Mother, volunteer aims to conquer autism through communication and connections

OCALA - The annual Autism Walk is scheduled this morning at Jervey Gantt Park.

Close to 100 parents, educators and children are expected to participate in the one-mile walk to help raise awareness about autism. Also scheduled to attend is one woman, a single mother of two boys with severe autism, who's on a mission.

"I want to teach [my sons] to live on their own," said 50-year-old Sylvia Miller. "I don't touch the autism. I don't care about it. I'm teaching them how to live with it. I'm teaching them how to live independently, and to understand why others do what they do."

Miller's mission has reached beyond the boundaries of her modest home in Ocala and the colorful Autism Awareness magnet ribbon in the back of her car.

Her mission has taken her from a less-than-stellar marriage, homelessness and poverty, to a home she shares with her 16-year-old daughter, Naddie, and her sons, 14-year-old Kibby and 12-year-old Shukiy.

"I was born to be Cinderella," she says.

Except that her life is a Cinderella story in reverse. There's no Prince Charming; there's no palace and no glass slippers.

Instead, she's a single mother of three, managing everything on her own, with little support from her own family.

"My mother thought I'd never amount to anything, and look at me now," she said proudly. "I have a home. I have a car .Ê.Ê. I don't want anything and I get taken care of. All I have to do is do what I do and I love it."

Miller came to Marion County from Queens, N.Y., seven years ago when her former husband suddenly had visions that they needed to move to Florida.

The family of five lived in a motel room for a week until Interfaith Emergency Services helped them find a place to live.

Within a few months, Miller formed the Parents Helping Parents support group at Maplewood Elementary School, to connect parents of children with autism and other disabilities. She began working and helping at the Center for Autism and Related Disorder, or CARD, a few hours a week.

She attended the advocacy training provided by the Florida Developmental Disabilities Council and turned her support group into a nonprofit organization, Parents Helping Parents of Florida.

Meanwhile, she worked various jobs and tried to get her husband to get a job, to no avail.

The couple finally separated four years ago, when Miller asked her husband to leave. "He said nothing. He got up, packed his bags and left the day before Naddie turned 13," Miller said.

She eventually got full custody of her children, with no visitation, and finalized her divorce last year.

Despite all the ups and down, Miller kept her focus on raising her children. She got involved with CARD and learned how to make her home visually friendly for her sons.

She used CARD's resources and mounted visual clues - small laminated drawings - at every corner of the house to tell the boys what to do when, where and how.

She created "social stories," which she reads to the boys before going to the doctor or to grocery shopping, so they'll be prepared.

"My boys can do anything," she said. "I'm not changing who they are. They're really pure. You have more difficulty controlling a typical teen. But with these guys they're a clean slate."

So when one neatly laid all his favorite things and colorful beads on his new bed and decided to sleep on the floor, Miller got him a sleeping bag.

She waited patiently for four years to take one of them off a diet that included waffles and noodles only.

"Some parents grieve the perfect kid," Miller said. But Miller doesn't, because she knows what it's like to lose a child. Her first-born, from her first marriage, was found strangled at the side of the road 10 years ago.

"My children are part of God's army. My kids are functioning. My kids are thriving," she said.

Miller works full-time for CARD from her home office. One of the walls is covered with certificates of achievement and other certifications she's earned along the way.

Her sons' desks sit at the side of her office, decorated exactly as they are at their school, New Horizon Academy.

She's better known here as the "CARD lady" in Marion County.

"Sylvia has been a real guiding light for us to move Billy to independence," said Barbara Leonard, grandmother of Billy, who has autism. Leonard is active in autism-related activities in the county and said she's known Miller for a while.

Miller has her hands in almost all autism-related activities in the county. "I join anything you can to network and make connections," she said. She planned the autism-awareness activities this month, which is the national autism awareness month.

And she's working on starting a summer camp program, where 30 children with autism and other disabilities are placed in three regular summer camps. She's gotten a grant to hire a certified teacher and six certified paraprofessionals, and she's working to gather volunteers from the University of Florida, so that every child will be accompanied by an adult.

"It's just for one week, so we can collect data," Miller said. "The ultimate goal for kids is to go to every camp in Marion County," and socialize with other children.

With close to 400 students with autism spectrum disorders attending Marion County Schools, advocates like Miller see it necessary to have the children integrated with society, because they will one day grow up and get a job.

There's no doubt in Miller's mind that her sons will one day be able to live independently at the house they all live in now and earn a living.

Her goal is to be able to see them live on their own within 10 years, when Kibby and Shukiy are out of school. "My freedom is my driving force," she said with a laugh.

In the meantime, Miller has been focusing on her sons' strengths, so one day they can get a job. "I see Kibby as a mechanic and Shukiy can work at anybody's kitchen. He loves to cook," she said.

"Don't think they'll never amount to anything. There's always a job somewhere they can do. Invest in them. They're people. They're whatever you make them out to be. Just like my other kid," Miller said, referring to her 16 year-old daughter, who's a junior at West Port High School.

Miller, who gets calls from a handful of parents in need of help each week, gives tours of her house. Her house is a model home for a family who has a child with autism, and yet it looks nothing out of the ordinary.

"When parents come to me crying and I can send them out with hope, a mission and purpose ... If I can do that every day, it makes my day," she said.

It's a mission from God, she says.

"We're just not here to live. You have to take what you've got and do something with it and make a difference in others' lives. It can't just be about me with all the people on this planet."

Writer's Showcase: Samuel Traineer

My name is Samuel and I am 14 and in the ninth grade but home schooled. My mom thought I would learn a lot if I had to help other people. So she told me I had to come up with a project to help a needy group of people. The assignment was to help improve the lives of needy people. I have decided to help kids with autism because I have Asperger's syndrome.

I know how important a service animal can be, I have a service cat named “Hub”. He is actually my second service cat. My first one, Faith-Elizabeth, died about four years ago. She helped distract me when I got angry, she played with me, she helped me work out what I was going to say to my mom and other people. Now I have Hub and he does those things. Faith and Hub made me finally belong to my family. We had something in common, we all loved Hub and Faith.

That's why I have decided to start a service cat training program for kids with autism, kids like me. I'm not a parent of an autistic kid, I am an autistic kid. We are alone and we live in a world where no one understands us. I don't know how you feel but I know what my world looks like. Everyday I struggle to make sense of what other people say to me. I have watched my mom cry before when she gets too frustrated because she thinks I don't understand. I get upset then because I don't know why she cries. I wonder what I did wrong. But then she grabs Hub and hands him to me and she stops crying and I calm down. Hub is something we share. He helps me but he helps us be a family also. That's why I have to train other cats for kids. Every kid like me deserves to belong. You can visit my website at www.freewebs.com/tenerekingdom. There are instructions there about how you can help me with my project.

Writer's Showcase: Jessica Brady

My name is Jessica, I am 25 years old. I have autism.

I attend college and have a 3.5 G.P.A. as well as being on the National Dean's List and Phi Theta Kappa Honor Society. I bowl for the Special Olympics as well. I am also married. Even though I have achieved these things, and it may sound to you that I am normal, I'm not. I struggle to cook, clean, take care of myself. I don't talk very much, I rock, I spin, and I flap. Even though I struggle, I don't let it stop me. I depend on my uncle and aunt to help me everyday.

My husband has been through a lot for me and with me. I never met a person who was willing to love me, be with me, and be my best friend despite my disability. My typical day depends so much on others: when I wake up my uncle helps me to eat, dress, and drive to our errands. I stay with him during the day because I am unable to work. (Even though I attend college, work is too much for me to handle with my many sensory issues.)

Once evening comes, my husband comes home. He cooks, helps me shower, and the day starts over again the next morning. I know it puts a lot of stress on my family because of my autism, I don't have the words to express to them in a voice and so I write, type, and point to them to show them how much they mean to me. I wrote a poem on what it is to be in a world of my own:

I live in a world all of my own.
But I am not lonely.
I may not smile, but I'm happy.
I may not cry, but at times I'm sad.
I might have tantrums, but I don't know why I can't control them.
I like certain foods, textures, clothes, sounds, and temperatures, but I like to try new things.
I may not say much at times, but I'm always thinking.
I like rules, boundaries, routines, they help me to stay focused, even when brain isn't.
I may not look at you because at times I can't get my eyes to make contact, but I'm listening to every word.
I may walk away at times, but I'm not being rude, I just need time to regroup myself.
I don't like a lot of lights, people, noises, or too much stimulation, but I like to go out and to new places.
I am autism and I live in a world of my own.
I am autistic but all I need is love.
One day they will find a cure, one day there might be more help, till then I live in a world of my own, a place where I'm free to be me.

The poem displays what it feels like to have autism. I may never be normal, but I never let it stop me. I hope one day that there will be help for children as well as adults. America should remember our autistic children of today turn into autistic adults of tomorrow.

Writer's Showcase: Matthew Ehrenhaft

Matthew is fifteen years old and a freshman in North Port High School in Florida. He was diagnosed with Asperger's Syndrome at the age of five. He is in mainstream classes and recently started writing poetry as an outlet.

Autism

If at first you do not succeed,
Try, try again to get to the lead
But sometimes in life it's hard to succeed,
Especially with autism, a problem indeed.

Let's start the story
At the beginning of the clock
It's almost as though
My brain has a lock.

It's like living on the edge
When no one is there,
Deaf, beaten, and vision impaired.
It's hard to deal with autism, it's true
But others like me, they deal with it too

Just because we're different in the way we see
And the way we see is differently
That we can still live a life that's very happy
Or live a life of eternal misery.

Our life is like a coaster, up and down,
Either too high or too low, no middle ground
When you try to find peace,
It can never be found
Either way, destruction bound.

It runs in vibrato, which is fast and slow
Like being drunk as some people know
A time bomb at times, getting ready to blow
Or a freezing river that does not flow.

If autism were normal, personalities might glow
Sadly our problems are major, they will never go
Some are moody, some get mad,
Some stay happy, some stay sad.

Itching and nervous, caught in this curse
Only intensify the pain to worse
However the brightest in the bunch
Actually have something like this
For people to understand, that is my wish

Some are so accurate, they will never miss
Others just stare, a boo and a hiss
For they don't know the curse we endure
When they do this, we suffer more

We know we're different, they know we're here
I have feelings, and they will appear
Even though they may seem different, or even weird
Don't laugh at our autism, and please be sincere.

There's one more thing I have to say,
There are more of us born each day.
People should notice who we are, today
And look at us in a different way

Maybe one day we'll all be free
But we're still unique, as you can see
One day autism will have a key
To unlock and complete this mystery.

Autistic poet gives rare glimpse into mystery illness

(CNN) -- Tito Mukhopadhyay shuffles to the front door of his home in Austin, Texas. He's coming home from school, something that would have been unthinkable just a few years ago.

His mother, 45-year-old Soma Mukhopadhyay, is considered a pioneer in a breakthrough treatment for some autistic children who face the stigma of being considered "mentally retarded."

That was a label Soma never accepted for 19-year-old Tito. And after hearing Tito's story, you'll never look at an autistic child the same way.

"How was your day?" Soma asks.

Before Tito can answer, he obsessively moves around the house, placing the TV remote in its proper place, arranging the salt and pepper shakers just so. Then he sits down in front of his specially designed keyboard to type his response.

"It was like a floating kangaroo that kept itself invisible," Tito answers.

Tito's cryptic reply is part of his medical condition. But his distinctive way of speaking is also a gift that has made him famous in a misunderstood community. Watch Tito interact with his mother »

Though Tito is virtually mute, that changes when he picks up a pencil to write, or begins tapping at his keyboard.

He is a poet, and the author of several books and essays in which he eloquently describes what it's like to be autistic.

In his writings, he explains why he doesn't make eye contact, what it is like to be obsessed with a ceiling fan, and how his brain has trouble processing sound, touch and sight all at once.

Experts confirm Tito's observations of autism. One doctor described it as the way the brain fails. None can agree on its exact cause, but most believe there is a genetic predisposition to the condition, with significant environmental triggers involved.

The developmental disorder affects the way the brain works and affects the way the child interacts with society.

Some doctors and parents see a link between childhood vaccines, others suspect pesticides or drugs taken during pregnancy. The theories are endless and most experts agree there is no single cause.

Whatever autism is, its symptoms range from a mild form to rendering individuals dependent on others for life.

Many people with autism are able to take in information very well, but the wiring in the brain simply won't allow the information to be processed in the form of organized thought and language.

Tito has given experts some rare insight into what that feels like. His poetry includes stanzas like this:

"I am he.

And I am me.

I am he behind that mirror

I am me watching the he."

One of his favorite books is Plato's "Republic."

The world may have never known about Tito's gift except for the efforts of his mother, Soma, who is from India.

Doctors there told Soma that Tito was mentally retarded and beyond hope. She gave up her career in chemistry, determined to teach him.

Eventually, an organization in the United States brought Soma and Tito, then 10 years old, to the United States to study him because he defied the stereotype of an autistic child.

Soma's method of teaching Tito is called the Rapid Prompting Method. I watched her work with other children at the HALO -- Helping Autism through Learning and Outreach -- center in Austin, Texas, where she teaches while Tito attends school.

The therapy starts by asking the children to point at words on pieces of paper. Once they've mastered that, they use the stencil.

If their motor skills develop well enough, the children will type on a specially designed keyboard.

Her technique seems to be working for the children who attend therapy at HALO. There is a yearlong waiting list for four-day therapy sessions. It can take years to see progress.

Rapid Prompting has not been tested in long-term scientific studies, and Soma is not without her critics. Some criticize her methods as harsh and unproven.

During her sessions, Soma never says "good job," never rewards a child with a high-five or a treat, which is a common reward in other therapeutic techniques.

Soma is unapologetic.

"I don't see the child as autistic. I don't see the label at all," Soma says, speaking quickly in her musical Indian accent.

"I see the child as a person. And just as I would talk to any person, I would talk to a child, because the world is not going to talk to them in a very slow way."

Dr. Michael Merzenich was one of the first experts to pay attention to Soma's technique. He's a neuroscientist at the University of California, and he believes Soma's rapid prompting works.

He says there is no doubt the children are using their minds to create their own words and express their own ideas. Unlike facilitated learning techniques that have been discredited, Soma does not guide the children's hands.

"Imagine what it would be like," he says, "to be able to understand everything that's said to you -- to think and to be unable to communicate your own thoughts and ideas."

Merzenich does not believe Rapid Prompting works for all autistic children, but has no doubt it can help thousands.

I watch several young children in their therapy sessions on this day in Austin. Some struggle horribly. The session makes the children appear stressed, but they continually make small breakthroughs and answer questions correctly.

Soma conducts about 10 therapy sessions a day.

"You must be exhausted," I say to her.

"I can't be," she answers curtly but with a smile. "I have to go home now and teach Tito."

At their home, I ask Tito if he is happier now that he can communicate. He writes out a long response on a piece of paper on a clipboard.

"I can't say whether I am happy or not, because happiness is a state of my mind. So sometimes I think I'm happy. Other times it is hollowness."

It's probably a true statement for most of us at some point in our lives. Soma smiles at the response and doesn't miss a beat.

"Keep writing," she says to Tito. "Keep going."


I am going to post more on Tito's writings in my other blog Autistis Savant.For me he has a savant skill in the Art of Writing.Tito has his own website http://halo-soma.org and has published a book entitled "The Mind Tree: A Miraculous Child Breaks the Silence of Autism"Those interested to read more about him can go to this website.