Newsletter
 

November 2001 Vol. 5 # 11

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I am still looking for a new Newsletter Mom or Dad to take over all or most of this venture. One of you out there is beginning to feel energy surge through you as the realization that you, yes, YOU, will become the next newsletter editor thrills you down to the marrow of your being. (So quit sitting there reading this and call or email me for details!) If I do not find another volunteer to compile, edit and mail this monthly newsletter I fear it will simply have to stop production within a few months as I have far too much on my plate these days (and it has been five years!). Time for new blood to take over. I will retain the on-line list, and the website - and keep providing info for the next editor to use (or not) for each issue. (Who know s- maybe this will just become an on-line only monthly meeting/conference update if no one wants to take over the snailmail edition. I copy, fold, envelope-stuff and mail about 200 newsletters a month.

Contents for November 2001

• Multiple Meetings
• Conferences - Workshops
• Play Hearts, Not Poker
• SibShop
• Holiday Cards from HAVE Dreams
• Wanted - Newsletter Editor
• ISBE and DHS want to hear from YOU!
• Village approves a group home for 6 children

Multiple Meetings

All are opportunities to network/vent/commiserate with your fellow parents unless a speaker is mentioned. All data current as of Oct. 22, 2001
 

November 3, O'Fallon, 10:00am - noon

Autism Society of Southern Illinois meets the first Saturday of each month (second Saturday if a holiday weekends) at the O'Fallon Public Library, 120 Civic Plaza. Call 618/682-3783 or email [email protected] for info.
 

November 5, Park Ridge 7:00pm

Parent-2-Parent for Special Students meets at the Maine Twp. Admin. Bldg. , 1700 Ballard Road, Park Ridge.Eva:(847) 699-1223, email: [email protected]
 

November 6, Skokie 7:00pm

This month Marrea Winnega, Ph.D., consultant to many school districts and specialist in Autism Spectrum Disorder and related disorders will be our guest speaker. North Suburban ASI chapter meets at Skokie Village Hall ,5127 W. Oakton , Lower Level - Community Room. Michael: 847/541-9969, email [email protected]
 

November 8, Gurnee 7:00pm

Come to the Warren Township Center (Southwest Corner of Washington and Almond Rds.) Alyson Beytien from LADSE/Illinois Autism Project Training will be on hand to discuss what the Project can do for you. Eric: 847/543-4502.
 

November 8, Freeport 6:00pm

Networking For Families has found a new home at the Martin Luther King Jr. Community Center, NICAA Head Start Program, 511 S. Liberty Ave. A pizza supper will always be provided, too! Nov. 8 - parents will hear from Family Ties Network's Chris Wasik, who will discuss IDEA and disability rights in general. Siblings age 8 and up have their separate sibling support group, this month a proper "sibshop" with lots of fun activities thanks to StarNet. As always, child care is provided, separately, for younger kids and kids with special needs. Nov 22 - no meeting - go eat turkey! Beth: 815/362-2410.
 

November 9, Romeoville 6:30pm

Parent support group meets once again at R.C. Hill Elementary School, 616 Dalhart Ave. This month they will have a speaker from the Illinois Autism Project. Miki:815/886-0080
 

November 10 , Rockford 9:30 - 11:30am

The Northwest Illinois Autism Support Group will discuss our kids and sexuality. Come to Children's Development Center, 650 N. Main.. Note that from now on you need to register at least a few days in advance to attend this meeting and to reserve free on-site kidkare. Call Patty Hobbs: 815/965-6745
 

November 12, Chicago 6:00pm

Parent support group of Illinois Masonic meets at The Pediatric Development Center, 3040 N. Wilton, 2nd fl. Kidkare is available IF you RSVP ASAP. Val: 773/296-5854.
 

November 13, Galena 6:30pm

Galena Parent Advocates meets monthly; locations vary so check www.galenaparentadvocates.com closer to meeting date for this month's locale. This month I see that Wendy Partridge from the Illinois Autism Project and folks from Project Choices will be on hand to discuss Accessing the General Education Curriculum. Call 815 777-2796 to register
 

November 13, Plainfield 6:30pm

Support group to meet at Lakewood Falls Elementary School, 14050 S. Budler Rd. Lupe: [email protected] or call 815/293-0529.
 

November 13, Villa Park 7:00pm

Parent support group meets at DuPage Easter Seals... to hear a speaker form the Illinois Autism Project! Limited on-site free kidkare if you rsvp in ADVANCE - please call Sharon Pike at 630/620-4433.
 

November 13, Chicago 6:00pm

The ASI Metropolitan Chicago Chapter meets at the Easter Seal Therapeutic Day School, ITT campus, 3424 S. State St. Grace: 773-233-4716.
 

November 13, Peoria 6:30-8:00pm

Parent support group will meet at Faith Missionary Church, 1825 S. Airport Rd. in Bartonville (near Peoria) for yearly elections and supportive networking, etc. Please RSVP to Lauri at 309/697-3300 or [email protected].
 

November 17, Chicago 10:00am - 1:00pm

Chicago South Side ASI chapter usually meets the third Saturday of the month meets at the Hayes Park District Building, 2936 West 85th St. but I was playing phone tag with Wanda and have not been able to confirm the date or if she has a speaker planned, so you'd best call before attending. Wanda: 815/469-5870
 

November 18, North Riverside 2-4:00pm

Asperger/High-Functioning Autism Support Group has a new home a few miles south of the old location. Come to the North Riverside Public Library, 2400 S. Des Plaines, to learn about Improving Social Skills. Debbie: 708/383-1209
 

November 20, Elmhurst 6:45-8:45pm

Center for Speech and Language Disorders Parent Support Group meets at 195 W. Spangler, Suite B. This month's topic is Music Therapy, with presenter Jill E. Tatz, M.A.For more information e-mail CSLD at [email protected]. To RSVP, call Evelyn Miko at (630) 530-8551 ext. 104 by Friday, Nov. 9.
 

November 20, Bolingbrook 7:00pm

The Far West Suburban ASI Chapter will this month have Alyson Beytien, project assistant from the Illinois Autism/PDD Training and Technical Assistance Project on hand to explain the project and garner training ideas .Come to the Bolingbrook Medical Center (630/226-8100 for directions ONLY; 630/969-1094 for support group info.)
 

November 20, Flossmoor 7:00pm

Chicago South Suburban ASI Chapter meets at Flossmoor Community Church, 2218 Hutchinson. Drina Madden, M.A., CAS, a Neuro-Developmental Specialist, will be the guest speaker. Penney: 815/462-4556.
 

November 26, Geneva 7:30pm

Parent support group meets at the Chronicle Building, 1000 Randall Road. Susan Lange, O.T. will discuss Calming and Coping - Sensory Integration and Emotional Regulation For more info check the CTS website; www.commtx.com or call Shelley Swanson (she'd like ya'all to RSVP this month if possible) at 630/208-8880
 

November 27, Schaumburg 7:30pm

Northwest Suburban ASI Chapter meets at the Township of Schaumburg Meeting Hall, 25 Illinois Blvd., in Hoffman Estates. Hey all - our own Jennifer Bollero, parent and attorney will be on hand! Randee : 847/884-9194.

November 29, Oak Lawn 7:00pm

Parent support group meets at Hope Children Hospital, sw corner 93rd & Kostner. Call Jean for more info: 708/229-0653.
 

Wheaton

Advocacy 200 will be having a social meeting with discussion and presentation about holiday gift ideas for the developmentally disabled (talking pen, Palm computer coach, etc.) Site in Wheaton. Call Brian @ 630/462-1980 in early November for meeting date/site.
 

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NOTE - StarNet workshops give priority to parents living within their region. If there is a workshop you wish to attend but it is not in your region - let your local StarNet folks know you'd like them to replicate it in your region. StarNet folks are waiting to hear from you. Don't make 'em guess what you want or need to learn about.
 

November 1 - 3, Schaumburg

Illinois Council for Exceptional Children: "Working Together for a Brighter Future"

Opening General Session: "Creating Positive School Climates So That All Students Really Do Learn" Additional workshop topics include: Legislation, Recertification, Alternate Assessment, Instructional Strategies, Behavior Interventions, Curriculum Modifications, Autism, Inclusion, Diversity, Special Workshops for Paraeducators and more!!!!!!!! Call 847/244-8816 or 815/875-2645 for more information
 

November 2, Lisle

Autism Society of Illinois 24th Annual Conference

Ronald B. Leaf, Ph.D.will speak on the topic of Basic Applied Behavior Analysis in the Treatment of Autism.

Dr. Leaf, a licensed psychologist who has over twenty-five years of experience in the field of autism, has long worked with Dr. Ivar Lovaas at UCLA. Dr. Leaf was extensively involved in several research investigations, contributed to the Me Book and accompanying videos. He is also the co-author of A Work in Progress, a recently published book on Behavioral Treatment. Additionally, local parent Dr. Ronald Kallen will provide an update on the use of Risperdone as a medication for some kids with autism. Call ASI ASAP to request membership information.

Autism Society of Illinois

2200 S. Main Street, Suite 317, Lombard, IL 60148-5366

630-691-1270 - Fax 630-932-5620

www.autismillinois.org
 

November 7, Rockford

"Understanding Communication and Social Challenges & Providing Appropriate Intervention Strategies for Individuals with Autism"

Jenny Potanos, everyone's favorite SLP, will provide this am. workshop. In the afternoon, another SLP, Michele Ricamato, who has trained with Greenspan and Weider, will present "Down on the Floor: An Overview of Dr. Stanley Greenspan's Developmental Individual-Difference Relationship Based Theory". This is one of a series of workshops sponsored by The Northwestern Illinois Association. Registration is by mail only, so call NIA 815/226-3302, ext. 14 and ask to be sent a registration form today if interested. Preference given to folks living in Rockford and surrounding counties.
 

November 7 & 8, Staved Rock (Utica)

"Recognizing and Supporting People with Autism/PDD"

Barbara Doyle yet again offers this two-day training session which could be useful to parents not yet self-educated about autism; also it would be good for new teachers and staff who probably learned very little about autism in college. For more info call UIC Community Education at 312/413-1535. Note this is repeat of what was offered in Sept. and Oct. at other locations.
 

November 9, 10, 11 - Tysons Corner, Virginia

(Washington D.C. area

"Autism and Disorders of Relating and Communicating - Breaking New Ground in Clinical Care"

A whole slew of folks (Greenspan, Brazelton, Teitelbaum, Carbone, Chez, Merzenich, etc.) will present on topics as varied as Verbal Behavior Therapy to Sensory and Pain Thresholds to Neuropharmacological Treatments to GI Tract, Immunizations and Autoimmunity. Oh, why not make a quick phone call and ask for your own copy of the conference flyer - it is as big as one of my newsletters. 301/656-2667.
 

****November 10, Oak Forest

"Enhancing Communication Skills at Home and School for Children with Autism/Pervasive Developmental Disorder"

Judy Kmark and Nancy Bartosz-Thompson, Kid-Kit Education Consultants, will discuss specific adaptations for home and/or school that can be used to provide optimal communication for our kids. For more info about registering for this free StarNet Region VI morning workshop call 708/342-5370
 

November 13, Tinley Park

"Sexuality and the Person with Disabilities"

Orieda Horn Anderson, sex educator for over 58 years and long-time family life educator for persons with disabilities will present this workshop that is designed to address the concerns of parents and caregivers regarding the issue of sexuality and persons with disability. This is not a topic we as parents can ignore as puberty is an eventuality for all our kids. For more info about attending this workshop contact the ARC of Illinois at 708/206-1930.
 

November 14, Carol Stream

"The Adolescent and Young Adult (14-21 years) with Autism/PDD"

One of the Illinois Autism/PDD Training and Technical Assistance Project Parent Trainings. For more info about this training contact Kathy Gould, Project Director, at 708/354-5730, email [email protected], or visit www.illinoisautismproject.org
 

November 15, Chicago

"Auditory Integration - Sound Training"

Dawn Zibricky & Sarah Aimaro will discuss the merits and uses of AIT to help kids with various disabilities, including autism. A discussion of hands-on approaches to home and classroom interventions will also be included. Contact StarNet Region V for more info at 773/553-3413
 

November 16, Palatine

"Early Identification of Autism and Appropriate Intervention"

Karen Simon-Leff will cover early signs that can indicate a child is at risk for an autism diagnosis; also how to help families get started, and various pathways to treatment. Contact StarNet Region II for this one: 847/803-3565
 

November 29, Rockford

"Strategies for Success"

Peg Mazeika will present structured teaching strategies that can be used at school or home. Practical applications will be featured - please bring your own markers, scissors and glue!! This is one of a series of workshops sponsored by The Northwestern Illinois Association. Registration is by mail only, so call NIA 815/226-3302, ext. 14 and ask to be sent a registration form today if interested. Preference given to folks living in Rockford and thereabouts.
 

****December 1, Chicago

"School Discipline: IDEA and Illinois Rules"

Special Education Attorney Matt Cohen will provide all the info you need (or hope you won't need) to deal with school discipline of your special kid. This all-day event is sponsored by the Family Resource Center on Disabilities so contact them at 312/939-3513 to register (or use the flyer attached to this newsletter)
 

December 4-5, Carol Stream

"Discrete Trial for Games/Recreation/Leisure"

One of the Illinois Autism/PDD Training and Technical Assistance Project Parent Trainings. For more info about this training contact Kathy Gould, Project Director, at 708/354-5730, email [email protected], or visit www.illinoisautismproject.org
 

December 5, Rockford

"Behavioral Support in the Classroom: Design to Implementation"

Victor Morris, L.C.S.W. will include a model for understanding student behavioral needs as part of this presentation. This is one of a series of workshops sponsored by The Northwestern Illinois Association. Registration is by mail only, so call NIA 815/226-3302, ext. 14 and ask to be sent a registration form today if interested. Preference given to folks living in Rockford and surrounding counties.
 

****December 7, Collinsville

"Trials, Tribulations and Triumphs"

Liane Holliday Willey, adult with Aspergers and author of Pretending to be Normal, will lead this full-day workshop. Call 681/397-2131 for registration information.

December 10, Lake Zurich

"Do's & Don'ts for Serving Children with Autism: Mistakes Along the Way"

Karen Simon-Leff , using videos that demonstrates integrated therapy & services, explores the benefits of this model, practices that work, and what happens when interventions backfire. Strategies for shaping a child's progress over time will also be discusses. Contact StarNet Region II for registration info at 847/305-3565.
 

****December 14, Chicago

"Activity Schedules"

Mary Crissman leads this workshop on how to create and use activity schedules for kids with autism, including how to troubleshoot common problems. Contact StarNet Region V for registration info at: 773/553-3413
 

January 16, Schaumburg

"Building an Effective IEP: 8 Steps of Negotiation"

Jennifer Bollero & Pat Kluzik Stauch

Parent and Attorney Jennifer Bollero has developed an 8-step negotiation process that can help parents and professions collaborate effectively to create IEPs that can truly benefit a child. An overview of IDEA is included. If you haven't yet had a change to absorb Jenny's knowledge, now's your chance. Contact StarNet Region II for registration material at 847/803-3565

****January 17 & 18, Rosemont

"PECS - Picture Exchange Communication System Workshop"

Mindy Glassberg and Jo-Anne Matteo, M.S. CCC/SLP from Pyramid Educational Consultants will present this two-day workshop (rescheduled from November) at the O'Hare Holiday Inn in Rosemont. Cost is $235/parent (more for professionals) as this will be a substantial PECS training from the PECS folks themselves! Cost includes a PECS manual, detailed handouts, and meals. For more information about either this workshop or PECS please contact:

Erin DiMaio, Conference Coordinator
Pyramid Educational Consultants, Inc.
226 West Park Place, Suite 1
Newark, DE 19711
Phone: (302) 368-2515
Toll free: (888) 732-7462
Fax: (302) 368-2516
www.pecs.com
[email protected]

"Autism - A Parent's Perspective"

Susan Merano is listed as the presenter for this StarNet Region VI offering. Save the date (they aren't taking registrations yet, so I'll give you that info next month!)
 

****February 7, Chicago

"Understanding Aspergers Disorder"

Marrea Winnega, Ph.D. presents this overview of what is (and isn't) Aspergers Disorder. Theory of Mind will also be discussed. Contact StarNet Region V for registration information at: 773/553-3413
 

****February 15, Chicago

"Functional Behavior Assessments: Tools for Designing Behavior Intervention Plans for Young Children with Autism Spectrum Disorders"

Sue Epich & Lorrain Altamirano will cover the above topic - for more info or to register contact StarNet Region V at 773/553-3413
 

****February 19, Elk Grove Village

"PECS: Picture Exchange Communication System"

Teri Louer will run this workshop focusing on understanding and using PECS in place of using communication in "maladaptive" ways (kid, don't throw a sippy cup at me to get juice - hand me the symbol card for juice!). For registration info contact StarNet Region II at 847/803-3565
 

February 23, 2002, Skokie

Day-long Special Education Law Seminar with Peter and Pam Wright

Yes, the folks from Wrightslaw are coming to Illinois! Peter Wright, the nationally known special education attorney and advocate along with his wife, psychotherapist Pam Wright, will present a day long seminar for parents, teachers, administrators and other related professionals. Register early, as this event will certainly be sold out. Limited seating available. [email protected] or call Special Connections at 312/914-0591.
 

February 26, 2002, Rockford

"PECS, Social Stories and Social Skills"

Peg Mazeika will lead a hands-on day exploring all of the above. Yes, another from the NIA series - figured I'd best include them all, since they do fill up fast. Registration is by mail only, so call NIA 815/226-3302, ext. 14 and ask to be sent a registration form today if interested. Preference given to folks living in Rockford and surrounding counties.

February 26, 2002, Carol Stream

"Introduction to Autism and Visual Strategies for Children with Autism and other Communication Disorders"

One of the Illinois Autism/PDD Training and Technical Assistance Project Parent Trainings. For more info about this training contact Kathy Gould, Project Director, at 708/354-5730, email [email protected], or visit www.illinoisautismproject.org

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Sharon Hurst of the Auditory Training and Education Center will be holding an AIT (Auditory Integration Therapy) session in Downers Grove, IL at the Double Tree Suites on Butterfield Rd. from Monday, November 5th thru Wednesday, November 14th. For more info about AIT or to reserve a slot for your child please call 888/248-0990, or email [email protected]

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Parent looking for good primary-care pediatrician who is open-minded about alternative treatments for autism, such as dietary, supplements, etc. I have a 12-year-old boy with Aspergers. Please call Elaine at 773/481-0548
 
 

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Ms. Bollero has written a splendid article about parental advocacy for special kids that was recently mentioned in the Wrightslaw Special Ed Advocate (which mention I rip off and reprint verbatim below). If you have internet access, go and read what this fellow parent (and attorney) has written!

"As an attorney, arbitrator, mediator and loving mother of an autistic daughter, I have a unique perspective on the process by which families prepare their children's Individualized Education Plans (IEPs)."
 

In "Play Hearts, Not Poker," Ms. Bollero describes advocacy as an intellectual activity while parenting "involves great emotions and heavy decisions." She explains why parents need to learn the rules and strategies. When you learn the rules, you reduce the risks when you negotiate for your child.
 

"Your child's IEP should never be a gamble. IEP meetings should not turn into a game of nerves with everyone trying to guess who is bluffing, betting or folding on the strength of their guess. An IEP should be a strategic meeting where a talented advocate need not lie about his or her hand, but can play any facts to the child's advantage."
 

Read "Play Hearts, Not Poker" at:

http://www.wrightslaw.com/advoc/articles/iep.bollero.hearts.htm
 

NOTE: This article was originally published in The Beacon, the electronic journal of special education law and practice from Harbor House Law Press:

http://www.harborhouselaw.com/beacon/2001.v1n1.htm

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Some of Dorothy Traver's childhood memories involve her and her sister, Jeanne Harrigan, doing typical kids' stuff, like watching cartoons or tearing open presents on Christmas morning.

Plenty of other recollections, however, involve Dorothy playing a more maternal role with Jeanne, who's just 11 months her junior. Dorothy remembers, for instance, helping Jeanne get dressed or guiding her across the street.

Today at age 52, Traver, who lives in Wheaton, still struggles between a maternal role and one as a sibling-an equal-with Harrigan, who was born with mental and physical disabilities.

Indeed, in families where a child has special needs, siblings grow up with a set of experiences unique from those shared between healthy brothers and sisters. And as they age into adulthood, the healthy sibling must often assume the difficult duty of taking over for a parent to care for his brother or sister, especially if the disability involves mental impairments.

Because America's aging population has brought more siblings into crucial guardian roles, and because American culture is increasingly tolerant and accepting of disability, efforts to help special-needs individuals are widening to include the struggles of healthy siblings.

"For the past 10 years, I have concentrated on sibs. They were underserved family members who really deserve attention," said Don Meyer, director of the Arc of the United States' Sibling Support Project and founder of SibShops, a program with more than 200 locations nationwide to help give children an opportunity to discuss having a special-needs sibling.

Meyer hopes to help kids be more comfortable with the complex range of feelings they may experience, from jealously that their sibling requires so much of their parent's time to a fierce instinct to protect their brother or sister from harm. If, as children, healthy siblings can come to grips with the impact their special-needs brother or sister has on them, Meyer believes that as adults they'll be ready to assume any caregiving duties that are necessary.

"If [well] siblings have a chance to meet their peers, they can meet others who understand, who really Oget it,'" said Meyer. "The kids will feel more appreciated for the many contributions they make [to their families and special-needs brother or sister]," he said. "We then hope that they will elect to remain lovingly involved in their siblings' life."

"Truthfully, there need to be more sibling support groups everywhere," said Judith Loseff Lavin, author of "Special Kids Need Special Parents" (Berkley Books, $13.95). "What I've found is that there are support groups for younger children-not enough of them, but some. People can sometimes find groups through the organization that supports the individual condition that their child has. But right now, they are hard to locate. I hope that will change."
 

SibShop is probably the most widespread effort, and it serves brothers and sisters of children and teens with a physical or mental disability. The Web site www.seattlechildrens.org/sibsupp lists several Chicago-area groups.
 

"Especially with the younger kids, we play a game call `Dear Aunt Abby,' whereby children pick a card with a question, and the group then discusses possible answers," said Besser.

Questions, for instance, might focus on: "What can I tell my friends when they ask me what's wrong with my sister?" Or, "I'm afraid I might have caused my brother to be sick, could I have done it?"

Earning admiration

It's not just problems that healthy siblings share; they often express an admiration for the courage or persistence shown by their brother or sister, said Kristina Lind, clinical coordinator for Little Friends, a Naperville non-profit offering services to adults and children with disabilities.

The sibling program Lind runs often invites speech, occupational and physical therapists to talk to the children who are curious about what these professionals actually do to help their siblings.

Patti Bonifas, an Aurora mother of four sons, whose oldest suffers from autism, relates that her two youngest sons, now ages 9 and 11, have participated in the Little Friends sib group for the last two years.

"My 11-year-old said that he doesn't want to take basketball if it means he'll miss the group--that's how much he likes it," said Bonifas. Finding "something special" for their healthy children is often appreciated by exhausted parents, because they worry that they pour all their time and energy into caring for their special-needs child.

Too much to do

"Parents are often driving their child to therapy, but the brother or sister needs special time of his own too," said Patti Hobbs, family support specialist with Easter Seals Children's Development Center, Rockford.

Ironically, however, families' busy schedules have caused some sibling support groups to shut down.

"We stopped our group because it was too difficult to find a day and time when enough children could come," said Margaret Wold, a social worker with the North Suburban Special Education District.

The Internet can bring siblings, both adults and children, together at time they deem convenient, said Meyer, who recommends sibnet.org. Another, less obvious reason children growing up alongside special-needs siblings need emotional support is that an astounding 75 percent of marriages fail under the strain of raising a child with a disability, said Barton Stevens, owner of Life Planning Services, a Phoenix firm providing legal and financial services for families with a member with disabilities.

No answers

Although her parents' marriage was intact and they provided a strong, loving presence for all of their four children, Kathy Tobin of Western Springs regrets that focused attention to siblings wasn't available to her when she was a child. Tobin and her sister Kim Erickson, who has a mental disability, are now in their 40s.

"I was told my sister was slow and I didn't know how to describe Kim to my friends,"Tobin said.

Now, however, Tobin said that she does find sympathetic, knowing advice from others who share in her adult concerns on how to be an effective guardian for her sister through meetings with other siblings of the residents of the group housing operated by the Ray Graham Foundation, a Downers Grove non-profit that provides an array of services for adults and children with disabilities.

"We started a parent-guardian group, and we meet four times a year, and I know that's my support," said Tobin.

Although Tobin said that she and her husband enjoy having Kim be an integral part of their lives, there are occasional problems finding enough time to attend to Kim's needs.

The two other Erickson siblings, said Tobin, live out of town. They visit as often as possible, but when they do, Tobin said she has experienced guilt if Kim seems to favor her over her other brother and sister.

Unique struggles

"I've always had it in the back of my mind that I wanted to take care of Kim, but I don't want to seem as if I've forced it," said Tobin.

Her other sister is planning to move closer to Illinois, and Tobin said she's looking forward to sharing guardianship duties then.

While there's no emotion, from guilt to pride, that's unique to siblings of the disabled, these family members do experience familial struggles unknown to others.

Traver, for example, remembers a time shortly after their mother died when she lost her patience with her sister, who was expecting Traver to assume the same pampering their mother provided her.

"She would like me to be her mom," said Traver. "I remember that one time she asked me to put the brake on her wheelchair, something she could easily do herself. I had to tell her: `I am not your mother, I am your sister.'"

Copyright © 2001, Chicago Tribune
 

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Holiday cards created by children with autism carry a double message: They express your good wishes and they show your support. So buy your holiday cards from HAVE Dreams (Helping Autistic Voices Emerge). This year we are offering 6 traditional card designs and two photo cards (fits 3 1/2" x 5" photos). All of the drawings have been done by children of HAVE Dreams and are printed on heavy white gloss paper stock. Cost: 10 cards for $10.00 (No minimum, corporate orders welcome) Pick up: 11/16/01 from 11:00-8:00 and 11/17/01 from 11:00-6:00 at HAVE Dreams - Shipping cost: $4.25 Tax: none. Orders that require personalization must be submitted by 11/2/01 (additional cost, too - contact HAVE Dreams for details). HAVE Dreams is a 501 (c) (3) not for profit organization. If you would like to make a donation or have an order form mailed to you contact:

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Must possess stamina, sense of humor, and ability to juggle several tasks at once. For example, you must be able to update a mailing list and print address labels while browning a roast for dinner and breaking up a fight between two kids who both want to feed the cat....... another example might be the ability to frequently glance at your e-mail and copy (snitch!) likely tidbits of information from the on-line posts of various folks, which tidbits you then cut and paste into a growing file of material for the next month's newsletter. Of course, while doing this you must also be talking on the 'phone with another local mom (who is also checking her e-mail while talking to you), untying your daughter's tightly knotted shoes, and making your son's unvarying school lunch of plain saltine crackers, pristine red delicious apple, Gatorade, and a wedge of dark Hersey's chocolate.
 

Perks of the job include being able to use the excuse of needing updated support group information each month as a reason for 'phoning fellow parents, many of whom you may have never met face-to-face, but all of whom are witty, compassionate adults who speak in complete sentences (and seldom whine, unlike some kids I know!)
 

Seriously, once the noble, kind-hearted, brilliant next editor of this newsletter gets their name on all the StarNet mailing lists (along with a few others), and bookmarks a few key websites, along with making sure he or she is on the AutismNews on-line list, the work will be half done. I can provide all the needed contact info for further gleaning of info each month - it takes about 30 - 40 minutes a day over the course of a week to slam this puppy out. I just no longer have those spare minutes, and after about 5 years am getting pooped! Serious candidates for becoming the next Newsletter Mom (or Dad) please contact JFS at 847/742-4582, email [email protected] No pay or profit involved, just the warm fuzzies of knowing you are providing a useful service each month. And a lot of new friends.

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IDEA Public Forums on Early Intervention and Special Education Services have been held around the state. You may still respond to this questions discussed at these forums and send them to the folks listed below. Since space forbids my reprinting the entire two-sided sheet, you may wish to copy the questions onto a separate sheet of paper to answer them. Providing your name, address etc is OPTIONAL.
 

"Comments should be systematic in nature and not focus on a particular child or specific incident. Individual concerns need to be raised either through the complaint or due process system. The purpose of the public forums are to gather information that will help Illinois and the U.S. Department of Education gain a clear understanding of where Illinois is in the delivery of services to infants, toddlers, children and youth with disabilities and to develop a plan that will ensure the on-going improvement of services that will result in enhanced opportunities for infants, toddlers, children and youth students with disabilities."

Completed forms can be mailed to either of the following:

Jack Shook Janet Gully
Division Administrator Bureau Chief
Special Education Compliance Bureau of Early Intervention
Illinois State Board of Education Depart ment of Human Services
100 North First Street 623 East Adams Street
Springfield, IL 62777 Springfield, IL 62701

Part B - Regarding children from ages 3 - 21:
 

1. Are students with disabilities receiving the special education and related services they need? (Promote a high quality education?)

2. To what extent do students with disabilities participate with non-disabled students? Do all students, regardless of placement, have access to the general curriculum?

3. Describe the planning process that takes place for students age 14 and older to ensure a successful transition to work, independent living, or additional education services (e.g. college, technical school)? Are students receiving the services needed?

4. How are parents involved in the education of their children with disabilities?

5. How is the State involved in assuring that appropriate services are provided to students with disabilities?

6. By the child's third birthday, does transition planning result in a timely provision of needed supports and services to a child and a child's family?
 

1. Are there any barriers to the process of referring infants and toddlers to the Early Intervention (IE) system, or in obtaining evaluations?

2. Do all infants and toddlers with disabilities and their families receive all the services they need? Where do children receive their services? (Community settings, day care, homes, libraries).

3. How are families included and supported in the process of development of the IFSP in making decisions about their child's services? What family support services are available in your community?

4. By the child's third birthday, does transition planning result in the timely provision of needed support and services to a child and a child's family?

5. How is the State involved in assuring that appropriate services are provided to infants and toddlers with disabilities?

6. Are families aware of the procedural safeguards provided under IDEA? (Due Process, Mediation, Complaints, Consent, Notice)

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Cary village trustees have unanimously approved a plan to open a group home for six autistic children in a residential neighborhood in the 800 block of West Main Street despite strong opposition from a half-dozen neighbors who live next to the property.

The group home should be open in spring or summer, said Stephen Lamal, a trustee who is also a member of the board of Children's Center for Autism, a year-old organization that will manage the home. A sprinkler system, a backyard fence and door alarms must be installed before the home can open. No outward sign will indicate that the property is a group home. A family is currently renting the house. "It would be a seamless fit in the neighborhood," Lamal said Wednesday.

The biggest hurdle in coming months is filing required paperwork with the Illinois Department of Human Services, Department of Children and Family Services and other regulatory agencies, he said. Once the home opens, it would be the third group home for autistic children in the state. The other homes are in the Rogers Park neighborhood of Chicago and in Carol Stream.

Shawna C. Egan, executive director of the Children's Center for Autism, said three staff members will be on duty during the day and at night. Children 6 to 12 years old will live in the home. As many as six buses will take the children to school.

Egan said the children who live in the home will have severe cases of autism and need constant attention. She said parents and siblings of autistic children will be affected most. They will be allowed to start living a "normal" home life. "Twelve parents and many siblings will be affected," said Egan, who has an autistic child. "The parents will be able to go out to dinner and a movie and spend time with their kids who are not autistic."

Egan said more group homes are needed. She said one child in 400 has some form of autism. About 50 percent of the cases are severe. John Roth, the village's attorney, told trustees Tuesday night that the group home will not set a precedent. Any other similar facilities would be considered on a case-by-case basis.

Susan Marie Connor, a professor at John Marshall Law School, said the group home will not affect neighborhood property values if it looks like other homes. Connor said she read about the issue and decided to appear before the village board on behalf of the group home.

But some neighbors aren't convinced. "The people who live farther away are the ones who are more in favor of this," Mike Cholewa said. "I've made a considerable investment in my property. No one is going to want to buy a home next to a group home. ... Is a residential neighborhood a proper place to put an institution?" Cholewa said a nearby park with a pond, and a concrete wall with a sewer pipe would be hazards if the children get out without supervision.
 

Gee, Mr. Cholewa, don't you know the "institutions" have mostly been closed? What you are going to be living next to is a house, just like yours, in which the family will consist of six children and their care-taking adults. A residential neighborhood is exactly the proper place for these children.
 
 
 
 

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