- What its like to have a little brother with autism - Raise The Flag For Autism
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- Talking to Siblings About Autism
Tarah is one of those kids in the middle, neither maladjusted nor striving to be a perfect child. She stands a little over five feet and has no desire to grow any taller, though she would like to put a couple of hot-pink streaks in her hair and, as soon as she turns 16, to get a nose stud and multiple ear piercings and a tattoo of a smiley face on her index finger.
She attends seminary class at her Mormon church every morning before school, plays French horn in the band and spends much of her free time at home on the computer, trading messages on MySpace or writing funny stories. In September, I accompanied Tarah, her mother and her brothers to an autism conference in Dallas, where Justin and Jason had been invited to take part in a presentation.
Jennifer works as a special-education aide and obtained permission from the school district to attend the conference; her husband, Brian, an auto mechanic, stayed home with Melissa. Time was when such a trip would have been unthinkable. In family home videos from those years, Tarah appears first as a Maggie Simpson character, the placid witness, watching from her walker as Brian tosses the boys in the air or lying on the carpet as Jennifer and a visiting specialist help the boys play with simple toys.
A few years later, Tarah would dress Jason and Justin in her ballerina outfits; one video taken when the boys were 4 or 5 shows Jason teetering down a hallway in a party dress and pink plastic heels. Other moments, not captured on tape, were more difficult.
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- Coping with my brother's autism.
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Into their early school years, Jason and Justin threw daily tantrums. Sometimes they would bang their heads against the wall. They tore down pictures and broke windows. They injured themselves often enough that the Perrys made sure to rotate emergency rooms, to avoid coming under suspicion of child abuse. They slept only a few hours each night. In the car, they demanded that their mother make only right turns — left turns or driving in reverse would provoke screaming fits.
Jason and Justin matured, not like normal boys, but they stopped having tantrums and started talking more. By the standards of their youth, the twins are positively sedate these days. Pale and rangy, with wide-set blue eyes and stiff-shouldered, loping gaits, they sometimes seem like anxious 5-year-olds trapped in elongated bodies. They speak in insistent monotones and have trouble making eye contact or exercising simple motor skills: last summer, Jason shut the car door by himself, and Tarah rewarded him with praise and a high-five.
This fall, she taught him how to clean the toilet. The drive to Dallas had its share of mundane sibling quarrels. A long foam pool noodle had somehow found its way into the back of the car, with the suitcases, and was obstructing the rear window. When Tarah told Jason to move it, he ignored her. A few hours later, her role shifted. Reluctantly, he followed us to the reception desk, averting his eyes and still cloaked in the blanket.
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When Jennifer joined the line, he retreated to a pillar, sat down and began to rock back and forth. She signaled to Tarah, and at once Tarah crouched in front of him and spoke to him in a low, soothing voice until he got up and joined his mother. She has long known that her brothers are vulnerable. Not long after that, a complaint was filed against a boy who had recently started inviting the twins over to his house. Whatever is proved in court, the episode has stayed with Tarah: she says she still thinks about it often and fears that something similar could happen in the future.
What its like to have a little brother with autism - Raise The Flag For Autism
View all New York Times newsletters. On a drizzly December afternoon in Scarsdale, N. Almost all have a brother or sister with autism.
That so many kids attend the Scarsdale group comes as a result of the active recruiting efforts of its leader, Charley Moskowitz, a social worker and fervent Sibshop advocate who also runs a Sunday program for children with disabilities. Your other child needs a support group, too. Shortly after , the goldfish crackers were whisked away, and Moskowitz, a vigorous, tawny-haired woman in her early 60s wearing a Sibshop T-shirt, asked whether anyone was troubled by anything that had happened since the last meeting. Why are you so sad about this? Thomas, a chatty year-old with a buzz cut, raised his hand.
A kid named Nick chimed in. I know it sounds weird, but, like, my brother, he can hear things that are really low. What is she doing, Nick?
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I only help when I need to help. They have to work through this before they graduate from high school so that they can have the courage to go off to college and have a life and still be connected to their sibling when it comes time to make a decision about what they have to do. Often Tarah imagines what life would be like were Jason and Justin not autistic. She would be able to talk about her problems with them; they would protect her and help her with schoolwork. Her dad would let them drive her places and do more things. They would care about their clothes and the way they smell. The gulf between kids with special needs and their siblings widens during adolescence, as the typical siblings begin to tie up the phone lines, venture off with friends and begin dating.
A more severely disabled sibling might not notice or care, but Justin and Jason Perry seem keenly aware of the difference.
Talking to Siblings About Autism
Justin, more than his brother, wants to make friends, but the people he befriends most readily are elementary-school kids he meets in the video-game department at Wal-Mart. He has also occasionally expressed a desire for a girlfriend and used to claim he had one named Crossfire. Justin will want me to invite them over. I started being able to do things. It was really cool, and I got carried away with it and just stopped talking to them as much.
I used to be the cool sister. Now Melissa is the cool sister. One evening I asked Jason and Justin what they thought of Tarah. And a slob. In Dallas, the panel went off smoothly enough. In one area, there were large, free-standing trays of bubble liquid, with metal wands more than a foot in diameter resting in them. They may even know it is called autism.
enter However, trying to explain what this means in a practical way that the child can find relevant can be a struggle. However, as we know, behaviours of autism are very varied, so children may find it difficult to relate to the behaviours of the child with autism in the story and the behaviours of their brother or sister. Carolyns book is a practical solution to this. It looks at the family as a whole, then draws inward looking at both the child with and without autism.
It gives a chance to compare behaviours, showing that their behaviour is not wrong, merely different. This is a book to be worked through over time with a parent. It offers opportunity for further discussion, to help discuss feelings of a situation. It is as useful starting at the beginning as it is finding a page relating to a specific situation.
Children often need short spells of input to truly understand things and this book can be used as reference over and over again as the sibling grows and can more fully understand autism. Aimed at year olds, it can be used for a wider age range as a practical workbook or an aide to discussion. I am sure many parents will find it a refreshing and positive approach to help children go some way to understanding their siblings more.