FW: When Your Brother is Different/ Cape Cod Mother Leads Charge

[Guest guest]

When Your Brother is Different/ Cape Cod Mother Leads Charge

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

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

______________________________________________________

April 15, 2001 Search www.feat.org/search/news.asp

Also: * Cape Cod Mother Leads Charge To Limit Controls On

Handicapped Students

* Autistic Child's Communication Device Stolen

* 33 States Sign on for Autism Awareness Month

When Your Brother Is Different

Siblings of disabled children face their own challenges

[by Norman T. Berlinger - New York Times.]

http://www.kcstar.com:80/item/pages/printer.pat,fyi/3acc963f.411,.html

Twelve-year-old Weiner does not want to admit it, but he did

not want to sit next to his brother, , in Sunday school recently

because it embarrassed him. was not embarrassed because is

three years younger. He was embarrassed because is autistic.

" There were some children in the class who hadn't met yet, "

Weiner, their mother, said. " This was 's involuntary

introduction of his brother to those children. didn't want to be

's caretaker, and he didn't want to be associated with him.”

said, " I love my brother the same no matter what he is. " But

's disabled brother can be unpredictable.

It is hard enough being a new adolescent, like . It is even

harder when a new adolescent is different because of a developmentally

disabled brother or sister at home.

" You want to be like everyone else, and you're not, " said Kay

McGuire, director of the Sibling Support Program at the Advocate Illinois

Masonic Medical Center. McGuire runs the only support program in Chicago for

healthy children with developmentally disabled siblings, including

adolescents like .

But only a tiny percentage of children with disabled siblings make

their way to a support group, and few are of junior high school age.

For many of them, bringing a new friend home to meet the disabled

child is the hardest part of it all, McGuire says.

" It becomes a sorting process, " she said of making friends. The ones

who are nice to the disabled child or who do not make fun are kept. " The

ones who don't hit the family's benchmark are discarded and not invited

back. At about 4 years of age, the teasing starts and lasts until high

school.”

The normal child hears the sibling called names.

" Eight-year-olds get embarrassed easily, " McGuire said. " When these

kids get to be 11 or 12, it gets rough and stays rough.”

Young teen-agers also can get embarrassed by the appearance of a

brother or sister with cerebral palsy or by the sometimes immature behavior

of a sibling with Down syndrome.

And autistic siblings may have odd mannerisms, McGuire said. They

might flick their fingers in front of their faces. Or they might shout " no,

no, no, no”

when someone touches something of theirs. 's brother often

recites long stretches of dialogue from television commercials.

" There's no question that teen-agers love the disabled sibling

deeply, " said Carol Rolland, a developmental psychologist at Advocate

Illinois Masonic. The teen-ager's love often manifests itself in providing

care for the sibling, but in the extreme this may interfere with the

teen-ager's own development and formation of an identity.

" Instead of becoming themselves by trying on new lifestyles, they may

take on the identity of the parents, " Rolland said.

" We know a couple of boys where this was a serious issue. They became

`parentified' and would even dress in more mature clothes that were not

typical of their age group, " Rolland added.

Girls also may get turned into surrogate mothers and become

preoccupied with helping out.

Ariceliz is almost 13 and attends the support group on

Wednesdays with . Her brother, Harry, was born with a rare metabolic

disorder called nonketotic glycinemia. Harry is developmentally delayed and

hyperactive.

Ariceliz recites a litany of things she does for Harry. " I help him

write and in speaking, " she said. " He can't pronounce words very well. He

can't say his name right. Sometimes he says his name like `Hoppy.' I help

him tie his shoes and put on his coat. I help him every day after I finish

my homework. He plays with me most of the time. I watch him on weekends when

my mom helps my dad outside cleaning the garage or fixing the car.”

" She jumps in there, " said Cruz, the children's mother. " She

attends his needs. Actually, Ariceliz is a mother to Harry.”

The normal children are called " shadow siblings " because the disabled

child occupies the center of the family. Growing up at the periphery does

not help identity formation either.

" The achievements of the disabled child get well applauded but are

expectations for the normal child, " McGuire said.

Weiner, recalling one way she had shortchanged her family's

normal child, said: " I caught myself assuming could do his homework

on his own. I should have said, `I want to see your work sheet on long

division.' “

No one sees them as people in need because the problems of the

disabled child have been attended to, Rolland said.

McGuire knows personally how all this can feel and what might help.

When she was 8, her 5-year-old sister was mentally disabled by encephalitis.

" Just sitting around a table isn't going to do it, " said McGuire, who

plans to use recreational activities to break down the isolation these

children feel and to help them form networks with other children. " We will

be highlighting the normal kids because they are important. This isn't often

done in the family.”

Conveying medical and genetic information about the disability is also

crucial. Some parents find it painful to talk about, so the healthy child

stays poorly informed. Some parents will even deny the disability to their

other children.

The medical information can offer a good way to introduce a friend to

the disabled sibling. " They can prepare their friend ahead of time, " McGuire

said. " We'll give these kids a script if we can.”

Parents want and need to believe that 12-year-olds are not thinking

about sexuality and reproduction, Rolland said. " But they've been thinking

about it for two or three years already.”

And medical information will serve to answer questions often unspoken:

" Is there something wrong with my body that I'm not aware of? " Or, " If I get

married and have a child, would my child be disabled, too?”

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the FEAT Daily Newsletter.

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

* * *

Cape Cod Mother Leads Charge To Limit Controls On Handicapped Students

By K.C. Myers

http://www.capecodonline.com/cctimes/archives/2001/feb/27/capemother27.htm

Teachers said Abigail Bowden was unruly. She smeared feces, ripped

papers, slapped and pinched.

To make her stop, the teachers pushed her on the ground face first,

pulled her arms behind her back and sat on the 64-pound, 10-year-old

autistic child.

They restrained her that way 10 times in one day.

Educators said it was a last resort. But Abigail's mother, Marstons

Mills resident Bowden, calls it abuse.

She and Lyon, another parent of an autistic child, are now

suing the Barnstable school system for restraining their children while they

were enrolled in a program for severely developmentally delayed students at

Centerville Elementary School.

And today Bowden will be present when the state Board of Education

votes on proposed new regulations limiting the use of classroom restraints.

Attorney W. , of n, described in the Barnstable

suit how teacher M. O'Connor and Marcia J. Bear, an instructional

aide, physically punished Abigail, who at the time had the mental

capabilities of a toddler.

Lyon's child attended the program in 1996, and Abigail attended in

1997 and 1998.

" Abigail was repeatedly mistreated by O'Connor and Bear, where one or

the other would force Abigail to the floor and restrain her when they were

dissatisfied with her behavior, " stated in a letter to Barnstable

schools Supt. Dever. " Bear or O'Connor would then cross Abigail's

arms behind her back and then Bear or O'Connor would get on top of Abigail

and apply pressure using their weight and at times, put a knee on her spine

or buttocks and put pressure on her causing her great pain. "

A horrifying video

Bowden told the Cape Cod Times in 1999 that she had no idea this was

happening to her daughter. She became horrified after watching a video made

of her daughter's classroom experience. The video was made at the request of

Abigail's neuropsychiatrist, who wanted to see her behavioral problems and

their possible cause.

After viewing the tapes, Bowden had no doubt her daughter's condition was

made worse by her treatment during the school day.

She called the restraint techniques " bizarre and barbaric. "

" They were making her aggressive, " she said.

Bowden took her daughter out the school. Now 13, Abigail attends the

Boston Higashi School, a residential program that costs $87,000 a year. The

state and school district split the cost.

Lyons attends Archway Inc. in Leicester.

Trained in restraint

Shillinglaw, former director of special needs for Barnstable

schools, told the Times in 1999 that O'Connor had followed meticulous charts

on the use of restraints and was trained by the May Institute in Chatham. He

said O'Connor, who continues to work at the school, counted 140 times in a

single day that Abigail became aggressive.

Since then, Barnstable continues to use restraints " when there is no

other alternative or if the child is in danger of hurting himself or

others, " said Barnstable School Supt. Dever.

Most Cape schools have sent teachers for training in the use of

restraints as well, said Walter Healey, director of the Cape Cod

Collaborative, which offers programs for disabled students.

Bowden told her story to Court TV's " Pros and Cons " last January and

to " Hard Copy " in May 1999.

She testified before the state Board of Education when the board

formulated the regulations on which it is to vote today.

Bowden does not think the rules go far enough.

The new regulations allow the use of padded ties, restrictive blankets

and tapes, as well as medication and floor restraints, such as the one used

on Abigail. But the regulations prohibit restraints for disciplinary

reasons, and

allow them only when a student " poses a serious threat of injury to

themselves and others. "

Bowden, and other parents of disabled students, hoped the floor

restraints would be banned.

'Teachers get a bad rap'

, the Americans with Disabilities Act coordinator for the

Cape Organization for the Rights of Disabled, said her own 13-year-old son

is in the special education program in Yarmouth. He has a heart condition.

Certain medications could kill him. Because of his heart, if he is tied or

taken down, he could be seriously injured.

" He has a sensory disability, " said. " For him the stickiness of

a Band-Aid would bother him to no end. Certain textures he cannot tolerate.

He cannot eat crunchy food. You start taping or tying him down, and it won't

stop the behavior, it will make it a lot worse. "

Restraints are not used in Yarmouth's program as far she knows, she

said.

But most schools have been trained to restrain students by Patty

Steele, a consultant for the Cape Cod Collaborative.

Steele said she does not teach or recommend floor restraints.

Sometimes, however, they are practically unavoidable, she said.

" I feel bad because teachers are getting a bad rap. Without being a

classroom teacher, it's really hard to judge how one teacher handles a

student. "

She said the proposed state law mimics what she herself recommends and

teaches.

But it's a law requiring a ton of documentation, paperwork and

detailed attention to rules. And when a child is out of control, rules can

be hard to follow.

* * *

Autistic Child's Communication Device Stolen

http://dailynews.yahoo.com/htx/wisc/20010413/lo/367815_1.html

Madison, Wisconsin Police officers are trying to figure out who would

steal an autistic child's only means of communicating with others.

The theft occurred when the 11-year-old student was working with an

aide at Huegel Elementary School on March 29.The communication device is

about 8 by 7 inches with a color display.

The device, which looks like a small computer, is valued at $7,000. It

is called a DynaMyte DSS Augmentative Communication Device, and is

approximately 8 inches wide and 7 inches tall. It also has a color LCD

display.

The device speaks a word that is indicated by a picture that the user

touches on the screen. The victim's mother said that it took her more than a

year to obtain the device and at least another six months to program it.

" The loss of this device has been very, very difficult for the victim

and his family, " police said in an online report. Anyone with information as

to the whereabouts of the device should contact Crimestoppers at (608)

266-6014.

Unlocking Autism is pleased to announce that we have 33 states

.. . .and one foreign country participating in the first Power of ONE!

Conference!

Will " U " be there?

Look below to see if your state will be represented!

And if it is represented, will there be just one person there or will

there be a team working to come home and get things going faster in your own

state?

Will " U " rely on one person to come up with all the ideas for your

state or will you participate?

Will your state move forward faster because it had more people attend?

Only " U " know the answer to these questions!

The doors are closing fast on this opportunity!

In order to stay at the host hotel and receive a special conference

rate for

your room, you must be registered by 5pm, e.s.t, Tuesday, April 17th, 2001.

Visit our website today at www.unlockingautism.org for more

information!

Be part of The Power of ONE! and learn how " U " personally can make a

difference not only for the person " U " love with autism, but for your entire

state!

States Participating:

Massachusetts, Rhode Island, New Hampshire, Vermont, Connecticut, New York,

Pennsylvania, Washington, DC, Virginia, land, North Carolina, South

Carolina, Georgia, Florida, Alabama, Tennessee, Michigan, Mississippi,

Kentucky, Ohio, Indiana, Wisconsin, Minnesota, Illinois, Missouri,

Louisiana,

Oklahoma, Texas, Arizona, California, Hawaii, Oregon, Washington

____________________________________________________________________________

__________________________________

Lenny Schafer, Editor PhD Ron Sleith Kay Stammers

Editor@... Unsubscribe: FEATNews-signoff-request@...

CALENDAR OF EVENTS submissions to Guppy events@...