may be overstatement, but such sentiments often stem from legitimategripes. Bounds recalls when he and his wife attended an importantfund-raiser for Charlie three years ago, on the same day rode in anannual bike race. " won the race for his age group and was really upsetwhen we were not there to greet him at the finish line," says Bounds. "Asmuch as you try to balance schedules, as parents of an autistic child, youhave to basically accept that you are going to have moments when you feelyou have cheated your other children, and those moments are awful."*Solution: Create special time* urges parents to set aside alone-time with

their typical kids everyweek. "Private time can even [include] riding in the car to pick up thelaundry," she says, "but since [the child is] with Daddy, [he or she is] thefocus of his attention."Some kids, like Elliot, develop new hobbies as a way to spend time with aparent. "Gardening was something I could do with just my mom — it was nevereasy to get my mom to myself," he says. Elliot began gardening five yearsago; he's now a junior judge at flower shows and grows about 330 varietiesat home, including the 170 seedlings he has hybridized.For single parents, however, eking out one-on-one time can be a dauntingtask. As a widowed mom, I know firsthand — we do the best we can with thetime we have. Single dad Ron Barth says his autistic 9-year-old, ,"dominates everything, so I have to make special moments with [age15], like taking her shopping — without ." But, says Barth, "Therearen't enough of

those moments."*Challenge #3: "I'm scared!"*Some autistic children are aggressive, which can be scary and dangerous,especially for younger kids. And parents can't possibly keep an eye on theirkids every second — which is about the amount of time it took for one childI interviewed to get squirted in the eyes with Windex by her youngerautistic brother. (She survived just fine.) Even my son Nate, who isn'taggressive but is twice the size of , often hugs — tight. Verytight. Around the neck. When yells "MOM!" I've learned to tell thedifference between *Mom, can you help me find my Gameboy?* and *MOM, he'schoking me!**Solution: Find a safe haven*"I tell parents to have a 'safe place,' usually the child's room, where thetypical child can go while an adult handles the behavior problem," says. "Then, as soon as they can, the parents should comfort the typicalchild and help him or her

understand what happened." also suggests that parents develop an "intervention plan" to teachthe child with autism alternate behaviors — such as asking to be left alone,or using words, cards or a special gesture — when he or she feels upset."Kids with autism can learn to go their room, sit in a beanbag chair, or dosomething else that helps them calm themselves," says .*Challenge #4: "He's so embarrassing! "*It's common for siblings to feel embarrassed by their autistic brother orsister's behavior in public, or to be reluctant to bring their friends home. Reynolds, 21, says it can be difficult introducing her autisticbrother, Will, to her friends: "It's hard to have a young child in an olderkid's body. [Will] may go up to one of my girlfriends and sit on her on thecouch — which probably would

have been cute when he was five years old buthe's 17 now," Reynolds says. "That can be hard because you can tell whensomeone feels awkward or scared or thrown off."*Solution: Encourage honesty — and laugh*"Interestingly, a lot of these [typical sibs] are more outspoken," says Levyof the Kennedy Krieger Institute. "They'll go up to people and say, 'Yes,that's my brother. He has special needs. Do you have any questions?'"My son is one of those kids. When he was 6, we were at a bus stop whenNate started jumping up and down and making weird noises — just being Nate.When 's friend started making fun of Nate, got right in her faceand said, "Do NOT make fun of my brother again! Everybody learnsdifferently. " They were my words coming from 's mouth.Several parents I interviewed said a sense of humor is key. "Your typicalchild can see the humor in the actions of his autistic siblings,"

saysBounds, father to Charlie and . "It's okay to talk about his or her'weird brother' in a way that signals that you both know this isn't normal."When Nate does something bizarre in public, which is just about wheneverhe's in public, and I often give each other an *Oh, my God!* look androll our eyes, which sort of says, "We're in this together."*Challenge #5: "I feel like the parent."* -Brown, 15, says she often feels like a parent to her14-year-old brother Alasdair. "You don't have a choice," says Angie. "You'vegot to help out, and your parents can only do so much. They're so stressedout." Angie's mom Florie Seery refers to Angie as "the third parent in thehouse" and "an old soul," a phrase I've heard often from other parents.Elliot says of his siblings' disorder: "Even though I'm four years younger,it places me in the position of being the older brother. "*Solution: Let sibs

be children too*"It's a challenge for children to feel that sense of responsibility fortheir sibling," says . "A wise parent works hard to temper that and tomake the responsibilities fitting to the age of the siblings. An oldersister can keep her brother entertained for half an hour because an oldersister would typically do that to help out — but she's not a parent."For young siblings, suggests counseling them: "'It's wonderful tocare about your brother, but you're my little boy too. Because your brotherhas trouble learning sometimes, he might need help from you, but you're nothis mommy or daddy. We will take care of him when he needs help.' That kindof message reaffirms one's love and lifts that burden."*Challenge #6: The holidays*"Attending loud, busy social gatherings with new sights, sounds, smells,intrusive relatives and strange places overwhelms the best of us, let alonethose with

sensitive sensory systems," says Dr. Raun Melmed of the SouthwestAutism Research and Resource Center. "Of course, when the child getsoverwhelmed and melts down, so do the siblings and parents.""In short, holidays suck, especially the ones you spend outside your ownhome," says dad, Bounds. "They're full of the most dreaded thing in anautistic life — unstructured time. People get together with relatives andfriends and talk — which is sort of hard to do when your child has yoursister-in-law' s cat by the throat and is about to put him in the foodprocessor."*Solution: Ask family members to help* suggests that parents "create a rotating team of adults. Each personspends a half-hour with the child, so that parents and siblings aren'ttrapped, and the child doesn't have to be exposed to the chaos of the

party.Cousins and aunts can take a turn."Siblings, however, should be spared. "The typically developing kid wants theholiday to come. She's off from school, she's getting her present and shecan't really enjoy that" if she's expected to take care of her autisticbrother or sister, says social worker Snyder-Vogel.*Challenge #7: In adulthood, the sibs will become "parents"*Someday, inevitably, the sibling of an autistic child will most likely takeon the role of guardian and advocate. "You're basically at some point goingto be their parent," says Reynolds, 21. "Anyone I want to marry has totake that into account. In some ways you kind of feel like you already havea kid. ... For me, it's kind of a deal-breaker when someone can't really getalong with my brother. He's such a big part of my life."*Solution: Discuss future plans with adult children*Parents should talk about financial plans and any care

arrangements thathave been made, once typical siblings are old enough, says in arecent article for the Autism Society of America. But this isn't adiscussion to initiate with younger children — unless they bring the topicup on their own.Many of the children I interviewed showed deep concern for their autisticbrothers and sisters. And nearly all of the professionals and doctors Italked with said that a disproportionate number of their students andresidents were siblings of people with autism. "I'm very interested intrying to help find a cure," says 15-year-old Elliot, who closely followsnews about the disorder. "I'd just like to get a neat little pill somedayfor my siblings that they can pop in with their apple juice and hopefully benormal." Never miss a thing. Make Yahoo your homepage.

Never miss a thing. Make Yahoo your homepage.