Causes, Cures For Autism Elusive/ Important Message to Dad

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

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

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June 12, 2001 Search www.feat.org/search/news.asp

COMMUNITY, FAMILIES

Also: * Hundreds At Maine Fund-raiser for Triplet Park

* * * Important Message For Fathers with Family Autism * * *

(see below)

Causes, Cures For Autism Elusive

Weekend event benefits families

[by Thalman in the Deseret News, Utah.]

http://www.deseretnews.com/dn/view/0,1249,275010635,00.html?

ny Ware is a husky, blond-haired, blue-eyed 11-year-old boy with

an infectious laugh. He can often be found on Yale Avenue taking a little

walk without his pants on or in front of the refrigerator door at a

neighbors' looking for stuff better than what's at home.

When you talk to him, he frequently lifts his shirt and scratches his

belly or tilts his head as if he's got a crick in his neck or suddenly looks

over his shoulder as if he's just heard something and is about to tell you,

" Shh. Listen. "

What it is exactly, he won't say. He only knows about 500 words and

has no intention of wasting any on the stranger sitting at the bar in his

kitchen. " Juice, " he announces. And in a cascade of parental praise and

dispensing ice, that's exactly what his mother gets him. Then he's off again

to another part of the house and back into that space no one else can go.

Invited there regularly will be the movies " Jungle Book " or " The

Wizard of Oz " or " Poppins " or " Chitty-Chitty Bang-Bang. "

" For a while we thought there was something about Dick Van Dyke, " says

Ware, fully displaying what must be a parent's most important survival

tool in living with an autistic child. " We literally wore out three copies

of 'Chitty-Chitty Bang-Bang.' Something will just suddenly engage him, and

you're never exactly sure what it will be. "

Not being engaged in anything was what noticed about her son from

the first.

" He never wanted to be held, and when I did he would always face out

away from me, " she said. " He has never once pointed and said, 'What's that?'

That would be an act of sharing, and ny has no concept of that, or that

anyone else has a life or that there is anything but what's going on in his

world. That's just ny, and that's who he has been since day one. "

He's just who he is, said Kathleen, his 13-year-old sister. " He's a

great brother. I don't really think about it that much. Besides, he doesn't

talk back, we don't fight, and he can't tell on you. "

Swimming with dolphins

Other than autism, ny Ware is fine. He is physically where he

should be, and his motor skills developed normally. That's the case for a

lot of the 4,000 people in Utah who are autistic. Autism disorders affect

400,000 people nationwide and occur in one in every 500 births. That makes

autism far more prevalent than cystic fibrosis, multiple sclerosis, cerebral

palsy or Down syndrome.

That is just one fact lost in a growing mythology about the mysteries

of autism — mythology fraught with blame for the causes and rampant rumors

of cures.

On a recent trip to England, Ware and her husband, Mike,

overheard on the radio a news report of a family in a small town on its way,

thanks to the generous townsfolk, to somewhere their child could swim with

dolphins. " They were talking about how great life was going to be after they

got back and their child was cured, " Ware said. " They used the word

'cured.' "

" That was tried years ago, yet here was another family thinking of

using the old dolphin cure, " Ware said. " We couldn't believe it. But

there is no more vulnerable sales prospect than the parents of an autistic

child. There must be 30 cures of autism out there. If any one of them really

worked, there would be 29 less. "

Possible causes for autism are much more numerous. The current

scapegoat is the mumps, measles and rubella vaccine. But before that were

environmental toxins, viruses, other vaccines and genes. (The University of

Utah has a 10-year gene study under way that involves the Wares and other

families.)

Parents of autistic children are bombarded by a mixture of real

science, half truths, quick-fix promises, not to mention the good intentions

of family, friends and local professionals, Ware said. " It's a spectrum

disorder, meaning it has numerous and various levels of behaviors. It defies

easy generalizations, and just getting through one with what you need for

your child is a feat in itself.

" Weekend of fund raising

Ware, who is president of the Autism Society of Utah, said parents

often say that learning a child is autistic is the most traumatic thing that

has ever happened to them. They see it as a great tragedy that will continue

to disappoint at all stages of the child and family's life.

But parents need to remember that their grief is not shared by the

child; the grief is over the loss of a normal child that the parents

expected. The child needs to be separated from the parents' perceptions of

the child they have, " the one who needs the support of adult caretakers and

who can form meaningful relationships with those caretakers if given the

opportunity. "

Caretakers can be teachers or other professionals, friends or

neighbors, she said. " I have the best neighbors in the world because they

know ny, and if he's out doing his ny thing they take care of him. "

Funds to help parents find help are always needed and are the focal

point of a fund-raising party this weekend in Wendover. Several activities,

including a golf tournament and a concert by KC and the Sunshine Band, are

scheduled.

All of the proceeds are earmarked for the society. The event is being

sponsored by Divine, owner of the State Line/Silver Casino and

the parent of an autistic son.

Asking for help

Jim Sinclair, who has autism and speaks often on what it's like, wrote

in the Autism Network International newsletter that autistics are

" foreigners in any society. There is no normal child hidden behind the

autism. The tragedy is not that we're here, but that your world has no place

for us to be. " He urges parents to say to themselves: " This is not my child

.. . . this is an alien child stranded in an alien world, without parents of

its own kind to care for it. "

ny Ware does relate to the world in his own way, and he can learn.

He communicates using some sign language, words and files full of pictures

he can point to to illustrate his handful of basic needs.

" The most uttered phrase around here is, 'Why does he do that?' " Mike

Ware said. " If you can answer that question, there's a Nobel Prize waiting

for you. "

There are moments, in the car usually, when thinks of her son as

going through a phase, like when one daughter gets her driver's license or

her other learns to read.

" We kind of lull ourselves into this daydream that it won't be that

much longer, " she said. " But his first word was 'help,' and it is still the

one he uses most. "

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* * *

Hundreds At Unity fund-raiser for Triplet Park

[by Leanne M. Robicheau, of the NEWS.]

http://www.bangornews.com/cgi-bin/article.cfm?storynumber=35989

It was a great day for a train ride.

, Marcus and Brydon White would have loved it.

But the 6-year-old triplet boys, who died Jan. 12, 2000, in a fire

that destroyed their home, could only be there in spirit.

Hundreds of people celebrated the young boys’ lives Saturday when they

returned to the Belfast and Moosehead Lake Railroad station for a

fund-raiser aimed at creating an educational park in their memory. The last

time community members visited the train station was shortly after the boys’

deaths, during a memorial service, in which friends and family sent them on

a symbolic last train ride.

“The boys loved the trains,” their teacher Amy Benham said Saturday.

Former Unity firefighter and Waldo County Sheriff , 48,

who suffered a fatal heart attack while fighting the blaze, would have been

pleased, too, to see the positive effect that he and the boys have had on

the community.

On Saturday, the Unity Rotary Club sponsored what Bob LaMontagne,

Rotary director of community services, called the first major fund-raiser,

the proceeds of which will go to creating Triplet Park. LaMontagne also is

vice president of the railroad.

Groups working on the fund-raiser had raised $1,300 from two earlier

events and miscellaneous contributions, said Bastien, a member of

Unity Barn Raisers, a local nonprofit organization. The goal is $150,000 to

$200,000, Don Newell, chairman of Unity Barn Raisers’ special initiatives,

said, noting that its aim is also to establish an endowment to care for the

park in perpetuity.

A 2-acre-plus parcel is being donated to Barn Raisers by the triplets’

grandparents Barbara and Kurt Freyer Sr., according to Newell. The land is

located on Woods Lane, just off School Street, across from Unity Community

Center.

According to Newell, the site is ideal for a park that is dedicated to

children since it’s close to the community center, as well as to Unity

Elementary School and Head Start. The park will have an educational theme

geared toward special needs because the triplets were all autistic. Autism

is a developmental disorder commonly characterized by a diminished ability

to engage in normal social interactions.

The park grounds will include a special area for a

Memorial, Newell said, “a place for police and fire personnel to go and find

solace.” Design drawings of the park can be seen on the Internet at

www.unitymaine.org.

Everyone seemed upbeat at Triplet Park Day, whether they were on the

scenic train ride or in the horse-drawn trolley. Activities for children

included face painting, donkey cart rides and other amusements. Antique cars

and go-carts were on display, music played all day long, and the smell of

barbecued chicken cooked over a wood fire filled the air.

A brief presentation around noontime described some of the details of

the planned park.

“The project is to provide opportunities for healing,” Newell said

after describing the park. He said it would be developed in stages to allow

the community, young and old, to help with the creation of the memorial

site. The fund-raising group also will seek grants, he said.

During the presentation, Donna White, grandmother to the triplets,

spoke about watching the community work all week long on preparations for

Triplet Park Day, while she was at work, across the street from the train

station.

“This is awesome,” White said. “I just can’t say how much this means

to my heart.” “The park will be an awesome place for people to learn,” she

said.

Triplet Park will have an amphitheater and will be an outdoor

classroom for youngsters, with a focus on special needs children and

experiential learning, organizers said. A stone area with climbing rocks is

planned, as are sandboxes.

“The design is with small children in mind,” Newell said. “It’s

Triplet Park.” Newell and others have been working with members of the

Sheriff’s Department on the design of the Memorial area, which

would have benches and plenty of flora and fauna, he said.

Rather than pushing to complete the park, organizers want to build it

in stages so that everyone, especially children, has an opportunity to get

involved, Newell said.

“We have to look at this through the eyes of children,” he said. “That

takes creativity and that takes time.” Another budding fund-raiser is the

creation and marketing of a quilt that will be sold.

A program that should steadily grow is being developed by local

gardener and Barn Raisers member Patrice , he said. Each year, she will

have first-graders participate in planting flower beds at the park.

Benham, who taught the triplets and is a Barn Raisers member,

described plans to have all the pupils who were in the boys’ class create

handprints in a concrete entranceway at the park, a reminder of a rainbow

they made with their handprints for the triplets’ memorial service.

Music teacher Sullivan has written a song, “Celebrate

Children,” which in some way will be implemented in the park’s design,

Benham said.

Pointing to how much the triplets and the former sheriff meant to the

community, Sheriff Story said, “This community and this county have

spirit.” “Unity ranks right up there with community service and sense of

community,” Newell said.

Besides helping the community to heal from the loss of the triplets

and its sheriff, the planned park will “have children learning community

building,” Newell said. “[And] we’ll have a beautiful park forever.”

* * *

Important Message For Fathers with Family Autism

There just might be a little treat for you in the FEAT

Daily Newsletter this Sunday. That’s because in

celebration of you on Father’s day, we are throwing

open the pages of the newsletter to all readers who

want to share with the entire community just what

great a dad you are and how much you are so dearly

loved. They’ll do it by sending a posting about you

in a Special Father’s Day Reader’s Post.

To All Family Members: Here are some things you can

write and send in about dad.

Mom

When’s the last time you kissed dad in public? Here’s

your chance to do it in a note to him on father’s day.

Get mushy. The mushier, the better. Write him a poem.

Or quote him a poem. Or write new lyrics about him

to a popular song. Recall a fond shared memory.

Sister and Brother

If your autistic brother or sister doesn’t write or

talk much, you can do it for him/her. Imagine if you

were your brother or sister, what would you say to dad?

Write dad a thank you note as if your brother or sister

were writing it. You can tell him how much YOU love

him,

too. Dad will love it, trust me.

All Other Family Members

You don’t have to wait until the funeral to say some

nice

things in public about the guy! Do it now, write down a

list and send it here where we can all read it and while

he's still alive to enjoy it (or at least correct the

record and point out what you’ve left out).

Email it here to

posting@...

It costs nothing, except for some love and words from the heart.

Please, no more than 100 words. Mail it in ASAP and we will publish it in a

special Father’s Day edition. He’ll remember this far longer than the tie

you bought him or the e-card you sent him.

* * *

Reader’s Posts

Seeking: An Asperger Employment Service. Only one I know about is in

Canada (www.anythingispossible.ca).

Also seeking: An Employment Service that caters to parents of disabled

children. Or a Career Counselor who understands the needs of parents of

disabled kids. Please send email to: Navarro54@... I live in Southern

California, east of Los Angeles

*******

We have just found very high levels of antimony (40 times higher than the

safe limit) in our 6 year old autistic son. Does anyone have any

information on detoxification of this metal? We would welcome any advice.

Please contact or Eden on rigby451@...

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Project Lifesaver: We use a small (wrist-watch size) transmitter to track

individuals with Autism, Downs Syndrome, Alzheimer's and Dementia, who tend

to wander away from their caregiver. From onset to completion, we can

rescue clients in as little as 16 minutes and return them safely! Website:

www.projectlifesaver.net Email: varanger@...

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>> Send your posting, no more than 60 words (more rejected) to

posting@..., no charge. FEAT may refuse or edit any post. <<

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