Tuesday, April 29, 2008

Autism: A story of hope

Therapy helps boy reclaim childhood


Six-year-old Ryan Nichols loves to talk about his favorite toys, which recently were scattered throughout his family's living room.

He says he's especially fond of his NASCAR toys and Leapster gamepad, which he plays with in his bedroom.

Ryan also has been to Walt Disney World twice and often wears a Mickey Mouse sweat shirt he got there.

His parents, Frank and Dione Nichols, hinge on every word Ryan speaks to them. It's something they waited years to hear.

Their son, who has autism, now is reclaiming his childhood thanks to ongoing speech and occupational therapy, his parents said.

"When you start, there's so much to work on," Dione said. "We've made great progress, but the problem is the expectations keep going up each year."

Ryan attends a full-day kindergarten program. He also receives one hour each of speech and occupational therapy once weekly after school at Easter Seals New Hampshire in Dover.

Ryan has made new friends in his class and is just learning how to ask appropriate questions so he can converse with his classmates, his mother said.

For example, Ryan is learning to ask, "Any questions?" after making a show and tell presentation, his father said.

There are so many things Ryan does now that he couldn't when he was 3 and 4 years old, Dione said.

"We wondered if he would ever ask for a present" at Christmastime, she said.

This Christmas, Ryan asked for a Lego airplane. He also opened his presents in less than an hour on Christmas morning, his father said.

Like many children diagnosed with autism spectrum disorder, Ryan is sensitive to various sounds, such as the microwave or creaking on the stairs.

Dione said there was a time when Ryan couldn't stand to listen to the car radio.

Frank said he also had trouble if they were in a store and the public address system came on.

Watching videos like Disney's "Little Einsteins," and "Thomas the Tank Engine" helped Ryan break down different sounds and music, Dione said.

"This was the first year we could play Christmas music in the house," Frank said.

Dione said Ryan "was a very, very happy baby, pretty easy going," but she started to notice signs that he was not developing properly early on.

For example, when he was a year old, he didn't wave goodbye or point at objects like other children do at that age, she said.

At 2 1/2, Ryan would say some words, "but I would never hear those words again,"she said.

At 3 1/2 years old, Ryan talked more, but mostly would repeat phrases he heard while watching videos, his mother said.

If she asked him "Do you want waffles or pancakes?" Ryan would reply, "Waffles or pancakes" and not answer her question, she said.

A former preschool teacher with some knowledge of childhood development, she found herself doing more research online and in books. Little by little, she came to realize her son showed signs of autism spectrum disorder - a diagnosis later confirmed by the Seacoast Child Development Center at the University of New Hampshire in Durham, where Ryan was evaluated.

Dione said it's taken a lot of hard work and patience to help their son reach this stage of his development.

One of the most difficult aspects was figuring the right type of therapy to help their son learn to communicate and engage the world around him, she said.

Her son attended a preschool program offered by the local school district, but his mother said she wasn't satisfied with the services they provided.

At age 4, Ryan attended the Dover Childrens Center kindergarten program for a year and received more than two hours of speech and occupational therapy weekly.

"Ryan was very fortunate to have a wonderful kindergarten teacher," his mother said. "They focused more on pure childhood development."

They helped Ryan learn to play with other children and made sure Ryan always was involved with class activities, she said.

"At that time, Ryan would not do an activity for more than a minute or two," she said.

The teachers made several possible activities available at once, with roughly six things for him to do at any given time. They would go from one thing to the other as needed to guide Ryan, his mother said.

At home, she and her husband continuously worked with their son to reinforce the skills and learning techniques used at school, she said.
Dione learned the best way to teach Ryan how to do a simple task like drawing a picture was to break it down. Instead of asking him to draw a face, she would practice helping him draw the eyes. Little by little, Ryan improved his speech and play skills, she said.

Frank said they've also learned there is no hourglass that governs how much their son can learn.

Many doctors and childhood experts told the couple their son had to master certain skills by age 6 or his learning window would close.

But Ryan's speech and occupational therapists told the couple the brain is malleable, and people never lose the ability to learn, even if they have autism, Frank said.

"You got to crack the code" when it comes to helping children with autism learn, Dione said. She compared the process of trial and error to what Thomas Edison said about creating the light bulb. Edison used to say he found 10,000 ways not to make a light bulb before he discovered the right way, Dione said.

But the couple says they by no means believe they've found the best or only way to help other families who have children with autism. If there's one common thread other people can take from the Nichols' situation, it would be hard work and never giving up, no matter what, they said.

"We had plenty of bleak days," Frank added.

Now Ryan's father said he feels more optimistic his son will have a good life.

"It gives me hope for a better tomorrow," Frank said.

As Ryan heads toward first grade, his parents say there are still many challenges that remain to help their son build his social and communication skills. But they add that they also feel they'll meet those challenges based on what they've experienced so far.

"I'm proud of Ryan because he's worked so hard," his mother said.

Thursday, April 24, 2008

Student spreads word about autism

SOUTH HADLEY - A 16-year-old South Deerfield teen-ager who is a student at Pioneer Valley Performing Arts High School is out to educate the public about autism spectrum disorders as part of April being National Autism Awareness Month.

The youth, Daniel E. Sandberg, has Asperger's syndrome, which is on the autism spectrum. Autism is a complex developmental disability that typically appears during the first three years of life and affects a person's ability to communicate and interact with others, according to information posted on the Web site of the Autism Society of America.

Asperger's syndrome is characterized by limited interests or an usual preoccupation with a particular subject to the exclusion of other activities, according to information on the Web site of the National Institute of Neurological Disorders and Stroke.

Asperger's syndrome may also involve repetitive routines or rituals, peculiarities in speech and language, socially and emotionally inappropriate behavior, the inability to interact successfully with peers, problems with nonverbal communication, and clumsy and uncoordinated movements.

Sandberg is raising awareness about autism through posters to which he added interlocking puzzle pieces that state simple facts about the disorder.

Among them are, "People with autism spectrum disorders accept others without judgmentã and, "Many people with autism spectrum disorders are very anxious."

The poster also has a photograph of Albert Einstein, who is suspected to have had Asperger's syndrome.

Sandberg said he is particularly pleased that students have reacted positively to posters.

"It made me feel so good," he said during a recent interview at the school. "I'm trying to educate people about autism ... I want to be a good advocate for teaching more people about autism."

Sandberg, who was diagnosed at age 7, attends regular classes but has special help outside the classroom.

One way his disorder manifests itself is that he has difficulty in crowded, noisy situations, Sandberg said.

However, Joann L. Odato-Staeb, a consultant who works with Sandberg, said a positive aspect of being unusually sensitive to sound is that Sandberg is able to hear things musically that other people cannot sense.

Sandberg, who plays guitar and writes songs, said he would like to become a sound engineer.

The sophomore, who plans to do a presentation at school on autism spectrum disorders, said, "There is a lot more people could be learning ... Education is a big thing.

"I'm never shy about letting people know what I have," he added.

Sunday, April 20, 2008

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."

Friday, April 4, 2008

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.


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.