3 Parents of Autistic Kids on Being Close to the WTC on WTC Day * Distress Help in Boston * Scaling Walls: Autobiography Helps Families Cope With Autism

[Guest guest]

FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org

" Healing Autism: No Finer a Cause on the Planet "

______________________________________________________

September 18, 2001 News Morgue Search www.feat.org/search/news.asp

>>> Register Here For the FEAT Capitol Autism Conference <<<

Saturday, Sept. 22, and Sunday Sept. 23, Sacramento, CA

http://www.angelfire.com/on/FEATNews/FEATConf.htm

AUTISM AND TRUAMA

* 3 Parents of Autistic Kids on Being Close to the WTC on WTC Day

* Distress Help in Boston

RESOURCES

* Scaling Walls: Autobiography Helps Families Cope With Autism

Three Parents of Autistic Kids on Being Close to the WTC on WTC Day

[Here are some notes from parents with autistic children, who are a

little closer to the epicenter of WTC Day, and who share their thoughts on

the events. McIntire is a FEAT parent who lives in Sacramento and

whose work found him in New York City that day.

... I'm just sick over the whole thing. I am 10 miles away from WTC -

with the dichotomy of the incredibly beautiful weather. It just makes you

sick.

One of my programmers here, is a volunteer fireman, his company spent

yesterday digging in the rubble. Their day was defined by which bucket

detail you were on - white or red (trash or body parts).

His next door neighbor has not come home - one of several on his small

street. The wife of one of our DBA's stayed home Tuesday to observe her

child at pre-school. None of her co-workers have been heard from.

Just about everyone here in North NJ personally knows someone who " did

not come home Tuesday. " It's as close as they can come to saying their

family, friends, and neighbors are dead and gone.

I am just an observer here, of the pain in these peoples lives. Still,

I wonder if the lack of " missing persons " where we live in the west will

prevent us from understanding quite like the people here. Maybe in the

South, and places where the civil war memories are still strong.

Ugly things are coming. Because where I am, this country is already at

war.

McIntire

* * *

WTC Story

[From Ed DeCelie. Ed is a parent of an autistic child and regularly

gathers scientific many of the science reports in the FEAT Daily

Newsletter.]

I work at the base of Water Street in downtown Manhattan which is

perhaps 10 or so blocks from WTC. My group was evacuated from the area at

11 AM. From friends' accounts it was orderly but overwhelming. They had

never seen so many people in the area at one time. Rush hour in NYC has

always been a sight to see but public transit wasn't available making this

all the more incredible. They were instructed to walk north of Canal Street

to gain access to subways and trains leaving Manhattan.

I was in my car heading to trains which would have the WTC as their

destination when the first plane hit. I knew immediately that I would have

to try a different route possibly through Staten Island to get to work. I

was in Perth Amboy, NJ at the time. I crossed into Staten Island using the

Outerbridge Crossing heading for the Staten Island Ferry which would leave

me in downtown Manhattan. I received a page from my manager and when I

returned his call he told me to return home. While I had no trouble

entering Staten Island all bridges and tunnels were closed after the second

plane hit. I wasn't allowed to return to New Jersey, where I live, for 3

hours. The bridges leaving Staten Island for New Jersey were reopened

around 12:30 PM. The bridges from New Jersey to Staten Island weren't

reopened until roughly 9:30 AM today.

The building we work in has not had power since yesterday and all

computers have been powered off to avoid overheating. That was last night

around 10 PM I don't have word about the immediate future such as when I am

expected to return to work nor the status of the data center.

I guess in some ways I should consider myself lucky since I haven't

lost any family and have been told to work from home. I also never got

close enough to the area myself yeterday to be considered in harms way. I

do have some friends that are with the NYC Fire and Police departments whom

I am concerned about.

Ed DeCelie

* * *

September 12: The Mourning After

[by Bob Naseef. Bob is the author of " Special Children, Challenged

Parents: The Struggles and Rewards of

Parenting a Child with a Disability.”]

As a new day dawns, blurred fiery images flash before my eyes. I eat

my cereal and turn on the television which confirms that it was no

nightmare. My eyes glass over as I contemplate the inferno that was a

crematorium to uncounted lives. What about the injured? The walking

wounded? The living? Their families and friends left behind? The rescuers

with their battered senses? And what about the rest of us forced to watch

helplessly? Can we ever heal from this?

It’s the first day of the rest of our lives. My head is still

spinning with the news as I awaken. Most of us woke up on September 11 and

began what we expected to be a typical day. We went to sleep, if we could,

with New York and Washington smoldering, a nation bereaved with a loss of

life and health and safety and innocence we could have never imagined—with

new and special needs. We will all remember where we were when we heard the

news. Like any great loss, that moment will punctuate our lives into a

before and after.

I was in my office in Philadelphia listening as a psychologist to

people’s problems when my wife called me with the news of what she was

watching on television. The city was being evacuated. I walked past the

Liberty Bell shut down for the day and guarded by police. As schools were

dismissed, I just wanted to be home with my family. I wanted to see their

faces and hear their voices and know they were safe. There was nowhere else

I would have rather been. I wanted to feel the sun on my face and smell

the fresh air of a late summer day and share it with those I love.

Now on the morning after I struggle to comprehend what I had seen and

heard. Tears welled up as I heard the news that had accumulated overnight.

As I listened to others today, many of whom have children with disabilities

and chronic illnesses, I struggled with them to place the events in the

context of the life I have known so far. Today everyone is saying that the

tragedy wrought by terrorists is giving them perspective.

These folks have known personal tragedy. Some of them have lost a

healthy child. Some of them have lost the child they dreamed of. Some of

them are waiting for their child to die. Some of them are recovering from a

child’s death.

What was the same? These feelings of numbness, unreality, fear,

worry, sadness, helplessness, and anger. The anger can be consuming for you

want a target to strike back against- like the doctor who gave you the news

or the hospital where your child was born. You are powerless, and yet you

want to believe you have power. You have a mindset that seems as if it

would never change for life would never be joyful again.

What was different? I wasn’t alone as I was when I found out my son

had autism and that the condition would last for his lifetime. I can

remember believing that I would never smile or laugh again. I wanted to be

alone rather than be together with similar parents in pain. I didn’t want

to believe what was happening.

The Japanese writer and Nobel Prize winner, Kenzaburo Oe, has

eloquently described this kind of very intense and exceptionally personal

loss. In 1964, when Oe was twenty-nine, his first child was born with brain

damage. He described their very close bond in a story called " Teach Us to

Outgrow Our Madness. " Oe and his fragile child became so close that Oe

believed he would die if Pooh died. Oe was convinced that he and his son

shared sensations so completely that he felt his child=s pain as if it was

his own.

Oe perceived his child's impact on his hopes and dreams as a nuclear

explosion--a personal holocaust. Coming from a man who grew up in Japan in

the aftermath of Hiroshima and Nagaski, this is a especially powerful

metaphor to describe the change in his personal world. Oe wrote often of

his connection to his child and of his quest to survive the personal

devastation he felt. Often people have spontaneously described to me how

the diagnosis of their child’s disability was a bomb that exploded life as

they had known it.

Now there is a bomb to our group psyche and a collective loss. You

can talk to almost anyone and almost anyone wants to talk. As I walk

around the city where I was born, Philadelphia feels like a village. There

is more connection and compassion. From all we can gather, there is a great

outpouring of people wanting to help in New York and around the world which

is heartening to experience.

Healing the hurt from our losses both individual and collective will

take time measured more in years than days. We will need support and

courage and love to make it. The intense feelings evoked by the terror will

cycle through us in myriad individual ways. We will have to experience this

remarkable pain in order to accept the reality of our losses.

A very disturbing current rages in all the talk of retaliation and

retribution, often done with the tune of “God Bless America” as an

invocation. The cycle of violence seems far from over. Some people think

they will feel better if there is quick action with more violence in someone

else’s homeland. What will this teach our children?

For a long time, I have considered myself a world citizen with roots

in Europe and the Middle East. I shudder as I contemplate the backlash

already beginning against Arabs living in the United States. My two

youngest children embody the Arabic and Jewish and European roots of their

parents. My most fervent hope is for a fair and lasting peace for Jews and

Arabs and all peoples in a world where we can solve problems together in

peace and with compassion. Since my college years in the 1960s, I have

hoped for a world where we can live in harmony and with dignity without

regard to the color of our skin, the faith we profess, or our individual

differences and abilities.

It’s hard to keep hope alive when you’re mourning. Today I remind

myself that ancient philosophers-- eastern and western alike--believed that

there could be redemption born from tragedy. Perhaps this can be an

occasion for us to show our children how to make the world a better place.

To all my brothers and sisters in our human family-

Shalom alechem Salaam aleikum. Peace be with you.

A. Naseef, Ph.D.

www.specialfamilies.com

>>> PROFESSORS, TEACHERS, TRAINERS <<<

Autism Continuing Education for

Students Now Available

ADVISE TO SUBSCRIBE TO THE

FEAT Daily Newsletter, NO FEE.

http://www.feat.org/FEATNews

* * *

Distress Help in Boston

With the thousands of families touched by the tragedies at the World

Trade Center, Pentagon and Plane Crash Victims chances seem good that some

may have special problems associated with caring for a child with Autism at

this trying time.

Community Outreach Learning Experiences, Inc. (COLE, Inc.) a small non

profit group North of Boston, MA has volunteered to supply MA families

respite, babysitting, transportation ... whatever may help a family needing

help with an autistic child or family member while dealing with these

tragedies.

If you know of a family that may need special help, to attend a

funeral, go to New York, attend to a child already struggling with autism

and now left without a mom or dad, please let us know.

Those of us dealing with autism, in one way or another, are also a

family. COLE, Inc. would like to help our sisters and brothers in any way we

can.

Sincerely,

Directors

Gehring, BA

Maureen Branconnier, M.Ed., MBA

(978)774-6155

* * *

Scaling Walls: Autobiography Helps Families Cope With Autism

Brookline author Shore

[by Azell Cavaan in the Boston Herald.]

http://www.bostonherald.com/lifestyle/lifestyle_trends/life09042001.htm

For the first 18 months of his life, Shore of Brookline

developed much faster than most toddlers. But one day, seemingly out of

nowhere, something changed.

“I lost my ability to speak,” said Shore, who is now 39. “I became

tantrum-prone and generally unaware of the environment around me.”

Shore remained non-verbal for two years.

It w toddler who began amazing his family by turning over in his crib

at just 8 days old. And it was also the beginning of a new life.

As an adult, Shore would devote his life to tearing down walls meant

to bar people like him - people diagnosed with autism - from mainstream

society.

In his recently published autobiography, Shore, a college professor,

professional

as a bizarre change in activity for the lecturer and doctoral candidate,

provides an account of the daily challenges people with autism face as they

live, work and love in an often complex and confusing world.

The book, “Beyond the Wall - Personal Experiences with Autism and

Asperger Syndrome” (Autism Asperger Publishing Co., 2001), is his way of

giving back, Shore said.

http://www.amazon.com/exec/obidos/ASIN/1931282005/qid=987170764/sr=1-3/ref=s

c_b_4/107-8603624-1326118 <-- address ends here.

“I've received a lot of help from people and I know there are others

on the autistic spectrum who want to learn more about the disorder,” said

Shore, who was diagnosed with atypical development and strong autistic

tendencies at age 2.

Autism is a developmental disorder of childhood that affects

approximately one in 500 children.

The disorder interferes with development of the brain, including those areas

that regulate reasoning, social interaction and communication.

Asperger syndrome, a milder variant, is similar to autism, except

children who have it possess well-developed language skills, according to

the American Academy of Pediatrics.

Growing up with either disorder and living with it as an adult can be

difficult if affected families are not well-informed, according to Shore.

“There's a stigma because it's an invisible disability,” he said.

“People sense something's wrong but they can't quite figure out what it is.”

Today Shore is married (his wife does not have autism), teaches at

several local universities, lectures throughout the country, and is working

on his doctoral degree in Boston University's Department of Special

Education. He is also president of the Asperger's Association of New

England.

Despite all of that, he struggles with his disability daily. Reading

non-verbal communication cues in subtle social situations is often taxing,

he said.

“If someone is looking at their watch constantly while I'm talking, it

may take me a while to figure out it's time to change the subject or let

them talk for a while,” said Shore. “But I've gotten much better at reading

body language over the years.”

Cultivating relationships with mentors and reading about his

disability have helped Shore develop coping mechanisms to function normally

in the world, he said.

And he has devoted his life to helping others like him reach their

goals, too.

“He's a staunch advocate for proper treatment, education and

employment opportunities for people with high functioning autism or Asperger

syndrome,” said Arnold , director of the Massachusetts Language and

Cognitive Development Center, who encouraged Shore to write the book.

A college professor of special education, math, computer technology

and music, Shore said he combines his professional and personal experiences

when working with people from ages 2 to 40 who have autism.

Jeanne Willig of Cambridge, whose 35-year-old son has autism, learned

of Shore and his work over the Internet and immediately signed her son,

Mark, up for sessions.

“He's able to hold Mark's attention and get him going,” said Willig,

who also uses art therapy for her son. “There have definitely been changes

in Mark and he especially loves singing with .”

An accomplished musician, Shore often plays musical tunes as a way of

connecting with children whose autism makes it difficult to communicate

orally.

“Music talks to a different part of the brain than does oral

communication,” Shore said.

“One kid couldn't say a word but had 100 songs stored in his head.

Music be

came his means of communication.”

Shore can be contacted at Tumbalaika@... for further

information about his book and his work with children on the autism

spectrum.

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the FEAT Daily Newsletter.

To Subscribe go to www.feat.org/FEATnews No Cost!

_______________________________________________________

Lenny Schafer, Editor PhD Ron Sleith Kay Stammers

Editor@... Decelie CALENDAR: Guppy events@...

Unsubscribe: FEATNews-signoff-request@...