* I'd say over 80% of the folks I contacted for updated meeting info
this month either had a kid home sick OR were ill themselves! The other
20% probably got hit by the virus while this was in the mail. If YOU stayed
healthy do know that the rest of us are green - and it is not just with
envy! aaarruughhh!
_____________________________
Thanks to all of this month's contributing Newsletter Moms and Dads!
Anybody with news to share, deadline is more or less the third Monday ,
monthly, for the next issue.
JFS[email protected]
P.O. Box 5551
Elgin, IL 60121-5551
To subscribe to this snailmail version of AutismNews donate $15 for
12 issues, checks made out to "JFS". Extra donations to help send complimentary
copies to other first-time readers appreciated.
This is not written for profit - then it would
seem like WORK!!!!
To see our philosophy, other newletters, the methodology article, and
the new parent packet, go to:
www.autismnews.net
| All contents herein copyright 2001 by the Newsletter Mom. Freedom to recopy and share information fully granted as long as you credit the Autism Newsletter. Typos almost guaranteed this month thanks to a seven-year-old's proofreading skills not yet being what they could be. |
Multiple Meetings
Conferences - Workshops
Misc --(pizza?)
Parents
Shouldn't Place Blind Trust in Vaccine Mandates
The Mean Spirit of NBC's
ER Episode
Cure Autism Now Advances
Newsletter
Early Intervention Update
I Lobe to Laugh
CycleUSA
Disordered Metal-Metabolism:
A Primary Cause of Autism?
A Wee Bit More Regarding
TEACCH
March 1, Algonquin 7:30pm
Parent support group meets at Northwest Pediatric Therapy, 1320 Chase
St. Bram and/or Kim: 847/352-7678. Check out the BHARE Foundation web page
at www.bhare.org. Lots of useful info there.
March 5, Park Ridge 7:00pm
Parent-2-Parent for Special Students, a support group for all parents
of special needs students, meets at Maine Township Administration Building,
1700 Ballard Road. This month Donna Anderson, Director of Disabled Services
for Maine Twp., Chairperson of The North Suburban Council on Employment
for Persons with Disabilities (NSCEPD) and veteran of the Disabled Rights
Movement will discuss her experiences as a disabilities advocate over the
last 30+ years. Hear about the grassroots movement that lead to what we
now call ADA. Explore the evolution of the Disabilities Rights Movement;
what we've learned, what we've gained and where we need to go. Find out
what you can do to keep that evolution going. Learn about the services
available through Maine Township's Disabled Services. Eva: 847/699-1223,
email: [email protected]
March 6, Skokie
North Suburban ASI Chapter meets at Skokie Village Hall, 5127 W. Oakton
in the Lower Level Community Room. This month Carmen Gendel, LCSW, a private
practitioner specializing in the treatment of children with autism, will
speak on the importance of social skill development, improving peer interactions,
creating social opportunities and building age-appropriate leisure skills.
Michael: 847/541-9969 or email [email protected]
March 8 & 11, Freeport 6:00pm
Networking For Families will meet March 8 at St. Mary Catholic Church
(school building) 825 S. State Ave., where adults will hear from a speaker
TBA. Siblings age 8 and up have their separate support group (speaker TBA).
Child care is provided for younger kids and kids with special needs. March
11 - each group will enjoy open networking. Nancy: 815/235-7553.
March 8, Gurnee 7:00pm
(this group also meets March 20). Jennifer Bollero tonight will discuss
negotiating with school folks and preparing an effective IEP. Come to the
Warren Township Center (Southwest Corner of Washington and Almond Rds.)
PLEASE RSVP by March 5 to Eric at 847-543-4502. Pre-registration is required
as space is limited. There is a nominal $1.00 charge for members of ASA,
$5.00 for non-members (or you can register on the spot!)
March 9, Romeoville 6:30pm
Parent support group meets at R.C. Hill Elementary School, 616 Dalhart
Ave. Guest Speaker TBA (call Miki closer to meeting date to find out who
- or wait and be surprised!) Miki : 815/886-0080.
March 10, Rockford 10 - 11:30am
(note new time!!!) The Northwest Illinois Autism Support Group meets
at Children's Development Center, 650 N. Main. This month continues last
month's planning for the future of the group, also parent networking. Patty:
815/965-6745.
March 10, Hoffman Estates, 7 pm
NEW GROUP! Parents of daughters with Rett Syndrome invited to attend
this support group, which will meet at 1325 Chatsworth Lane. For more info
contact Paul at 847/310-8876, email: [email protected]
March 12, Chicago 6:00pm
Parent support group of Illinois Masonic meets at The Pediatric Development
Center, 3040 N. Wilton, 2nd fl. Kidkare is available IF you RSVP ASAP.
Wendy: 773/296-5677
March 13, Chicago 6:00pm
The ASI Metropolitan Chicago Chapter meets at the Easter Seal Therapeutic
Day School, ITT campus, 3424 S. State St. Grace: 773-233-4716 - NOTE I
could not confirm this date with Grace so do call her prior to attending.
March 13 , Wheaton 7:30pm
Advocacy 200 will meet at the Wheaton Community Center. Speaker to
be confirmed, but hope to have a district special needs coordinator. Brian:
630-690-6385
March 13, Peoria 6:30-8:00pm
Parent support group will meet at Faith Missionary Church, 1825 S.
Airport Rd. in Bartonville (close to Peoria) . Kris Wasik from Family Ties
will be on hand to discuss IDEA, IEPs, and ESY-(Extended School Year).
Child care provided by the supervised local high school key club. Contact:
Lauri Hislope 309-697-3300 or [email protected]
March 17, Chicago, 10:00am
Chicago South Side ASI chapter meets at the Hayes Park District Building,
2936 West 85th St. on Saturdays from 10 - 1. This month a speaker TBA will
discuss how parents can take care of THEMSELVES! Wanda: 815/469-5870
March 17, Villa Park 9am - noon
NOTE special day/time this month! Parent support group meets at DuPage
Easter Seals where Ken Moses, Clinical Psychologist, will discuss aspects
of parental grief upon learning one's child has a disability. He will also
discuss living with a disabled child. Limited on-site free kid-kare if
you rsvp asap - please call Sharon Pike at 630/620-4433. YOU MUST RSVP
for this meeting as seating is limited!
March 18, Oak Park 3-5 pm
Asperger/High-Functioning Autism Support Group meets at Pilgrim Congregational
Church, Lake St. & Scoville Ave. Debbie: 708/383-1209
March 19, Geneva 7:30pm
Special Needs Support Group now meets at Community Therapy Services,
2700 Keslinger Rd., suite B. (just west of Randall, past Delnor Hospital
on the south side of the road.) This month the popular Jennifer Bollero
will share some highlights and general principles from her HIGHLY regarded
workshops on negotiating and creating an effective IEP. Shelley Swanson:
630/208-8880
March 20, Elmhurst 6:45pm
Parent group meets at Center for Speech and Language Disorders, 195
W. Spangler, suite B. to hear Sara Knight, OTR/L discuss Sensory Integration
Therapy. Margie: 630/530-8551, ext. 108
March 20, Flossmoor, 7:00pm
Chicago South Suburban ASI Chapter meets at Flossmoor Community Church,
2218 Hutchinson. Marie: 708/206-0379.
March 20, Bolingbrook 7:00pm
Far West Suburban ASI meets at the Bolingbrook Medical Center. Speaker
TBA - name will be provided on the Chapter's voicemail : 630/969-1094.
March 20, Gurnee 7:00pm
Northeast ASI Chapter has invited Linda Preston to speaking on "sexuality
and special needs kids". Come to the Warren Township Center (Southwest
Corner of Washington and Almond Rds.) Eric: 847-543-4502
March 22, Oak Lawn 7:00pm
Parent support group meets at Hope Children Hospital, sw corner 93rd
& Kostner. NOTE I could not reach Amalia to confirm this date so call
her prior to attending at 708/346-1356
March 27, Schaumburg 7:30pm
Northwest Suburban ASI Chapter meets at the Township of Schaumburg
Meeting Hall, 25 Illinois Blvd., in Hoffman Estates. Randee : 847/884-9194.
River Forest
The Illinois Interdisciplinary Council will not meet until April 18.
Jane: 708-771-1918.
Hickory Hills
Support group will not meet this month. Druanne: 708/599-0098
Woodstock
This new support group may resume in March or April - call Amy at 815/337-1043
for info.
Naperville
This support group has folded due to lack of participation. Well, Bernie,
you tried : - (
Elgin
The support groups at Jayne Shover Easter Seals, 799 S. McLean
Blvd. are on long-term hold. Blame a cut in funding for family
support from $75,000 to $14,000 a year. This money had been coming from
I.D.H.S. and Early Intervention... but as we all know by now there was
a major budget muck-up by the E.I. folks, who underestimated need and didn't
ask for enough money last year to cover this year's expenses. Several folks
at my local Easter Seals have been laid off.... including the very nice
dad who has running all the support groups for the past three years for
parents of kids with Autism, Downs, etc. It is therefore not only the little
kids in 0 - 3 who will lose out when their services are cut - now their
families are losing some support too, - and some good folks their jobs
(bet the E.I. folks who mucked up the budget in the first place are still
employed! What do you think?) If any groups do get scheduled at this Easter
Seal in the future I will let you know (I am told every effort will be
made to keep the Father's Group running, as no once else has been specifically
targeting this group. )
I have a bit more on the Early Intervention crisis farther along in the newsletter.
NOTE - StarNet workshops give priority to parents living within their
region. If there is a workshop you wish to attend but it is not in your
region - let your local StarNet folks know (for example, parents living
in Region II could call the Region II office and yelp "Hey, StarNet IV
gets to hear Sandy Valentine - we want her too!").
****March 1, Western Springs
March 1, Carbondale
March 8 & 9, Glen Ellyn
March 9, Oak Park
***March 13, Elgin
"Relationships and Sex" is the topic that will be discussed
this evening at Center House, 737 Center St. This topic is appropriate
for parents of kids 12 years and older; whether or not to bring your budding
teen is up to you. Please call to reserve seating at 847/429-9675.
March 15, DesPlaines
Parent to Parent: Discovering Resources Within Yourself and
in Your Community to Better Meet Your Child's Special Needs
Debbie DePalma, Debbie Mercer & Pat Kluzik Stauch will help you
find the research, communication, advocacy and management skills that ARE
within you, and show you how to use them to help your child. Call StarNet
II at 847/803-3565.
March 16, Chicago
Sensory Processing and the Young Child
Jennifer Rosina, M.ED., OTR/L will discuss all aspects of sensory
processing, including techniques to modify and enhance the environment
for youngsters. For more info contact StarNet V at 773/553-3413
The Homestead,
8272 NE University Ave.
Runnells, IA 50237
phone: 515-967-4369
Email: [email protected]
****March 17, Oak Park
Liane Holliday Willey, an adult with Asperger's and author of Pretending
to be Normal will be at an event sponsored by Oak Park School District
97 from 9:00am - noon. Cost to attend is $15; call Dorothy Stewart at 708/524-3000
to request a registration form.
March 17, University Park
Early Childhood Annual Conference
Mostly aimed at teachers, etc of kids from birth through third grade.
For more info call 708/534-4487 and ask to be put on the mailing list for
a conference brochure.
****March 19, Evanston
TEACCH Conference. If you want to know more about this particular program
then call Kris Johnson at 847/412-5757 and request a conference flyer with
registration info about this all-day conference. Sponsored by The Howard
and Florence Leventhal Keshet Autism Training and Demonstration Center.
(see article below for
a few comments on TEACCH.)
March 23, Rockford
Legal and Future Care Planning for Your Relative with a Developmental
Disability
Theresa M. Varnet, M.S.W., J.D. Topics will include: Negotiating the
Social Security Maze; Preserving Eligibility for Government Benefits through
Proper Estate Planning; Special Needs Trusts; and more. Parent/Family Member:
$20.00, Professional: $40.00. The registration fee covers the cost of materials,
refreshments and lunch. Please contact The Arc of Illinois for a registration
form:
The Arc of Illinois 1820 Ridge Rd., #300 Homewood, IL 60430-1739 708/206-1930
****March 23 & 24, Lombard
The two day advanced workshop will follow the first day and will focus
on more advanced language training. The objectives of this workshop include:
Analyze a child's language skills, including language problems such as
echolalia, rote responding, and overcoming linguistic barriers using the
tools of behavior analysis and Skinner's (1957) book Verbal Behavior; Develop
intervention programs to teach RFFC, and intraverbal skills; Develop intervention
programs to teach multiple component tacts (e.g., subject-verb-noun), and
advanced tacting (e.g., prepositions, adjectives, feelings); Develop intervention
programs to teach manding for missing items, manding for information, and
manding to remove aversives; Develop intervention programs to teach social
interaction, classroom skills, and academic skills; Analyze instructional
decisions such as school placements, inclusion, DTT vs. NET, as well as
alternative treatments for autism.
Participants will receive a 75 page handout and a certificate of attendance.
Registration (I do not usually include this much info, but do not have a phone number to give you to call for it) must be postmarked by 3/26/2001:
One day beginning workshop fees:
____ $95 Workshop registration
____ $75 Special parent rate
____ $130 Two parents or members of the same family
____ $60 Student rate (Students must be enrolled in at least two college courses and submit a copy of their course schedule)
____Group rate $80 each for 5 or more persons (groups must be mailed together with a separate form for each person)
Two day advanced workshop fees:
____ $180 Workshop registration
____ $140 Special parent rate
____ $250 Two parents or members of the same family
____ $120 Student rate (Students must submit schedule)
____Group rate $160 each for 5 or more persons
All three days:
____ $250 Workshop registration
____ $180 Special parent rate
____ $290 Two parents or members of the same family
____ $165 Student rate (Students must submit schedule)
____Group rate $225 each for 5 or more persons
Send your name, address, affiliation, phone, email addie with payment. Make checks payable to Teaching Language Workshops, P.O. Box 21272, Concord, CA 94521-1272
****April 6, Skokie
See Metabolism article below
for more on what Walsh will talk about April 18.
****April 18 & 19, Itasca
The Arc of Illinois 51st Annual Convention.
While I do not yet have a conference brochure with details on this
if you contact the Arc of Illinois at 708/206-1930 they will mail you one
soon. Could be worth checking out - I know the Mothers From Hell 2 have
been offered a vendor booth so stop by and chat awhile!
This conference is being planned and sponsored by the dedicated parents of Autism Treatment Resources and the BHARE Foundation. Cost will be $100/person. For more information call Kimberly Hornstein at 847-352-7678 or register through the BHARE Foundation website: www.bhare.org
****April 27, Oak Park
Conducting Social Language Groups.
Sally Bligh, MCD, CCC-SLP, originator of social language groups
for children with AS/HFA, is holding a workshop on the above topic, limited
to 45 people. Call the Bligh Speech Therapy Center at 708/386-8971 for
more info.
April 27, Matteson
****May 15, Tinley Park
Temple Grandin, Ph.D. and adult with autism will discuss Living
with Autism. Janet Donahue will be mailing out brochures with more details
and registration information mid-March, so call her at 708/206-1930 if
you are not already on the mailing list of the ARC of Illinois and wish
to receive one.
****May 24- 25, St. Louis, Missouri
Autism 2001
Featuring Dr. Lianne Holiday Willey, Elizabeth Gerlach (one of the
founders of the original Mothers From Hell!), Carol Gray, Michelle Winner,
De Anne Hyatt-Foley, and a High-Functioning Panel. For more information,
call : 800/489-0727.
"We are a Naperville-area family with a four-year-old son with Asperger's
syndrome. We are trying to form a playgroup that would meet two or three
times a week. Our goal is to create a regular after-school playtime in
a home setting that combines spontaneous play with facilitated social interaction.
If you have a child with AS or similar condition and you think he or she
could benefit from such a group, please contact Alicia or Jorge at 630-305-3088
or [email protected]."
John Hicks, M.D. went to the last DAN! conference in San Diego and
has been said to be interested in treating kids with Autism Spectrum Disorders.
Several parents in the Chicago area have gone to Dr. Hicks and report that
they are quite happy with him. Dr. Hicks seems to be open-minded about
alternative treatment options, and follows the recent developments in the
general area of Autism research. He has two offices:
***********************************
241 Golf Mill Center suite 200
Niles, IL 60714
847/390-9070Center Street Square
15 Commerce Dr. suite 108
Grayslake, IL 60030
847/548-8777
The North Suburban ASI Chapter's 4th Annual Pizza Party will be held
on Sunday April 29, 2001, at the Leaning Tower YMCA, 6300 W. Touhy Ave.,
Niles, from 1:30 to 4:00 p.m. We will enjoy pizza in the "Oakwood Room"
and will then have access to the Y's "Mazing Kids" play facility. The cost
will again be only $15.00 for the entire family. Respite care will be provided.
Last year we had over 60 persons attend! The Pizza Party has really become
a fun event where everyone can feel comfortable, share ideas and learn
from one another. We are looking forward to an even larger group this year.
You won't want to miss this once a year event! Respond on or before April
25th so we know how many pizzas to order. Contact Michael at 847/541-9969
or email him [email protected] to RSVP and arrange to send him the $15.
AAUURGH! I had a misprint for the phone number of
in the newsletter last month! The rapidly aging Newsletter Mom just
ain't what she used to be. The correct phone number for
The Mothers From Hell 2 is: 815-362-5303.
By the way, as long as I am mentioning the Mothers, sweet little old
ladies that we are (not!), let me modestly mention how FUNNY and THOUGHT-PROVOKING
and CREATIVE and PRETTY DANG GOOD the Mother's quarterly publication is
- yes, I refer to The Brimstone Bulletin. The Spring 2001 issue
of which is fermenting in my computer right now! Quick - send in your $10
memberships and start your subscription with what looks to be a whiz-bang
issue! And while you have your checkbook out perhaps we can persuade you
to get your Father's Day shopping done early - we have cool Father From
Hell2 baseball caps (tan with logo,$10) and t-shirts ($20, cream with logo,
L, XL, XXL, XXXL) available in addition to our vast array of Motherly merchandise.
See the last page of the Brimstone for more info on merchandise and tiny
weeny pictures of our stuff; we also offer these goodies through our website:
www.mothersfromhell2.org
send your $10 check, made out to Mothers From Hell 2, to join us - today!
Mothers From Hell 2
P.O. Box 19
German Valley, IL 61039
The CDC has declared that the United States has been free from indigenous measles since 1998, and the only cases come in with immigrants. Vaccination is not effective in about 5 percent of children, so when there is a measles outbreak, most of the cases are among vaccinated children.
The researchers had to go back more than 10 years to find sufficient cases for the Colorado study and include a measles epidemic. If the researchers wanted to discuss current risks accurately, they should have focused on immigrants and ineffective vaccinations rather than on children whom they disdainfully call "exemptors."
It appears that the "experts" and the "authorities" won't be happy until
there is 100 percent compliance with vaccine mandates. The real purpose
of the report in JAMA seems to be to shame or scare the 1 percent to 2
percent of parents into not using a philosophical exemption and to induce
states to repeal this exemption.
The same issue of JAMA includes an editorial commenting on the study. It, too, is based on the premise that vaccine mandates are good, and it deplores criticisms of vaccines by parents, implying that their objections must be based on ignorance or misinformation.
But, buried in the JAMA editorial are some startling comments and revelations. Vaccine mandates go into effect in America in a procedure that evades accountability. The Food and Drug Administration first licenses the vaccine as safe; then the CDC's Advisory Committee on Immunization Practices recommends that the vaccine be given to all children; then state legislatures specify which vaccines and how many doses are required (or authorize a state health agency to do this).
JAMA absolves ACIP, CDC and the FDA from any accountability for the mandating of vaccines. The editorial says, "It is not the responsibility of these advisory bodies to determine which vaccines are mandated; that decision resides with the state."
In other words, state legislators take note. You should not mandate a vaccine just because the FDA licenses it or ACIP recommends it; you are responsible to make your own decisions and you cannot pass the buck to the FDA, ACIP or CDC.
So, why do ACIP and FDA so gratuitously recommend so many vaccines for
all children? JAMA's editorial reveals the answer: These recommendations
are monetary decisions masquerading as medical decisions. Here are JAMA's
words: "Since federal funding for vaccines is determined by the ACIP through
the Vaccines for Children program, whenever possible the ACIP should endorse
funding for vaccines that physicians and parents wish to administer." In
other words, the real purpose of ACIP and FDA recommendations is to release
federal funds to buy the vaccines from the manufacturers.
An investigation by Rep. Dan Burton, R-Ind., last year revealed many
conflicts of interest among those who sit on federal panels where they
can vote on the recommendations that trigger the federal funds. Many panelists
receive financial benefits from the vaccine manufacturers.
JAMA issues a stern caveat to the states: "All vaccines that are licensed
and recommended for use in children should not necessarily be legally mandated
for day care or school entry. Each state needs to assess each vaccine individually."
JAMA's warning continues: "States should determine whether the disease to be prevented by the vaccines is highly contagious, results in significant morbidity and mortality, and poses a major health problem to both the individual and the community."
It's obvious that these are not the criteria used by the ACIP and FDA
in their pronouncements about vaccines. Many states are now amending their
compulsory vaccination laws to add hepatitis B and chickenpox. An independent
assessment of these vaccines by a state is unlikely to conclude that they
meet the criteria set forth by JAMA. Burton should have more hearings to
expose the government's vaccine licensing/recommendation/mandate process.
Meanwhile, since the government's decision-making procedure is not only
defective but suspect, we need a philosophical exemption in every state
so that decisions can be made by
parents whose motive is the health of their children, not promoting
government purchases of vaccines.
Independent judgments by states and consumers might have helped to avoid
past blunders like the rotavirus vaccine embarrassment last year that caused
injuries and death to so many babies. At a minimum, a philosophical exemption
in every state would create a market demand for improvement of vaccines.
A mom on the on-line AutismNews list found the following in Dr. Mercola's February newsletter at www.mercola.com and shared it with us - now I pass it on to you snailmail readers:Are You a Mainstream Doctor Interested in Earning $20,000 to Confirm Your Vaccine Safety Convictions? - Jock Doubleday, president of the California nonprofit corporation Natural Woman, Natural Man, Inc., is offering $20,000 (U.S.) to the first medical doctor or pharmaceutical company CEO who publicly drinks a mixture of standard vaccine additive ingredients.
yum.
Commentary By Lenny Schafer
It is perhaps, the most overused cliche in medical television drama. The patient lies motionless on a platform in surgery or the emergency room surrounded by medical types in high drama. Everyone is racing to resuscitate a cardiac arrest. "Clear!" shouts the rescuer. Paddles are slapped down on the victim's chest. The lifeless body arch in response to the thumping sound of electricity supplied with a jolt. The pulse is checked. Nothing. Again, "Clear" is shouted and another jolt is hopefully applied, this time with some success. "I'm getting a pulse!" shouts a tech or nurse. Cautious sighs of relief are passed around to everyone in room, and also to the loved ones observing from a distance. Most of the time the viewer can guess whether the patient is going to make it or not depending on the context of the plot.On last February 15th's episode of NBC's ER, this cliche played out again with a handsome blond-hair, blue-eyed, nourished, four year old boy with morbid complications from measles. The mother explains that she intentionally did not have her children inoculated out of her concern over possible vaccine side effects. Autism is specifically mentioned. The boy gets his heart restarted, but he remains unconscious and motionless.
"Is he ok?" asks the frightened mother. "Yea, he's doing fine," the doctor sarcastically sneers back without looking at her. Portraying the mother as suburban and articulate highlights the contempt. This is not white trash operating from ignorance. No sir, this is one of those educated moms who gets her information on vaccines and autism from questionable sources on the Internet and not the family pediatrician. Every word of dialog that addresses the mother from that point on is expressed with utter contempt. The writers could have added the phrase Òyou stupid, irresponsible twitÓ to end of every sentence spoken to her. The boy dies shortly thereafter. You couldn't make it any more heavy handed without having the ER set morphing into a Smack Down Wrestling event.
Considering that this publication [FEAT news, not this AutismNews!!!] is the most-read, highest profile independent source of information on autism and vaccines on the Internet, the program's references are to you, our readers, and to us, the FEAT newsletter. We had a role in killing that beautiful, innocent little boy, is the implication.
The mean spiritedness of NBC's ER message can only add heat, not light to the public conversation now going on about the safety of vaccines. The desire for parents to make informed decisions about their children's health should be encourage, and not vilified with comic book theatrics like the ER production.
The autism community demonstrates every day its commitment to a fair handed and competent education of ourselves on the issue of vaccines and their safety.
With the incidence of autism being at its historical high, it is only a matter of time before someone close in the family of an ER writer or producer has an autistic child. It is only a matter of time before someone in the family of a programming executive at NBC gets autism. And when that happens we suggest that you avoid your own spin and theatrical productions; it won't help you much. We suggest you come here to get a balanced presentation of the facts on vaccines and autism.
When you come you will find a responsible commitment to the facts, and not theatrics and scare tactics, if you read this newsletter.You will find that we do not sneer sarcastically at families who suddenly find themselves with disasters like autism or any of the other possible side effects of vaccines, no matter where you come from, hometowns or Hollywood. We won't bash you - simply because at the least, you have now become one of us. It's just a matter of time.
Lenny Schafer [email protected]
Many viewer know that Anthony Edwards is a high-profile supporter of autism research and works closely with Cure Autism Now (CAN). Often it is asked, "Why didn't he say something to someone about this awful presentation of parents concerned about autism?" Jon Shestack of CAN provides following explanation of Edward's role:
"I have spoken with Anthony Edwards who did not agree nor endorse that storyline and was in fact distressed by the patronizing dismissal of family concerns about vaccine safety. Evidence of this is that Tony's, character, Dr. Green, did not participate in that story.The idea for the episode rests totally with John Wells who is the executive producer and creator of the show and who basically gets to do what he wants. That he was influenced by his pediatrician, the American Academy of Pediatricians, the National Institute of Child Health, and vaccine manufacturers is possible and even likely but totally beyond Tony's sphere of influence."
The premiere edition of the CAN newsletter Advances has been mailed.
If you are interested in receiving this and aren't already on our mailing
list, please contact Elizabeth Kilpatrick, Director of Development, at
CAN:
Cure Autism Now
5455 Wilshire Blvd. #715
L.A., CA 90036
[email protected]
From the Chicago Lawyers Committee for Civil Rights Under Law, Inc.
"We are writing to update you on the status of the Illinois Department of Human Services' efforts to change eligibility for the Early Intervention program from a 30% delay requirement to a 50% delay requirement, and to set-up a state program called ÒEarly Start.Ó From the moment ÒEarly StartÓ was conceived as the program that would absorb children with developmental delays from 30-49% who would no longer be eligible for EI services, the Department has never been up front about the true implications for families who find themselves in Early Start. First of all, there is no funding for Early Start, which means that no program actually exists. Second, if and when Early Start is funded, services will be capped, the types of services children receive will be limited, wait lists for services will be allowed, and there will be no due process protections for families who disagree with IDHS' decisions.
On January 30, 2001, one day prior to the date on which we were to appear in court seeking an emergency order to stop IDHS from eliminating services to EI infants and toddlers, IDHS entered into an agreement with us to stop the program changes for a 60 day period. While this a very important victory, it is only a preliminary one. We would not have succeeded in gaining the 60 day delay without your help. And the need for your help continues."
For more information contact: Amy Zimmerman at 312-630-9744 or [email protected]
.
Also check out the Parents of Special Angels website at:
www.posail.org
for more EI info.
_________
Here is a sample letter to the editor regarding the proposed
changes to the state's EI system that you can customize and send to your
local newspapers.
There is a section in the letter for you to personalize by talking
about your experiences as a parent or provider. If your newspaper has published
articles or editorials about Early Intervention, feel free to refer to
them in the letter. Include your name and phone number with the letter
so the editor can call you if there are any questions.
Sample letter to the editor
To the Editor:
[insert name of paper and address here]There are 12,000 Illinois children under age 3 with developmental delays or disabilities who rely on the state for crucial therapeutic services.
Unfortunately, the way those services are provided may soon change for many children who need help the most.
The Illinois Department of Human Services has proposed changing the state's Early Intervention (EI) system, which provides speech, physical and developmental therapies, nutritional and psychological services and other assistance to children ages birth to 3 with developmental delays and their families. The proposed two-tiered system would guarantee services to the most severely disabled children, but those with milder delays
would not be guaranteed services.Research shows that intervening early for children with mild and moderate delays can prevent these children from developing more serious delays.
Illinois clearly needs to continue to provide EI services to all children who need them.
As a parent {aunt, grandparent, neighbor, etc] of a child receiving [or who had received] EI services, I have found that (INSERT PERSONAL EXPERIENCES - if you do not have a child in EI refer to the many parents you know who DO).
The Department of Human Services, Gov. George Ryan and the Illinois Legislature should slow down and thoroughly examine the proposed changes to the EI system to ensure that no children are left behind and the projected cost savings are justified. Legislators also should convene hearings and approve legislation guaranteeing services to all children who qualify under the current definition.
Sincerely,
YOUR NAME
YOUR PHONE #
From the 1/21/01 Chicago Tribune:
"The next time someone doesn't get one of your jokes, maybe he or she is simply a little weak in the right frontal lobe just above the right eye. It turns out that region of the brain processes our sense of humor. Researchers at University of Rochester School of Medicine used magnetic resonance imaging (MRI) exams to analyze brain activity in 13 people when telling punch lines of jokes or showing them cartoons. If people judged a joke or cartoon humorous, the right frontal lobe was highly active. The study was presented at December's annual meeting of the Radiological Society of North America.
Previous research has indicated people with depression symptoms experience lower and abnormal activity in the right frontal lobes. This same region is associated with social and emotional judgment. The researchers speculated brain scans might someday be commonly used to assess patients with depression and mood disorders."
A son of a contributor must have his abnormal EEG activity more on the left than the right side of his frontal lobes. He has long had trouble processing auditory information, although after many treatments, he is getting better at talking. His sense of humor, however, is more than fine, and his laugh infectious. He understands a lot of social interactions. Last month, he tricked his kid sister into looking behind her, and as she did so, he swiped a desired toy away from her - then laughed at her dismay. Perhaps other boys on the spectrum who are even more verbal then our kid but have no sense of humor (Asperger's??) have their encephalopathies on the right side (this is a Newsletter Dad's own theory, however.)
Volunteers are still needed for CycleUSA. The Chicago stop will
be Sunday May 20th and there will be a rally at Daley Plaza from 2:00pm
- 4:00pm. Much needs to be done. The Cycle USA contacts and Co-Chairs in
Illinois are Arlene Blaha and Marie Amenta. Arlene has asked that you please
contact Marie for any OFFICIAL information or if you would like to help.
Marie Amenta, Chicago Leg Co-Chair CycleUSA
[email protected]
(708)206-0379
[This ran in FEAT on-line Dec. 20 of last year. Newsletter Dad heard William Walsh speak about this research at a support group in January and remains intrigued. Once this work is published - Walsh's website notes that Nature is considering it - it will be interesting to see if others can follow-up or replicate the following.]
Researchers in Naperville, Ill., have revealed findings that may
explain the cause of autism. Biochemist, William J. Walsh, Ph.D. and Physician,
Anjum Usman, M.D. presented their findings this fall concerning autistic
patients' abilities to metabolize metals at the 10th Annual HRI-Pfeiffer
Symposium. The Health Research Institute (HRI) has examined blood, urine,
and hair chemistries for 503 patients in the autism spectrum. The study
population was composed of patients diagnosed with (a) classical autism,
(b) Asperger's Syndrome, or (c) pervasive developmental disorder with autistic
tendencies. Metal-metabolism disorders of unusually high incidence and
severity were found in all three groups.
A total of 85 percent (N equals 428) exhibited severely elevated Cu/Zn [copper/zinc] ratios (see footnote at end of release) in blood, suggesting a disorder of metallothionein (MT), a short linear protein responsible for homeostasis of Cu and Zn. The severity of the Cu/Zn imbalance was far greater than that of any other population we have studied over the past 25 years. The average Cu/Zn ratio was 1.78 (N equals 428) compared to 1.15 in a normal population (N equals 87) tested over the same time frame.
An additional 6 percent of the population (N equals 30) exhibited a pyrrole disorder associated with severe zinc deficiency. These autistic pyrolurics exhibited an average urine kryptopyrrole level of 79 mcg/dl, the highest ever observed in a defined population. Severe zinc depletion can result in improper induction and functioning of MT.
The remaining study subjects (N equals 45) included patients who were taking aggressive zinc and B-6 therapy at the time of blood sampling, which could mask the presence of a Cu/Zn or pyrrole disorder. Careful analysis of the medical histories and chemistry data indicated that 499 of the 503 autistics exhibited evidence of a metal-metabolism disorder. We believe that the remaining 4 subjects may have been misdiagnosed.
Overall, more than 99 percent of the 503 autistic subjects exhibited clear evidence of a metal-metabolism disorder. This suggests that an inborn error of metal-metabolism may be a fundamental cause of autism. To examine this possibility, the expected consequences of a MT defect on child development was investigated.
In humans, the MT family is a group of four cysteine-rich metal binding proteins that are induced and regulated in response to metal toxicity, cellular stress, neuronal development, and inflammation. Examination of the primary functions of MT and recent studies
of MT-knockout mice indicate that the primary consequences of MT disorders in a newborn include:
1. Abnormal Cu and Zn levels in blood and hippocampus,The consequences of a MT dysfunction in a newborn are very similar to classic symptoms of autism, Aspergers syndrome, and PDD. For example, incomplete maturation of the G.I. tract could be responsible for the severe malabsorption and other digestive problems exhibited by most autistics. In another example, about 50 percent of the 503 autistic families in this study reported Òregressive autismÓ in which autism symptoms appeared in a normally developing child, soon after exposure to a toxic metal. We believe that regressive autism is caused by a genetic error of metal metabolism followed by victimization by a toxic metal in the first 30 months of life. After the age of 30 months, the brain and G.I. tract may be sufficiently mature to prevent the onset of autism.2. Impaired neuronal development, especially in the first 30 months of life, which could result in incomplete maturation of the G.I. tract and brain,
3. Absence of MT's protective detoxification of Cd [Cadmium], Pb [lead], Hg [mercury], and other heavy metals, resulting in greatly-increased vulnerability to these toxics, and
4. Impaired immune function.
In summary, these biochemical findings suggest that an inborn error of metal metabolism (perhaps a MT disorder) may be the primary cause of autism. We are presently engaged in an experimental investigation of metal-metabolism genetics in an attempt to identify the autism gene(s).
Footnote: Serum Cu (mcg/dL) and plasma Zn (mcg/dL) levels analyzed by LabCorp and Smith-Kline-Beecham.
for more info contact:
HRI - Pfeiffer Treatment Center
1804 Centre Point Circle, Suite 10, Naperville, IL 60563.
(630) 505-0300
The following is additional information a Newsletter Dad wrote
up for us from his notes taken when he heard Walsh speak in January.
This research implies that some children have a gene which does not permit them to remove mercury from their bodies and which impairs their immune system. The gene was latent and present in the population all along, but its effects could not be known until there was an environmental change. As the government mandated increased vaccines over the last 20 years, the amount of ethyl mercury injected into children during the first 30 months of life also increased. The effect of mercury poisoning during that period is different because the brain is still developing its neural network. A weakened immune system would also have trouble with the "whole cell" pertussis vaccine which was used in the 1990s. After 36 months, language has been sufficiently developed and the brain may be mature enough that it can sustain mercury poisoning without loss of language.Walsh also believes that HRI will identify the gene responsible for MT dysfunction within the year and is looking at location 16P. If HRI does identify the gene, they anticipate that all newborns will have a genetic test for the MT allele, just as they do with the PKU test. If the test is positive, those children would be protected from vaccines until age three. Meanwhile, vaccination compliance rates in the general population could increase since science will eliminate the uncertainty over which children will develop autism from vaccines and parents could be reassured of general vaccine safety.
MT dysfunction could also compromise the gastrointestinal tract, resulting in susceptibility to allergies and deficiencies in enzymes which break up casein and gluten. Walsh proposes normalizing the G.I. tract and balancing the chemistry to start rehabilitating the MT deficient patient.
HRI holds one of the world's largest databases of blood samples from autistic patients. If its findings can be replicated by others, such as AGRE, countless children may benefit.
(Blatant Newsletter Mom Editorializing!)
During some recent phone calls, parents of newly diagnosed and/or younger kids have asked me about the TEACCH program. It appears some school districts are sending parents to workshops, etc., that emphasize TEACCH. Sharing information with parents is well and good - and schools certainly should be paying for some parent training! Training for you, the parent, is one of the Related Services (see section 300.24 for the Federal Register) that should be on your child's IEP. BUT - I have been finding that most parents have not been offered training in, much less been told about, ABA (or any other therapy except TEACCH). Ideally, parent training should encompass more than just what the school district wants you to know; it should include training in the most effective, researched and documented educational methodologies. Parents obviously can not discuss methodology intelligently if they do not know of any aside from that chosen by their school district (see the AutismNews piece in the January newsletter concerning the right of parents to discuss methodology - it is also on our website www.autismnews.net). Is it possible that schools do not want parents to know about, and ask for, Applied Behavior Analysis, which continues to be the only therapeutic intervention for disorders on the autistic spectrum that has survived rigorous academic scrutiny? ABA strives to helps a child reach his or her potential and then some, with the ultimate goal of having the child able to learn and play and grow with his or her "typical" peers. TEACCH also aims to help a child fulfill his or her potential - but without assuming nor planning for that child to someday be a part of the "real world". ABA may not succeed in helping every child "recover" and function in the Òreal worldÓ - but if a therapy doesn't even aim for that goal you can be sure a kid won't reach it! Which goal do you want for your child? When you hear of successful examples of children no longer fitting the criteria for an autism diagnosis how many of them are kids who had an ABA program? Why are there no similar best outcome kids from TEACCH?
There are many useful elements that could be gleaned from TEACCH (fine motor skill work, including those that work on eye-hand coordination; gross motor work; self-help and life skills; use of schedules for kids as needed) but I would hesitate before making it the core element of ANY child's educational program. Part of TEACCH might make a good supplement to an ABA program in the above areas, as needed (in the same way that some folks use a bit of Floortime as an addition to their child's ABA program.) One home schooling mom of my acquaintance used enough of the TEACCH program in the areas of fine and gross motor, and eye-hand coordination, to forgo (more expensive) outside O.T. sessions.
What I have been recommending is that parents ask their school districts for some training on ABA, too - and that they look up TEACCH in Shirley Cohen's well-researched book Targeting Autism (found at all area libraries by this time - if not, ask Ôem to buy a copy!). I could tell them to look TEACCH up in the new edition of Michael Powers Children with Autism : A Parent's Guide, - but Powers doesn't mention TEACCH - the only therapy he found worth devoting space to was ABA.
To be fair, here is some info on TEACCH and ABA so you can read some
description of them both from a less impassioned point of view. If you
have access to Shirley Cohen's book Targeting Autism it provides far more
detail than what follows.
Parents of children who fall on the Autism Spectrum Disorder are frequently overwhelmed when confronted with the many the many treatment/educational approaches suggested for working with their children. The following is an explanation of some of the most widely used techniques. This list is not exhaustive. Some of these techniques are comprehensive programs, while others are designed to target a specific area of difficulty.There is little or no evidence to show that children with autism learn in group situations. Research findings indicate that children with autism learn only in one-on-one situations for approximately the first six months of treatment.
Discrete Trial Training (ABA)
Discrete trial training is based on applied behavior analysis principles. This method involves breaking down tasks into simple elements and teaching the child through repetition. An individualized program is designed for each child to that the child's specific strengths and weaknesses can be addressed. The goal of the program is to teach the child everything that is required of a normally developing child of the same age, so that the gap between the child's chronological and mental age can be narrowed or eliminated. The content of instruction includes speech and language skills, gross and fine motor skills, academic skills, self-care and social skills.
This program involves from 10 to 40 hours per week of one-to-one discrete trials. Play breaks of 20 to 30 minutes are included between each hour of work. Proponents of this treatment recommend that it start early in life and continue for a long period of time. The individual instruction is usually performed in the home, with trained psychologists assisting parents and "therapists" (trained professionals or paraprofessionals) in administering this program. The program emphasizes the importance of parents in following through with the treatment.
TEACCH: Treatment and Education of Autistic and
Communication Handicapped ChildrenTEACCH is a state funded public health program available in North Carolina, which provides services from the level of diagnosis and early counseling for parents and professionals to adult community based centers. Educational strategies are established individually on the basis of a detailed assessment of the person with autism's learning abilities, trying to identify potential for acquisitions rather than focusing on deficits. Educational programs are revised frequently, according to the child's maturation and progress.
A hallmark of the TEACCH program is to provide 'structured teaching.' This technique is based upon the observation that children with autism learn and integrate information differently than other children. Many noncompliant behaviors of children with autism are a result of their difficulty understanding what is expected of them. Structured teaching places heavy reliance upon teaching through visual modes due to difficulties that most children with autism have with processing verbal information. Visual structure is provided at many levels, such as organizing areas of the classroom, providing a daily schedule using pictures or written words, visual instructions and visual organization signaling the beginning and end of tasks. Successful education of the child with autism demands a continuum of services. A continuum of services can best be conceived by covering a wide range of different approaches and different sites for children within the same age group.Such a structured teaching system helps the child with autism
* Understand expectations
* Remain calm
* Focus on relevant information through visual cueing
* Achieve independence for tasks
* Manage behavior