A year ago I was able to brag that the AutismNews on-line list for parents was a year old and 113 members strong. This year, the now-toddler aged list has 167 members! If you would like to join the AutismNews list to be able to network with other parents of similar kids in Illinois (and also receive news and information that evades this monthly newsletter) just zap me a request to join the list at fishstep@autismnews.net You do not have to subscribe to this snailmail newsletter to join the list! It is free, and as useful as we all make it.
JFS
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!!!!
| 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. Any typos that evaded my eagle eye (and spell checker) are on their own - I disown them! |
June 4, Park Ridge 7:00pm
Parent-2-Parent for Special Students meets at the Maine Twp. Admin.
Bldg. , 1700 Ballard Road, Park Ridge. We are a support/advocacy group
for all concerned about students with disabilities. This month we will
focus on group concerns as well as networking. Eva: 847/699-1223, email:
SpecEdparents@aol.com
June 5, Skokie 7:00pm
North Suburban ASI Chapter meets at Skokie Village Hall, 5127 W. Oakton
in the Lower Level Community Room. This month, Diane Gould, LCSW, a long
time friend to our chapter, will discus issues that effect siblings of
those with Autism Spectrum Disorder. She will also discuss her roll as
Director of Special Services at the Jewish Council for Youth Services and
Camp Red Leaf in Ingleside, IL. The audience will be given effective strategies
on how to support these siblings and advice on starting support programs.
Michael: 847/541-9969 or email NorSubAsi@aol.com
June 9 , Rockford 9:30 - 11:30am
The Northwest Illinois Autism Support Group meets at Children's Development
Center, 650 N. Main.. Come learn about Adult Living Options and Transitions.
Patty Hobbs: 815/965-6745.
June 10?
Wonder about NIDS and Goldberg? Local families using Dr. Goldberg and
those interested in learning more - there will be a parent meeting June
10 (probably) call Warren A. at 847/742-2713 for location /time and to
confirm date.
June 11, Chicago 6:00pm
Parent support group of Illinois Masonic meets at The Pediatric Development
Center, 3040 N. Wilton, 2nd fl. This month's topic is "How to Set-Up Your
Home to be Visually Supportive for the Child with Autism." Kidkare is available
IF you RSVP ASAP. Wendy: 773/296-5677.
June 11, Peoria 6:30-8:00pm
Parent support group will meet at Faith Missionary Church, 1825 S.
Airport Rd. in Bartonville (close to Peoria) . This month members will
speak to our group about their 30-year-old son Josh. Josh is autistic,
lives independently in Chicago and works for the EPA cataloging their library.
Josh's mom will speak about how it was to try to get appropriate services
in district 150 without IDEA 1997 and FAPE. She will have some video of
her son. Contact: Lauri Hislope 309-697-3300 or chilope@juno.com
June 12, Villa Park 7:00pm
Parent support group meets at DuPage Easter Seals . Limited on-site
free kid-kare if you rsvp asap - please call Sharon Pike at 630/620-4433.
June 14, Algonquin, 7:30
Parent support group meets at Northwest Pediatric Therapy, 1320 Chase
St. Kim: 847/352-7678.
June 16, Chicago, 10:00am
Chicago South Side ASI chapter meets at the Hayes Park District Building,
2936 West 85th St. from 10 - 1.There will be several attorneys on hand
this month to discuss Estate Planning for Your Special Needs Child. Wanda:
815/469-5870
June 19, Bolingbrook 7:00pm
Far West Suburban ASI meets at the Bolingbrook Medical Center to learn
about Auditory Integration Training from practitioner Sharon Hurst. 630/969-1094.
June 19, Elgin 7:00pm
Easter Seals Jayne Shover Center is pleased to be able to offer an
occasional parent meeting - tonight attendees will learn about "How to
Plan for the Financial Future of Your Child with Special Needs" from Allison
Goldsmith of the Specialist Division of Estate Planning for Special Kids/Met
Life Financial Services. Come to 799 S. McLean Blvd, Elgin. For more info:
Chris Fredericks: 847/742-3264 x. 123. NO KIDKARE : - (
June 19, Flossmoor, 7:00pm
Chicago South Suburban ASI Chapter meets at Flossmoor Community Church,
2218 Hutchinson. New parents have a chance to network at 7:00pm; meeting
proper begins at 7:30 with discussion of "How to Survive Summer Vacation"
and a business meeting. Marie: 708/206-0379.
June 19, Gurnee 7:00pm
Come to the Warren Township Center (Southwest Corner of Washington
and Almond Rds.) to hear Betsy Prohaska present info on the GFCF diet.
She'll have her new book and video about the diet for sale, too. Eric:
847-543-4502.
June 23?? OR 30???, Chicago 10:00am - 1:00pm
The ASI Metropolitan Chicago Chapter is arranging with Betsy Prohaska
to have a seminar on the GFCF Diet at the Whole Foods store in downtown
Chicago! The exact date had not been finalized as I "put the newsletter
to bed" so please call Grace: 773/233-4716 or Betsy:847/854-6601 yourself.
June 25, Geneva 7:30pm
Parent support group will meet at either Community Therapy Services,
2700 Keslinger Rd., or the Chronicle Building on Randall - please call
to find out which site, or check the CTS website; www.commtx.com Shelley
Swanson:630/208-8880
June 28, Oak Lawn 7:00pm
Parent support group meets at Hope Children Hospital, sw corner 93rd
& Kostner. Amalia: 708/346-1356
June 26, 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.
Oak Park
Asperger/High-Functioning Autism Support Group
not meeting this June, but MAY have a family outing June 24th - please
call in a week or so for more info. Debbie: 708/383-1209
Hoffman Estates
Parents of daughters with Rett Syndrome know that there will be a picnic
this month. Contact Paul at 847/310-8876, email: PJochim@aol.com. or go
to : www.RettIllinois.org
Wheaton
Advocacy 200 not meeting this month. Brian: 630/690-6385 or 630/462-1980
Elmhurst
Parent group taking the summer off. Margie: 630/530-8551, ext. 108
(ignore print version that said they were meeting - I got this update after
my trip to Copymax!)
Freeport
Networking For Families will take some time off to look for a new "home".
If you need info about this group or have an idea where they could meet
call Nancy: 815/235-7553.
River Forest
The Illinois Interdisciplinary Council will not meet this month. Yes,
they will eventually meet. Jane: 708-771-1918.
Romeoville
This group not meeting in June BUT has a family picnic planned for
July 1st! Call Miki at 815/886-0080 for the details if you are not on her
mailing list already.
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 (parents living in Region V could call the Region V office and yelp "Hey, StarNet VI gets Steve Goodman - we want him too!").
****June 6, Oak Brook
"Partnering for Respite"
Illinois Respite Coalition has organized a day for national leaders,
Illinois providers, families, and advocates to work together to improve
the system of respite care throughout Illinois. Come learn more about respite
care, and how YOU can help us get more of it here! This event will be held
at The Oak Brook Park District 1450 Forest Gate Road, Oak Brook, from 9:00
to 4:00. R.S.V .P .to: Child Care Association of Illinois: (217) 528-4409
****June 16, Chicago
"How to Toilet Train ANY Child"
Alice Belgrade (M.S.Ed., L.C.P.C.) presents this workshop that will
help you identify they type of "toileter" you have, and what methods to
apply to achieve dry success! Call 773/777-2121 for more info.
June 19, Schaumburg
"An Overview of Sensory Integration from Occupational Therapy to Home
and Community"
Colleen Patton, OTR/L & Dawn Zibricky, RN, MS, CSN present an overview
designed to help you understand what may be causing varied sensory problems.
Strategies to help your child will be emphasized. For more info call StarNet
II at 847/803-3565 (This workshop will be repeated in Tinley Park 7/31.)
July 10 & 11, Springfield
"Kids: Our Future" is the moniker for this year's Summer Institute
sponsored by Project Choices. Ginny Cooke and Bob Farley will discuss "Parents
as Partners and A Legal Perspective on Parent's Rights"; other speakers
will cover topics as diverse as "Successful High School Inclusion: Strategies
that Work"; "Differentiated Instruction"; "Forrest Gump and Multiple Intelligences";
Sensory Integration Principles in the Classroom", and many others. For
more information contact Project Choices at 630/778-4508, or check their
website at:
www.projectchoices.org
****July 18 - 19, Peoria
"PECS (Picture Exchange Communication System) Workshop"
Lori Frost & Diana Black present this two-full-day PECS workshop,
sponsored by Mid Central Association. Cost for non-MCA sponsored folks
may be as high as $250 (could go down if registration is high). For more
info about registering contact Shirley Crowe at 309/672-6715.
July 18 - 22, San Diego, CA
"Millennium of Hope"
ASA's National Conference on Autism. Information is available from
ASA Conference Registration, 4424 Montgomery Ave., Suite 201, Bethesda,
Maryland, hotline number: 1-888-233-2864, e-mail at: imi@imimtg.com.
July 31, Tinley Park
"An Overview of Sensory Integration from Occupational Therapy to Home
and Community"
Colleen Patton, OTR/L & Dawn Zibricky, RN, MS, CSN present an overview
of sensory integration designed to help you understand what may be causing
varied sensory problems. Strategies to help your child will be emphasized.
For more info about this StarNet VI workshop call 708/385-2199
****August 7, Peoria
"Asperger's Syndrome - Characteristics, Identification and Instruction"
Diane Twachtmen-Cullen presents this all-day conference at Weaver Ridge
Golf Club. Cost for non-MCA sponsored folks about $54 (could go down if
registration is high). For more info about registering contact Shirley
Crowe at 309/672-6715.
August 8, Matteson
"Instructional Formats for Teaching Young Students with Autism Spectrum
Disorders"
Steve Goodman, Ph.D. will cover strategies of discrete trial training,
incidental teaching, direct instruction and precision teaching along with
discussing each strategies implementation, benefits and limitations. For
more info about this StarNet VI workshop call 708/385-2199
September 17, Glen Ellyn
"ABC's and 1,2,3's of Autism: What is It? Where Do I Start? How Do
I Plan?"
Peg Mazeika leads this introductory workshop that explores the basic
learning characteristics of children with autism. The use of positive planning
and instructional strategies will be emphasized, along with environmental
and social supports. This is a StarNet II workshop so pester the good folks
at 847/803-3565 for more details.
September 21, LaGrange
"Supporting and Educating Students with Asperger's Syndrome / High
Functioning Autism"
Cathy Pratt tackles the problem of "challenging behaviors" and will
discuss positive behavior supports and the role of functional assessment
in behaviors and strategies for teaching alternative appropriate behaviors.
This useful workshop comes from the folks at StarNet II, and they await
your call at 847/803-3565 to ask for more information.
****October 26, Oakbrook Terrace
"Effective Programs for Children with Autism Spectrum Disorders in
the Schools"
Cathy Pratt, Ph.D. is the keynote speaker for the 17th annual conference
of the Center for Speech and Language Disorders. Conference brochures to
be mailed in August - call 630/530-8551 to be sure they have your address!
"We are looking for normal preschool children (ages 2 - 5) for a 24-hour EEG study. Children may or may not have a sibling with a developmental delay. Research has suggested that children with severe developmental delays may present with abnormal EEG in comparison to developmentally normal children. A higher incidence of abnormal EEG in the developmentally delayed children would elucidate the role of epilepsy in cognitive development. We aim to establish a baseline by testing normal children, with which to compare treatment outcomes in the future. Patients will receive $100 for participation in the study."
For more information or to volunteer your child please call the Lake Bluff offices of Dr. Michael Chez at 847/735-0300. This study is funded by the Michael G. Chez, M.D. Foundation for Autism and Epilepsy Research. (Hey - come to the racetrack June 30 and help raise dollars for more research! And, if you are not on the foundation's mailing list, be sure to call and request the latest issue of The Foundation Forum, (April 2001) which includes information on other research being funded by this foundation, including studies on auto antibodies, Aricept, Zanaflex, and more. I am told several more of the doctor's articles will be appearing in peer-review journals within the next few months - you know I'll pass on word when I get it ; - )
______________________________________________
Contents
This new page has links to the new IEP Quiz, IEP FAQs, articles and tips about IEPs, legal information and cases [including a landmark case here in Illinois re: ABA!] free resources, and book reviews and recommendations.
You will locate this tome of information at:
http://www.wrightslaw.com/info/iep.index.htm
(If you do not have Internet access at home or work, try your local public library! )
While you are at the Wright's site, if it is your first time there poke around and see what else they have. This is THE best site on the web for parents of special needs kids! Sign up for their free on-line newsletter, too.
by Cynthia Burkhour
"Students maintain friendships over the summer through leisure connections with peers in recreation activities. Kids with disabilities need to have these same experiences. The IDEA and the ADA both offer strategies and techniques to help us make it happen for our children. We have the same responsibilities as other parents do to make it happen for our children. We need to sign them up, pay the fee, car pool, take our turn bringing snacks, volunteer for special events, etc., just like all the other parents. The recreation providers have a legal, moral and ethical responsibility to welcome ALL participants and to provide accommodations, adaptations and supports to facilitate participation under the ADA. Under the IDEA, recreation is a related service just like occupational, physical, and speech therapies. Educators have a responsibility to assist students to access leisure and extracurricular activities to maximize the special education experience. As kids are being fully included in typical classrooms, the need for typical social and leisure experiences with classmates outside of the school day is increasing.
Unfortunately, many students receiving special education services who
are included in typical classrooms and qualify for extended year services
only have separate/center- based summer program options available to them.
Their classmates, who do not have disabilities, are participating in summer
recreation activities and programs at their neighborhood parks, playgrounds,
pools or recreation centers and at camp. These students maintain friendships
over the summer through this leisure connection with their peers in summer
recreation activities and programs. A tremendous amount of learning happens
in these summer experiences that reinforces and demonstrates the application
of academic as well as social skills acquired in the classroom. At this
time, students with disabilities do not have the same summer opportunities.
Typically, these students are served in summer school programs just for
students requiring extended year services. This effectively segregates
them from participation with their classmates, and does not afford them
typical learning and social opportunities with their friends. Many students
have expressed their displeasure with this "only option" and have
said they want to do what their friends do, and not be "sent back,"
as one girl put it, to a segregated classroom for the summer.
How do we change this scenario and afford kids with disabilities typical
summer opportunities while still meeting our responsibility for providing
extended year services? Spread the word! Educators, parents and recreation
providers need to learn about the concept and the processes utilized
to make it happen. They need to learn how to work together to make inclusive
summer recreation opportunities a viable alternative to separate/center-based
summer school programs. Each has responsibilities for taking the necessary
steps to utilize this integrated option.
Educators and families can put recreation, as a related service, on the I.E.P., writing goals and objectives for inclusive summer leisure services, in the community with classmates.
Schools can utilize educational program funds typically spent on the student in separate extended year services to purchase inclusive leisure services and support services.
Schools and families can work with recreation programs to provide education and training for the summer recreation program leaders on individual accommodations and support techniques to increase successful inclusion for students with disabilities.
Wonderful stories are emerging as we begin to include recreation as an integral part of the educational experience. Kids are learning to value each other's contributions and focus on what each CAN do in the classroom, on the playground, in the neighborhood and at the park. Kids are learning to enjoy each other's uniqueness and learning how to cooperate and support one another. They are learning about "doing it differently" and still having fun.
Getting our kids involved with recreation opportunities with their classmates
is not only the right thing to do, it's a positive thing for all kids.
Just think of the wonderful relationships there will be in the future for
our children if we help them to become more than classmates, to become
friends who share common leisure interests and experiences. These kids
of today are the grown-ups of tomorrow. These kids of today will break
down the barriers of segregation and will build welcoming communities for
everyone."
Reprinted from TASH Newsletter Vol. 24; Issue #4; April 1998
Sharon Hurst, of the Auditory Training and Education Center in South
Bend. has planned two sessions of Auditory Integration Training this summer:
Downers Grove, IL - June 11-15 & 18-22
South Bend, IN - August 6-10 & 13-17
Anyone interested in either AIT session please call 1-888-248-0990 or
email s.hurst-ait@worldnet.att.net
Contents
Proceeds to Benefit Cure Autism Now
The date for the ASI Golf Outing will be September 25, 2001 and it will be at the Seven Bridges Golf Course in Woodridge. Volunteers will be needed. The ASI office at 630-691-1270 can give you more information. They will be looking for financial sponsors and volunteers to help with the day of the event. Plans are well underway already and this should bring in a lot of money for the organization.
by Dennis Debbaudt, reprinted with permission
The issue of elopement is a serious and common one for many parents and caregivers of kids and adults with autism. Law enforcement agencies and families around the country are now addressing this issue in several ways.
This month's [April] FBI Law Enforcement Bulletin features an article I've co-authored with Dr. Darla Rothman, curriculum specialist for the Maryland Police and Correctional Training Commissions (MPCTC), titled "Contact With Individuals With Autism: Effective Resolutions". The article is based on the MPCTC curriculum "Why Law Enforcement Needs To Recognize Autism" (1999).
The article & curriculum address common law enforcement issues involving persons with autism, such as recognition and response techniques, misidentification of the person as suspicious, de-escalation techniques, victim issues, false confession in interrogation, and, elopement.
A section of 2500 word report talks about runners/elopement:
"One characteristic of autistic individuals, especially children, is their propensity to run. They do not believe that they are running away, but possibly just returning to a favorite place or going back to look at something attractive. They may be lost and may be very content where they are; however, to the general public, unattended children are a cause for concern.
Police unwittingly may charge parents of autistic children with endangerment, which forces them to attend hearings to retrieve their bewildered children from protective services.. Moreover, a child found alone may not respond to an officer's efforts and consolation because they are quite content to stay where the officer found them. Individuals with autism, particularly children, usually cannot process multiple stimuli at one time. Bright lights, sirens, K-9 partners, different smells, loud voices, or attempts at consolation may push an individual with autism to react in a way that may make it impossible to regain their attention and may jeopardize the safety of those involved in the incident. For example, an autistic person may abruptly flee into busy traffic, because they do not realize the inherent risk in that act. (Debbaudt & Rothman, 2001)"
The Eugene Oregon Police Department and others around the U.S. provide, parents and caregivers of those with autism Alzheimers disease, mental retardation the opportunity to access the emergency information system (911) with critical information about their loved ones.
Contact your local police department and ask them to review the April 2001 FBI Law Enforcement Bulletin article. Ask them to request a copy of the MPCTC curriculum, work with them to develop a 911 plan. Information on this issue is at my WWW site http://policeandautism.cjb.net/
When we work together with key community service agencies or can refer
them to information about these partnerships we help pave the way for better
community experiences for everyone.
Anyone who may be interested in contacting me about law enforcement & autism issues, please feel free at ddpi@flash.net
Dennis Debbaudt
Dennis also sez check out a tracking device that could address elopement at:
www.digitalangel.net
Call Digital Angel Corporation at 651/455-1621 for more info if you do not have internet access.
Project SafeMinds (www.safeminds.org) is looking for boys, 13, 10,
8, 7, 5, and 4 years of age, who have not been vaccinated to be part of
an autism blood study being conducted by a leading immunologist. The boys
will form a control group which will be compared to a group of autistic
boys who have been vaccinated and a second control group of vaccinated
non-autistic boys.
The requirements are that the boys must not have been vaccinated with ANY vaccine. They must not have any neurological or developmental disorder, including learning disorders. This is also true for anyone in their extended family... uncles, aunts, cousins, etc.
They will need to draw 4 small tubes of blood for the 4, 5, 7, and 8 year olds and 5 small tubes for the 10 and 13 year olds.
All expenses related to the blood draw will be paid. Additionally $100 will be paid for each participating child.
If you are interested, or know anyone that would be interested, please contact us. This type of research (with a non-vaccinated control group) needs to be supported.
For the children's sake,
Barbara Alexander Mullarkey, spokeswoman 708-848-0116
Mary Gorski, membership 708-442-5915
Connie Roux, regional coordinator 217-355-6506
Illinois Vaccine Awareness Coalition
P.O. Box 946
Oak Park, IL 60303
www.vaccineawareness.org
Contents
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Mark your calenders for a fun evening, cruising the water's of Lake Michigan off Chicago's scenic shore on Chicago's First Lady. 125 folks will enjoy dinner and dance to live jazz while raising funds to help support further research by Dr. Andrew Wakefield. All this to happen Tuesday, September 4 - extend that Labor Day weekend! Celebrate the kids going back to school!
Ticket price not yet set - (we will let you know!)
For more information, or to offer to help, please contact Liz Birt
at 847/840-8104 or Betsy Prohaska at 847/854-6039.
May 3, 2001
Marie McCormick, M.D., Sc.D.
Chair, Immunization Safety Review Committee
National Academy of Sciences
2101 Constitution Avenue, NW
Washington, DC 20418
Dear Dr. McCormick:As the parent of a little boy diagnosed as "autistic" behaviorally but suffering from a chronic measles infection acquired through vaccination, inflammatory bowel disease and severe immune system dysfunction, I am genuinely dismayed but not surprised with the conclusions of the Institute of Medicine Committee ("IOM") regarding the measles, mumps and rubella vaccine. In addition, I find the IOM's acknowledgement of my assistance with the preparation of this report misleading to the public and an example of the disingenuous manner in which the IOM has handled this issue. Clearly my contributions were ignored by the IOM.
As both a parent of an affected child and advocate I am disturbed by the fact that the IOM permitted this report to be reviewed by individuals with strong ties to the vaccine industry. Parents like myself, who in good faith and at personal cost attended the meeting chaired by you on March 8, 2001 were assured that no one with any ties to vaccine manufacturers would be permitted to provide any input into this report. This trust has been violated by the IOM. To add further insult to injury, individuals such as Dr. Eric Fombonne whose views are contrary to Dr. Andrew Wakefield's was allowed to review the draft paper before it was released. No such similar professional or common courtesy was extended to Dr.Wakefield whose clinical findings were the very subject of the IOM's report! You and your committee members must recognize that this action taints the legitimacy of the IOM and any future work on vaccination, including the upcoming review of the relationship between thimerosal containing vaccines and neurodevelopmental disorders.
Because of the power of the Internet this deliberate deception will be "posted" onto every list, website and chat room. Although print and television media may be intimidated by trade associations such as the American Academy of Pediatrics and the vaccine industry parents are not.
The IOM's position that the measles, mumps and rubella vaccine could contribute to autism in a small number of children is pure conjecture and is not based upon any credible epidemiological studies. The truth is that only a handful of clinicians worldwide are even investigating children with regressive autism and gastrointestinal disturbances. I presented to the IOM my personal struggle with the medical system in the United States which utterly failed to diagnose the severe gastrointestinal dysfunction in my child. As you may recall, I had to fly with my child to England to receive appropriate medical care even though I live within easy driving distance to an autism "Center of Excellence" at The University of Chicago. Today children with autism in this country are literally tortured at the hands of physicians who are either too arrogant or too frightened to look at their physical symptoms.
The IOM's deliberate omission of data provided to it by Dr. Wakefield consisting of case studies of eleven children with clearly documented regression following a second dose of MMR vaccine is incomprehensible and irresponsible. This type of evidence is cited by the IOM as "strong evidence" of an association. Instead of detailing the information provided to it by Dr. Wakefield, it is merely referenced on page 45 of the report in a non-specific manner. The IOM is concealing it from the mainstream media but leaving it as a footnote to cover its position when these case reports are published and there is negative press. I find this type of posturing insulting-parents are not stupid.
The IOM's hypothesis that an increase in the number of VAERS reports filed especially from 10/2000 to 12/2000 is due to increased publicity about this issue is incorrect and illustrates just how poorly the VAERS system operates as a passive surveillance reporting system. This increase in reporting by parents was due to my action. I informed parents at an autism conference in San Diego, California that they could and should report their child's adverse vaccine reaction. What this means is that the VAERS system is fundamentally flawed. If one parent's action can increase the reporting to such a significant extent it must mean that adverse reactions following vaccination are rarely reported by either health care professionals or parents.
I would like to relay to the IOM that parents across this country are mobilizing and will not tolerate the status quo any longer. We like the AIDs advocates before us are ready to take action. Our children are not "acceptable casualties" in a war against infectious disease. This issue will not simply "go away" based upon this report.
Finally, this past weekend I attended an autism rally in Washington, D.C.. As I waited for my bags at Midway airport I was approached by a special education teacher who noticed my autism t-shirt. This individual has been teaching special education students across all developmental disabilities for thirty years. She told me that the number of children with autism in her school district is and has been increasing at a "raging" pace and that she has never seen children with this variety of disease phenotype before. Her fear is that the school district will not be able to fund programs for autistic children in the near future. Children with autism are everywhere in our communities now and all of the posturing and denial by the public health community is not going to change this reality.
Sincerely,Elizabeth Birt, J.D.
Member, SAFEMINDs
Founder, Medical Interventions for Autismcc: Congressman Dan Burton
Congressman Dave Weldon
The Honorable Tommy G. Thompson
The proteins, called metallothionein (MT), are the main way in which
the body counters heavy metal. The study, by the Chicago-based Pfeiffer
Center, a health research institute, found that of 503 autistic patients
499 showed an MT "dysfunction". "
Look for the article at: http://www.syndication.newsint.co.uk
(I am hoping the Times will let you find a back issue on line, otherwise
ask your local librarian to get it for you!)
What follows is a press release I received from Kathy Lear as part of a larger packet of materials about this program. It does look very useful as a way to get started with a basic ABA program while you are on the waiting list for a trained consultant. From my own experience (four years of ABA, first with an in retrospect neither very well-trained nor conscientious "consultant" who, in fact, "skipped town" shortly after we left her, then with a very good, experienced consultant, trained at an actual Lovaas replication site that provided her on-going supervision and training even as she helped us help Joe) the use of a trained consultant who periodically views your program is vital for achieving maximum success. The best consultant will herself (seems most are female, no offense intended to any guys out there!) view your therapists at work with your child, offer feedback to further train them in how to effectively maximize the child's progress, and catch and nip in the bud any errors that might be reinforcing undesired behaviors. She will also be astute at knowing when the child is ready to advance to the next stage of any part of the program, and demonstrate how to work with the child on any new task. Most important, she will answer parent questions and explain the hows and whys behind the program's methodology in language that a parent untrained in the terminology can understand! (Oh, to be able to clone Kristen Ryan from the New Jersey Institute for ya'all!)
That caveat aside, I think Ms. Lear has put together a great resource
that enables parents of kids with autism (the least happiest of campers
when told they have to wait months for a consultant) to GET STARTED DOING
ABA!! Now I will hush up and give you that press release. I also included
the prices.
"Toronto, Ontario ? January 15, 2001 ? The most widely used teaching methodology for children with Autism Spectrum Disorders is now available as a self-paced learning program. Help Us Learn has been developed to teach parents, educators, therapists, service providers, family and friends how to use Applied Behavior Analysis (ÔABA') to teach their children. ABA is a teaching methodology based on the Behavioral Psychology principles of positive reinforcement, graduated prompting, repetition and teaching tasks in very small (discrete) steps. The program is often done at home, using students and other part-time workers as teachers. Studies show that children receiving behavioral intervention generally achieve significant gains.Parents who have children diagnosed with Autism Spectrum Disorder or PDD (Pervasive Developmental Disorder) are often faced with long wait lists for programs and services, or prohibitively expensive costs for consultants in order to get a home or school-based education program up and running. Some families live in locations that don't have access to any services at all. Because early intervention is so critical, Help Us Learn provides parents and teachers with the information and training that they need to understand ABA, set up, run and manage a program right away.
Help Us Learn works with any curriculum and can be applied to any age group. The program was developed by Kathy Lear, a mother of a child with PDD who has a background in Adult Training & Education, to address the need for an affordable, effective and efficient way to train ABA teachers. It is designed for families and educators who don't have access to an ABA Consultant or Psychologist, can't afford one or don't want to wait to get started; and for families and educators who are currently running an ABA program and need to train new ABA teachers. "This is the program that I wish I had when we were starting out. I couldn't find it, so I developed it" says Kathy Lear.
The three-piece Help Us Learn Program includes:
The Training Manual - designed for the people who will be working directly with the child. It is a self-paced program with a combination of information, exercises, case studies and role-plays designed to provide a solid understanding of the ABA teaching methodology. Ten chapters cover: Overview, Behavior, Reinforcement, Prompts, Sd & Response, Role Play, Data Management & Analysis, Behavioral Techniques, How to Set Up & Run a Photographic Activity Schedule, and a Final Quiz.
The Program Manager's Guide - designed to be used by the parent, team-leader or coordinator ? whoever will be hiring, training and supervising a team of ABA teachers. It contains a 12-step Program Implementation Plan, the Answer Key to the exercises in the Training Manual, forms to assist with the hiring process, and a comprehensive assortment of program management forms and team management forms.
The Forms Disk - contains all of the hiring forms, program management forms and team management forms. These can be altered to suit the needs of each particular program or printed as-is.
For more information contact:
Kathy Lear
Phone: (416) 787-2190 Fax: (416) 781-8213
E-mail: helpuslearn@home.com
Website: http://www.helpuslearn.com
The program is priced so that you can afford to include your whole team, teachers, and family in the learning process:
The Individual Program Kit contains Training Manual, Program Manager's
Guide and Forms Disk.
Parents price: $99 (U.S.)
Professional's price: $149 (U.S.)
The Team Kit contains everything in the Individual Program Kit, PLUS
an additional 3 Training Manuals
Parent's price: $235 (U.S.)
Professionals: please contact Help Us Learn for pricing structure.
The Michael G. Chez, M.D. Foundation
for Autism and Epilepsy Research
invites you to a
Day at the Races
Saturday, June 30, 2001
12:00 noon (1:05 Post Time)
Buffet Lunch and Cocktails
International Room
Arlington Park Racetrack
Arlington Heights, Illinois
$100 per person
Business Casual Attire Required
(no jeans, racing silks or lab coats)
Reservations are limited to 350 guests.
R.S.V.P. by Friday, June 22, 2001
Enter Racetrack at East Gate, Wilke Road Entrance
Pick up Tickets at Gazebo
To order tickets or for additional information
please call Cathy Williams at 847/202-6542.
An invitation will be mailed.
If your company is interested in becoming a corporate sponsor, please
call Karen Flis at 847/358-3146.
100% of ticket proceeds benefit the research fund!