From the

FEAT DAILY ONLINE NEWSLETTER 

FINICKY FOOD FIXER: A number of folks have requested Len Levin's telephone number reports Catherine Johnson: Len is the ABA specialist who developed a treatment program for food selectivity in children with autism. (My sense is that his program would work just fine for NT kids, too, though I didn't think to ask him about this when he spoke at Millwood.) He defines food selectivity as a child's eating fewer than 5 foods (it may have been 7 -- I've forgotten) **excluding** junk food. The program takes one year of daily 45-minute sessions, at which point the child should be eating 12 foods excluding junk food, and be able to eat a restaurant without the parents having to bring along special foods. Len is at the Alpine Learning Group in New Jersey (footnote: for those of you who don't know, Alpine Learning Group is the ABA school where Bridget Taylor, famed therapist to the children of Catherine Maurice, works). I've been given two telephone numbers: (201) 261-4555 and (201) 612-7800.


Web Links

 

-National Respite Locator Service
http://www.chtop.com/locator.htm
-Latitudes -
a newsletter about alternative treatments for Tourette's, ADHD, hyperactivity, and autism:
http://www.latitudes.org/index.html


How Moms of Special Kids are Chosen
by Erma Bombeck
First published in 1980

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. "Armstrong, Beth - son; patron saint - Matthew. Forrest, Marjorie -daughter; patron saint - Cecilia. Rudledge, Carrie - twins; patron saint - give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she the patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today; she had that feeling of self and independence that is so rare and necessary in a mother. You see the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child she will see it as few people ever see my creation. I will permit her to see clearly the things I see -- ignorance, cruelty, prejudice -- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel.

God smiles, "A mirror will suffice."


Surgeon General and Parents of
Vaccine Injured Children to Voice Concerns At House Government
Reform Committee Hearing

WASHINGTON, July 29 /PRNewswire/ --
The Surgeon will join parents of vaccine injured children, scientists and physicians in testifying at a Tuesday, August 3 hearing entitled "Vaccines: Finding a Balance Between Public Safety and Personal Choice" called by Congressman Dan Burton (R-IN), chairman of the U.S. House Government Reform Committee.

The hearing, which will be held at 2 p.m. in Rayburn House Office Building, Room 2154, Independence and S. Capitol Streets will include sworn testimony
from David Satcher, M.D., Surgeon General and Assistant Secretary of Health as well as parents of vaccine injured children voicing concerns about vaccine risks. Panelists will include Rick Rollens, a California father whose son became autistic following DPT and MMR vaccine reactions and Michelle Clements, a Milwaukee mother, whose son is severely brain injured from a DPT vaccine reaction and was denied compensation under the federal vaccine injury compensation program. A mother who was exposed to rubella during pregnancy and gave birth to a severely retarded baby will talk about how difficult it is to care for a profoundly brain injured adult child.

Boston pediatric neurologist Marcel Kindsbourne, M.D., and Ronald Kennedy, Ph.D., Professor of Microbiology and Immunology at University of Oklahoma, will discuss vaccines, chronic illness and scientific research into vaccine adverse events. "Parents of vaccine injured children have been crying in the wilderness for a long time," said NVIC President Barbara Loe Fisher. "The fact that Congressman Burton is taking a hard look at the reported links between vaccination and immune and neurological dysfunction in our children is a clear sign that Congress is listening. Vaccine reactions are becoming so common that everyone knows someone who has had one. It is time for the denial from public health officials to stop and meaningful scientific research to begin," she said.

Two subcommittees under the House Government Reform Committee have held hearings on vaccine safety issues. The subcommittee on National Security, Veterans Affairs and International Relations, chaired by Congressman Christopher Shays (R-CT) has held four hearings on anthrax vaccine risks and the subcommittee on Criminal Justice, Drug Policy and Human Resources, chaired by Congressman Dan Mica (R-FL), held a May 18 hearing on hepatitis B vaccine risks.

The National Vaccine Information Center, founded by parents of vaccine injured children in 1982, is a non-profit, educational organization dedicated to preventing vaccine injuries and deaths through public education. The organization's co-founders worked with Congress in the early 1980's to develop and pass the National Childhood Vaccine Injury Act of 1986. For more information, go to http://www.909shot.com or call 703-938-0342.


The Special Ed Advocate
The Online Newsletter About
Special Education and the Law
http://www.wrightslaw.com

 

Summer Assignment for Parents

School is stressful for most kids with disabilities. Parents feel the stress too. By Spring, many parents and children are counting the days - and hours - until school ends for the summer.

School related pressure is off. Maybe the problems will go away next year.

Not Yet! Here is your Summer To Do List.

**Join Disabilities Organizations**

In workshops and seminars about
"How to Advocate for Your Special Ed Child," we tell parents that they need to join three disabilities organizations for one year.

 

Why do we make this recommendation? All of the disabilities groups - the International Dyslexia Association, the Learning Disabilities Association of America (LDAA), Children and Adults with Attention Deficit Disorder (CHADD), National Attention Deficit Disorder Association, the Alexander Graham Bell Association for the Deaf, the National Tourette Syndrome Association, the Autism Society, and others publish informative newsletters for their members.

These newsletters are an excellent source of information about advocacy, special education, and medical and legal issues. When parents join these groups - and read those newsletters - they learn new ways to help their children.

**Organize Your Child's File**

Do you have a complete copy of your child's entire file? Are all the documents filed in reverse chronological order?

 

Very few parents have a complete copy of their child's file. Because special education generates so much paper, many parents toss documents into cardboard boxes or bags. When you do this, you will not be able to find what you need!

First, get copies of all evaluations, IEPs, correspondence, medical reports, and other information. For more information about how to do this read the "Crisis! Emergency! HELP!" article in the Advocacy Library at http://www.wrightslaw.com.You are entitled to a complete copy of your child's file from the school. The school may charge a "reasonable" photocopying fee. Organize your child's file in chronological order. File all documents in reverse order. When you finish, the oldest document will be on top, most recent document will be at the end.

**Learn How to Measure Educational Progress**

Do you know if your child is benefiting from special education? Is your child making progress? Is the child falling further behind? Do you have objective evidence to support your position?

 

Read our article "Understanding Tests and Measurements." The article is available on our website. (To master this information, you need to read this article several times.) http://www.wrightslaw.com/advoc/articles/tests_measurements.html

**Chart Out Your Child's Test Scores**

You need to chart out your child's test scores. If you use a spreadsheet program like MS Excel, it is easier. After you plug in your child's test scores, you can make charts of your child's progress or lack of progress.

 

Here is a link to a short slide show about charting educational progress: http://www.wrightslaw.com/advoc/articles/slideindex_files/frame.htm  
TIP: Use the Wizard in your software program to help you create graphs of educational progress.
(if the above link isn't there go to http://www.wrightslaw.com/ and run a search for tests)

**Learn to Touch - Type**

If your child has a disability, the child needs to learn to touch type.

The process of writing by hand (or handwriting) is extremely difficult for most children with disabilities. One neurologist told us "Writing is the most complicated neurological process that a human being must learn."

Children learn from their parents. If you "hunt and peck," do you think your child will want to learn how to touch type? Of course not.

When you use a typing software program like "Mavis Beacon Teaching Typing" 5 to 10 minutes a day, 3 times a day, you will be typing 20 - 30 words a minute in about three months.

If you hunt and peck, your goal it to touch type at 30 wpm or more by the end of the summer. If you are learning how to touch type, you can expect and require your children to learn too.

After a week or two, they will begin to compete with you - and will try to increase their speed over yours.

Your children will thank you for being such a great role model - in about 10 years!

**Become an Educated Consumer**

During the summer, continue to check web sites for educational and legal information. In addition to Wrightslaw site and the Special Ed Advocate newsletter, visit LD Online at
http://www.ldonline.org and EdLaw at http://www.edlaw.net

 

Monitor your home state's Department of Education website. You may be surprised at the interesting information you can pick up.



The Special Ed Advocate is a free online newsletter about special education legal issues, cases, tactics and strategy, effective educational methods, and Internet links. We publish this newsletter occasionally, when time permits. Back issues of The Special Ed Advocate are archived at our web site - http://www.wrightslaw.com

 

As a subscriber to The Special Ed Advocate, you will receive announcements and "alerts" about new cases and other events.

CONTACT INFORMATION: Pete and Pam Wright, c/o The Special Ed Advocate, P.O. Box 1008, Deltaville, VA 23043
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