Haley Moss: Out of Autism's Closet

She could not talk until almost Kindergarten age, but went on to become a straight-A student at a prestigious private school. Now "out of the closet" with her autism, Haley Moss has written a book to help other teens with autism find their way.

Three cheers for Haley Moss, her parents, and all who helped her along her road! I wish her mother would write a book too -- note her words about people pulling away from them when Haley was diagnosed, and their decision to be "closeted."

"In middle school, everyone just cares that you're like them, and if you're different, you get picked on." --Haley Moss

Teen with autism advises other 'different' kids

By Elizabeth Landau, CNN

April 2, 2010 5:47 a.m. EDT

Haley Moss, 15, loves art and has exhibited paintings in South Florida.

STORY HIGHLIGHTS

• Haley Moss, 15, wrote a guidebook for middle-schoolers with autism
• Understanding nuances of socializing is hard for people with high-functioning autism
• Family feels relieved that Haley's autism is out in the open

(CNN) -- Figuring out what's cool. Struggling for acceptance. Dealing with homework. These are familiar perils of middle school. But Haley Moss did it all while dealing with a hidden challenge: autism.

Now Haley, 15, is using her experience as a person with autism to help others deal with middle school. She wrote and illustrated "Middle School: The Stuff Nobody Tells You About," which details her advice for students.

Autism is a developmental disorder that impedes communication and social interactions, and it often includes repetitive behaviors. Diagnosed in childhood, the condition prevents some people from ever learning how to talk. As many as 1 in every 110 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention.

Haley's case is on the high-functioning side of the autism spectrum. She has always attended regular schools, doesn't have special classes and is a straight-A student at a prestigious private school in South Florida.

"Most people just notice that I'm shy, and that I don't eat a ton of food at school," said Haley, of Parkland, Florida. "Other than that, I come across pretty normal."

Haley has had a long history of working on that shyness. When she received her diagnosis of autism at 3, she couldn't talk yet. She didn't start speaking until 4. Her parents got her private speech therapy as well as hippotherapy, a technique that involves a horse and a speech-language pathologist that has been shown to increase verbal communication in some children.

Children with autism who become high-functioning like Haley typically show great improvement within the first few years of therapy, said Dr. Bob Sears, pediatrician and author of "The Autism Book." By 7 or 8, they will have overcome many of their challenges. Early intervention is critical; treatment should start as soon as possible, he said.

Perhaps the greatest challenge for people with high-functioning autism is understanding the nuances of social interaction, Sears said. Haley relates to this.

"Sarcasm sometimes really confuses me," Haley said. "The jokes that these kids make don't make any sense."

Haley speaks fluidly and articulately. She is well-versed in public speaking, but she still has problems starting conversations. It's easier if people start talking to her first, she said. She has a passion for art and enjoys playing video games, but these are not common interests of girls at her school.

"I don't know what to say to some of my typical peers, because I can't easily launch into discussion about makeup and, like, their boyfriends as easily as they probably could talk about something else with me," she said.

But Haley also believes her autism also helps her in school. She can memorize things faster than most of her classmates, so it doesn't take as much work to study for tests. And her friends rely on her to give advice about social situations that's different from what most people would say, she said.

Being a parent of a child with autism was isolating for Haley's mother, Sherry Moss. She remembers bringing it up with other parents when Haley received her diagnosis. They thought it was contagious.

"They didn't want their kids to play with Haley anymore," she said. "So then, I never told anyone any more."

The family has always informed school administrators about Haley's autism. But they kept the matter private otherwise until Haley developed a following for her artwork as her paintings were displayed at various galleries in South Florida last year.

"Once she started getting well-known, I was like, 'Now's the time Haley, now you have to be the face of autism and let people know what we went through, and give them hope,'" Haley's mother said.

Haley went public in school when her teacher encouraged her to talk about autism in relation to her first art show. She also spoke at an Autism Society of America event last year.

With Haley now open about her autism, the whole family feels relieved, her mother said. Haley also thinks that being "out" in school is easier.

"It helped other people understand why I'm shy. It didn't help socially at all, but it helped those who were somewhat social with me understand why I am the way I am," she said.

Much of Haley's advice in the book applies across the board for anyone in middle school, but she includes anecdotes written from other kids with autism spectrum disorders as well as teacher perspectives. She also tells about her personal experiences from the three schools she attended for sixth, seventh and eighth grade.

Here are some tips from Haley:

1. Seek help if you don't understand something

People with autism spectrum disorders are often detail-oriented and miss the bigger picture, Haley said. Her mother would read English books with her and discuss the themes to help Haley see them more clearly. Haley recommends consulting parents, siblings, teachers and textbooks if you are stuck on something.

2. Learn about trends to talk about them

Haley's approach to popular culture is methodical and detached: learn about the trends to fit in, even if you don't like them. She saw all the "Twilight" movies on opening night even though she doesn't like the franchise much. She can recognize a popular Jonas Brothers song. Being up on the fads helps with socializing and avoiding ridicule, she said.

"In middle school, everyone just cares that you're like them, and if you're different, you get picked on," Haley said. "No one accepts different people."

3. Trust your parents

People with autism spectrum disorders tend to assume that everyone is trustworthy, and that can make them be easily manipulated, Haley writes. She recommends having a good relationship with your parents and entrusting them with your secrets instead of someone at school.

Her parents help her with academic and social problems. Also, she looks to her mother to interpret classmates' comments that she didn't understand, instead of jumping to conclusions.

Her next big project will either be a book about high school or an autism picture book, she said. Visit her Web site

Federal Appeals Court Rules In Favor Of Special Education Parents

Learning disability ruling holds schools liable

Bob Egelko, Chronicle Staff Writer

Tuesday, March 23, 2010

Parents of a child with learning disabilities can sue a school district for ignoring the problems and failing to arrange tutoring or other educational help, a federal appeals court ruled Monday.

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The decision by the Ninth U.S. Circuit Court of Appeals in San Francisco in a case from Compton (Los Angeles County) is one of the first in the nation on a parent's ability to enforce a federal law that requires schools to identify all children with disabilities and provide them with an appropriate education.

The law allows parents to seek a state administrative hearing to challenge a school's denial of their request to classify a child as learning disabled. In Monday's 2-1 ruling, the court said parents can also demand a hearing, or file suit on the child's behalf in some circumstances, when a school ignores the disabilities.

The Individuals with Disabilities Education Act requires schools to identify and evaluate all children with disabilities who need special education services, and allows parents to file complaints about any shortcomings in the school's procedures, Judge Harry Pregerson said in the majority opinion.

The Compton Unified School District "chose to ignore (the student's) disabilities" and is just as responsible under the law as if it had wrongly rejected her parents' request to classify her as disabled, Pregerson said.

Dissenting Judge N. Randy Smith said the law authorizes parental complaints only to protest a school's wrongful actions, not its inactions or negligence.

He said the law was intended to promote cooperation between parents and schools, but the ruling "weakens parents' role" by making schools solely responsible for monitoring children's development.

Lawyers for the district and the plaintiff, one of its former students, were unavailable for comment. The district could ask the full appeals court for a rehearing or appeal to the U.S. Supreme Court.

The student failed every class as a 10th-grader in 2003-04, the court said. Teachers described her work as "gibberish" and said she sometimes refused to enter the classroom or spent time at her desk coloring with crayons or playing with dolls.

Her mother was reluctant to have her tested for disabilities. A mental health counselor recommended an assessment, but the district instead promoted her to the 11th grade.

Her mother requested an assessment the next fall, and the school placed her in special education. The mother then sued on her daughter's behalf, claiming school officials should have made the placement in the ninth grade - when the girl was performing at a fourth-grade level - and seeking remedial tutoring at the district's expense.

The appeals court upheld a federal judge's ruling that required the tutoring. Even if the law required a parent to prove wrongful action by the district, the court said, the Compton district's "willful inaction in the face of numerous 'red flags' is more than sufficient" to show a violation.

The ruling can be viewed at sfgate.com/ZJKF. E-mail Bob Egelko at begelko@sfchronicle.com.

This article appeared on page C - 4 of the San Francisco Chronicle

Read more: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2010/03/22/BA541CJMSH.DTL#ixzz0jD9X1tdJ

Peter Singer: Philosopher, Professor and Advocate of Infanticide for Disabled Babies

" In the West, we have been dominated by a single tradition for 2,000 years. Now that whole tradition, the whole edifice of Judaeo-Christian morality, is terminally ill. I am trying to formulate an alternative. Some of what I say seems obscene and evil if you are still looking at it through the prism of the old morality. That's what happens when morality shifts: people get confused and angry and disgusted." ~ Peter Singer, “On Killing Disabled Babies”, June 30, 2004.

Dr. Peter Singer of Princeton University would call it "odious" to compare his work with that of the Nazi T4 Program and the Lebensborn Program (though like Singer, "Permission To Destroy Life" published in 1920 Germany categorized those who should be killed for the greater good). He would explain that he did not want to kill my disabled son, but that my life would have been better if I had been given the option of killing him as a baby. He would tell me that he believes parents such as I have a moral right to be able to kill our newborn children if they have disabilities. He would say that we should be able to satisfy our reasonable preferences to have a healthy, typically-developing child with a “better prospect for happiness.” He would also say that we should not feel threatened, for "human beings are not born self-aware, or capable of grasping that they exist over time.” He would tell me that newborns are not persons.

Peter Singer’s moral system of preference utilitarianism is a popular topic in many intellectual circles and in the post-religious societies of Europe. Its central premise is that to be moral, one must do whatever will satisfy the preferences of most living things. Morality, they believe, does not come from God, but from giving what we want and need to as many as possible.

Behind the mask of intellectual beneficence Peter Singer and his followers tell us what is good for us, for the disabled, the sick, the elderly, and the world. Their ethics are concerned with a quality of life which is based on rationality and self-awareness, not the sanctity of life.

"During the next 35 years, the traditional view of the sanctity of human life will collapse under pressure from scientific, technological, and demographic developments. By 2040, it may be that only a rump of hard-core, know-nothing religious fundamentalists will defend the view that every human life, from conception to death, is sacrosanct." ~ Peter Singer, "The Sanctity of Human Life", 2004.

Leo Alexander, a reporter on the war crimes of the Holocaust said, "It all started with the acceptance of the attitude that there is such a thing as a life not worthy to be lived." From the tiniest human beings to the institutionalized elderly, from the disabled who are regarded as without value, to the prisoner on death row, the whole, the broken, the saints the sinners, we must stand for those who cannot help themselves. Human life is not disposable, and every person's life possesses human dignity. Human rights are not a privilege conferred by a philosopher, a medical system, or a nation. They are an entitlement given to every human being by virtue of their humanity.

"I accepted the brains, of course. Where they came from and how they came to me was really none of my business." Dr. Julius Hallervorden on his participation in the Nazi euthanasia program for persons with disabilities and illnesses, 1945.

PRAYER: Heavenly Father, thank You for my life and the life of my child. Open my eyes, my ears, my hands and my heart to the needs of Your people. Turn all hardened hearts toward You, and teach us to love and cherish all of the lambs and sheep of Your flock. Amen.

Dr. Singer is a professor at Princeton University and teaches at the Center for Human Values. He is a member of President Obama's Health Care Team.

Jean Vanier and the Secret of L'Arche

The secret of L'Arche is relationship: meeting people, not through the filters of certitudes, ideologies, idealism or judgments, but heart to heart; listening to people with their pain, their joy, their hope, their history, listening to their heart beats. - Jean Vanier, L'Arche founder

Jean Vanier has travelled the world creating homes for people with developmental disabilities where they live with volunteers and a small staff in community. He helps teach the world that all are broken in some way. “You begin to discover a whole lot of things about yourself,” Vanier says of living in community with persons with disabilities. He learned that to “be human is to be bonded together, each with our own weaknesses and strengths, because we need each other.”

Jean Vanier is a blessing to all people, and to our world. He has committed his life to helping the marginalized, the lonely, the institutionalized, the forgotten, and the dispossessed. In 1964 he first became aware of the plight of people institutionalized with developmental disabilities, and felt led by God to invite two men to leave the institutions where they lived and reside with him in a real home. Jean Vanier named this home L'Arche, meaning "the ark", (referring to Noah's ark). It was from this original community in France, that more than 13o communities have come to existence internationally.

L'Arche communities reflect the ethnic and religious textures of the locales in which they exist, yet they all share a common philosophy and approach. The goal of L'Arche is to bring people with developmental disabilities together with those who assist them, creating homes and communities that recognize the value and gifts of every person.

L'Arche USA Becomes Member of the Interfaith Disability Advocacy Coalition

Recently, L'Arche USA was invited to join the Interfaith Disability Advocacy Coalition with full board approval. IDAC is a diverse, nonpartisan coalition of religious and religiously-affiliated organizations whose core spiritual values affirm the rights and dignity of people with disabilities. The mission of IDAC, hosted by the American Association of People with Disabilities’ Interfaith Initiative, is to mobilize the religious community to speak out and take action on disability policy issues with Congress, the President and Administration, and society.

A Room At The Inn: A Christmas Story

I have a wonderful Christmas story to share. I wrote about it last year, and it is worth being told again this year.

A young man identified as "mentally retarded" wanted to be in the Christmas play at his church. The organizers and the others in the play didn't want to include him because they knew he would "mess up."

This Christmas pageant was the church's big event of the year, and the church had become known in the area for their portrayal of the Nativity story. So it was with great hesitation that they let this young man participate. They decided to make him the Innkeeper so he would only have to stand in one place and say one line: "There is no room at the Inn."

The night of the play came, and the church's auditorium was filled. The moment arrived when Mary and Joseph knocked on the door of the Inn. The young man with special needs answered the door as he had been instructed, stood in the spot as he had been told, and recited his line. "There is no room at the Inn," he said boldly and clearly.

Mary and Joseph turned to walk away. When the young man saw that Mary was weeping on Joseph's shoulder, he jumped out of his spot and ran to them.

"Wait! You can have my room," he said.

Some in the play and in the audience thought the pageant had been ruined that night. But others knew better.

Merry Christmas, and may God bless you all.Theresa

Have Yourself A Merry Special Needs Christmas

Are you feeling frustrated by the circumstances of your life? Are the holiday preparations and anticipations making you nervous? Often, the burden of our overwork as special needs moms can lead us to feelings of anxiety, turmoil, apprehension and depression. Doctor's appointments, IEP meetings, medical testing, holiday shopping, traffic jams -- it doesn't take much for our teetering schedules to spin out of control. How can we overcome our feelings of frustration when they occur?

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Psalm 34:18 The Lord is near to the brokenhearted and saves the crushed in spirit.

John 4:4 Little children, you are from God and have overcome them, for he who is in you is greater than he who is in the world.

Luke 12:27 Consider the lilies, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these.

Psalm 46:10 Be still and know that I am God.

When we are overwhelmed and do not know what to do, remember that God will provide for us as He has always. His peace is there for the taking whether we have been dealing with our child's needs for a long time or if we have just recently received their diagnoses. If our lives don't look like most people's, and we don't conform to the norm, let it be. We have our own road, and we are not alone upon it. You and your child are unique. God had a plan for you long before either of you took your first breath. The call to us from Scripture is clear. We are to be still. Stand still — not because of our own countenance or sense of composure, but because God is our refuge and our strength.

There is peace where the humanity and humility of our special families meet God's mercy and grace. May your family's Christmas be unique, holy, still, and blessed. Love, Theresa

NOTE: Please take a listen to Immanuel (God Is With Us) below. It is sung by children in England -- it is as if they are singing it to us and to our children. THIS,my dear sisters in the Lord, is our Christmas.
http://www.youtube.com/watch?v=iE_tuMpIOho

Twas The Night Before Christmas, A Very Special Version

Friends, this was sent to me by a mother of a child with Autism. I think it resonates with special needs mothers regardless of the diagnosis of our children. It was written by Cindy Waeltermann, Director, AutismLink.

May God bless you and your beautiful children this night, Theresa

Twas The Night Before Christmas (In a Special Needs Family's Home) by Cindy Waeltermann, Director, AutismLink

Twas the night before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
Asleep early for Christmas?
...an unlikely path

The children were finally
All nestled in bed
When visions of Christmas
Ran through my OWN head

Did I get the right gift?
The right color and style?
Would there be a blank stare
Or even, maybe, a smile?

Friends & family come
But they don't understand
The pleasure he gets
Just from bending his hands.

"Just make him stop it," some say
"Just tell him "no",
You must learn to be tough.."
On, and on they do go...

We smile and nod
Because we know deep inside
The debate is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions

But what some don't know
And what some don't see
Is the joy that we feel
Over simplicity.

He said "hello"!
He ate something green!
He looked me in my eyes
He did not cause a scene!

He peed on the potty!
Who cares if he's ten;
He stopped saying the same thing
Again and again!"

Some others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With envy, with wonder,
Or even distaste,

What we want them to know
What's important to see
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try so hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at us all
With respect, even shock.

You will realize
What it is we go through
And the next time you see us
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years I learned too
When the tables were turned."

Author: Cindy Waeltermann, Director, AutismLink

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