AutismNews Network

News Page

This page contains items of interest that are not workshops, conferences or support group meetings.  We will place here information about fundraisers, contests, science, or political action, and other articles relating to taxes, insurance and education.
 

For up to date news, please join the group.To join the e-list group, click: http://health.groups.yahoo.com/group/AutismNews/join

These pages will not be anything slick, but a list any parent can read to learn about new help out there.   
It also contains tidbits and thoughts you will not find anywhere else.
Please send your announcement today!  To post here or give feedback (always welcome), please send an email to fishstep@autismnews.net.

Popular links
Namenda
Tax Deductions

Insurance Parity for Mental Health (autism not included?)
Illinois autism insurance mandate.

New listserve : Favorite Homeschool Curricula

"There is a plethora of curricula, workbooks, online lesson plans, library collections, and off-site learning opportunities. This group is a place to share your favorite homeschool curricula and materials. Whether you have an early learner, neuro-typical learner, special needs learner, or a gifted learner, you are the expert on what has worked best. What materials have worked out well for you? We look forward to your advice on some great homeschooling materials!"

David Royko and autism

A story on how a parent's love for his son led him into bankruptcy trying to get the care his son needs.
http://www.chicagoreader.com/Bleader/archives/2013/10/25/david-royko-and-autism

The goal of this petition is to ensure that families with autistic dependents have access to adequate healthcare for treating autism. Health coverage for autism was not included in the Federal Health Care Plan (PPACA), and it was deferred to the States. However, the States have no authority over most self-insured employers and many families are losing their coverage and will not be able to provide care. In addition, Flexible Spending Accounts (FSA) with unlimited levels are very helpful to families with special needs, but these are now limited to $2,500. Many special needs families also fall victim to Alternative Minimum Tax (AMT). Under the AMT, medical bills are generally impossible to deduct effectively. Lack of adequate coverage and these tax repercussions will cause severe economic hardship on families with autism.

My name is Amanda Medrano and I am a doctoral student at the California School of Professional Psychology at Alliant International University in San Francisco. As part of my graduate program I am conducting research about siblings of children with autism and social support. I’m hoping that someone in your family will want to participate. To be eligible, siblings must be between the ages of 9-11 and have parental permission. Participation consists of filling out one questionnaire for parents that should take a total of about 5 minutes and two questionnaires for children, which should take approximately 25 minutes. Upon completion of the surveys, participants will receive a $5 gift card for Starbucks. Participation is anonymous; however, the gift card will be sent via e-mail; therefore an e-mail address must be provided to receive the gift card. My study has been reviewed by the Institutional Review Board at my institution to ensure that I have followed ethical protocols in designing and conducting my study. If you are a parent and think your child would be interested, please go to the following website, which will tell you more about the study. After you read this information and sign the information letter, then your child may access the site.

(added 08/15/2012)

https://alliant.qualtrics.com/SE/?SID=SV_3yOkfxOZ65tPqks

New therapy uses parasites to stimulate the immune system

Researchers propose that the immune system can be stimulated by digesting harmless whipworm eggs.  The parasite lodges temporarily in the digestive track where it stimulates the immune system.

Eric Hollander, director of the Autism and Obsessive-Compulsive Spectrum Program at Montefiore Medical Center and Albert Einstein School of Medicine in the Bronx, N.Y., expects to begin recruiting for a human trial in adults with autism by the end of March.

"People are just beginning to think about modifying the immune inflammatory response to see if it has some sort of effect on behavioral symptoms," says Dr. Hollander.

In 2005, Stewart Johnson, a portfolio manager at an insurance company in New York, and his wife were at their "absolute limit" with their then 14-year-old autistic son. Mr. Johnson says he exhibited extremely disruptive behaviors, and agitation. The Johnsons were close to putting their son in a residential facility.

Around this time their son made his yearly trip to summer camp—always a difficult time.

But one day, says Mr. Johnson, a camp counselor called, saying his son was calm and behaving better than he had ever seen. The night after Mr. Johnson picked up his son—finding he was indeed well-behaved—he saw his son's legs were covered with many bites from chiggers, the larvae of mites. After about 10 days, the disruptive behaviors returned. "I said, 'this can't be coincidence,'" says Mr. Johnson.

He started doing research, heard theories that the immune system may play a role in autism, and came across the work on whipworm eggs and Crohn's disease. He was able to obtain a supply to test on his son, though first he took the ova himself to make sure they were safe. The eggs, which aren't yet available in the U.S., cost €300 ($396) for a two-week vial, Mr. Johnson says.

After a reduced dosage of the invisible, tasteless eggs failed to help, Mr. Johnson consulted with the supplier, OvaMed GmbH, of Barsbüttel, Germany, and bumped up the dosage. In about 10 weeks, the disruptive behaviors ceased.

The younger Mr. Johnson, who declined to comment, lives at home and has been taking the eggs ever since. The worst symptoms don't return so long as he stays on the treatment, Mr. Johnson says.

http://online.wsj.com/article/SB10001424052970204795304577220993641557460.html?mod=googlenews_wsj

alt link whipworm.html

Appellate Court rules in favor of student and her service dog.

Update, February 25, 2017:
The U.S. Supreme Court on Wednesday ruled that the family of a Michigan girl with cerebral palsy can pursue a disabilities suit against her school for banning her service dog, in Fry v. Napoleon Community Schools.

based on the lawsuit allegations, the family was not required to exhaust administrative remedies under the Individuals with Disabilities Education Act before suing.

The Ezra Eby Elementary School had banned the service dog, a goldendoodle named Wonder, in 2009, though it later relented. The school district had reasoned that Wonder didn’t need to help the girl, identified as E.F., because she already had a human aide. Wonder was trained to help E.F. retrieve dropped items, open and close doors, turn on and off lights, and take off her coat. E.F.’s pediatrician had recommended the dog stay with E.F. at all times to increase bonding.

The family’s suit against the school district suit relied on the Americans with Disabilities Act and the Rehabilitation Act, rather than the IDEA law.

Kagan said exhaustion wasn’t necessary because the substance of the suit wasn’t based on a denial of the IDEA law’s guarantee of a free appropriate education. She remanded the suit, however, for a determination whether the family had sought remedies under the IDEA law before filing the suit.

Appellate Court rules in favor of autistic student and his service dog.

August 28, 2010.  The Illinois Appellate Court ruled that Kaleb Drew, a student with autism, could use a service dog,

a golden labrador named Chewey, in school.  The dog prevents the boy from running away, helps him focus on his homework and calms him when he has a tantrum.  Also, he needs the dog to protect him from harm, go to school with him, sleep beside him every night, calm him and serve as a bridge between him and other people.  This case is an expedited appeal to resolve the issue prior to the start of school, and the matter involved the parent's preliminary injunction against the Villa Grove school to prevent it from turning the boy and his dog away.  The school can still pursue the case further, depending on whether it will force the teacher to testify that the dog is being a disruption to the class, but the evidence may show that the class actually improves with the dog present.  The dog had 2 years of training, and the Drew family had fundraisers to finance the $13,500 cost.  The Illinois school code requires service dogs must be permitted to accompany disabled students at all school functions.

picture credit: http://www.illinoistimes.com/Springfield/article-6120-school-bars-autistic-child-and-his-service-dog.html

For these stories:

• New definition of service dog under the Americans with Disabities Act (ADA) in March 2011.

• IRS extends tax deduction for service dog to those with mental disabilities.

see this article from our sponsor

Affordable Care Act requires coverage to screen infants for autism, April 2011
see AutismNews.net insurance page

Autism: Coming of Age, Documentary

http://www.wgby.org/autism/index.html, a PBS documentary
In the next 10 to 15 years, an estimated 800,000 children with autism will age out of the school system and transition into adulthood. Then, they will look to ill-prepared state and federal governments for the support services and resources to meet their many needs: a situation autism experts refer to as the "coming tsunami."

The one-hour documentary Autism: Coming of Age provides an inside look at the lives of three adults with autism and includes interviews with their families and support teams. Autism and disability experts from Massachusetts, New York, Washington, Virginia and Pennsylvania also discuss the current system, impending challenges and possible outcomes for the future.

Autism Policy and Politics

        by John J. Pitney, Jr.
http://www.autismpolicyblog.com/2011/03/vaccine-forum-and-somalis-in.html

I am writing a book about autism policy and politics in the United States. My aim is to write a scholarly and impartial treatment, without pushing a  particular point of view. This blog contains information relevant to this  project. If you have suggestions or comments, please get in touch with me at  jpitney@cmc.edu

Take Survey of IDEA Advocacy Experiences, sponsored by National Organizations

Please take part in the IDEA National Survey, a survey of whether the rights of students with disabilities and their parents are protected.  The survey is sponsored by the National Center for Learning Disabilities (NCLD), National Down Syndrome Society (NDSS), Autism Society of America (ASA), Autism National Committee (AutCom), and The Advocacy Institute (AI). 
Go to http://www.ideasurvey.org <http://www.ideasurvey.org/>

The survey topics include whether the rights of students with disabilities and their parents protected throughout the special education process, including IEP meetings and IEP issues, eligibility (child find), Due Process hearings (impartial hearings), and other education issues. There is also a questionnaire for parents whose children have been denied eligibility for IDEA (denied an IEP).

All disabilities are welcome!  We are studying these issues for all students, regardless of their disability or special need.  There are surveys for all community members:

• Parents of children with disabilities

• Self-advocates (people with disabilities)

• Attorneys, advocates, and other professionals

The survey will run March-May 2011.  The results will be compiled into a report about experiences under the IDEA that will be published this summer. You can take the survey and read more about it at http://www.ideasurvey.org <http://www.ideasurvey.org/>

PLEASE SHARE THIS NOTICE BROADLY AND PLEASE FORWARD.
Thank you,
Jessica Butler
Coordinator, IDEA National Survey Project
email: jessica@jnba.net
website: www.ideasurvey.org <http://www.ideasurvey.org/>

Autistic-Like: Graham's Story

This documentary airs on PBS in late March/April.
Autistic-Like: Graham's Story is a family portrait of one dad's determined quest to find the right therapies, doctors and words to describe his son. As he searched, Erik began wondering how other families in the same situation fare. How should or could these parents help their kids?

Autistic-Like: Graham's Story illuminates the medical, social and public health  issues faced by families with autistic-like children who have no clear diagnosis and are offered no specific treatment.

Watch the trailer: http://www.autisticlike.com/index.html
PBS air dates: http://www.autisticlike.com/PBS-dates.html

sent by One Place for Special Needs
http://www.oneplaceforspecialneeds.com

The Yale Seminar on Autism and Related Disorders

The Yale Seminar on Autism and Related Disorders Online

The Yale Seminar on Autism and Related Disorders is the United States' first undergraduate course of its kind. Its goal for this website is to make all of the lecture content and supporting materials available online for free for anyone who desires to learn about Autism Spectrum Disorders. For Yale undergraduates, the class consists of a weekly seminar on diagnosis and assessment, etiology and treatment of children, adolescents and adults with autism and related disorders of socialization.

2011 Autism One Conference

http://www.autismone.org

AutismOne & Generation Rescue

Invite You To Autism Recovery on a Budget: Empowering Parents

150 Autism Experts
5 Jam-Packed Days of Presentations
16+ Specialized Content Tracks
May 25 – 29, 2011
The Westin Hotel, Lombard, Illinois

The largest and most comprehensive autism conference, internationally, is now FREE!

Illinois Association of Microboards & Cooperatives, Inc.
Www.iambc.org

Illinois House Bill attempts to make IDEA enforceable

 HB 1705 sponsored by Representative Robin Gabel, provides for additional protections for parents in due process and state complaint procedures. The factsheet is attached and the bill is below.  This bill makes if much more difficult for school districts to ignore hearing officer decisions by making ISBE’s enforcement mechanisms mandatory and adding compensatory education to ISBE's arsenal. Additionally, the bill eliminates the 30 day waiting period for hearing officer order implementation.  Regarding state complaints, the bill helps to level the playing field by requiring that the District provide to the complainant a copy of the response and all documentation submitted to ISBE and requires response be filed within 10 days. Currently, the District is not required to provide a copy of their response or any supporting documentation, so complainants (often parents) have no way of knowing how to respond to any defenses the district asserts.
http://www.ilga.gov/legislation/billstatus.asp?DocNum=1705&GAID=11&GA=97&DocType\
ID=HB&LegID=58881&SessionID=84

New law creates database to help law enforcement aid people with disabilities.

The Illinois Premise Alert Program (PAP) Act effective August 29, 2009.

1st Annual Hope Ride for Autism

Families and individuals are invited to greet the riders and enjoy the familiy oriented
festivities at Lions Park, in Waterman Illinois. Food, Music and Fun for all!
Questions??? Call 1.630.691.1270 or visit www.hoperideforautism.com
[http://rs6.net/tn.jsp?et=1102666004571&s=951&e=001XAdw2XhGGcBagiD3oXKOXYeseiZ2EV-WXSnY_-KL7z5QFNHmrsRrAj7ytvudO2fXxBJmPdvX2unazErKQw5lqZsOYfA77WetUdzZLUKlt6HEADWZa97d422lNvyAhEtk]

FREE TRAIN RIDES AND INFLATIBLES FOR KIDS WITH AUTISM! Siblings can purchase a
wrist band for $7.00 at the park for unlimited rides on the train and bouncy houses.
Gluten and Casein free food options will be available for purchase at the park.
This event will include entertainment, food, train rides, children's activities,
informational tables, products, family fun, raffles, and a visit from Ozzie the
Cougar from the Kane County Cougars.

A look at the Magneto EncephaloGraphy and Dr. Jeffrey Lewine

Jnaurary 23, 2009.
In this NBC 5 news broadcast, Dr. Jeffrey Lewine shows the MEG scan in action.
http://www.nbcchicago.com/health/focus/Mind_Machine_Chicago.html

We welcome Dr. Lewine to Chicagoland.  He spoke at the first Illinois CAN conference, and introduced us to his findings, which show a significant number of children with autistic behaviours are experiencing seizure disorders.  The seizures occur in parts of the brain affecting language but not the gross motor control parts of the brain, so the patient does not appear to be seizing, especially during sleep, when language is being assimulated by the brain.  The MEG can show precisely the time and place of seizure activity in the brain.

Here is part of his article:

Conclusions.  This study demonstrates that there is a subset of children with ASDs who demonstrate clinically relevant epileptiform activity during slow-wave sleep, and that this activity may be present even in the absence of a clinical seizure disorder. MEG showed significantly greater sensitivity to this epileptiform activity than simultaneous EEG, 1-hour clinical EEG, and 24-hour clinical EEG. The multifocal epileptiform pattern identified by MEG in the ASDs typically includes the same perisylvian brain regions identified as abnormal in LKS. When epileptiform activity is present in the ASDs, therapeutic strategies (antiepileptic drugs, steroids, and even neurosurgery) aimed at its control can lead to a significant improvement in language and autistic features.autism, pervasive developmental disorder-not otherwise specified, epilepsy, magnetoencephalography, Landau-Kleffner syndrome.

PEDIATRICS Vol. 104 No. 3 September 1999, pp. 405-418 , 
Magnetoencephalographic Patterns of Epileptiform Activity in Children With Regressive Autism Spectrum Disorders, Jeffrey D. Lewine*, Richard Andrews, Michael Chez§, Arun-Angelo Patil, Orrin Devinsky¶, Michael Smith#, Andres Kanner#, John T. Davis*, Michael Funke*, Greg Jones*, Brian Chong*, Sherri Provencal*, Michael Weisend**, Roland R. Lee**, William W. Orrison, and Jr, MD*
http://pediatrics.aappublications.org/cgi/content/abstract/104/3/405

Alexian Brothers Hospital announcement

Jeffrey Lewine has just launched a program to see if adolescents with autism spectrum disorders have trouble processing what they hear. He believes that if he can retrain the brain to process auditory information, he can help kids communicate more effectively.  Volunteers are needed for the study.
http://www.dailyherald.com/story/print/?id=254417

The Dynamic Child II: Addressing our Collective Needs

a conference for Children, Families, Teachers, Therapists, Saturday, February 7, 2009

• autism spectrum disorders

• sensory integration dysfunction

• social, emotional, behavioral, and/or learning challenges

featuring

• Carol Stock-Kranowitz, M.A. author of The Out-of-Sync Child Sensory Strategies to Improve Children’s Learning and Behavior”

• Timothy J. Wahlberg, Ph.D., Licensed Clinical Psychologist “Managing Daily Stresses for Parents and Caregivers”

• Allen Weimer, M.S., LMFT, LCPC “Assisting Siblings with their Unique Challenges”

• Sandy Kakacek, M.S., LCPC, Behavior/Education Consultant“Supporting Teachers and Therapists as they Serve the Learning Child”

Presented by Community Therapy Services

Saturday, February 7, 2009
8:30AM- 4:45 PM
Kaneland High School
47W326 Keslinger Road
Maple Park, IL 60151

Learner Outcomes
At the conclusion of this workshop, participants will be able to:

1.  Understand the basics of Sensory Processing Disorder (SPD) and its three major categories: sensory modulation disorder, sensory discriminationdisorder, and sensory-based motor disorders, including postural disorder and dyspraxia.

2. Recognize characteristics of tactile, vestibular, proprioceptive, visual, and auditory processing dysfunction.

3. Demonstrate how SPD interferes with a child's ability to function in typical childhood occupations of learning, socializing, communicating, working, and playing.

4. Prepare new activities and modify existing activities and environments to engage various sensory systems and to improve children's sensory modulation, sensory discrimination, and sensory-based motor abilities.

5. Examine the ways that everyday stresses of caring for and working with children on the autism spectrum affect all those who are involved in the children’s lives.

6. Give examples of ways to manage and reduce stress while caring for, living with, and working with children on the autism spectrum.

contact:

Community Therapy Services
40W310 LaFox Road, Suite 1-AB • St. Charles, IL 60175
(630) 444-0077 / fax (630) 444-0078
http://www.ctspediatrics.com (formerly http://www.commtx.com)

Coverage for Autism Therapy Prompts State Mandates and Lawsuits Against Blues Plans

August 29, 2008

see also the proposed mandate in Illinois, SB1900, below

Imagifriends of Imagiville

My name is D.J. Svoboda. I am the creator of the Imagifriends of Imagiville. The Imagifriends of Imagiville are based on the experiences I have faced during times at school. There were days at school when I was made fun of, and when I was picked on and treated mean. Those made me feel very sad and hurt. That is how I got the idea of the Imagfriends of Imagiville...D.J.

Dads with autistic children get a place to learn, brag and vent
Husband noticed that no men showed up at an awareness group started by his wife.
Chicago Tribune, Sept 15, 2008.By Rex W. Huppke

Help for families visiting hospitals from out of town

Fortunately, there is support for patients and their families who seek medical treatment in Chicago from outside the area. It's a safety net for people who often are living out the worst drama of their lives, and such practical things as a hotel room or a free ride can seem like a godsend.
by the Chicago Tribune, March 30, 2008
From cheap hotel rooms to free rides, patients find crucial help in Chicago

What autism means to a father

www.chicagotribune.com/news/opinion/chi-autism-walker_thinkmay11,0,875460.story
What autism means to a Father

An essay by Robert Hughes of the Chicago Tribune, May 11, 2008

Taking Sides on Autism

www.chicagotribune.com/news/opinion/chi-autism_treatment_thinkmay11,0,2646107.story

A road to recovery?
Questions abound—including whether it is even treatable

By Julie Deardorff

May 11, 2008

"One of my greatest fears is that autism will break into my house and steal my son. It may be irrational, but it's there: He'll wake up one morning and vacantly look through me. He'll lose his words, open and close doors for three hours, or begin screaming, as if in pain.

Then, bam! The child I know and desperately love will disappear into a mysterious world where I can't reach him."

article continues

Illinois Senate Bill 1900 would mandate coverage for autism, 2008

Senators James DeLeo and Skip Saviano introduced SB 1900 to mandate  insurance companies in Illinois pay for speech, OT, PT and evidence-based  therapies for children with autism and autism spectrum disorders. The cap on services is $36,000 annually and it covers children to age 21.  It would apply to private insurers and HMOs, and municipal and medicaid plans, although self-funded corporate plans (under ERISA) would be beyond its power.  To review the bill click: SB1900.pdf
or see the analysis in autism news insurance law update and the highlights of SB1900

The Autism Society of Illinois is sponsoring Autism Lobby Day  in Springfield on April 15,  2008, and urges you to attend
To contact your legislators, follow this link: http://www.elections.il.gov/DistrictLocator/SelectSearchType.aspx?NavLink=1

Researching articles on ABA and other topics

http://seab.envmed.rochester.edu/jaba/
http://www.autismlibrary.org
http://www.abainter national. org/BA/Related_ sites.asp# Journals

Illinois Court allows Thimerosal lawsuit to go forward

In Reilly v. Wyeth, Eli Lilly & Co. et al, no. 01-06-1174, (.pdf) the Illinois Appellate Court allowed the parents of an autistic child to continue their lawsuit against the manufacturers of  Thimerosal.  The parents alleged the child was injured by the mercury-containing preservative in the child's vaccinations.  Their claims against the vaccine makers were dismissed because Federal National Childhood Vaccine Injury Act of 1986 preempted the claims.

Autism Therapeutic School-Waukegan Open House

1401 West Dugdale Road  Building 33
Waukegan, Illinois  60085
Monday, February 25, 2008
Open House 9:30 a.m. until 11:30 a.m.
Plaque Presentation 10:00 a.m.
Refreshments will be served.
Open House/Plaque Presentation

Please join us for our Open House/Plaque Presentation event for our Therapeutic School in Waukegan, an important milestone in reaching our vision to serve more children and adults living with autism in the Chicagoland area. The Plaque Presentation is to honor Senator Terry Link for his support and commitment towards Easter Seals Metropolitan Chicago (Autism Therapeutic School-Waukegan.

Please RSVP by Friday February 22, 2008
To Susan Schladt by Phone, Fax , or email.
Susan Schladt, Social Worker
847-625-2018 Phone
847-625-2985 Fax                                                      
sschladt@eastersealschicago.org

Easter Seals to Open First Rockford Autism Therapeutic School

   (1-02-2008)  Easter Seals Metropolitan Chicago (ESMC), in partnership with the University of Illinois College of Medicine at Rockford, announces the opening of its first Rockford Autism Therapeutic School. The new school serves approximately 60 students ranging from ages 3-22 with a primary diagnosis of autism, emotional behavior disorders and/or learning disabilities, and will operate in the existing Easter Seals Children’s Development Center at 650 N. Main St., Rockford.
      “We’re so excited to invite the community to see our new Autism Therapeutic School,” says Barbara Zawacki, chief operating officer of ESMC. The new school will offer families a variety of specialized programs by extending the services they receive through Rockford’s public schools. Our ultimate goal is to transition these children back into their communities and home schools and help them reach their full potential."
      Students who qualify and live in the Rockford-area school districts, including DeKalb, Boone, Carroll, Jo Daviess, Lee, Ogle, Stephenson, McHenry, Whiteside and Winnebago counties, have the opportunity to receive educational and therapeutic services, including behavior, speech, physical, occupational, art and music therapy. The overall goal of the program is to work collaboratively with each child’s school district until the child can be successfully transitioned back into their community school.

The Rockford project is part of Easter Seals Metropolitan Chicago’s (ESMC) expansion of its autism therapeutic schools program. Additional ESMC autism therapeutic schools are in Chicago, Waukegan and Tinley Park. Easter Seals’ new Autism Therapeutic School Rockford works in collaboration with the University of Illinois College of Medicine in Rockford to provide students with additional support.

The new school will be housed in the Easter Seals Children’s Development Center, making the full-service family facility the area’s premier provider of child care, developmental, therapeutic and parenting support services. Additional services at the center include: teen family support, developmental therapy, pediatric therapy and family support.

Another key part of Easter Seals’ expansion will be centered in ESMC’s Therapeutic School and Center for Autism Research, in Chicago’s Illinois Medical District.

The first phase of the project will be finished in the fall of 2008. Upon completion, the custom-designed campus will provide a full continuum of services for children with autism, emotional behavior disorders and severe learning disabilities—therapeutic school, early intervention, traning, school-to-work transition, independent living facilities—and research capabilities.

Easter Seals Metropolitan Chicago and Easter Seals Rockford participated in a formal RFA process and were each awarded a $200,000 grant from the Illinois Autism Program. This will allow Easter Seals Metropolitan Chicago and Rockford to begin implementation of Regional Service Centers. The primary mission of Regional Service Centers is to provide direct service and support by implementing, evaluating and refining evidence-based programs for diagnosis, treatment, education, training, consultation, resource and support. These centers will include:

• Family/Community Resource rooms

• Developmental screening

• New diagnosis family orientation program

• Daycare/respite training

• Provide training in diagnostics evaluations

• Diagnostics

• Family-focused consultation (functional assessment for treatment planning)

• Social skills groups

• Community planning

Family and Community Resource rooms will contain free visual supports and ideas as well as maintain a large catalog of games and learning aids that can be loaned to parents and providers across the regions. Easter Seals Metropolitan Chicago and Easter Seals Rockford are proud to have obtained this affiliation as formal network partners and look forward to continuation of the project for years to come.

Rockford-area parents of children with autism and school officials are encouraged to call Jennifer Sims at (815) 965-6745 for more information about the new school and to determine whether their children are candidates for these services.

http://www.rockrivertimes.com/index.new.pl?cmd=viewstory&cat=6&id=18663

Is genetic research a gigantic black hole sucking up research dollars on a futile search?

Hello.  My name is Jennifer Currier Tansey, and I am a graduate student in the Genetic Counseling Program at Brandeis University in Waltham, Massachusetts.  For my thesis project, I am conducting a study of parents of children with Autism Spectrum Disorders (ASDs), to assess their interest, experiences and satisfaction with genetic services.  
 
 Many studies have explored parental beliefs as to the cause of ASD in their child and found that the majority of parents believe genetics to play an important role.  However, no studies have explored the actual experiences of these parents with genetic services.  Through this study, I hope to highlight the utility of genetic services in the care of individuals with ASDs and identify areas of opportunity in the education and clinical managment of patients and families with ASD.  The ultimate goal is to promote movement toward a parent responsive standard of care for genetic managment in ASD, which results in informed and positive family experiences.
 
 Participation in the study is voluntary and involves completing a brief online survey (posted on surveymonkey.com) and an optional personal telephone interview with myself.
 
 Thank you in advance for your time in considering this study.
 
 Jennifer Currier Tansey

The last chance to comment on the Illinois State Board of Education proposed changes to the regulations is:

September 12, 2006, 6:00 p.m. to 8:00 p.m.
Michael Bilandic Building, Room C-500
160 North LaSalle St.
Chicago, Illinois

The proposed changes to Part 226 are available online at

http://www.isbe.net/rules/proposed/pdfs/226wf.pdf

For further information, please contact Illinois State Board of
Education, Special Education Services - Springfield at 217-782-5589.

The public comment period ends Sept. 15, 2006 for Illinois' adoption of new state special ed regs to comply with IDEA

One proposal you may wish to bring up is the right to tape record IEP meetings. The regulations in Illinois are silent about it. A District can have a policy against it. The policy would be improper if tape recording was necessary to accomodate a parent with a disability or if the policy is applied only in Special Education meetings and not meetings involving nondisabled students.

Permitting tape recording could discourage school districts from bad behavior during IEP meetings and keep them honest, for an overall improvement in special ed procedure.

Policies must be adopted by a duly authorized governing board.OSEP once wrote that a policy that requires, prohibits, limits, or
otherwise regulates the use of recording devices at IEP meetings may be adopted by an SEA or a public agency. A District must be able to produce all written policies that relate to the use of recording devices at IEP meetings, and a copy of the minutes of the board meeting at which the policy was adopted. In the absence of such a properly adopted policy, the administrator who has adopted a practice in the absence of policy, where such policy is required in order to ensure that it is uniformly applied, has IMHO, at the very least overstepped his/her authority and usurped the prerogative of the duly authorized board which is accountable to its constituents.

In any event, having a regulation permitting recording would prevent arguments whether it is allowed or not.

Law Boosts Insurance Coverage For Autism in Illinois

http://tinyurl.com/lqjql

     A bill requiring insurance to pay for additional therapy for autistic children each year became law Friday.
     Gov. Rod Blagojevich signed the bill, which takes effect immediately, to expand coverage for children with disabilities, officials said. It mandates 20 more speech therapy sessions a year covered by group plans and requires insurance to pay for treatment of pervasive developmental disorders, officials said. It applies to private and governmental insurance carriers.
     House Bill 4125 mandates that private and government insurance plans pay for an additional 20 speech therapy sessions every year for developmentally disabled children. The measure sponsored by Rep. Mary Flowers (D-Chicago) and Sen. Susan Garrett (D-Highwood) provides financial support and assistance for families raising autistic children.      "The parents of autistic and developmentally disabled children face enough challenges already.
     Figuring out how to pay for treatment shouldn't be one of them," said Gov. Blagojevich. "New treatments are available to help autistic children and in Illinois, we're going to make sure that insurance covers them."
     The law takes effect immediately, and as plans are renewed over the course of the next year, the additional coverage will be included in the new policies.
     "Speech therapy is one of the most effective ways to help children with autism," Sen. Garrett said. "It is essential that they receive
sufficient and appropriate treatment at an early age to ensure the development of necessary communications skills."   

Is Catbert trying to ruin your job?

The Seventh Circuit Court of Appeals in Chicago used Catbert from the Dilbert comic to illustrate how an employer may be illegally discriminating against parents with children with disanilities.  This new development in the law could help you keep your job.
Using the ADA for Parents of Children with Disabilities (new)

Other Legal Articles for Parents of Children with Disabilities from the Stepnowski Law Library

Introduction to deducting medical expenses
About Tax Credits
One example: can you deduct the cost of diapers for your child with Disabilities?
Analyzing the Illinois Education Credit
Deducting the cost of special schools
Freedom of Information Act

New law  allows school districts to claim state reimbursement when they retain board-certified behavior analysts

Many behavior analysts specialize in autism and ABA programs. This law will provide more of our kids access to special education programs supervised by those most qualified to oversee ABA and related programs. Bring this law to your school districts' special education administrators attention, and maybe they will cooperate for a change.
Public Law 94-0948, amending section 14-1.10 of the School Code (105 ILCS 5/14-1.10)

What should an IEP contain:

While the Illinois legislature is forcing the Illinois State Board of Education to water down its regulations, the State of Massachusetts is actually requiring IEPs to contain meaningful content.  Massachusetts House Bill 1123  adds:

Whenever an evaluation indicates that a child has a disability on the autism spectrum, which includes autistic disorder, Asperger’s disorder, pervasive developmental disorder not otherwise specified, childhood disintegrative disorder, and Rhett’s Syndrome as defined in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV, 2000), the IEP team shall consider and shall specifically address the following:

• the verbal and nonverbal communication needs of the child;

• the need to develop social interaction skills and proficiencies;

• the needs resulting from the child’s unusual responses to sensory experiences;

• the needs resulting from resistance to environmental change or change in daily routines;

• the needs resulting from engagement in repetitive activities and stereotyped movements;

• the need for any positive behavioral interventions, strategies, and supports to address any behavioral difficulties resulting from autism spectrum disorder;

• and other needs resulting from the child’s disability that impact progress in the general curriculum, including social and emotional development.

4th Annual Rally for Autism

The 4th Annual Rally for Autism is just one month away! Whether you are a
competitive runner or just a leisurely walker, come and join us Saturday August
19th at 9:00 a.m.at beautiful Independence Grove in Libertyville for a
morning of fun supporting a great cause!

Bally Total Fitness will be sending their warm-up team and will be awarding
1 year memberships to the top men and women finishers! WXLC Radio will be
broadcasting live from the event and Sara Lee will be providing plenty of food
for all! Awards will also be given for the top 10 fundraisers!

Registration is available online at www.signmeup.com/53581. I can also email
you a race brochure via pdf or through snail mail. Contact me via email at
Rally4autism@aol.com for additional information, to advertise or volunteer.
Not-for-profit organizations can exhibit at our resource fair for no cost.

Thanks for helping make year 4 the best yet!

Eric L. Smith
Race Director-4th Annual Rally for Autism

Man's brain rewired itself after crash severed nerve connections

MILWAUKEE, Wisconsin (AP) -- Doctors have their first proof that a man who was barely conscious for nearly 20 years regained speech and movement because his brain spontaneously rewired itself by growing tiny new nerve connections to replace the ones sheared apart in a car crash.

Nerve cells that have not died can form new connections; for example, nerves in the arms and legs can grow about an inch (2.5 centimeters) a month after they are severed or damaged. However, this happens far less often in the brain.

The new research suggests that instead of the sudden recovery Wallis seemed to make when he began speaking and moving three years ago, he actually may have been slowly recovering all along, as nerves in his brain formed new connections at a glacial pace until enough were present to make a network.

http://www.cnn.com/2006/HEALTH/07/03/brain.recovery.ap/index.html

While this case did not involve autism, it does lend hope that the brain can rewire itself to recover the language autistic children had before regression.  Dr. Baxter Lewis of UCLA has conducted much research in rewiring the brain.

Rating the Congress
One website takes a stab at rating Congressional representatives from the view of autism.
http://autismfacts.com/services.php?page_id=84
Please review this listing and contact the author on how your representative did or did not advance the cause.

Easter Seals announces pioneering autism $24 million school and research center

With the stated dream of someday curing autism--a disease being diagnosed in rapidly increasing numbers--Easter Seals Metropolitan Chicago on Thursday announced plans to build a $24 million school and research center on 3.4 acres of land donated by the city.

Organizers say the 86,000-square-foot facility at Damen Avenue and 13th Street will be the first of its kind in the U.S. to integrate education, academic research, early intervention programs and training to prepare patients for work and independent living.

story from Chicago Tribune continues

Hi,
My name is Sara.  My youngest children ages 5 and 4, struggle with autism, apraxia, ADHD, and speech delays.  I belong to the Spectrum of Volusia County, which is a support group for autism.  They have been wonderful.  As a mom, and former special education teacher, I only want to enable my sons to communicate to the best of their ability.  Since there was nothing on the market, I developed a series of vocabulary computer software programs for my boys.  It was a labor of love, as I needed effective tools to teach my boys words with meaning.  Both showed interest in the computer, but didn't know how to use the mouse.  I designed the software, so they would only have to press the spacebar, to work the computer program on their own.  The programs are based on nursery rhymes, holidays, and birthdays.  Previous to their using the programs, they hadn't a clue about any holiday (including Halloween and Christmas!), birthdays, nursery rhymes, etc.  If anyone in your group is interested in looking at my programs, please go to www.Hiyah.net

Thanks,
Sara

State Legislature considering diluting due process rights.

An Illlinois  Senate bill has passed which will limit parent's abilities to address violations of due process by school districts. Please call your legislators and tell them to vote against Senate Bill 2796, sponsored by  Miguel del Valle and Calvin Giles.

Department of Education supports the Professional Development in Autism Center

The Professional Development in Autism Center (PDA) provides training and support for school districts, families and communities to ensure that students with ASD have access to high quality, evidence-based educational services in his or her local school district.
Principles:

• Students with ASD are entitled to be provided with meaningful access to the general education curriculum. 

• Students with ASD are entitled to educational programs based on the best available evidence.

• Interventions based on behavioral principles are the cornerstone of an educational program and should be individualized to produce relevant outcomes.

• Intervention and educational programs should be evaluated on the basis of measurable outcomes that are meaningful from the perspective of the student and his/her family and the educational team.

The PDA Center has 6 sites located around the country that provide training and support to schools and families in providing services for students with ASD.

The big news on this Dept of Ed site is its publication of Dr. Glen Sallows (Madison, Wisconsin) Lovaas replication results:
 Intensive Behavioral Treatment for Children With Autism: Four-Year Outcome and Predictors .(pdf)

NEA issues Guidelines For Teaching Children with Autism

Charles Fox in his Special Education Blog reports that the National Education Association has produced a new book on teaching children with autism:

"On many issues the NEA takes positions that are adverse to the interests of special education students particularly regarding behavioral protections.  Recently, however, the NEA has come out with guidelines and an overview for working with children with autism.[ Download NEA Autism Guidelines.pdf ] While it is by no means as authoritative as other texts, the fact that the NEA has officially endorsed these guidelines has an undeniable authority that schools would be hard pressed to dismiss. The document from the NEA is entitled "The Puzzle of Autism".  It appears to be geared in large part for the general educator, and  appears to be premised on the concept that children with autism can be taught in inclusive settings."

see http://specialedlaw.blogs.com/home/2006/03/nea_guidelinses.html#more

The Ten ThingsThe Student with Autism Wishes You Knew, By Ellen Notbohm

The Ten Things The Child with Autism Wishes You Knew by Schafer

The importance of enrolling in P.U.N.S

We in the autism community need to get our kids (young and old) signed up for the PUNS database so they can start getting services from the state.  We are working hard to get a children’s waiver set up, and next year is the adult waiver renewal.  No one gets services in Illinois unless they are on the PUNS database, and currently only 400 or so kids with autism are listed there, even though there are more than 8000 counted by the schools (and even that’s an under count).  The adults are counted in higher numbers, but we don’t know how many are out there, so it is likely they are vastly undercounted as well.

Below is an idea for you to run past your local PAS agencies: sponsor a night at a local school to allow parents to get signed up, after work hours.  Call your ISC/PAS agency and run the idea past them.  If they are not open to the idea, let me know and I’ll get them opened to it.  We’re thinking of setting them up in April (Autism Awareness Month) and we need your help to get your local groups involved.

We need everyone on this database ASAP, and this seems like a great way to get people to do it.  Please do whatever you can to set this up and encourage people to get on that database.  For more information, read the attached explanation and take a look at the form that the PAS agencies fill out.
Thanks,

Autism Society of Illinois
2200 S. Main Street, Suite 317
Lombard, IL 60148-5366
630-691-1270 Phone
630-888-1270 Toll-Free
630-932-5620 Fax
www.autismillinois.org

For details of PUNS see this file: http://groups.yahoo.com/group/AutismNews/files/PUNS.rtf

The Division of Developmental Disabilities has set up a system to determine needs for services/supports, a "cross-disability database called the Prioritization of Urgency of Need for Service (PUNS). You NEED to get on this waiting list for services.

Call your local PAS (Pre-Admission Screening) agency and get your child (young or old) into that database, even if they tell you that you are not eligible for their services--that is the whole point!! They have to count you and consider you for services--including future services.

A Message from Family Support Network to contact your legislators:

Exciting progress is being made on legislation that will create a “Waiver” to provide services to families that include CHILDREN with disabilities in Illinois.

After THREE years of no new funding for supports for families that include children with disabilities, this is VERY EXCITING!! Momentum is building as a result of the important work of the Autism Task Force. You can read that report at http://www.dhs.state.il.us/AutismTaskForceReport.pdf

As important as that report is, as you read it you will find yourself thinking, “Wait a minute, all kids with disabilities need supports and services like that!” We agree! The Family Support Network, The Arc of Illinois and all the members of the “Do the Right Thing Coalition” have been working with members of the Task Force and the Autism Society to create a new program of supports and services that ALL children with significant developmental disabilities including Autism will be able to access.

The Illinois General Assembly is in session now!! We need your help NOW!

Please contact your legislators. By phone, by letter, by e-mail, tell your story!!

Ask them to support legislation to support a NEW waiver that provides services to children with developmental disabilities including Autism. There are two bills being run at the same time. Ask them to sign on as a co-sponsor. This is a very strong indicator of their support.
 

• Tell them about your child

• Tell them about the needs of your child and your frustration providing for those needs.

• Tell them how disability has impacted your life and how this waiver could help.

Senators John Cullerton and Susan Garrett are the Chief Co-Sponsors of Senate Bill 2415.

Our great friend, Representative Lee Daniels, is sponsoring a similar bill in the House! It’s not been assigned a bill number yet.

 You can identify your Representative Senator at http://www.elections.state.il.us/DistrictLocator/AddressSearch.aspx. You can also access their contact information there.

You can track the bill’s progress and growing list of co-sponsors at http://www.ilga.gov/legislation/BillStatus.asp?DocNum=2415&GAID=8&DocTypeID=SB&LegId=23218&SessionID=50&GA=94

Some things the waiver could provide are:

Applied behavioral analysis therapy, or an analogous habilitative methodology, parent/care giver education, social skills training, in-home supports.
respite, occupational, physical, and communication therapy (in excess of or not duplicative of the basic State Medicaid Plan services), environmental modifications to the home, including but not limited to (i) technological aids to assist with the individual’s safety and security and (ii) therapy or habilitation supplies and equipment needed for implementing the service plan, transition services to employment, transition services to independent living, individual service coordination, day care, crisis services, 24 hour emergency services, specialists, other assistive technology.

The Family Support Network is also supporting the agenda of the Do the Right Thing Coalition!
That agenda includes new funding for the Family Assistance and Home-Based Support Services Programs and increased community living opportunities like Community Integrated Living Arrangements. Check it out at http://www.familysupportnetwork.org/2006%20Do%20the%20Right%20Thing%20Agenda.pdf
Are you willing to contact other families in your community to write letters or visit your legislators together?
We need help with these efforts!!
Please contact us!! 309-693-8981 or fsn@familysupportnetwork.org
Let us know about your progress! We’ll be keeping you up to date with ours!
Remember, “We can grumble and groan. We can shake our fists at the priorities of the state of Illinois. But, if we don’t take time to tell our stories, who do we have to blame? Only ourselves.”
Charlotte

The Elizabeth Birt Memorial Fund for Truth and Love
has been established at the Thoughtful House Center for Children.

The memorial fund established at Thoughtful House has two objectives. First, it will support research into the causes of and treatment for autism
and related disorders. Liz had been convinced from the beginning of her own investigations that science would eventually reveal the truth as to what caused her son's autism and treatments that would help the hundreds of thousandsof other children, many of whom are locked in a sort of cognitive and communicative prison, as well as suffering from a range of gastrointestinal and metabolic symptoms. The fund will also help families in need pay for desperately needed clinical care.

The Thoughtful House
Liz Birt Memorial Fund
3001 Bee Caves Road
Austin, TX 78746

Information from obituary in KC Star

----------------------------------------------

*NAA* has set up a spot to memorialize Liz at:

http://www.nationalautismassociation.org/liz/liz.htm

Discrete Trial Software

Mouse Trial is a software package based on the Discrete Trial Method.
This site provides good information about the method and autism, and provides the software online or on CD.

Features:

•     A variety of different contrasting kinds of trial in each module.

•     Great animations. A powerful "reinforcer" for autistic kids (and others!)

•     Play online! -always up to date and nothing to "install".

•     Download whenever you want. We regularly add new animations and modules.

•     Select which images are available for each type of trial.

•     Choose how many images appear in the array for each type of trial.

•     Automatically keeps score of hits/prompts/misses for each individual trial.

•     Keeps count of the overall results and number of trials. Handy for program records.

•     You can use your own photos and pictures in place of the supplied images.

•     You can use your own voice files in place of the supplied ones.

-------------------------------------------------------------------------------------------------------

Discrete Trial Trainer

I am Karl Smith, father of an autistic son. I have created software to help children like my son. The program incorporates powerful behavioral principles to get even children that require one-on-one instruction to usually become independent learners on the software. It is quite customizable to accommodate various types of educational approaches as well as individual differences. The program complements various educational programming and interventions. The program is used widely with individuals with autism, other learning disabilities, and even typically developing children. Frequently in home situations, the young siblings of our target child will also like to use the software giving great role models and a sense of belonging for our target child.

This is a large program with over 125 content programs and hundreds of selectable reinforcers to motivate our kids. There is a wide range of potential reinforcers to engage even the most difficult to motivate individuals. You can even add your own child specific reinforcers. The content is in the developmental range of 2 to 8 years old and can work with even very low functioning individuals to typically developing but young children. Older children or adults that are severely delayed frequently respond to the software since we do not baby the student. How juvenile the software looks is dependent on the reinforcers picked for the student so that the software can accommodate very young children to severely delayed adults.

So that most families can afford the product, I only charge $99 for the home license and there is a $10 trial. This is incredibly cheep for such a huge product but it needs to be inexpensive to allow most of our kids to get access to it. Since most even very low functioning children can use the software independently, the program can deliver many thousands or even tens of thousands of dollars of equivalent education. I price the software to not compete with money needed for other services and treatments. My mission is to create effective but also affordable tools to help individuals with autism and other learning disabilities.

The software collects data for reports to easily determine the effectiveness with a specific child. For a $10 home trial, it is virtually free to try the software. The $10 covers our shipping and handling costs and applies to the full price if purchased within 60 days.

Early study shows Namenda may be effective aid in treating for autism

August 2010: Namenda autism clinical trial at Alexian Brothers Behavioral Health Hospital

Alexian Brothers Medical Center
Contacts: Phil Carona, Tiffany Ream, Claire Tessman
1786 Moon Lake Blvd., Suite 200
Hoffman Estates, IL 60169
(847) 230-3591 (Phil)
(847) 230-3567 (Tiffany)
(312) 996-6746 (Claire Tessman, study coordinator)
Clinical research trial for autism will assess the effect of an investigational medication on social interaction and communication skills in children with autism. The University of Chicago (Fedra Najjar, MD) now recruiting patients for study. Contact Claire Tessman.
Ages: 6-12.
Cost: Eligible participants receive study medication, comprehensive study-related evaluations, diagnosis and close follow-up with experienced physicians. A stipend is provided for transportation, lab work, an H&P and psychiatric evaluation free of cost. Study involves 8 visits over the course of approximately 14 weeks.

Old story:
The Child Neurology Society (CNS) met in Ottawa in October 2005. The CNS has about 1,300 members, mostly child neurologists in academic and private clinical practice.

Dr. Michael Chez of Illinois presented a study of the use of the new drug memantine in 30 children with autism. This drug, marketed under the brand name Namenda, has been approved in the US for the past 6 months to treat the memory dysfunction associated with Alzheimer's disease. The parent ratings were quite positive, with 26 out of 30 parent questionnaires suggesting improvement in attention, motor planning, language, and self-stimulatory behavior. There were no side effects reported. Dr. Chez is also scheduled to report the use of memantine in children with seizures in a separate presentation to the American Epilepsy Society in December. Those children, some of whom presumably had autism as the cause of their seizures, showed improvements in the numbers of their seizures and also in behavior.

Although these 2 studies were not conducted in a blinded fashion , the results are encouraging, and suggest that this medication may be very useful in children with autism, with or without a seizure disorder. In addition, no lab tests are needed to ensure safe use. Some of the antiseizure meds, such as Depakote, require periodic blood test monitoring to ensure safety.
(Info provided by Autism Society of Maine.)

New references:
Chez M, Hing P, Chin K, Memon S, Kirschner S. (2004). Memantine experience in children and adolescents with autism spectrum Disorders. Annals of Neurology, 56, (S8).

Current Clinical Neurology, 2009, Part II, 133-145, DOI: 10.1007/978-1-60327-489-0_6, Excitotoxicity in Autism, The Role of Glutamate in Pathogenesis and Treatment Martin Evers and Eric Hollander

Patent application title: Use of Memantine (Namenda) to Treat Autism, Compulsivity and Impulsivity
Inventors:  Eric Hollander Chicago, Mt. Sinai Hospital, Read more: http://www.faqs.org/patents/app/20080249082#ixzz0zhgijkdA

On April 19, 2005, the Wall Street Journal reported success in treating Downs Syndrome children with Alzheimer's Drugs Aricept and Exelon. (page D-1.)  Gains were especially noted in expressive language. 

Our own informal poll of parents of children with autism and Landau-Klefner Syndrome also showed they noticed their children's speech had some improvement when prescribed Namenda.

Report of the Illinois Autism Task Force: Findings and Recommendations

Given the impact of ASD on families across the state, the Illinois Department of Human Services (DHS) led the development of a multi-agency Autism Task Force on April 27, 2004. DHS recruited parents of children and adults challenged by ASD, representatives of State agencies, healthcare professionals, service providers, academic professionals, and members of the legislature to serve on this task force.  It has submitted a report of the Autism Task Forces’s findings and recommendations to the Governor and General Assembly by September 1, 2005.    The State agencies will continue to consult with the Autism Task Force as they develop priorities and develop an implementation plan to reflect that report.
 

Conclusions

Autism is a severe disability requiring intensive and expensive intervention and treatment.  As a neurodevelopmental disorder traditionally classified under mental health conditions, Autism has not fit within established programs.  Current services are inadequate to meet the needs of either the adult or childhood Autism populations in Illinois.  The rapid rise in identified cases of children with Autism in the past several years has exacerbated these problems and poses a looming disaster for the State and its families if not addressed immediately.  Past legislative and administrative approaches to Autism have been piecemeal and of limited effectiveness.  Gaps in funding are often left to be filled by parents, when possible, typically at great sacrifice and with a concomitant toll on families; more often, individuals with Autism simply go without necessary care.  It is imperative that Illinois’ policymakers act with the same sense of urgency as that of parents seeking help for their affected children and that the product of this Task Force not be relegated to the heap of past promises and missed opportunities to build a system of services and supports for our citizens.

Download Report

or here
Senator Dan Cronin stated at the Senate hearings, see below, now that there is a report, the Senate has something with which to base proposed legislation.  Thank you to everyone who did the work.  Maybe the State of Illinois can reverse its next-to-last place finish and provide a decent home to families, with an autistic member.

Autism One Conference

http://www.autismone.org/homepage.cfm

New source for equipment, news and links.

"Autismsuperstore.com was created with the intentions of helping promote autism awareness and offering affordable (often hard to find) therapy products.  Many of the items have been beneficial in the treatment with my son.  I have created this website to enable people to have one place to come, for just about anything they may be seeking, to aid in the education and development of a child with ASD (Autism Spectrum Disorder).

I have a 2 yr old son with Autism and have often become frustrated searching for that perfect toy or favorite therapy item.  I started my store with some of the items I found beneficial in working with my child.  During research I found some great movies dealing with the subject of Autism.  The links page includes some of my favorite websites with great resources.  The conferences page includes some conferences of great interest to me and which I plan on attending, myself.

My plan was to create a place where families, educators and therapists could go to find some great sensory toys, books, videos, autism awareness items, and common therapy products used with children affected by an Autism Spectrum Disorder. "

Atkins Diet for Autism and Landau-Klefner Syndrome?

It is well known that children with autism experience a high rate of seizures.  Sometimes the seizure activity is not readily apparent because it does not affect the motor control areas of the brain but the language centers. Moreover, most of the spikes in brain activity occur at night when the brain is usually wiring language. Research has shown significant gains in language acquisition when the seizures are controlled.  Many neurologists use valproic acid, depakene, depakote or other medications to control the seizures.  However, to reduce the side effects, many parents have opted instead for the Ketogenic diet, which eliminates carbohydrates.  Sounds a little like Atkins?

Dr. Kossoff of Johns Hopkins has an article he has done presenting the results of his study using the Atkins Diet for seizure control will be published in the February Issue of Epilepsia. He will also be doing a presentation to the American Epilepsy Society at the their meeting in DC in December.

More on seizures:

Autism: Electroencephalogram Abnormalities and Clinical Improvement with Valproic Acid
By Audrius V. Plioplys, M.D.
Archives of Pediatrics and Adolescent Medicine  Feb.1994, Volume 148
Documents  three  sample case studies of children who demonstrated marked, measurable improvement after a trial period of valproic acid.

Acquired Epileptiform Aphasia
By  Roberto F. Tuchman, M. D.
Department of Neurology,  Miami Childrenís Hospital,  Solomon Klein Pavilion, 3200 SW 60 Ct., Suite 302, Miami, FL  33155.
Elaborates on the 3 different acquired epileptiform aphasias ( Landau-Kleffner Syndrome,  autistic epileptiform regression, and disintegrative epileptiform regression)  that may be affecting up to one third of all children diagnosed with  a pervasive developmental disorder.  (Source for statistic:  Tuchmanís own presentation on November 15, 1997 in  Rockville, Maryland.  Other neurologists have  mentioned a range from 25% to 40%.)

Treatment of Electroencephalographic Epileptiform Activity on Overnight EEG Studies in Children with Pervasive Developmental Disorder or Autism: Defining Similarities to the Landau-Kleffner Syndrome
By Michael G. Chez, M.D., Cathleen Buchanan, M.A., Michelle Field-Chez, M.D., Maurice F. Loeffel III, B.S., and Michael S. Hammer, M.D.
The Journal of Developmental and Learning Disorders, Vol. 2 No.2, 1998, pp. 217-229.

This article reviews the 278 children  with PDD or autism who were referred to Dr. Chez for an overnight Digitrace EEG to check for acquired epileptic aphasia or LKS; includes treatment results of those children whose abnormal overnight EEGís warranted medical treatment. Concludes that ìour experience and recent reports show that early diagnostic testing with prolonged sleep or overnight EEG data collection is critical to the identification of partially or fully treatable conditions in children with PDD or autism.

Lewine J, Chez M, Andrews R, et al. Neuromagnetic evaluation of children with acquired developmental aphasia. Epilepsia 1997;38:128

more articles: http://trainland.tripod.com/epilepsy.htm

OSEP has developed a series of topic briefs

around several high-interest areas of IDEA. Topic briefs include a summary of all relevant statutory language around that topic, the citations and a cross-reference, when applicable, to other related briefs.

   * Alignment with the No Child Left Behind Act
   * Changes in Initial Evaluation and Reevaluation
   * Children Enrolled by Their Parents in Private Schools
   * Discipline
   * Disproportionality and Overidentification
   * Early Intervening Services
   * Highly Qualified Teachers
   * Individualized Education Program (IEP), Team Meetings and Changes to the IEP
   * Individualized Education Program (IEP)
   * Local Funding
   * National Instructional Materials Accessibility Standard (NIMAS)
   * Part C Amendments in IDEA 2004
   * Part C Option: Age 3 to Kindergarten Age
   * Procedural Safeguards: Surrogates, Notice and Consent
   * Procedural Safeguards: Mediation and Resolution Sessions
   * Procedural Safeguards: Due Process Hearings
   * Secondary Transition
   * State Funding
   * Statewide and Districtwide Assessments

    http://www.ed.gov/policy/speced/guid/idea/idea2004.html
OSEP also has fact sheets on various topics, see below

March 2006: Update The U.S. Department of Education issues Guidance after the 2004 amendments

Autism Society of America Postage Stamp Now Available!

Wednesday, August 17, 2005

The Autism Society of America (ASA) announces the creation of ASA postage stamps, now available for purchase on the ASA Web site in the ASA Store section.

The $0.37 U.S. Postal stamps, one featuring ASA's 40th anniversary ribbon logo design and one promoting ASA's new branding efforts with the new logo design, are sold in sheets of 20 stamps per sheet at a cost of $20.Proceeds to Benefit ASA Endeavors

Show your commitment to ASA and autism awareness by ordering the new stamps today! Every purchase you make helps support ASA and its mission. They make a unique and meaningful gift to family and friends, and reflect your dedication on each piece of mail you send by helping to “get the word out!”

The documentary, "The Hope and Heartache of Autism," will re-air thisFriday, September 23rd, at 6:30 PM on PBS, WYCC-TV (Channel 20 in Chicagoarea).  This 30-minute documentary covers various aspects ofautism and focuses on Illinois families.  It was produced by Phil Stuart andhis colleagues at Northwestern's Medill School of Journalism.

If you are not able to see it, copies areavailable for purchase from the Autism Society of Illinois: send an e-mailto info@autismillinois.org.
You can also see it on this website: http://www.medill.northwestern.edu/medill/inside/student_work/broadcast_program.html

Illinois Enacts  the Mercury-Free Vaccine Act.

Public Act 094-0614
     Section 5. Banned mercury-containing vaccines.
    (a) Commencing January 1, 2006, a person shall not be vaccinated with a mercury-containing vaccine that contains more than 1.25 micrograms of mercury per dose.
    (b) Commencing January 1, 2008, no person shall be vaccinated with a vaccine or injected with any product that contains, or prior to dilution, had contained as an additive, any mercury based product, whether at preservative or trace amount levels.

Illinois enacts the The Autism Spectrum Disorders Reporting Act

Public Act 94-632

Thank you to all who helped lobby for this Act. August 19, 2005.

(b) It is the purpose of this Act to establish a unified statewide project to collect, compile, and correlate information on public health and autism spectrum disorders, to be known as the Autism Spectrum Disorders Registry. The information is to be used to assist in the determination of public policy and to provide a source of information for researchers and the public, except when public disclosure of the information would violate the provisions of this Act and other applicable laws concerning confidentiality.

(c) In particular, the purpose of the collection of autism spectrum disorder incidence information is to:
(1) monitor incidence trends of autism spectrum disorders to detect potential public health problems, predict risks, and assist in investigating clusters;
(2) more accurately target intervention resources for communities and patients and their families;
(3) inform health professionals and citizens about risks, early detection, and treatment of autism spectrum disorders;
(4) promote high quality research to provide better information for the study of autism spectrum disorders, treatment,  nterventions, and services, and the impact of autism spectrum disorders on families, schools, public health, and the economy; and
(5) promote Illinois as a national leader in research into the causes, effects, and treatment of autism spectrum disorders.

ComputerBank has free computers

•  Does your child receive services from Special Education or Has tested 2 years behind in reading or math?

•  Does your household have limited income and no computer at home?

 If you have answered yes to the above questions, your child may be  eligible to receive a computer for their home.  These Pentium computers  are loaded with licensed Windows, a word processing program and a text  reader program with an eighty-volume library (k-12).   This orientation  will discuss:

• Basic computer usage and care

• How computers can help with learning challenges

• Possible system additions

• Resources for free computer training

Call Computer Banc at 217-528-9506 to register for this  required session.  Registration is limited.

Families are requested to contribute on a sliding scale toward the $70.00 refurbishing cost.   Two trips to Springfield may be required.  Computer Banc is a Springfield, Il, volunteer, not-for profit, program.
Check the web site for more information:  http://www.computerbanc.org

 Family Orientation: May 11, 2004   &  July 21, 2004  6:00 - 7:30 p.m.

Cool stuff for autistic and NT kids

OK - I just checked this out and this site is COOL! I clicked on "cool stuff" and "gross stuff" and snorted
with laughter - as will my kids and my other family members come Christmas time, as I fill stockings with
the oddball, nifty items Carrick has rounded up from who-knows-where. I certainly have never seen a cute,
stuffed Ebola virus toy in the stores before (ok, possibly not the best example to share, but my sister
is getting this for Xmas :-)

The site is at http://www.ozmofun.com

Neither AutismNews or MFH2 gets any kick-backs for endorsing this site (gosh darn it!).

The Arc says to watch for  $2500 Consumer Stipends And The Importance of PUNS

In the not to distant future, there will be about $350,000 available for one-time consumer & family support stipends. Criteria for the stipends are not yet finalized. The maximum amount of a stipend will be up to $2,500.00. Attention will be given to geographic distribution. The two main priorities for the stipends are goods and services that improve the independence, productivity, and community integration of the person with a disability; and goods and services that increase the stability of the family unit and assist the family in supporting the person with a disability in the family home.

The catch is that in order to qualify for one of these stipends, you need tobe signed up on the Illinois Prioritization of Urgency of Need for Services (Illinois PUNS)!

The fact is that all future services/supports or changes in services/supports will be through the PUNS database. The PUNS database is for infants, children, adolescents and adults.

• You need to sign up for PUNS to get the one-time stipend.

•  You need to sign up for PUNS to get after school respite for your school-aged child.

• You need to sign up for PUNS if you are going to require employment or day services after special education.

•  You need to sign up for the PUNS if you need or want a community living opportunity.

To register for the PUNS, you must contact the local Individual Service Coordination Organization in your area. If you do not know who that is, you can call the Illinois Life Span Project at 800.588.7002 or visit their website www.illinoislifespan.org <http://www.illinoislifespan.org/>

The Illinois Department of Human Services (DHS)  is implementing a statewide process to determine the number of developmentally disabled Illinois residents who are in need of services.

The PUNS process (Illinois Prioritization of Urgency of Need for Services) will allow Illinois to establish a database of developmentally disabled individuals and also prioritize their need for services. DHS has hired a consultant, Ms. Celia Feinstein, to oversee this process and initiative. She has been very successful in five other states in obtaining additional funding. The process involves completion of a PUNS form. The form is to be completed with a face to face conversation with the individual to be served, and the individual’s guardian, primary care giver, or parent and the individual’s PAS agency. If you don’t know your pass agency visit www.dhs.state.il.us/OfficeLocator/ or call: Springfield: 217-524-0260 or Chicago: 312-814-2735.

The PUNS initiative is for developmentally delayed individuals of all ages and its purpose is to establish an accurate database. It is the first step in establishing a list of who needs what service. It is important to remember that “inclusion in the database does not assume eligibility for services or guarantee the receipt of services.” Since DHS has been given the opportunity to collect this data, contact your PAS agency to obtain further information and determine your next step.

For further information, contact the Illinois Life Span Project: 800.588.7002 or Mike@IllinoisLifeSpan.org
Thanks to Tony Paulauski for this info!

The Arc of Illinois
The Arc of Illinois is committed to empowering persons with disabilities to achieve full participation in community life through informed choices. The Arc of Illinois distributes for the Illinois Council on Developmental Disabilities about $100,000 in consumer stipends for individuals with developmental disabilities and family members. The Arc Convention and many other events are eligible for these stipends. If you are interested, call The Arc at 708.206.1930 for stipend information and an application.
708.206.1930
TonyPaulauski@aol.com

Illinois Life Span is the statewide information and advocacy coordination system for people with developmental disabilities.

Upstate Special Recreation Association hits roadblocks in Elgin

When Elgin’s Jane Shover Easter Seals could no longer provide special recreation opportunities, parents of disabled children and volunteers took matters into their own hands.

They started a nonprofit association of their own in August, the Upstate Special Recreation Association. Operating solely on donations and fund-raisers, the organization grew from 50 to 125 participants from in and around Elgin and offered everything from bowling, basketball, Special Olympic training and karaoke night. 

But because the city of Elgin provides traditional recreation programs, it also is obligated to pay for comparable services for the disabled, according to the Americans With Disabilities Act.

The Upstate group members said they hoped the city would pay them to run the services. But in February, the group suspended its programs after learning city staffers were leaning toward the Northern Illinois Special Recreation Association instead.
Stories continue from Daily Hearald and Elgin Courier

U.S. Department of Education announces fact sheets on the IDEA 2004 amendments and NCLB:

Pdf versions: http://www.wrightslaw.com/idea/
Word versions : http://www.nichcy.org/idealist.htm

List of OSERS papers

Example: Fact sheet on Changes to IEP laws:

1. Changes regarding present levels of educational performance.

• IEPs must include:

o Present levels of academic achievement and functional performance; and
o A statement of measurable annual goals, including both academic and functional goals

• IEPs must include a description of benchmarks, or short-term objectives only for children
who take alternate assessments aligned to alternate achievement standards.  ...

3. Changes to annual goals.

• IEPs are required to include: A statement of measurable annual goals, including academic and functional goals.

4. Changes to measuring progress and reporting.

• IEPs are required to include:

o A description of how the child's progress toward meeting the annual goals will be measured; and
o A description of when periodic progress reports will be provided to the parents.

• Reporting may include: Quarterly reports; or Other periodic reports concurrent with issuance of report cards.

5. Changes to statement of services.

Adds to the statement of the special education and related services and supplementary aids and
services, for the child or on behalf of the child–that they be based on peer-reviewed research, to the
extent practicable.

Ask an Aspie at Odds & Friends

Odds & Friends, the Asperger's and High Functioning Autism Society of the University of Chicago, is trying to let people know about a new service that we're offering to parents of children on the autism spectrum. It's called AskAnAspie, and it's a way for neurotypical parents to ask questions about  what it's like to actually be on the spectrum and get answers from a team of University students, all of whom are autistic. You can see our website at
www.askanaspie.com.
contact: Wiley Sherer

District Special Education Profiles are now available at

http://webprod1.isbe.net/specedprofiles/searchcriteria1.aspx
The Guide is especially helpful in understanding how to read the profiles.

Fact Sheet on Psychotropic Drugs

Recent increases in the use of psychotropic medications by children and adolescents, limited information on the benefits of these therapies for children, and concerns about the adverse consequences of certain drugs have prompted the U.S. Food and Drug Administration to revise their guidance for prescribers and patients. Because some of these drugs will be brought to school for administration during the school day, the Center has developed this fact sheet to summarize key information on the topic.  December 2004

see AutismNews page on School, Medications and the Law.  This page also discusses your rights under Illinois law.

Clear Blue Water - a daily comic strip drawn by a mother of children with autism.  Click the link or see the Sun-Times.

An Autistic Savant Genius Explains

Daniel Tammet is an autistic savant. He can perform mind-boggling mathematical calculations at breakneck speeds. But unlike other savants, who can perform similar feats, Tammet can describe how he does it. He speaks seven languages and is even devising his own language. Now scientists are asking whether his exceptional abilities are the key to unlock the secrets of autism. Interview by Richard Johnson
Story continues:
http://www.guardian.co.uk/print/0,3858,5123945-103425,00.html

A concise summary of the changes made in the 2004 amendments to IDEA is set forth by TASH
IDEA2004.html

Disabled children should by forced to fail says New York Judge

New: One judge acted on the below New York Times article and ruled that disabled children should by forced to fail before they get an appropriate program.

Here is a great response to the claptrap. Judge: "Children Must Fail".
Mr. Greene also deflates other myths about special education.
January 30, 2005.  excerpt:
 

"Courts have done a lot of crazy things, but recently a federal judge in Manhattan came up with what just might be the nuttiest idea yet: mandatory failure for disabled children. Even if it's clear in advance that public schools can't meet a child’s special needs, he says they still don’t have to put him in a better-equipped private school until they’ve tried to teach him themselves and failed. "

As Autism Cases Rise, Parents Run Frenzied Race to Get Help
New York Times, pro-school article about schools being swamped with autistic kids and parents asking for programs that work.
January 30, 2004:  http://www.nytimes.com/2004/01/30/nyregion/30AUTI.html

Vision Replacement Therapy Shows Promise for Rewiring the Brain

Although this article is not about autism, or classic autistic symptoms, Reversing Partial Blindness in the Wall Street Journal, on Feb. 1, 2005,  gives hope  for our children.  Previously, scientist thought that after childhood, the brain could not easily learn new tasks such as a new language without an accent.  Children are much better learning a second language or learning new musical instruments.  In one experiment, baby mammals with eye shut for the first six months never learned to see once they could open their eyes; their brains lost the opportunity to wire the neural pathways.  Consider the enormous difficulty our children have learning language; most of them spent the first three years of life with their brains disrupted with seizure disorders or toxic metals.  The first three years is when the brain wires itself for language; and our kids lose the opportunity to master language.

Vision Replacement Therapy helps adults who have lost vision from a stroke or other pathology.  The therapy  uses small but repeated prompting in the peripheral vision.  When a patient sees a dot in the periphery, he pushes a mouse button.  The brain, even for an adult, can utilize a different zone and wire it for a new purpose.  To me, this sounds a lot like the research done with FastForWord of Scientific Learning Corp., based on studies of Michael Merznich and BaxterLewis.  Their studies show that young children with auditory delays can accelerate auditory processing by playing games involving discerning differences in sounds and pressing a mouse button.  The VRT studies offer hope that repetitive auditory training can help will help older children as well.

Prior Written Notice under IDEA

A Potential Tool for Advocating for your Child

  Some commentators believe that using a demand for Prior Written Notice may be a powerful tool to get school districts to take a position and commit to giving adequate services for your children.  While the legal efficacy of this strategy is not clear, especially in Illinois, these resources can help you put a PWN demand together.  It just might work.
This page describes how PWN is used and provides sample letters. PWN.html

Special Education Form Letters

Our Children Left Behind organization has started a bank of form letters or templates to use to communicate with your school.
http://pub60.ezboard.com/fourchildrenleftbehindfrm25

New Special Education Manual for Parents

"One Parent to Another: Protecting the Education Rights of Our Children" by Betsy E. Borgucz.  Tailored for Illinois

This guidebook is filled with easy to read explanations of IDEA and other laws protecting your children.

One great idea if you live in Chicago: run for the Local School Council-which can hire or fire a principal who does or does not comply with the disabilities laws.

"While there is very little evidence of corruption in Local School Councils (LSCs) there is evidence of interference from Central Staff (i.e. directors of the district in the main office). “Central office staff continue to interfere inappropriately in LSC decision making, often pursuing their own political agendas. LSCs and their supporters need to act to stop these abuses and to create an oversight process for LSCs that solves problems and builds LSC capacity.”(Moore,2002) This can be observed in principal selection as well as policymaking. To make some connections for you, if you have a principle or school that is not following the legal requirements for meeting the special needs of children, the Local School Councils inChicago can take many steps to change that. They can hire a new principal, change school policies, and call in people to do trainings, etc. to help the problem. In short, LSCs in Chicago hold schools and principles accountable. Parents need to make attempts to get involved with their local school council’s because their decisions will directly involve how their child is taught."

Special Religious Education Program (SPRED)

If any of you are interested in the Special Religious
Education Program for children ages 6-10 years old,
there will be a meeting 8/18/2004 at St. Tar's on the
far northwest side of Chicago at 6:30 pm. You do not
need to be a member of the parish.

Number of students with autism in U.S. Schools explodes

July 6, 2004. The US Department of Education just released this data. To see the 800% increase, see this table. New Association for Special Recreation in Northern Kane County

Sept. 2004:  The Upstate Special Recreation Association will serve the same area that the Jayne Shover center covered, including Carpentersville, East Dundee, West Dundee, Bartlett, Streamwood, Elgin and South Elgin.

Autism: the hidden epidemic   on NBC

2/19/05 between 6:00 PM- 7:00 PM. (Central)

Possible reasons for the increase in the disorder  are explored. Also: host Michelle Ruiz visits a  family that has an autistic child.

  WMAQ (Broadcast Channel 5)  6:00 PM 02/19/2005
One of our AutismNews families will be featured!

NBC To Air Ten-Part Series on Autism

Autism: The Hidden Epidemic:  http://www.nbc5.com/autism/index.html??z=dp&dpswid=2275204&dppid=65195

Beginning Monday, February 21st, NBC will air a ten-part, week-long series on
autism spectrum disorders on the "Today Show".

Two segments will be aired each morning at approximately 8:10 EST and 9:10 EST.
Feb. 19 Autism the hidden epidemic (6pm-7pm)
Feb. 21: Early signs and causes
Feb. 22: Diagnosis: The Marino family story
Feb. 23: Education and emotional aspects
Feb. 24: Advocating and the law
Feb. 25: 'Autism Speaks' initiative

NBC's Today show is preparing a 10-part series that will run the week ofFebruary 21. The series will look at autismfrom a variety of angles, with segments exploring topics such as etiology,diagnosis, treatment, educational programs, affect on siblings, and how tobe an advocate for your autistic child. Be sure to tune in for the "How tobe the Best Advocate For Your Child" segment airing on February 24 featuringAutism Coalition board member, Gary Mayerson. He will be interviewed on hisnew book, "How To Compromise With Your School District Without CompromisingYour Child."

In conjunction with the Today show series, CNBC is airing a four-part seriesfrom Tuesday through Friday, Feb. 22-25. Segments will air at 12:30 PM and1:30 PM during CNBC's Power Lunch program. Titled "Autism: Paying thePrice," the CNBC series will focus on the financial implications of thedisorder, with segments on the financial impact on families, the roles ofgovernment and private funding for research, the opportunities in healthcareand pharmaceuticals and autism in the workplace. Both the NBC and CNBCseries will feature interviews with leading members of the autism community,from researchers and physicians to activists, educators and parents.Wednesday's segments will focus on intervention approaches, and will include Dr.Stanley Greenspan and parents whose children have benefited from theDIR/Floortime Approach.
Other DIR/Floortime advocates, both clinicians and parents, will be featured aswell in other segments. Later each day, MSNBC will feature live interviews.

Questions to ask Professionals

Have you ever wondered about the myriad of professionals involved in assessing your child?
Ever wondered what their jobs involve and what kinds of questions to ask when you meet with them?
Then here are some answers!
http://www.oregonparentsunited.org/howto7.htm
(from LD Online)

Confused about pyschological tests and school psychologists?
Doctors duMont and Willis explain testing for IEPs, make things simple and debunk school myths.  Check out their site to find out what your school psychologist is trying to do, and find a lot of humor too!

Legends and myths:

• A child must have an IQ in the average range to be considered LD

• The lack of a severe discrepancy is an exclusion from SPED

• The team must all agree in order to classify a child as SPED

• A disorder in basic psychological process does not impact IQ scores

• A 3-year reevaluation is done to determine if the child still has a learning disability

• Standardized tests must be administered to children during special education evaluations

• A child who does well on a standardized achievement test cannot be LD

• A child with a high IQ and lower achievement has a SLD

• A child with low IQ and higher achievement is an overachiever

• The IQ level of a child matters when one is identifying Speech/Language disorders

http://alpha.fdu.edu/psychology/

Innovative, Educational CD on Autism and Asperger's Offers Optimism and Hope

 July 30, 2004, Royal Oak, MI - Many people have heard of autism, but few are familiar with its close relative: Asperger Syndrome. Actually, most people know very little about both conditions or have misconceptions about persons with Autism and Asperger's. That's precisely why Mindscape Productions, L.L.C. developed an audio CD to educate people about autism and Asperger's in an interesting, engaging and inspirational way. The CD, entitled "Living In The Spectrum: Autism & Asperger's" is filled with valuable nuggets of insight from researchers, parents and actual individuals who are affected by the disorders. It takes a unique, optimistic approach to covering both conditions, featuring captivating music, poetry and interviews.

 "The CD offers a practical, informative, user-friendly way to learn about autism and Asperger's," says Lecia Macryn, who co-created the CD with Jeff LaDuke of Mindscape Productions. "You don't have to sit and crack open a book. You can pop it in a CD player and listen to it at your convenience, while you're doing other things like driving or working on the computer."

 Asperger's is a neurobiological disorder named for a Viennese physician, Hans Asperger, who published a paper in 1944 describing the autistic-like condition. Individuals with Asperger's typically don't have the severity of communication problems as those with autism, however, they show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They typically have obsessive routines and may be preoccupied with a particular subject of interest. Often overly sensitive to sounds, tastes, smells, and sights, people with Asperger's may prefer soft clothing, certain foods, and be bothered by sounds or lights that no one else seems to notice..

 "Living In The Spectrum" is an ideal primer for parents, relatives, teachers, employers and anyone wanting to learn about autism and Asperger's. Not the typical dry lecture, the 55-minute CD delivers a captivating and easy introduction to the subject matter. "It offers hope and encouragement," Macryn says. "It puts a whole new light and perspective on autism and Asperger's."

 "This CD is a breath of fresh air because it adds a new dimension to the total picture where doom and gloom is often the first emotion parents feel when their child has received a diagnosis of Autism," says, Laurence A Becker, PhD, Creative Learning Environments.
 Parent, Suzanne Rossi says: "This positive approach left me with renewed hope that someday autism might be viewed less often as a disability and more often as human diversity." Karen Simmons, CEO and founder of Autism Today and the author of "Little Rainman," is equally impressed. "What a fabulous resource you have put together! I sure wish I had this available 10 years ago."

 "Living In The Spectrum - Autism & Asperger's" is available for $16.95 online at www.mindscapeproductions.com or by phone via CDFreedom: 1-800-937-3397
 Audio samples of the CD are also available on the website. For more information or to request a press/media review copy, contact Lecia Macryn at (248) 288-2242.
 Mindscape Productions, L.L.C http://www.mindscapeproductions.com
 Phone: (248) 288-2242 Email: info@mindscapeproductions.com

Volunteers needed for Eye Movement Research

There are 2 studies on-going at U of I (Chicago) - Center for Congitive Medicine;
they are conducting research to better understand, diagnose and treat: PDD, including autism and Asperger's Syndrome.

• Study 1 brain function in autism: ages 8-55 for individuals w/PDD,

  • (may include MRI brain imaging, must have a 2nd grade reading level.)

• Study 2, ages 0-55: Genetics of Autism. (Biological Testing Study 2)

Both studies include eye movement
For more information or to determine if you qualify call,
312(413) 3426, or 312-413-8736
or we could fax or send the brochure
Call VOICE at 800- 469-2844

Classroom Acoustics

Here are some links to get more information about classroom acoustics and
advocacy for students to support the needs of children with hearing loss
or impairments receive early intervention, appropriate educational placement
and/or services.

• http://www.classroomacoustics.com/

• http://www.agbell.org/advocacy.cfm

Illinois General Assembly passes new Autism Education Act of 2003.

Can create three new Centers to inform doctors and educators on best practices.

Summary:  Subject to appropriations, it requires the Department of Human Services to contract for the establishment, at 3 different sites in the State, of an autism diagnosis education program of young children. It calls for educating medical practitioners, school personnel, daycare providers, parents, and community service providers (including, but not limited to, early intervention and developmental disabilities providers) throughout the State on appropriate diagnosis and treatment of autism.

Good job, everyone who lobbied for more.
Now let's get it funded!  Convince the legislature that best practices are the most cost-effective way of meeting the No Child Left Behind Act.For details on this law and other laws affecting autism in Illinois is 2003, click here.

The No Child Left Behind Act's New Regulation will let schools leave our kids behind.

The NCLB Act should lead to improvements for all children, even those with disabilities.  However, on December 9, 2003, the U.S. Department of Education entered a regulation will allow schools to put the most disabled kids into "alternate assessments," meaning schools will have no incentive to teach our kids with  research-based methodologies to improve the school's overall proficiency scores.
A summary of the Act and the new regulation in outline form.

Check your child's IEP: If he or she gets and "alternate assessment," instead of participating  in the State-wide, standardized tests, your child will be left behind by schools.

Articles in the news

As Autism Cases Rise, Parents Run Frenzied Race to Get Help
New York Times, pro-school article about schools being swamped with autistic kids and parents asking for programs that work.
January 30, 2004:  http://www.nytimes.com/2004/01/30/nyregion/30AUTI.html
New: One judge acted on this article and ruled that disabled children should by forced to fail before they get an apropriate program.  Here is a great response to the claptrap. Judge: "Children Must Fail"

Lockport considers live-in care for autistic children
January 31, 2004. Copley Press

"For Some Parents, the Care Can't End"

The Tender Trap: Parents Devoted To a Disabled Child Confront Old Age
Failing Strength May Force The Communal Care They Dreaded for So Long
An article describing elderly parents taking care of aging autistic children, Jan. 07, 2004.

U.S. Dept of Education finds 15% of autistic children sexually abused.

http://www.specialeducationmuckraker.com/Shakeshaft%20Synthesis%20of%20Research.pdf

These groups will lobby Congress and the Legislature to stop the erosion of rights of people with disabilities:

• League of Special Education Voters

• Our Children Left Behind

Proposal : Can Autism by treated  by removing Copper?

In December 2003, one scientist showed that removing copper from the body could help Alzheimers patients.  For ten years, this scientist was derided by mainstream physicians for his position.  Mainstream physicians also deride anything to do with autism.  If the removal of copper can improve the lives of Alzheimer's patients, will the removal help autistic children?  Autistic children show the highest levels of copper of any group of patients with neuorological symptoms. Unfortunately, the drug used successfully for the older patients, Clioquinol, is not approved for children, ironically, because of the dangerous effect it can have on the neurology. Either some other form of chelation must be found or studies must be done to show that the dangers of clioquinol are actually desired effects (the removal of copper).  Also, clioquinol was disapproved because the danger was not worth the risk for treating dermatitis; is it worth the risk for autism?

To see this work-in-process proposal see Clioquinol.html.

New law to prevent school districts from discriminating against children the schools think should be medicated.

Schools cannot force parents to medicate their children.

The new law reads:
"Each school board must adopt and implement a policy
that prohibits any disciplinary action that is based totally
or in part on the refusal of a student's parent or guardian
to administer or consent to the administration of
psychotropic or psychostimulant medication to the student."
This new statute is important since many teachers do not know much about
the meds they want the kids to take. A similar law failed to pass Congress in 2003.
See article. includes Dept of Ed OSEP view.

Strategies to combat harassment in the schools.  December 2003.
This page lists the laws which prohibit harassment of children with disabilities in the school, and strategies you can use to stop bullying and harassment in the schools.  Again a work in progress, and your feedback and ideas are welcome.

Ten Common Mistakes Parents Make During the IEP Meeting

by Matt Foley, M.Ed., L.P.C. & DeAnn Hyatt-Foley, M.Ed.

1. Believing the professionals are the only experts.

2. Not making requests in writing.

3. Not being familiar with Prior Notice of the Procedural Safeguards

4. Requesting a related service instead of an assessment that supports the need for a related service

5. Accepting assessment results that do not recommend the services you think your child needs.

6. Allowing the assessment information to be presented for the first time at the IEP meeting

7. Accepting goals and objectives that are not  measurable

8. Allowing placement decisions to be made  before IEP goals and objectives are written

9. Allowing your child’s IEP meeting to be  rushed so that the school staff can begin the  next child’s IEP meeting.

10. Not asking a lot of questions

The author explains each of these mistakes and makes recommedations you can use.

Hyperlexia helps scientists find how the brain learns to read.

Children should associate sounds with visual information.

Jan 8, 2004. A study in Neuron describes scientists looking inside the brain of a hyperlexic child using functional magnetic resonance imaging (fMRI), which forms a picture of brain activity. The researchers hoped to identify some unusual places being used in the brain of the child, a nine-year-old boy who learned to read before he could speak.

Instead, they found that the boy used the same places in the brain that normal and above-average readers use, but he used them in a more intense way. The places were in the left side of the brain, in an area that in other studies appeared underused by children with dyslexia. Because hyperlexic kids can read well despite significant language delays -- and because they largely seem to use the same brain wiring, if more intensely, as regular readers -- the study suggests that reading can be learned through visual information rather than oral language.

This conclusion bolsters the practice of training dyslexic children to associate "sounds with visual information," says Guinevere Eden, director of the Center for the Study of Learning at Georgetown University, in Washington, and senior author of the study. In such training, dyslexic children are taught to decode writing by tapping out the sounds of a word, or using blocks of different colors to represent word sounds.

Abstract:
http://www.neuron.org/content/article/abstract?uid=PIIS0896627303008031
  Children with autism spectrum disorders in very rare cases display surprisingly advanced “hyperlexic” reading skills. Using functional magnetic resonance imaging (fMRI), we studied the neural basis of this precocious reading ability in a 9-year-old hyperlexic boy who reads 6 years in advance of his age. During covert reading, he demonstrated greater activity in the left inferior frontal and superior temporal cortices than both chronological age- and reading age-matched controls. Activity in the right inferior temporal sulcus was greater when compared to reading age-matched controls. These findings suggest that precocious reading is brought about by simultaneously drawing on both left hemisphere phonological and right hemisphere visual systems, reconciling the two prevailing, but seemingly contradictory, single hemisphere theories of hyperlexia. Hyperlexic reading is therefore associated with hyperactivation of the left superior temporal cortex, much in the same way as developmental dyslexia is associated with hypoactivation of this area.

Insurance News

Autism Patient wins court case against Aetna Insurance Co. for coverage for Speech, PT and OT.

added Aug. 11, 2003.  The Dr. Chez patient prevailed when the U.S. District Court for the Northern District of Illinois found the insurance company failed to follow the language and terms of the policy.

A new Illinois statute mandates some coverage for autistic patients in insured plans!

Note that only half of people are in "insured plans" to which the statute applies.  Many people are in self-funded ERISA plans, which has some parity for mental health coverage.

... But does the statute actually hurt coverage issues overall?

Has the legislature done more damage than good by calling autism a mental illness when it is really an organic, physical disorder with behavioural manifestations?

These and other issues are discussed on the Autism News Insurance Law update page.

June 2006: new staute increases number of covered speach therapy sessions by 20 per year.

Experts say early education pays off: Study finds funds saved in long run

By Ronald Kotulak, Tribune science reporter.  August 3, 2003

Every $1 spent on high-quality early education programs saves society $7 in future costs in special education, delinquency, crime control, welfare, lost taxes and other areas, according to a groundbreaking study of a Child-Parent Center program in Chicago.

story continues: Earlypays.html

Send this story to your school district!

Help requested for research questionairre:

Sasha Baier from Virginia Commonwealth University is starting a study and asks that you assist her in learning about parents' coping stategies.  You can reach her by contacting Dr. Everett Washington at 804-828-8089.  To participate, go to:
http://www.pubinfo.vcu.edu/autismfamily/coping/intro.htm ,

"This questionnaire is designed to find out how families cope with hurts.  We especially want to know how you, as a parent, deal with negative reactions from others in relation to their child's disability.  If you

(a) are a parent of a child with autism
(b) you can think of at least one hurt that you have experienced related to raising a child with autism
(c) have not completed this study before;

we would really appreciate your participation in our study. The entire study should take around 15 minutes to complete.

By participating in this study, you can contribute to a field of research on the topic of family functioning in children with autism, which can lead to more effective workshops and educational interventions for families of children with autism, which will eventually lead to more funding for families of children with autism."

Another study is http://www.pubinfo.vcu.edu/autismfamily/home.htm , which is an on-line questionaire.

Fed OSEP finds Illinois State Board of Ed out of compliance with IDEA requirements.

OSEP found that:

1. ISBE’s monitoring procedures are not effective in identifying and ensuring the correction of all systemic noncompliance with the requirements of Part B.

2. ISBE has not reported to the public regarding the performance of students with disabilities in the alternate assessment.

3. ISBE has not ensured that all children with disabilities are educated in the least restrictive environment.

4. ISBE has not ensured that children with behavioral or emotional disabilities are receiving all of the services that they need as part of a free appropriate education, including psychological and counseling services.

Read the 11 page memo on what ISBE plans to do: http://www.isbe.state.il.us/spec-ed/PDF/lreprocedures.pdf

New report questions fairness of the due process system in Illinois.

Archer.html
Access.pdf

The results of Dr. Melanie Archer’s analysis were startling.

• Overall, school districts have prevailed in over two out of three special education due process hearings in the time period 1997 to 2002

• In the last 1 ½ years, the school districts have been increasingly prevailing at due process hearings, with the school districts prevailing in more than 72 percentage of cases in 2001

• Almost half of the hearing officers decided in favor of the school district, in excess of 80% of their decisions

• During the 1997 to 2002 time period, parents were successful in 49.6 percent of the cases when they were represented by an attorney, but only successful in 16.8 percent when unrepresented by an attorney.

These preliminary statistics have caused considerable concern with respect to both the adequacy of the due process system in identifying and addressing parent concerns, the fairness of the due process system, and the adverse impact on the success of parents when they do not have access to affordable legal counsel.

Time to start your tax  crunching.

This Article was moved.

60 Minutes II segment on Autism: http://www.cbsnews.com/stories/2003/01/14/60II/main536416.shtml
This episode was broadcast on January 16, 2003, and features the stories on two boys who have made huge leaps in progress using the Rapid Prompting Method.
If that link fails, try CBS-RapidPrompting.html

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