Volume 7 Issue 1   February 1, 2003

Letter from the editor:

Dear Readers,

Please accept my heart felt apology for being delayed with the newsletter. My family and I were going through a very rough spell, first with some daily life issues with my daughter and then with myself. I was trying to be supermom and wife and work on this to help everyone and found out the hard way that I couldn't. I ended up burning myself out for a while. While I didn't go to see a professional, I did talk to some of the readers on line and I do appreciate all of there help. With that said, I'd like to wish you all a Happy 2003, even if it is late. Please see that my email address has changed so you can now reach me there. Hubby got DSL so now I can talk on the phone while he's on the net all the time. This issue won't be the biggest, but it's going to be the best issue I can make it.

Please send all comments, criticisms, renewals, etc. to:

Also remember to make your checks out to Autism News for $17.50…

Feel free to check out this newsletter or past ones out at our website www.autismnews.net
Don't hesitate to send me stuff, I love to read it all and do appreciate everything that is sent to me.
Happy Reading,

Amy

All contents are copyright of the Newsletter mom, 2003. Total freedom is granted to recopy and share information as long as Autism News gets credit.

February 4, 2003

NORTH SUBURBAN AUTISM CHAPTER
MONTHLY MEETING
Skokie Village Hall
5127 W. Oakton
Lower Level - Community Room
7:00 to 9:00 P.M.
Our meeting will feature guest speaker Diane Gould, LCSW, who will discuss issues confronting siblings of those with Autism Spectrum Disorder in "Aren't I special Too? " Ms. Gould, has broad experience which includes development of support groups for parents, siblings and grandparents: a home visiting program for high-risk mothers and infants, inclusion consultation, parent education programs, and family camps. Ms. Gould has also administered respite and recreation programs for youth and adults with special needs. She has published on the subject of home based support services. Ms. Gould has worked for both private agencies and school systems including fifteen years at the Jewish Children's Bureau. She was part of the professional team that rewrote the Illinois Day Care Licensing Standards to make them more inclusive. Ms. Gould was a member of the Safe Environments Committee for the Illinois Department of Human Services and also serves on the Professional Advisory Committee of the Illinois Autism Society and is a facilitator for the Illinois Autism/PDD Training and Technical Assistance Project. Ms. Gould is a frequent presenter on family support issues on the local, state, and national level. She currently works for the Niles Township District for Special Education and has a private social work practice in the suburbs of Chicago. Plan to attend this meeting, as you will not want to miss this most informative speaker.
 

Illinois Autism Project
 

Check Website: www.illinoisautismproject.org
or call our office for more information
708-354-5730

February 4

Springfield Lincoln Library (corner of 7th and Capital Street) 6:45 pm- 8:15 pm
****They are asking for a $5.00 donation per person, if possible. This is the only income they have to keep their group going.
PLEASE! R.S.V.P.: Diana Noble 585-7276 or [email protected]

How to Travel the Maze of a School District for Special Education Services, Springfield Topics include:

• Relationship with the school
• The schools responsibility and obligations
• Working with special education
• Question and answer time

February 11 Buffalo Grove
Special Education attorney Charlie Fox Speaking at Special Kids, Special Families, Buffalo Grove called Special Kids, Special Families. Our next meeting is on February 11 (Tuesday) at the JCYS at 7:00pm.
Our speaker is a special Education attorney by the name of Charlie Fox. He is also a father of a special needs child.
All our welcome, there is no fee. We only ask that any one that wants to come please RSVP to me at 847-913-1978.
Susan Bauer

February 6, February 13

Training for Parent Leaders - Downtown Chicago
Two days of training by Family Resource Center staff
Morning Thursday, February 6 - Advocacy and Negotiation
Afternoon Thursday, February 6 - One to One Assistance
Morning Thursday, February 13 - Outreach and Publicity
Afternoon Thursday, February 13 - Training and Communication

Training to be conducted at the Family Resource Center, 20 East Jackson Blvd., Room 300, Chicago IL 60604 on Thursday, February 6 and Thursday February 13, 2003
The cost for the training is a modest $10.00 and includes lunch for both days. To register for this course contact the Family Resource Center at 312/939-3513
If you want to attend but can't make the scheduled dates, or would like information about car pooling arrangements, contact parent Curt Sahakian at 847/676-2774 or [email protected]

Autism Spectrum Disorders Thursday, February 13, 2003 Wilmette Library Auditorium, 1242 Wilmette Ave. 7:00 pm.
By Dr. Leventhal is currently, the Irving B. Harris Professor of Child and Adolescent Psychiatry, Professor of Psychiatry and Pediatrics, Director of Child and Adolescent Psychiatry and Director of the Sonia Shankman Orthogenic School, all at the University of Chicago.
He has worked extensively in the areas of attention disorders, autism, community services, developmental disorders, genetics, juvenile justice and psychopharmacology.
The primary focus of his current work is on medical psychopathology, particularly autism/developmental disorders, and developing new strategies for mental health services delivery to youth, especially in community agencies such as schools and the juvenile justice system.
This free event is co-sponsored by Parents Association for Student Services (PASS 39) the Wilmette Library and Friends of the Wilmette Library
WARNING! At least one member of PASS 39 has told us that non-residents and outsiders aren't welcome. Call before you attend. 847-256-5025
 

Strategies to Enhance Your Child's Social Skills, North Side of Chicago, February 18, 2003 7:00p.m.

Edgebrook Branch of the Chicago Public Library, 5331 W. Devon Ave., Chicago, IL 60646 312/744-8313
Social skills encompass a child's every environment. Understand the complex processes children need to use throughout their daily interactions. Discussion will include strategies for promoting your child's success.
One of a monthly speaker series "Learning Disabilities and More" sponsored by the Rush Neurobehavioral Center (one of the top institutions in the US specializing in non-verbal learning disorders) which is located in Skokie Illinois. This series provides a monthly speaker on the third Tuesday of each month at 7:00 pm.

February 18, 2003, 7:00 pm at the
Northern Suburban Special Education District's Association of Parents and Staff present:
IEP WORKSHOP
Tuesday, February 18, 2003
9:30 a.m. - 2:30 p.m.
New Trier Northfield Campus
Building C - Board Room C234, Second Floor
7 Happ Road - Northfield, Illinois
Session I 9:30 - 11:15 a.m. ABC's of IEP's-
A speaker from the Family Resource Center in Chicago who will share important information on special education rights and the basics of developing and participating in an IEP Meeting
Session II 11:15 a.m. - 1:00 p.m. - Brown Bag Networking Lunch
Join us for a brown bag lunch to network and talk with other parents. The lunchtime will also feature a short presentation of the Kids on the Block Puppet Show, a disability awareness program available to all elementary schools within NSSED.
Session III 1:00 - 2:30 p.m. IEP's for Middle and High School Age Students
Transition Specialist, Karen Steffan, M.S., CRC from LaGrange Area Department of Special Education, will talk about results oriented transition planning as it relates to the IEP process. She will focus on developing goals that align with student's plans for life after high school graduation
Due to limited space; NSSED families and staff receive first priority seating. Non-NSSED attendees will be admitted on a space available basis. To RSVP, contact Ginger Reese, Secretary to Karen Noonan, Director of Programs, at 847-831-5100 extension 211, by FEBRUARY 10, 2003.

Dr. Steven Gutstein (Autism), Maggianos in Old Orchard, Skokie - March 6-7, 2003
There is an interesting offering by Sweeney, Gendel and Associates and The ConnectionsCenter.
He wrote a book about developing friendships for people with autism. This will take place at Maggianos in Old Orchard, Skokie.
To register call 847/583-9492. The cost is $250.00 for registration prior to February 1st.
(Editor's note: I apologize for not getting the news to you before Feb. 1^st.)

Beyond Preferential Seating: Managing Children's Central Auditory Disorders - March 11, 2003 12:30 - 1:30 pm,

Rush Northshore Medical Center,
9600 Gross Point Road, Skokie, IL at the Sharfstein Center. 847/933-9339 ext. 222
Jeanane M. Ferre, Ph.D. will explain the M3 model which is a science-based diagnosis used to develop logical and deficit-driven intervention strategies.
Part of the "Grand Rounds" series sponsored by the Rush Neurobehavioral Center of Rush Children's Hospital
 

Normal, IL - March 21-22, 2003>
The 9 hour Wrightslaw Advocacy training program will be held at Hayden Auditorium, Thomas Metcalf Laboratory School on Illinois State University's campus. The sponsors for the 9 hour Wrightslaw Advocate training program are StarNet, Illinois State University, Livingston County Local Interagency Council, Ford-Iroquois County Local Interagency Council, McLean County Local Interagency Council, Child & Family Connections #16, Child Care Resource & Referral Network The auditorium is located on the southwest corner of S. University St. and E. College Ave. in Normal, Illinois 61761.

Questions: Call Carol Darveau (815) 657-8686 or e-mail her at [email protected]

Agenda & Registration: The conference will be from 6:00 - 10:00 p.m. on Friday, March 21, 2003 and from 8:30 a.m. - 4:30 p.m. on Saturday, March 22, 2003. The registration fee will be $50.00 per person which will include copies of the Wrightslaw: Special Education Law and Wrightslaw: From Emotions to Advocacy books. Download the registration form at http://www.wrightslaw.com/flyers/il.03.pdf.
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Autism One Conference, May 2-4, 2003, Loyola University Chicago

The Most Comprehensive Conference on Autism Ever Assembled

The conference organizers are themselves parents of children with autism. Parents are, and must remain, the driving force of this community. The issues are too sacred and the stakes too high to delegate to outside interests.

Meet Officials from the NIH and CDC

High-ranking officials from the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) will present, answer questions, and explain the government's present and future projects for fighting autism. Meet Dr. Steve Foote from the NIH and Dr. Marshalyn Yeargin-Allsopp from the CDC. Register your concerns and make your voice heard.

More than 60 Presentations the World's Leading Authorities

Autism One features many of the world's leading researchers, educators, and practitioners. Featuring over 60 presentations including experts such as Dr. Boyd Haley, Dr. Stephanie Cave, Dr. William Walsh, Teresa Binstock, and Dr. William Shaw, among others. Learn about the latest treatments to help our children, your rights when dealing with school districts, the best ways to handle insurance companies, how to
petition government agencies, along with a host of other pressing issues. In addition, leading parent-advocates and autism organizations will be on hand to present and inform.

Questions and Answers Do Not Stop at the Boundary of a Discipline

Autism is a multivariate disease. As parents we know questions and answers do not stop at the boundary of a discipline. Autism One offers four tracks to help parents and professionals make the most informed choices and decisions. The tracks include:

1. Biomedical Treatments
2. Behavior / Communication / Education Therapies
3. Alternative / Complimentary Medicine
4. Government / Legal / Personal Issues

• Autoimmune factors / treatments Biochemistry of autism
• Casein- gluten-free diets, Chelation, Dental care, Diagnosis, Enzymes, Essential fatty acids, Food / nutrition / diet / vitamins / minerals / glandular / organic foods. Environmental medicine / toxins, IVIG, secretin, transfer factors, IV glutathione, Neurological testing, findings, treatments, Phenol sulfur transferase deficiency
• Ongoing research, Understanding food labels
• Understanding medical test results, Vaccinations

• Applied Behavior Analysis, Auditory Integration
• Computers as learning tools, Greenspan / Floor time, Home schooling, Music therapy,
• Occupational Therapy, Puberty and beyond,
• Sensory Integration, Verbal Therapy
• Vision Therapy, TEACCH

Ayurveda Medicine. Chiropractic, Homeopathy
Naturopathic Medicine, Neuro Feedback, Neural organization technique, Orthomolecular Medicine, Traditional Chinese Medicine

Autism the law and you, Centers for Disease Control (CDC) findings, funding, and future directions, Counseling - coping and communication for parents, Dealing with insurance companies, Individualized Education Programs, National Institutes of Health (NIH) findings, funding, and future directions Obtaining government services, Vaccines the law and you

A partial list of speakers

Dr. James B. Adams, Ph.D. (CME)
Dr. Marshalyn Yeargin-Allsopp, M.D.
Margaret Ayers, Teresa Binstock
Liz Birt, Cheryl Blackwell
Bruce Boyer, Dr. Brazdziunas
Dr. Timothy Buie, M.D
Dr. Jeffrey Cantor, DDS
Jane Casey, Dr. Stephanie Cave
Dr. Andy Cutler, Dr. Joan Fallon
Dr. Steve Foote, Raymond Gallup
John Garrett, Georgianne M. Gerber, LCSW, BCD,
Dr. Boyd Haley, Dr. John Hicks
Mary Higinbotham, Sonja Hintz R.N., B.S.N
Dr. Patricia Kane, Carolyn Keatinge
Michael Lang, Willis Langford
Joe Lillard, Lewis Mehl-Madrona, M.D. Ph.D.
Jackie Marquette, Stephanie Marohn
Joseph Morrow, Ph.D., April Oaks
Susan Owens, Dr. Isaac Pessah
Morana Petrofski, Betsy Prohaska
Tim Ray, Rick Rollens, Amy Rothenberg ND
Adrienne Rousseau, Ravi Roy
Dr. Carola M. Lage-Roy, Dr. André Saine
Mark Schauss, Jeff Sell
Dr. William Shaw, Dr. Tinus Smits
Dr. Aristo Vojdani, Dr. Andrew Wakefield
William Walsh, Ph.D., Andrea Watson
Sandra Weizman, Dr. Brian Wikoff

Please let me know if there are any other questions I can answer.
Edmund Arranga
http://AutismOne.org
[email protected]

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Play Partners is forming a Friendship Group for boys, included in regular education, 2nd-3rd grade. All Friendship Groups meet six weeks, with the option of extending 3-6 weeks. Most likely to be held Saturday @ 5:00. Please contact Play Partners @ 847 681 0324 if interested.

This is the wish list of provisions I would like to, ideally, see inserted in the bill:

1. Education of parents, pediatricians, healthcare personnel, caregivers, educators and service providers about the symptoms of ASD.

2. A statewide network of comprehensive autism information and referral centers that house tools, resources and experts who can provide guidance and assistance to family members and treatment providers of children and adults with ASD. I would also like for
these centers to provide information about best treatment/education/intervention practices for managing ASD.

3. State-funded and/or subsidized intensive, home-based therapeutic services. I would like for parents of children aged 0-3 to be made aware of all of the services available for their children, including ABA. I would also like home-based services made available for children past the age of 3, including school-aged children. A good model for the types of services I would like to be made available is the Puentes program at Illinois Masonic Hospital. The program offers 1 year of moderately intensive, home-based services available to families of children up to age 6. Services are provided to families on a sliding fee scale; it costs the hospital about $8,500 per child serviced. The program is multidisciplinary, utilizing ABA, Floortime, PECS and a number of other therapies. While the program provides far less than the 35 hours per week recommended by most ABA therapists, nevertheless, all children who have participated in the program have shown tremendous gains. Adopting this type of service model would be creating a win-win situation for families and the state budget-tenders.

4. Regional lifeskills learning laboratories to assist children and adults with ASD in acquiring the skills necessary to lead productive, independent and meaningful lives.

5. Creating and incentive for school districts to go beyond the requirement of providing "appropriate" educational services and creating programs that provide "exceptionally beneficial" or "ideal" educational services for students with autism.

6. Funding for school districts to provide education and outreach to students and parents of typical children regarding the needs and characteristics of students with autism to ease their acceptance and integration into the social environment at school. In order to benefit from "inclusion," autistic students need to interact with, not just be in the presence of, typically developing children. By educating children
and their parents about autism, their level of understanding will increase and they will be more likely to accept, and even embrace, students with autism. Similar programs need to be implemented in workplaces where individuals with autism are employed.

7. Medicaid waivers need to be made readily available to all individuals with autism who need them. Insurance companies need to be compelled to pay for necessary treatment for adults and children with autism.

8. All school districts in the state should be required to apply for Medicaid reimbursement for the full range of services reimbursable by Medicaid.

9. A variety of employment options--sheltered, secure, supported and competitive--and the training and support necessary to help individuals with autism succeed in them need to be made available.

10. A range of residential options needs to be made available to children and adults with autism.

11. School districts need to be required to provide either year-round educational options for students with autism or they need to be required to pay for services provided by public or private schools outside of their districts when students with autism require
year-round educational services to prevent regression. School districts need to be required to provide home-based ESY services beyond the ESY services they typically provide when such services are necessary to prevent regression in students with autism.
Please e-mail any provisions you would like included in the bill to Laura at [email protected] or to me at [email protected]. We are very optimistic about this project! How could such a passionate, dedicated and committed group of people fail? We are looking forward to working with all of you to make this project a success!!!. Remember, working together, we CAN make a difference!.

>Cheers,
Michelle McFarland-McDaniels
(Editor's note: You can also send them to the newsletter address and I will make sure that Laura or Michelle gets them.)

*** Here is the Bad News ***
The House bill is tacking the opposite tack. Their bill reduces federal special ed funding.
This very week, January 26-30, these two bills are being reconciled in a House-Senate Conference Committee this week. The final decision will likely be made before the end of the week!

*** Here is the Action We are Asking You Need to Take... Right Now! ***
Please go to the Legislative Action Center at the National Center for Learning Disabilities:
http://capwiz.com/ld/issues/alert/?alertid=1235916&type=CO
Enter your Zip Code... then follow the directions and they will send an email in your name to your specific representative and senators. They have a standard form letter (they permit you to customize the letter if your choose).
Please do this right now... While you are on the Internet! There is no time to lose! These decisions are being made right now... this week!

Dangerous Encounters; Avoiding Perilous Situations with Autism

By Bill Davis and Wendy Goldband Schunick

ISBN # 1-84310-732-5

This book is great and easy to understand from a parent's point of view on how to help our law enforcement officials and rescue personnel understand our kids. Not only that it helps retail personnel of stores that we are regulars at understand why our kids sometimes do things that all be it wrong, they don't necessarily understand why they are doing it. This book also teaches them some of the aspects of how to cope with people with autism and our kids how to deal with common emergencies, like travel safety and fire so they may not have a melt down. It's a good read.

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7:00 am. - Registration begins
8:00 am - 5:15 pm Conference Program

The Stonegate Conference Centre is located 30 minutes NW of O'Hare International Airport at 2401 W Higgins Road (just E of Barrington Rd.) 847-884-7000

You will receive an e-mail or phone confirmation upon receipt of your registration and payment.

Hampton Inn & Suites*
2825 Greenspoint Parkway
Hoffman Estates, IL 60195
847-882-4301
$69/night Double/King
$89 1 Bedroom Suite

Wingate Inn*
50 East Remington Road
Schaumburg, IL 60173
847-882-5000
$69/night
$109/night 1 Bedroom Suite

Hampton Inn* (near Woodfield Mall)
1300 E. Higgins Road
Schaumburg, IL 60173
847-619-1000
$69/night Double/King

*Free Shuttle services available to and from conference.

When making reservations mention you are with the 2003 CARE Conference to receive the above rates.

Andrew Wakefield, M.D.

Emergent Pathogenesis of Regressive Autism: Implications for the Future

Dr. Wakefield is the Senior Medical Scientist for Visceral and Director of Research for a new research and treatment center to be established in Boca Raton, FL. He leads a team of researchers based in Europe and the US. This group of has been responsible for a series of discoveries and publications in the worlds leading medical journals. Conference attendees will be updated on progress in several areas of research.

Current Research and Theories in Autism

Dr. Schneider is currently the Medical Director of the Center for Autism Research and Education in Phoenix, AZ. She is the mother of two children with autism and has spent the last eight years investigating potential treatments. She has been the principal investigator in multiple studies focusing on the metabolic, genetic, and autoimmune aspects of autism. Dr. Schneider will discuss recent research findings in the areas of secretin, gamma globulin, metabolic markers, and genetics.

Dysfunction of Sensory Integration

The presenters are both Clinical Directors of Amy Zier & Associates, Inc. They will discuss challenges and practical solutions for the home, school, and community

Practical Strategies For Improving Communication, Language, and Critical Thinking

This presentation will focus on children from preschool through middle school, with a target on ASD, Aspergers, and PDD. The presenter will discuss specific ways to maximize development of communication, language, and critical thinking in both home and school environments. Toward this end, the presenter will discuss ways to provide meaningful experiences within the natural context, as well as how to use children's literature, songs, and games to promote communication, language, and critical thinking.

10 Lifetime Goals, For People of All Ages, with ASD

Attendees will learn vital goals that result in the most promise for ASD children and adults to become part of society. With a focus on current and future success, these goals ensure that no time is wasted in working with children and adults with ASD.

7:00 - 8:00 am Registration begins / Exhibitor viewing
8:00 - 8:15 am Opening Comments
8:15 - 9:45 am Barbara Doyle, M.S.
9:45 - 10:15am Break/Exhibitor viewing
10:15 - 11:45 am Cindy Schneider, M.D.
11:45 - 1:00 pm Lunch/Exhibitor/ Viewing/Optional Parent to Parent Resource Discussion
1:00 - 2:00 pm Erika Blake, MOT, OTR/L & Elizabeth Fraser, MS., OTR/L
2:00 - 3:30 pm Diane Twachtman-Cullen, Ph.D.
3:30 - 4:00 pm Break/Exhibitor viewing
4:00 - 4:45 pm Andrew Wakefield, M.D.
4:45 - 5:15 pm Q & A Panel / Exhibitor Viewing
 
 

Or fill out the form on line at www.bhare.org and fax to: 847-891-1580

For Financial Assistance:
Contact STARNET at: 800-227-7537
Or Illinois Clearinghouse at: 800-852-4302

Please make child care arrangements, as children may not attend the conference.