The Spectrum June 2005
Dear friends and colleagues,
At our annual meeting in April, I agreed to take on the role of President. I intend to carry forward the mission of the Autism Society to support families, professionals and people on the spectrum in our community. I have a fabulous Board of Directors that is committed to serving the community as well.
I have big shoes to fill in the role of President. After almost 12 years as the President of our chapter, Donna Rosinski decided to step down in April 2005.
Through her leadership, our chapter grew and flourished. She was the driving force behind the chapter’s activities and, often, was the person who carried out many of the chapter tasks, both large and small. For me and many others in our community, Donna was the first contact in the world of autism after our child’s diagnosis.
Donna listened as we cried, she offered sage advice, and she advocated on our behalf while we were all busy helping our own children. Thank you Donna, for all you have done for us!
Along with the change in leadership, some logistic changes have been made. We have a new chapter phone number: 608) 213-8519. Our email address remains the same: asamadison@charter.net.
One of the first phone calls I received as new president was from member Maria Weber, who had accepted a donation from Our Lady Queen of Peace School in Madison for over $2800 on behalf of the Madison Area Chapter. Each year, the school’s student council chooses a charity to raise funds for. This year they held the successful “Raffle for Autism.” Many thanks to the generous community of Our Lady Queen of Peace School!
Please mark your calendars: the Parent Support Group will continue to meet this summer on the third Tuesday of each month: June 21, July 19, and August 16, 7-9 PM at the Midvale Community Lutheran Church 4329 Tokay Blvd, Madison.
On Sunday, June 26th there will be a public forum presented jointly by our chapter and the American Society for Neurochemistry. I highly recommend that you take the opportunity to attend and hear about some of the cutting edge of autism research.
On Sunday, July 24th, parents of a newly diagnosed child can learn about what the autism diagnosis means and what resources are available as well as make some connections with other "new" parents. Internationally recognized autism consultant Glenis Benson and member of our Board of Directors will be presenting. For more information about our summer events, see page 10.
We are busy planning our Fall 2005 events and meetings. Be on the lookout for more information regarding these events.
Molly Immendorf, President
Dear friends and colleagues
:It has been an honor and a privilege to have been a part of your lives for the past twelve years.
I have been fantasizing about leaving for years, especially at certain times when the workload was overwhelming. I hoped that someone else from the board would step up and run, and sure enough, she did.
In April, Molly Immendorf decided to run for president if I would assist her, which I have promised to do. I have gotten to know Molly over the past year, and I have great confidence in her ability to do the job. We have a strong board to support her, and I hope that all of you will support her in moving the chapter forward.
I am proud of that some of the work that I’ve done has made life better for families affected by autism and the professionals who work with them. I can ask for no better legacy than to have that work carried on.
Donna Rosinski
Donna Rosinski honored at ASW 2005 Annual Conference
Linda Breur, Autism Society of Wisconsin President, presented a plaque honoring Donna Rosinski with the following words: “On behalf of the Autism Society of Wisconsin I want to express appreciation for Donna Rosinski’s years of volunteer service to our organization. She was well respected on the ASW Board of Directors for her commitment to advocacy, membership support and informational resources.
Her annual contribution of the Autism Resource Directory has been a valuable reference guide for chapters across the state in addition to her own chapter. The Madison Area Chapter has been fortunate to have such a knowledgeable and dedicated autism advocate to represent them these past years.”
Thank you, Donna!
The Will and Molly Trip to the Mall of America
by Molly Immendorf
For the last two spring breaks, while others were headed to warmer climates, Will (my 8-year old son on the spectrum) and I packed up and went to the Mall of America and Camp Snoopy. It has become our annual outing together because no one else in the family likes malls OR amusement parks. My husband Lou likes to remind me that when I was pregnant with Will, I hoped that this child would like roller coasters, so I’d finally have someone to enjoy them with me. Boy, did I get my wish! Will loves roller coasters.
In planning our 2005 trip I used an online hotel discounter, Priceline.com, to get a really inexpensive room. It was so affordable ($38 per night) that we stayed an additional night. Three nights and four days of fun, fun, fun!
Will and I started our adventure on Monday morning of spring break week. Will had plenty of DVD movies, video games, books, and magazines to last the drive. I had plenty of CDs to which I could sing off-tune. We also had the thermo-electric cooler packed with water bottles, juice, and snacks for our journey. This cooler has a plug for an indoor outlet, so we were able to use it in our hotel room for milk, juice, and water, too. Mornings were easy and low-cost: we had juice and cereal in the hotel room.
The Camp Snoopy amusement park inside Mall of America is great for kids on the spectrum. Caution-it is really noisy, so if you have a kiddo who is sensitive to loud noises, bring ear plugs. The best ear plugs we’ve found are in the power tool aisle in any big home improvement store like Home Depot or Menard’s.
These ear plugs look like portable CD headphones, but with changeable plugs on the ends.
So back to why Camp Snoopy. is so great. For one thing, Camp Snoopy offers a free companion pass for one person accompanying a child with ASD. To obtain the pass, go to Guest Services with your child and explain that he or she is on the autism spectrum. At Guest Services, you can purchase a day pass ($24.95) or an annual pass($99.95). The annual pass that we purchased for Will has his picture on it.
We were told to flash the passes at the alternative entrances to the rides (often the exit). At Camp Snoopy, Will usually only wants to ride a few of the attractions. This trip, Will’s favorite ride was The Timberland Twister. For the uninitiated, The Timberland Twister is a rollercoaster that not only goes up, down, and around on a track-it also SPINS!
We used the alternative entrance to the ride and when we flashed our passes, we were almost immediately escorted to the next available car. The attendant then asked if we wanted to ride twice in a row. Of course, Will replied, “Yes!” much to the delight of the two pre-teen girls who ended up riding with us. Up and down and spinning around, my head felt like scrambled eggs after the first time. But Will wasn’t fazed at all. He wanted to ride again and again. We paced ourselves and limited our Timberland Twister rides to two or three each day. Just not right after a meal.
We did leave Camp Snoopy once in a while. The Apple Computer store offers a very low-key respite: Mac computers loaded with games that anyone can play. We also enjoyed watching Krispy Kreme donuts being made each day. Another gem at the Mall is the new IKEA store: Will had a blast in the IKEA children’s playroom. IKEA provides a beeper, so you can wander the store or, like I did, have a pleasant meal in the IKEA restaurant and read a book. A nice hour-long break for both of us! Will and I both really enjoy the chance to get away together. We’re looking forward to next year’s trip. Maybe Camp Snoopy will have a new roller coaster that we can try out together! .
The National Medical Home for Autism Initiative
“If we can make the system work better for children with autism, it will work better for everyone.”
That’s the word from Christine Breunig, Project Coordinator for the National Medical Home Autism Initiative (NMHA) at Madison’s Waisman Center.
A cooperative agreement with the federal Maternal and Child Health Bureau (MCHB), the four-year project began in July 2004.
What is a Medical Home?
The Medical Home is not a building, a house, or a hospital. Rather, the Medical Home is a means to deliver medical services effectively by connecting the care between the many providers who treat children with special health care needs. As a “family-centered” approach to care delivery, the Medical Home concept promotes information exchange and coordinated care.
The purpose of the Waisman Center National Medical Home Autism Initiative is to show how the principles of the medical home can help with early identification and intervention for children with autism spectrum disorders.
A lifelong educator, Christine served as an elementary school principal for more than 15 years before taking a position as the Executive Director for Madison’s 4-C Community Coordinated Childcare, Inc.
“In this position I was able to make a difference in care for children before they started elementary school,” she says. “Having worked with elementary school children, I knew how crucial early identification and intervention are.”
Christine’s activities in the first year of the project include working to establish relationships with related projects, both locally and nationally; outreach and education, and advocacy and publi
awareness. She visited the Centers for Disease Control earlier this year for training on the Centers’ new Learn the Signs. Act Early program
“I will be working to promote better detection and surveillance of autism spectrum disorders,” she adds. That will include joining forces with Wisconsin’s Medical Home Learning Collaborative-a number of pediatric practices that are working to implement the Medical Home concept.
Christine is very interested in talking with parents and parent groups to learn more about the experience of supporting a family member with an autism spectrum disorder. The project also aims to explore how the Medical Home concept can improve care in culturally diverse communities.
National partners for the National Medical Home Autism Initiative include the American Academy of Pediatrics and Family Voices, among others. Wisconsin partners include the Autism Society of Wisconsin, Wisconsin Department of Health and Family Services, the Children with Special Health Care Needs Program, and many other key stakeholders.
For more information, contact Christine Breunig at breunig@waisman.wisc.edu
Visit www.waisman.wisc.edu/medhomeautism/ to find additional resources and learn about the project.
Temple Grandin’s Top Three Tips for parents of young children on the spectrum
By Maureen Fitzgerald
Temple Grandin, keynote speaker at the ASW Annual Conference in Green Bay, was signing books and posing for pictures with attendees when I caught up with her in the conference bookstore. Her top three tips for parents of young children on the spectrum?
“First, early intervention is key,” she says. “If you suspect that your child might be on the spectrum, don’t wait for a diagnosis. Join a parent support group in the meantime and find out what other parents are doing to help their kids.”
“Second, be aware of and understand sensory issues. Do what you can to help reduce sensory defensiveness.” Third: “Develop your child’s strengths using his or her special interest. If your child is obsessed with trains, teach reading with trains. Teach math with trains.”
During her keynote presentation, Temple cited the speech therapy that she received as a very young child as being key in helping her learn to communicate. “Turn-taking games really helped.” She credits her mother for pursuing early intervention strategies at a time when very little was known about autism spectrum disorders. Her mother’s insistence on proper etiquette at mealtimes also helped Temple learn social rules. Like many on the autism spectrum, Temple finds comforting structure in rules. Temple was also a featured speaker on the Autism Strand for children and youth on the spectrum. “It was cool to meet her,” says strand participant Molly Waugh.
New magazine on ASD “won’t take sides”
TAP, The Autism Perspective, is a fullcolor publication devoted to autism spectrum disorders. The quarterly magazine delves into a variety of issues that people with autism experience every day.
TAP was founded on the philosophy that those living with and treating autism should have a resource that presents the full perspective of options for therapies, treatments, and services. It also includes personal accounts and inspirational stories.
The magazine presents and eclectic variety of ideas and practices. TAP’s all-volunteer volunteer Advisory Board includes Stanley Greenspan, Ivar Lovaas, and Tony Atwood.
The magazine’s mission statement says: “TAP will provide balanced information on the myriad of therapies and treatments for the vast and complicated realm of autism spectrum disorders, recognizing that effective therapies are equally as complex. TAP won’t take sides. “
The magazine also offers a discussion forum for the autism community.
For more information, visit the TAP website: www.theautismperspective.org
By Nancy Alar Featured presenter at the ASW 2005
Conference, Carol Gray encouraged her audience to create at least half of their social stories as celebratory items so social stories can be something positive for the person, “not just another tool to fix them.”
With that in mind, I wrote the following Social Story to celebrate my son Matt’s graduation from the UWMadison -a big achievement!
Social stories can celebrate small achievements as well-and can help individuals on the spectrum feel good about themselves.
For more information on Carol Gray’s Social Stories, go to: www.thegraycenter.org/quarterly.htm
Social Story For My (Matt Ward’s)
College Graduation
I DID IT!!!!!
My name is Matt Ward and I graduated from the UW Madison on May 14, 2005 with a BS in Mathematics, just before my 27th birthday.
My achievement is even more special since I have autism.
The UW Madison is a very good school. The courses there are difficult.
Mathematics is a difficult major to study, but I succeeded because I like mathematics and I worked so hard.
I have worked VERY hard in school for more than 20 years. Calculus was easy for me. This is one of the good things about my autism.
Many educators and support staff helped me along the way, but I did all the hardest work myself.
My mother and step-father, Nancy and Tom Alar, and my sister, Elizabeth Alar, are especially happy and proud of me. All those who know me appreciate how hard things were for me at times and how many challenges I had to overcome to graduate.
This graduation achievement has made everyone who knows me VERY proud of me and VERY happy.
My support staff, teachers and parents have all told me I am a fine man and a wonderful example for other people with autism.
I am VERY, VERY proud of myself and my accomplishments - especially my UW graduation!
Book Review: Overcoming Autism,
by Lynn Kern Koegel, Ph.D., and Claire LaZebnik
Reviewed by Donna Rosinski
Soon after our child was diagnosed, I recall only half-jokingly asking my husband, “Where’s the instruction manual?” Now, 13 years later, it’s finally here. Lynn Kern Koegel, director of the Autism Research Center at the University of California Santa Barbara and creator of “Pivotal Response Training,” offers in this book, “both a general understanding of how to tackle the symptoms of autism in someone you know and a description of the specific interventions you’ll need to do so.”
Koegel describes her approach as “...one that has grown out of years of research and positive outcomes, and is based on what is known as ‘behavioral interventions’ or ‘applied behavioral analysis’-in other words, if a child is exhibiting problematic behaviors, we can intervene, decreasing the negative behaviors by introducing and reinforcing positive behaviors that take their place.”
But don’t be concerned that what she suggests will be too complicated or difficult for a parent to do. Dr. Koegel gives simple, step-by-step directions for the interventions, and uses no jargon. The book is divided into chapters by symptoms, for, as the author says, “There can’t be one intervention plan for all children with autism, because autism is just a name for a cluster of symptoms that can (but don’t always) include repetitive motions, aggression, a lack of speech development, and an inability to interact socially. By taking each symptom your child expresses and systematically addressing it with a comprehensive intervention plan (which we will show you how to do), you will see gradual, steady improvement in your child or client.”
The book covers the most bothersome symptoms: communication and socialization; how to eliminate tears meltdowns, aggression, self-injury, “stims,” fears and fixations. In each chapter, Dr. Koegel answers common questions and gives an intervention plan, while co-author Claire LaZebnik, a parent of a child with autism, comments on how these interventions worked with her son.
One intervention suggested for decreasing “stims” is vigorous physical exercise. “Through careful research, we discovered that when we allowed our kids to run around and play outdoor sports for ten minutes or more at intervals throughout the day, it greatly increased their ability to focus without stimming. The physical activity must be vigorous, though-it’s not enough just to just take the kid outside and let him/her sit on the grass or walk around the perimeter of the yard.”
To teach the child to socialize with classmates, Dr. Koegel suggests using photos of the children to help your child memorize their names, using his/her visual learning style and excellent memory. After your child knows the names, he can be prompted to greet a child that he meets.
Another socialization strategy the author suggests is to observe your child’s classmates during recess and free choice times to see what activities are popular, and then teach your child to do those activities.
As you can see from the examples that I’ve given, the interventions suggested in this book are simple but effective strategies that either parents or professionals can use. One part of the book deals with education. Dr. Koegel favors inclusion in regular education, citing these facts:
• No conclusive data suggest that children perform better in special education classes.
• A growing body of research suggests social and academic benefits in inclusive settings.
• Typical students perform better when children with disabilities are included in their classrooms.
But she points out, “School programs never seem to work if the school’s staff members aren’t trained. Everyone who will be interacting regularly with your child in any way needs some training in disabilities...and training doesn’t mean going to a one day workshop on autism.”
As I was reading this book, I realized that I was experiencing some sadness and regret that I did not have a copy of this book thirteen years ago. If I had, our child might not be struggling with certain issues now. It’s hard to imagine a higher recommendation for any book.
Book Review: Just Take a Bite: Easy, Effective Answers to Food Aversions and Eating Challenges
Just Take A Bite, by Lori Ernsperger, PhD., Tania Stegen-Hanson, OTR/L,
Foreword by Dr. Temple Grandin.
Future Horizons, Arlington, TX, 2004.
Reviewed by Lezli Redmond
This book enticed me, not only because of its cover (an adorably messy toddler with catsup on his face), but because of it’s subtitle: Easy, Effective Answers to Food Aversions and Eating Challenges. After spending over 11 years trying to get my Aspie son over his food aversions and fixations, I was skeptical that this, or any book could have answers. Easy and Effective? Hah!
Disillusioned with previous professional advice, I was feeling pretty hopeless that our boy would ever eat anything besides “white food” and an occasional chicken nugget.
What a pleasant surprise to discover this book to be interesting, helpful and reassuring. It is the only resource I have been able to find that clearly explains the complexity of the process of eating (for anyone), and articulates the special and complicated eating challenges that children with autism often face. The authors dispel “cultural myths” that surround food, including the belief that problem eaters are “just being difficult,” are acting out a power struggle, or that all this silliness around food is simply a result of poor parenting. I have argued with helping professionals (and grandma) about this one -“If he’s hungry, he’ll eat.” Not so for my son, I have learned. Or for many problem eaters, say the authors.
The authors (an autism specialist and a pediatric occupational therapist) advocate a team approach to nutrition that encourages us to consider environmental and behavioral facts when determining the nature of problem eating. In addition, underlying oralmotor delay, sensory integration dysfunction, phobias regarding novelty, and allergies can interfere with typical eating, to the point of threatening a child’s health (and a parent’s sanity).
Not only is this book well-written and organized, it is understandable and practical. It concisely describes a multitude of reasons for problem eating, and outlines many strategies and activities to try with kids. The treatment plan looked a bit overwhelming to me at first glance, but is presented in five stages with accompanying “lessons,” which makes it more manageable.
I wish I would have had this resource years ago! But, as the authors point out, resistant eaters of all ages CAN learn new skills and experience new foods. This refreshing book has given me new hope and ideas and I highly recommend it to parents and professionals alike.
Newbery Award winner features autism
Jennifer Choldenko,
Newbery Honor Book 2005
Description from Amazon.com:
Moose Flannagan moves with his family to Alcatraz so his dad can work as a prison guard and his sister, Natalie, can attend a special school. But Natalie has autism, and when she’s denied admittance to the school, the stark setting of Alcatraz begins to unravel the tenuous coping mechanisms Moose’s family has used for dealing with her disorder.
When Moose meets Piper, the cute daughter of the Warden, he knows right off she’s trouble. But she’s also strangely irresistible. All Moose wants to do is protect Natalie, live up to his parents’ expectations, and stay out of trouble. But on Alcatraz, trouble is never very far away.
Set in 1935, when guards actually lived on Alcatraz Island with their families, Choldenko’s second novel brings humor to the complexities of family dynamics and illuminates the real struggle of a kid trying to free himself from the “good boy” stance he’s taken his whole life.
Recommended for readers ages 8-12, this book is great for siblings who can relate to Moose’s struggles with having a sister with special needs.
Great books for summer reading: check ’em out!
The Madison Chapter will donate a copy of the following books to Madison’s South Central Library System:
Adam's Alternative Sports Day: An Asperger Story by Jude Welton
Asperger Syndrome and Young Children: Building Skills for the Real World by Teresa Bolick
Asperger Syndrome in Young Children: A Developmental Approach for Parents and Professionals by Laurie Leventhal-Belfer, Cassandra Coe
A Real Boy : A True Story of Autism, Early Intervention, and Recovery, by Christina Adams
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs, by Chantal Sicile-Kira and Temple Grandin
The Fabric of Autism: Weaving The Threads Into A Cogent Theory, by Tim Hutton (Foreword), Judith Bluestone
The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations, by Brenda Smith Myles, et al
Exploring Feelings: Cognitive Behaviour Therapy to Manage Anger, by Tony Attwood
Exploring Feelings: Cognitive Behaviour Therapy to Manage Anxiety, by Tony Attwood
Home schooling the Child With Asperger Syndrome: Real Help for Parents Anywhere and on Any Budget, by Lisa Pyles
Hopes and Dreams: An IEP Guide for Parents of Children with Autism Spectrum Disorders by Kirby, Ed.D. Lentz, Kirby, Ph.D.
How Do I Teach This Kid? Visual Work Tasks for Beginning Learners on the Autism Spectrum, by Kimberly A. Henry
Just Take A Bite, by Lori Ernsperger, PhD.
My Son Fred- Living With Autism: How Could You Manage? I Couldn't, I Did It Anyway, by Maud Deckmar
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life, by Lynn Kern Koegel, Claire LaZebnik
Parenting Your Asperger Child: Individualized Solutions for Teaching Your Child Practical Skills, by Alan Sohn, Cathy Grayson
Skills: A Social Skills Group Program For Children With Asperger Syndrome, High-functioning Autism And Related Disorders, by Brenda Smith Myles (Foreword), Judith Coucouvanis
Tasks Galore For the Real World, by Laurie Eckenrode, et. al
Toilet Training for Individuals with Autism and Related Disorders, by Maria Wheeler