Tuesday, April 14, 2009

Alex and Asperger's

Alex is my nephew. The eldest son of my younger sister. He's a great kid and his mother is a wonderfully strong woman of God whom I love dearly. This article was posted in the newspaper in Niagara Falls Ontario (I believe), sometime last year I think, and I just want to take a few minutes to brag on my nephew.
It's a great read. Go ahead.

My favourite line is "Mom, are you being sarcastic?". I can see that happening.

... and a gift

Inside his head, he's got rules. Social rules. He calls them The Seven Easy
Steps to being a Sociable Person.
If someone is looking at you, that means they want to say hi. Look back at
them. Make eye-to-eye contact.
If someone rolls their eyes, they don't want to talk.
If their head is turned away, facing the opposite direction, that also means
they don't want to talk.
And if they start to walk away, don't chase after them hoping they'll listen to you. Just let them walk away.
Then there's personal space. Stand at least two feet away. About arm's length.
If a teacher is busy, wait until she's done to ask a question. Raise your hand to let her know you need help.

These are 16-year-old Alex Seib's rules. Alex is funny. Polite. Articulate.
Effervescent. A genuinely nice kid. He's a Grade 11 student at Stamford
Collegiate in Niagara Falls and has an amazing memory. He's passionate about
God and history. And he could tell you pretty much anything about the War of
His dream is to be a re-enactor at Fort George for the summer.
He gets 80s and 90s in most subjects, but struggles in math.
And he has no fear of speaking in front of people. He was on student council
for two years. Helped organized a Christmas drive at his high school. And
last year, he was nominated in The Search for Great Kids contest.
In his words, "I've been a very prosperous young man since Grade 9." He is confident. Sincere. All this, yet he struggles socially.
He simply cannot pick up all the subtle-yet-important social cues that
govern how we act. Cues like body language, which most of us learn innately,
evade his social radar. He has to be taught. Clearly. Directly. Explicitly. Alex has Asperger's syndrome. It's a type of Autism Spectrum Disorder, yet differs significantly from classic autism. People with Asperger's typically have impaired social interactions and narrow fields of interest and activities. But their language skills are not delayed and they have average to above average intelligence.
Sharon Svob, regional director of Autism Ontario Niagara Region, puts it
this way: "It's a different kind of mind." Alex wants to tell people about Asperger's. And he's not shy about it.
"Asperger's is nothing to be afraid of," he says. "It's not contagious."
Much of his self-esteem blossomed around Grade 9, when many positive factors
merged in his life.
He started at a great school. His principal once told Alex's mother, Tammy,
"If you just allow Alex to be Alex, he'll blow you out of the water."
Tammy liked his attitude.
In Grade 8, Alex joined a group for children with Asperger's. Then, in high
school, a group for teenagers, offered by the Niagara branch of Autism
Ontario. In the Asperger's Teens Group, the teenagers go on social outings together
to develop appropriate social skills while having fun. They've been on
adventures like go-carting, bowling, to the movies and to an Ice-Dogs game.
They are supervised by young adults, who are part of related programs at
Brock University and Niagara College. The students are there to gently guide the teenagers. They give them support. And space to try out their social skills.
After one session, Alex came home and told his mother, "Mom, did you know if
people roll their eyes, they're being sarcastic?"
"Really?" his mom replied.
"Mom," asked Alex, "are you being sarcastic?"
Early on in life, his parents, Mark and Tammy Seib, saw signs that something
was not quite right with Alex. In preschool, Alex seemed extra sensitive to sound. And he was very dependent and insistent on routine.
If his class was going on a field trip first thing in the morning, he
couldn't just walk in the door, then leave like the rest of the kids. He'd
have to complete his regular routine, from taking off his coat, to sitting
down on the carpet for circle. Then he'd get back up, put on his coat, and be ready to go with his classmates.
He liked his picture book. It was filled with pictures of people, places and
things meaningful to his life. The school bus driver in his bus. Alex during
circle time. Alex with his coat on. Alex on a field trip holding his
teacher's hand. It helped him transition from one activity to another. And prepare him for different events during the day.
He didn't talk until he was five. But by then he was able to read and
understand well above his grade level.
In Grade 1, he was reading at a Grade 3-4 level. His first diagnosis was
Attention Deficit Hyperactivity Disorder (ADHD). It wasn't until he was 10 that he was finally diagnosed with Asperger's. "Some people with Asperger's may think of it as a burden," says Alex. "Other people think of it as a gift." And how does Alex think of it? He pauses for a moment. "It's kind of both," he says.
A burden, because some teens like him would rather "chill out in the library where it's quiet" than hang out in a noisy cafeteria with a bunch of friends. "Other kids may think that's weird," he says.
Sometimes kids with Asperger's avoid making friends because they fear
rejection. They're afraid if they make a mistake, they won't be accepted. So
they don't try at all, he says. "It's like you're in a tight space," he says. "There are no doors, no windows. It's a small space with four walls blocking your way. "That's how a social barrier works. You block out friendships."
Mostly, though, Asperger's is a gift, he says. It gives him creativity. Imagination. In Grade 9 drama, he wrote, acted in and created the costumes for a play that he describes as a Simpson's adaptation of The Shining.
He has a soft spot for animals and plants.
Asperger's affects how he reflects on the world. "You see things in a different perspective," he says.
His mother home-schooled Alex for grades 3-7. In Grade 5, during a unit on
inventions, Alex and his father each chose an invention, wrote a report and
debated its relative importance. His father chose the telephone. Alex chose the table. Says Tammy: "I would have never thought of that. "Alex discussed the historical uses of tables. ("The Mayans used tables for sacrifices," he points out.)
In front of his family, he presented the pros and cons of the table. And won
the debate by a unanimous family vote.
Then one day in Grade 9, he announced to his family that he was running for
student council. The election was the next day. "We're the type of family that if you want to do it, we're going to support you," says Tammy. Everyone spent the night making posters with slogans that reflected his personality. That night, he wrote his own speech. And while he didn't win, he so impressed everyone that he was appointed as the principal's representative on student council.
With generous amounts of work and love, Alex is learning all sorts of social
nuances. He tries not to see everything in black and white. Right and wrong. If
someone has a different point of view, he tries to understand another opinion.
He works on remembering to talk about other people, not just himself, in a
conversation. To engage others. He can easily walk up to someone and strike up a conversation. Usually, it's all about himself. "Now, all I have to do is look at him," says Tammy, "and he'll remember to say, 'Oh, and how are you?' "
He works on turn-taking. Not interrupting conversations.
He has incredible insight into his challenges. A simple question, "How does
Asperger's affect your life?" will cause him to pause, then offer several
thoughtful examples.
"I sometimes lose my temper if someone gets under my skin," he says. "One minute I'm as calm as the sea. The next, I'm raging like a storm."
At night after school, around the kitchen table, they talk about the best
and worst parts of his day. Sometimes they go for walks after dinner. It's part of his social story. They use the time to discuss new social encounters, and how he responded. He learns. And together, they make rules.
One night, Alex explained that someone called him by his friend's name. He
got upset. Yelled at the person. Tammy talked about his reaction. "If you called me 'dad', would you want me to yell at you?" "No," Alex agreed. "He just made a mistake," said Tammy.
Tammy explained that sometimes people make mistakes. And that's OK.
Afterwards, Alex wrote what he learned in his notebook. That time it read: "We do not get angry at someone for making a mistake. We just gently correct them." He uses the notebook as a reference guide of sorts. To remind him how to deal with similar situations that come up in life.
Their journey with Asperger's has been long. There's been frustration. Sadness. Even grief for the child they'll never have, says Tammy.
But ultimately, there is joy. Joy for his accomplishments.
Joy for Alex just being Alex. Says Tammy: "I'm blown away by him every single day."

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