Volume 6 Issue 5
Letter from the editor:
Thank you to everyone who has helped contribute information to me. It
has been a tremendous help. Please send all comments, criticisms, renewals,
etc. to:
Autism News
PO Box 1255
Crystal Lake, IL 60039-1255
Email address is [email protected]
Also remember to make your checks out to Autism News for $15 now.
***Starting in July the newsletter will be $17.50 a year thanks to
Uncle Sam raising the price of stamps***
Don't hesitate to send me stuff, I love to read it all and do appreciate everything that is sent to me.
Happy Reading,
Amy
All contents are copyright 2002 by the Newsletter mom. Total freedom is granted to recopy and share information as long as Autism News gets credit.
***Please send all meeting info, if I don't get it, it doesn't go in
the newsletter.
***I didn't get any word, so I think everyone is doing Refrigerator
Moms for their meeting this month***
When was the last time you...
...saw a private screening of a hot, new film
...met the filmmakers
...talked with the film subjects
...engaged in informative dialogue with parents and professionals
...and supported AUTISM all at the same time?
Never, you say? Then don't miss this opportunity!!
THE AUTISM SOCIETY OF ILLINOIS presents
REFRIGERATOR MOTHERS: THE BETTELHEIM LEGACY AND IMPLICATIONS IN TODAY'S PROFESSIONAL-PARENT PARTNERSHIP
A Special Screening of a landmark film that has already won three major awards, including Best Documentary is set for Friday, May 10th. For more information contact the Autism Society of Illinois or visit their web page at: Autism Society of Illinois, you can also go online to register at: ASI Online Registration. The Autism Society of Illinois accepts Master Card, Discover Card andVisa at its secure server web site.
PROGRAM SCHEDULE
May 10, 2002
8:00 a.m. - 8:45 a.m. Registration & Coffee
8:45 a.m. - 3:30 p.m. Conference Program
Conference Features
-"REFRIGERATOR MOTHERS" A Special SNEAK PREVIEW of the one-hour documentary
by Kartemquin Educational Films, the company that produced "Hoop Dreams."
- EXCLUSIVE "MEET THE FILMMAKERS" Open-mike question and answer session
with the film-makers about their four-year odyssey to make Refrigerator
Mothers.
- MOVING BEYOND BLAME AND GUILT
A cross-generational, cross-cultural parent panel, including subjects from the film, will engage in a provocative open dialogue: from the history of the "external" guilt of mother blame to dealing with "internal" guilt parents sometimes experience; from building better communication bridges with professionals to strengthening services and improving the futures of children with autism.
- BUILDING BRIDGES Marrea Winnega, Ph.D., identifies and discusses key
elements necessary for a positive working relationship between parents
and professionals: What is the relevance of the parents' experience, knowledge
and intuition in working with children with autism? What strategies can
be used to reduce family stress resulting from having a child with significant
behavioral needs? How do we support parents who are just beginning to face
the challenge of autism? How do we support parents of adults with autism?
Autism Society of Illinois
2200 S. Main Street, Suite 317, Lombard, IL 60148-5366
630-691-1270 - Fax 630-932-5620
www.autismillinois.org
DeSoto House Hotel
230 S. Main St
General Smith Room
6:30-8:30PM
June 10-14 & June 17-21 Downers Grove
July 8-12; July 15-19 Dyer Indiana
Auditory Training & Education Center
Sharon K. Hurst, M.S.
17220 Ashdale Court
Granger, Indiana 46530
(574) 272-2795 or (888) 248-0990
e-mail: [email protected]
****Call now to schedule times******
"The General"
Eagle Ridge Inn and Resort-Galena
1:00PM Shotgun Start
18 Holes of Golf, Cart, Box Lunch, Dinner, Raffles, Prizes, Hole in
One Event and more!!!!!!
Watch the newsletter for more information as we approach summer!!
Please help us spread the word about this exciting series. Pass this
message on to a friend or colleague.
Denise Marshall
Director of Meetings and Information Resources
Mark your calendars now - 2002 TASH Conference, December 11-14th
Boston, Massachusetts
Intensive Advocacy Training
d.. A, ADA, Section 504 of the Rehabilitation Act, FERPA and more legal
issues, evaluation, IEP/IFSP and 504 Plans, positive behavior intervention,
organizing your child's file, preparing for meetings, self advocacy. We
are requesting teams of individuals including parents, teachers, related
service providers, and whenever feasible, students themselves to participate
in this training. Students need to develop self-advocacy skills to prepare
them for the future.
This is intended to be a jumping off point for parents to advocate successfully for their children.Please contact us for more information and to register. CEU's and CPDU's will be offered.We are looking for self-motivated, self-determined individuals to participate and disseminate this information to other parents across the state. Knowledge is power!
The training will be offered Friday evening and Saturday morning on 2 consecutive weekends.
We are negotiating for competitive rates at area hotels for those who need to travel a great distance.
If there is sufficient demand, we will repeat this training series several times during the year.
Contact Us
[email protected]
www.galenaparentadvocates.com
LDA/IL STATE SPRING WORKSHOP Holiday Inn, Time: 8 a.m. to 4 p.m.
For a Registration Form, contact the Illinois LDA Office at
708-430-7532
E-Mail: [email protected]
FAX: 217/243-7596
http://www.ldaamerica.org/Affiliates/IL/
Special Education Attorney Reed Martin will be there!!!
May 9-11 Boston, MA
SPEAKERS: Sidney Baker, M.D. * Jayne Barese, R.N. * Mark Blaxill, MBA * Kenneth Bock, M.D. * Jeff Bradstreet, M.D. * Timothy Buie, M.D., Ph.D. * Jane El-Dahr, M.D. * Barbara Loe Fisher * Sudhir Gupta, M.D., Ph.D. * Paul Hardy, M.D. * Walter Herlihy, Ph.D. * Woody McGinnis, M.D. * Jon Pangborn, Ph.D. * Karl Reichelt, M.D., Ph.D. * Bernard Rimland, Ph.D. * Karyn Seroussi * Paul Shattock, Ph.D. * Andrew Stoll, M.D. * Andrew Wakefield, M.D. * Rosemary Waring, Ph.D. * Carol Wester, MSN, CSN *
TOPICS:
The Autism Society of Illinois Presents:
An exclusive screening of the award-winning documentary film and
a one-day conference.
To register online: www.autismillinois.org
To register by phone: 630-691-1270
Highlights:
**A special sneak-preview of Refrigerator Mothers by the filmmakers
that produced "Hoop Dreams."
**Exclusive open-mike q&a session with the filmmakers about the
four-year odyssey to make the film
**A cross-generational, cross-cultural parent panel in an open dialogue
about guilt, blame, communicating with professionals and improving the
futures of children with autism.
**A building bridges panel with Marrea Winnega, Ph.D. to identify and
discuss key elements for a positive parent-professional communication.
Don't miss this once-in-a-lifetime event. For more information call the Autism Society of Illinois at 630-691-1270
The next session runs from May 13 to July 5, 2002
Emergent Literacy and Older Students - Taught by Pati King-DeBaun
Introduction to Assistive Technology - Taught by Kelly Fonner
Introduction to Augmentative Communication - Taught by Jill Senner
Lets Start Communicating - Taught by Pati King-DeBaun
Singing to Read - Taught by Dr. Caroline Musselwhite
Curriculum Development using Photographs in Intellipics Workshop #1
- Taught by Patti Rhea
Please check out our website for more details about the courses, instructors, prices and to sign up! www.eduworkshops.com
School Systems, Regional Consultants be sure to check our new Site Licenses which will be available this Fall. Go to www.eduworkshops.com and select workshops in the menu bar. Select any of the Topics and click on Site Licenses. This can save your program a considerable amount of money!
Holiday Inn Express 1550 E. Dundee Rd
"ABC's and 123's of Autism: What is it? Where do I start? How do I plan?"
Margaret Mazeika will help participants explore the basic learning characteristics of children with Autism Spectrum Disorders. The use of positive planning and research supported instructional strategies will be emphasized throughout. Environmental and social supports that can be implemented within a regular classroom will be highlighted. Registration is limited to 100 participants and is a StarNet 2 conference. Contact StarNet Region 2 for info.
Participants who complete the training will receive free:
a.. Special Education manual, which include state and federal special
education laws
b.. How to Organize an Effective Parent Group and Move Bureaucracies
c.. How to Get Services by Being Assertive (both published by FRCD)
d.. Other valuable materials.
To participate in this workshop, you should have a basic knowledge of Special Education and be willing to be a volunteer trainer for at least one Special Education Rights training seminar for other parents in your community or at FRCD.
Family Resource Center on Disabilities (formerly Coordinating Council for Handicapped Children) 20 East Jackson Blvd., Room 300 * Chicago, Illinois 60064 312/939-3513 (voice)----800/952-4199 (Illinois only, Outside Chicago Area)----312/939-3519 (TDD)
May 22 Crystal Lake 8:30-3
Holiday Inn 800 S. Rt. 31
"Supporting Family Strengths Through Home Visits"
Too often people with disabilities are not given the knowledge to
protect themselves from abuse, neglect and financial exploitation. This
one day workshop is designed to empower individuals to increase awareness
of the relationship between disability and abuse, resources available to
prevent abuse, and pro-active strategies that encourage self-empowerment
and self-advocacy Topics include Disability and Maltreatment, Your safety
your rights, recognizing maltreatment, external and internal barriers to
action, taking charge, understanding the system, and self-advocacy and
empowerment. The cost is $80 for professionals and $40 for parents and
students. There is a $10 fee for registering after 10 days before the conference.
Chicago meeting place is the UIC building 1200 W. Harrison 312-413-5000
and the Rockford location is Ramada Suites and Rockford Conference Center
200 South Bell School Road 815-226-2100. For more info on the conference
contact 312-413-1535 or fax at 312-413-1620
a.. 2002 Conference theme: "Champions and Challenges"
b.. Where: Marriott Hotel in Indianapolis, Indiana
c.. Why: To hold a national forum for the presentation of important
field studies, intense educational sessions, structured networking opportunities,
information exchanges, and interaction between individuals interested in
the well being of children and adults with autism.
For registration information, please email us at:
October 14 - 15, 2002 Kansas City, Missouri
This conference will cover two days. Day One will include the topics:
Encouraging Friendship Skills and Managing Emotions. Day Two will include
discussion of Asperger's Syndrome in the Adolescent Years and a question
and answer forum.
The conference registration fee includes all materials and handouts,
continental breakfast, lunch and afternoon refreshments. Participants can
either register for either day or both days. Early registration fees will
be $175 for BOTH days and $125 for ONE day. For Groups of 4 or more, please
contact BusyWeb Solutions, Inc. for information on discounted fees.
Registration received after September 1, 2002 will be $215 for BOTH days and $165 for ONE day.
Fees can be paid by check, credit card, money order or purchase order. Please contact BusyWeb Solutions by phone 618-397-2131 or e-mail to receive a registration form. A printable registration form is also available at www.tonyattwood.com
Here are some recent updates and data regarding Early Intervention:
If you have any questions or concerns, please feel free to contact
Kim Fitzgerald at 312-516-5557
Kimberly Fitzgerald
Project Director
Voices for Illinois Children
Phone: 312-516-5557
Fax: 312-456-0088
[email protected]
www.voices4kids.org
In honor of Mother's Day, I thought this
was kind of funny and I thank the other list that I got this off of:
You Know You're A Mom When......
1. Your feet stick to the kitchen floor.....and you don't care.
2. When the kids are fighting, you threaten to lock them in a room together and not let them out until someone's bleeding.
3. You can't find your cordless phone, so you ask a friend to call you, and you run around the house madly, following the sound until you locate the phone downstairs in the laundry basket.
4. You spend an entire week wearing sweats.
5. Your idea of a good day is making it through without a child leaking bodily fluids on you.
6. Popsicles become a food staple.
7. Your favorite television show is a cartoon.
8. Peanut butter and jelly is eaten at least in one meal a day.
9. You're willing to kiss your child's boo-boo, regardless of what body part it happens to be on.
10. Your baby's pacifier falls on the floor and you give it back to her after you suck the dirt off of it because you're too busy to wash it off.
11. Your kids make jokes about farting, burping, pooping, etc., and you think it's funny.
12. You're so desperate for adult conversation that you spill your guts to the telemarketer that calls and HE hangs up on YOU!
13. Spit is your number one cleaning agent.
14. You're up each night until 10PM vacuuming, dusting, wiping, washing, drying, loading, unloading, shopping, cooking, driving, flushing, ironing, sweeping, picking up, changing sheets, changing diapers, bathing, helping with homework, paying bills, budgeting, clipping coupons, folding clothes, putting to bed, dragging out of bed, brushing, chasing, buckling, feeding (them, Not you), PLUS swinging, playing baseball, bike riding, pushing trucks, cuddling dolls, rollerblading, basketball, football, catch, bubbles, sprinklers, slides, nature walks, coloring, crafts, jumping rope, PLUS raking, trimming, planting, edging, mowing, gardening, painting, and walking the dog. You get up at 5:30AM and you have no time to eat, sleep, drink or go to the bathroom, and yet ... you still managed to gain 10 pounds.
15. In your bathroom there is toothpaste on the light fixtures, water all over the floor, a dog drinking out of the toilet and body hair forming a union to protest unsafe working conditions.
16. You buy cereal with marshmallows in it.
17. The closest you get to gourmet cooking is making Rice Krispies bars.
The complaint that Representative Burton (Republican-Indiana) has, is
that while Autism continues to grow in claiming victims, the funds to research
this illness or disability, are lagging far behind the need as evidenced
by the statistics. "We have an epidemic on our hands and we in Congress
need to make sure the NIH (National Institutes of Health) and CDC treat
this condition like an epidemic," Burton said. Burton, who has a grandson
with Autism, has taken this cause on and as evidenced by his actions as
a congressman, continues to battle on to find the cause and possible treatment.
Numerous hearings have been held over the past few years and it would appear
more are on their way with Burton's recent complaints. Although exact statistics
are controversial, it is known that the incidence of autism has skyrocketed
from 1 in 10,000 to 1 in 500. Some places in the United States report 1
in 250 and in Brick Township, New Jersey, the incidence is reported at
1 in 10 to 1 in 150, depending on the source of the statistic.
Burton quoted spending dollars by the CDC and the NIH as his basis for concern.
CDCThis is NOT to say that AIDS and Diabetes are not valid healthcare concerns across the United States. Research is needed into both diseases and it is needed urgently. But the concern regarding Autism, for society as well as individuals, is of a long-term nature, as well as of immediate concern.a.. Autism - $11.3 million this year and $10.2 million next yearNIH
b.. AIDS - $932 million this year
c.. Diabetes - $62 million this yeara.. Autism - $56 million this year
b.. AIDS - $2.2 billion this year
c.. Diabetes - $688 million this year
Immediate Concern
1.. At the rate of increase, more and more children are Autistic and at the rate of growth the incidence is becoming staggering.
2.. The early intervention required is causing tremendous financial hardship for families
3.. The special education needs are causing a drain on the federal and state systems to provide the children with Autism the education they need.
Long Term Concern
1.. Special education doesn't end when a child leaves elementary school. High School and beyond, if a child with Autism is capable of attending schools of higher learning, and many are, will be a greater financial drain that ever expected.
2.. Children with Autism will become adults with Autism. Is our society
prepared financially and emotionally to handle adults at a rate of 1 in
500 at the least to an estimate of 1 in 250, who are Autistic and need
supervision and help to cope with daily life? And of course the nagging
question that remains in the mind of parents everywhere who have a child
with this disability. Is there something that has caused it, is causing
it to become worse that could be stopped? Coping with Autism is the first
priority. Caring for the people who have Autism is our utmost concern but
stopping this runaway train is something that we cannot ignore.
Yet the CDC is dropping Autism research money next year. The NIH defends their position stating "NIH has made substantial progress . . . in further expanding and intensifying our autism research activities," stating that in 1997 only $22 million went into Autism research.
Apparently to Dan Burton, that is not enough. The Autism Society of
America is asking the NIH to increase their funding to $500 million this
year. The basis for this recommendation and for Burton's tenacious pursuit
of this issue is critically important to understand. The ASA estimates
that the growth of Autism is increasing at 10 to 17 percent each year.
Extrapolating out those numbers is frightening to any statistician, to
any parent and should become so to society at large. The financial implications,
even beyond those of the emotional impact, could crush the nation's health
and human services industries.
Why Yes, it's that time again.
More than half of the phone calls we receive at this time of the year
are about Extended School Year Services.
We have tried to compile a list of resources for parents to consult
BEFORE you attend your IEP this spring.
As always, if you have specific questions that are not answered here,
call or e-mail for more information.
(a) GeneralWhat Are Some Factors That Could Mandate a Need For ESY?(1) Each public agency shall ensure that extended school year services are available as necessary to provide FAPE, consistent with paragraph (a)(2) of this section.
(2) Extended school year services must be provided only if a child's IEP team determines, on an individual basis, in accordance with 300.340-300.350, that the services are necessary for the provision of FAPE to the child.
(3) In implementing the requirements of this section, a public agency may NOT-
(i) Limit extended school year services to particular categories of disability; or
(ii) Unilaterally limit the type, amount, or duration of those services.(b) Definition. As used in this section, the term extended school year services means special education related services that-
(1) are provided to a child with a disability
(i) beyond the normal school year of the public agency;
(ii) in accordance with the child's IEP; and
(iii) at no cost to the parents of the child
These are by no means the only factors, just some to consider as a point of beginning......
a.. Type and severity of the handicap.
b.. Presence of medically diagnosed health impairments.
c.. The child's age.
d.. Attainment of self-sufficiency.
e.. Need for recreational programs.
f.. Respite care for parents.
g.. Family environmental factors (family stress levels).
h.. Family inability to provide educational programming during the summer
Delivery options for ESY services include but are not limited
to the following:
a.. The traditional 2- to 6-week school-based summer program.
b.. Home consultation to provide support and instruction to parents in preventing regression.
c.. Residential placement in a boarding facility.
d.. Summer camp or recreational programs that provide opportunities for maintenance of skills.
e.. Private summer school programs providing the least restrictive environment available.
Support services should also be made available when they are required
for maintenance of skills. These services may include speech therapy, physical
and occupational therapy, and adaptive physical education.
Now remember........the school district cannot limit the amount,
duration or type of services!!
AND.......it is in direct violation of IDEA to limit or refuse services
based on the school districts' inability to pay for them.
So if your school says, "We don't have the money to pay for ESY" or
"It's not in the budget this year"
Write a state complaint!!!!!!!!!!!!
Just a brief listing of websites that have invaluable information about Extended School Year Services:
www.isbe.state.il.us/spec-ed/PDF/ESYCommunication11-01pdf
http://www.reedmartin.com/esy.html
http://www.howard.k12.md.us.special/services/ESY.html
http://www.reedmartin.com/extendedschoolyear.htm
http://www.dese.state.mo.us/divspeced/extschoo/html
http://www.ppmd.org/publications/extended_school_year.html
http://specialed.about.com/cs/extendedschoolyr/
http://www.kidsource.com/kidsource/content3/extended.school.k12.2.html
http://www.psm.org/esyfact.html
http://www.smsu.edu.Access/SprSum00elegibility.htm
www.state.nj.us./njded/specialed/esy/esy2.htm
The moment that I have been waiting for and I wanted to save my favorite thing for last this month:
Dennis Debbaudt's book review.I have just read, although not as thoroughly as I would have liked, Mr. Debbaudt's book Autism, Advocates, and Law Enforcement. I found this book to be a very good resource and a must read for not only parents of children with autism but also I think that every law enforcement official whether it be the chief of police or the officer that has to do scut work needs to read this before they go out on patrol. First of all it is divided up into two sections one for parents and family, the other for law enforcement people. It tells of ways to get missing person or 911 handouts out so that people that don't know anything about ASD will be able to help find that missing loved one. He also talked about how people with ASD should be interviewed whether it has to be as a witness or a victim. He also put in there for law enforcement officials some of the simple signs of autism. For the family perspective, he talked about simple ways that we can protect our loved one. From talking to our neighbors to simple floor plans. Also getting information out to the community through grass root campaigns so that our communities know about autism and try to get an understanding of the disorder. Like I said this is a definite must read and I plan on reading it many more times. The publisher of this book is Jessica Kingsley Publications and the website is www.jkp.com. The ISBN number is 1-85302-980-7. Pick up a copy today. Shoot if you can afford it pick up a copy for your local police department and encourage them to read it too.
Well, that is all for another issue of Autism News for this month. Not as many pages I know, but I still hope that you all enjoyed it. As you may have noticed, I took out the Parent to Parent thing because it just wasn't working. Please let me know what you would like to see and it more than likely will go in. What do you want to know about, Medical updates, trainings, and inclusion let me know because I feel like I am just putting in what I would want to read.
THIS MIGHT BE A NICE WAY TO PLAN A SUMMER VACATION!
The camp is a place where I can be free and be the me that I want to be
I can run and jump and play all day, and let my thoughts drift away
It is nothing like your normal place, it's almost like a big blank space
No one to holler and no one to yell, no one to fuss and no one to tell
So if you want to go where dreams come true, just go to camp, it's up to you
A Camp For Children on The Autism Spectrum
Located in Noblesville, Indiana This Year!!!
The Campsite Is in Noblesville at The Boys And Girls Club of Indianapolis
Facility at 211th St.
Follow Grey Road to Moon Just Past 32 Turn Right to Summer Safari Campsite.
(If your child has functional needs please provide a wrap around provider or aid with child.. This applies to assisted bathroom and shower needs. If you do not have an aid for your child please call and we will try to accommodate up to 5 children with these needs from the camp. If you have waiver services please use them. Most volunteers are high school and younger! Please think what is needed to make your child safe!)
Aug 3-4 Sat 8am to Sun 5pm for Preschooler ages 3 to 6 with autism and one parent (the Saturday is an overnight in the cabins $35_____ (the whole family is welcomed if that works)
Limit is 20 preschooler
July 29-Aug2 MON-Wed/Thurs Overnight and FRI 8am-5pm with late time to 5:30pm for working parents FOR CAMPERS 6 TO 11 $110.00 Limited to 60 campers!
AN ADULT MUST ACCOMPANY THEIR CAMPER ON THIS OVERNIGHT ________
Aug 5-9 MON-FRI FOR CAMPERS 12 UP $160.00 M,T,W,TH, OVERNIGHTS
Ends Friday at 5pm! AN ADULT MAY BE ASKED TO BE ON THE FACILITY FOR
THEIR CAMPER FOR AT LEAST THE FIRST OVERNIGHT, BEGINS MONDAY AT 8AM
ENDS FRIDAY 5PM. (If overnight does not work, we can arrange daily visits
instead)
Aug 8 and 9 Thurs 8am to Friday 5pm $30 for HIGH FUNCTIONING ADULTS
WITH HIGH FUNCTIONING AUTISM OR ASPERGER Overnight Retreat! ages 17
AND UP
Limited to 10
SIBLING DAY $10, Wed (bring lunch, swimsuit/creekshoes, extra clothes)
July 31 or 8 a.m. to 5 p.m.__________ -or
_________________________NAMES August 3rd 8 a.m. to 5pm __________
CAMPER NAME_______________________________AGE________GRADE_____
CIRCLE ONE DIAGNOSIS HFA/ASPERGER/PDD/LFA
PARENT OR GUARDIAN NAME________________________________
ADDRESS________________________________________________
CITY_____________________________STATE______ zip_____
PHONE______________________________EMAIL_______________
PARENT VOLUNTEER CIRCLE M T W TH F
PHONE NUMBER __________ EMAIL ADDRESS__________________
I AM INTERESTED IN BEING A GROUPLEADER_________
OTHER VOLUNTEERS NAMES _________________PHONE NUMBER
OUR DOCTOR IS ______________PHONE NUMBER _________
SCHOOL__________________________________COUNTY__________________
There will be swimming with a pool, activities galore, obstacle Courses, and more!!! I will have staff there but I still need all my Volunteers. Please give at least one day if you can. Overnights at both camps are flexible, no child has to do anything they are not comfortable with.
I am trying to raise $44,000.00 to cover the offsetting costs. I want
our kids to have a real camp. Part of what I am trying to do is air condition
one of the buildings. Please know what I do is completely Volunteer and
I do not pay myself, I do this because I love these children!!
Please Mail this Back to Me at with Payment To:
Camp Awareness/Susan HansenASSESSMENT MUST BE SENT WITH SIGNUP! TO YOU AFTER THIS IS FILLED OUT!!
11526 Newport Dr East
Indianapolis, in 46236
EMAIL QUESTIONS TO: [email protected] 317-823-1431
www.campawareness.com Please email when possible as I am overrun with phone calls.
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