Howard Swanson, who is the father of CT FEAT'S VP Julie Augeri, has taken a keen interest in special education legislation in Connecticut and attends as many legislative hearings on the subject as possible. In addition to being CT FEAT'S legislative "watch dog," he keeps abreast of all the news on special education and autism. "It's been terrific," says Augeri, "that he has the interest and the time to devote himself to this project."

In addition, Julie's mother, Janet Swanson, helps publish the CT FEAT newsletter. "My morn really knows her way around the computer, so she's volunteered to put the newsletter together," said Augeri. "I gather the content from our various contributors, and my mom gives the newsletter its look. It's a great group effort." 

Even grandparents who aren't living close by have gotten involved. Jack Frost, all the way from Anchorage, Alaska, is the father of CT FEAT member Sue Frost-Bennett. He is also a Professor Emeritus at Alaska Pacific University and a guest newspaper columnist for the Anchorage Daily News. In this issue of CT FEAT News, we are reprinting a condensed version of the column he published just a few days before Valentine's Day about the exciting advances in autism treatment. See To Help Children with Autism".

"The grandparents are a fabulous group of people who have contributed unexpected and invaluable talents to CT FEAT," says a CT FEAT member, whose own mother is a member of the small but dedicated group. "But most of all, we appreciate the enormous love and support that they demonstrate by their efforts on our behalf."

Other projects for GREAT are in the planning stages, and will be shaped by the special talents and interests of the grandparents who participate in the group. If you know of any grandparents who are interested in joining GREAT, please have them contact CT FEAT by Email at info@ctfeat.org or leave a message on the CT FEAT Hotline at (860) 571-3888.

It's a GREAT group for a GREAT cause!

(by O. W. "Jack" Frost)

It is estimated that each year in Alaska, 11 children are born with autism. For every girl with the disorder there are 4 boys. No socioeconomic sector is spared. No cause has yet been identified.

For the child, autism is like a life sentence in solitary confinement. For a family it can be emotionally and financially devastating. However beautiful and adorable, the child remains largely unresponsive.

There is lacking, as University of Alaska Anchorage professor Todd R. Risley says, the "dance" of affection between child and care giver, the loving give-and-take that transmits language and culture during the child's most formative period, the first three years of life. 

Only strong families can cope with autism. As if the shock of autism were not punishment enough, parents often get conflicting advice. Some "experts" say there is no remedy. Others recommend expensive programs without a documented record of success. Parents desperate for help can needlessly bankrupt themselves and lose precious time.

The most fortunate parents, teachers and supervisors of children with autism are, very early, inspired and guided by dependable good news, as in two paperbacks, Catherine Maurice's "Let Me Hear Your Voice: A Family's Triumph over Autism" (1993) and her "Behavioral Intervention/or Young Children with Autism: A Manual for Parents and Professionals" (1996). These two books are professionally endorsed and readily available.

These books clarify that only one program has a replicated record of scientifically documented success. It uses procedures of Applied Behavior Analysis. The child is rewarded with praise, hugs, or bits of a favorite food for paying attention and for making correct responses, step by step, through instruction that assumes no prior knowledge. This instruction is usually home-based, one-on-one, 30-40 hours per week for two to three years for children ages 2 to 7. It is intensive early intervention and requires continuing parental involvement.

Even so, it is no panacea. Studies report that with competently delivered ABA instruction, 30 percent to 50 percent of children with autism become normal or fully functional by school entry - in other words, indistinguishable from other children. With the exception of many of those who are also severely retarded (about 10 per cent), others become sufficiently functional that, with the initial support of a trained aide, they can usually continue to progress satisfactorily in regular school classes.

Without the ABA-based program for 30 to 40 hours per week, only rarely does a child with autism become normal. Some children may be helped, but typically these children with autism remain in public school special education until 22 years of age and spend the rest of their lives under tax- supported supervised care.

These children are all precious special valentines all year round. They are "the least of these," loved just as much - and often even more. In the life of the spirit, they, too, are called. As John Milton wrote of the blind (himself included), "They also serve who only stand and wait." Even so, it is sad that many human sciences for gathering up and rescuing children with disabilities are still in early stages of development

Thankfully, for children with autism, there is at last a way to go.

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Here's a great game to help your child with expressive labeling and turn- taking. It's called NO PEEKING.

The players take turns wearing a mask (either a king or lion's face) and reach into a bag to pull out a shape. While still wearing the mask, the player tries to guess the shape. By identifying the shape, the player gets to keep it. If wrong, the shape goes back in the bag. When the bag is empty, the player with the most shapes wins.

The game comes with 60 different die- cut shapes of common items like a car, light bulb, dog, etc. There are four variations of his game for one to four players. It's designed for ages 3 to 8, but it's lots of fun for everyone. Even adults may find it challenging! NO PEEKING is made by Ravensburger and costs around $15.99.

We also recommend a toy that will help your child build imaginative play skills. The vehicle set is called MOTOR BLOCKS. Your child can make four different motorized vehicles including a car, train, helicopter and an airplane. One of the blocks has a battery-run motor for real-life sound effects.

MOTOR BLOCKS is made by Tomy and costs about $20.00.

Whether it's in discrete trials or incidentally, we all need to let our children know what a good job they are doing. Here are several different ways you or your child's instructor can say "good job!"

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(Book Review by Beth Curry)

A wonderful resource for helping young children (ages four to eight) acquire social intelligence about themselves and their peers is the delightful Help Me Be Good series of books. Authored by Joy Berry and published by Grolier Books, these "self-help" books for kids are not specifically designed for children with "special needs." But they seem made to order for addressing the deficits in social understanding commonly found among children with autism spectrum disorders. And kids just love them!

Each book is about 30 pages long, with text on one page and a humorous colorful cartoon drawing on the next. The cartoons typically show kids acting out and discussing the "problem" addressed by the book. An amusing animal friend (cat, rabbit, or turtle) acts as a kind of "Greek chorus," commenting on the action by way of thought balloons.

The 29 titles in the series are:

Disobeying, Lying, Being Selfish, Teasing, Whining, Tattling, Bad Sport, Being Bossy, Being Bullied, Being Careless, Being Destructive, Being Forgetful, Being Greedy, Being Lazy, Being Mean, Being Messy, Being Rude, Being Wasteful, Breaking Promises, Throwing Tantrums, Cheating, Complaining, Fighting, Gossiping, Interrupting, Overdoing It, Showing Off, Snooping, and Stealing.

One of my family's favorites is Overdoing It. Like all the titles, it starts off introducing a child ("This book is about Lennie") and stating the theme ("Reading about Lennie can help you understand and deal with overdoing it.") Lennie "overdoes" it in a lot of ways: eating too much, staying up too late, being around one person too much, staying in one place too long, doing something too much (like watching t.v.), and playing too rough. By the end of the story (and to the great relief of his pet cat, who has suffered as a consequence of Lennie's excesses), Lennie understands that "it's important to not overdo it so you can enjoy the wonderful people, places and things around you."

Most of the stories end with this kind of affirmative message - a much more successful approach than the traditional "don't do this and don't do that" message conveyed by most books hoping to improve children's behavior. Even though the concept underlying the books is very simple, it is extremely effective - much like the "Social Stories" concept developed by Carol Gray (which we also make very effective use of in my child's "social learning" program).

These books are available exclusively through Grolier books (a mail order book company). Grolier offers various purchase plans, including an interest- free installment plan. While you can't just order selected titles, you can return unwanted books. You can buy all 29 volumes for $181.16 (including shipping) and then send back individual unwanted volumes from the set, for a $6.47 credit for each unwanted book. Or you can buy the books on an installment plan as follows: the first four books (in the order listed above) will be shipped together to you for $12.94 (which Grolier describes as getting two for free). Then, about three weeks later, the next two books arrive, also for $12.94. Then, if you still want to receive the rest, the remaining 23 books will be shipped to you (and you can return the ones you don't want for a credit) and you pay $6.47 per month until the entire sum is paid off. For all the details, contact Grolier Books at (800) 955-9877.

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It all started, just one year ago this month, in Peter Ohring's living room. A small group of parents (including FEAT Board members Ohring, Lynette Borkowski, Duane Jones, and BC), who had met through the Internet, had gathered there to watch the excellent video "Autism; the Child Who Couldn't Play." After the video, we talked about our kids and shared "war stories" regarding the depressingly similar difficulties we had encountered in trying to secure effective treatment for them.

Those "war stories" had themes that will be familiar to most CT FEAT supporters: the challenge of finding diagnosticians who are knowledgeable about current "best practices" for treating autism; the scarcity of qualified ABA providers; the lack of funding for intensive treatment; the Birth to Three System's failure to make parents aware of the importance of early diagnosis or to offer effective treatment; the unresponsiveness of the school systems, which don't want to undertake the staff retraining and reallocation of resources that ABA programs require.

But despite these depressing facts, we found ourselves energized by our meeting. That's because, in addition to commiserating, we also shared our exhilaration at having found an effective treatment modality for our children. Our intensive behavioral intervention programs produced measurable progress far surpassing the results we'd seen when our children had received the traditional "play therapy," "speech therapy" and "incidental learning" interventions usually offered to such kids.

We left that meeting feeling less isolated and looking forward to more opportunities to share our struggles and our triumphs. We shared a dedication to changing the dismal status-quo for children with autism spectrum disorders. And we wanted to make it easier for parents and children who follow in our footsteps.

Ever since that fateful date in March, the parent support group has met regularly every two months (with many of us communicating much more frequently, by phone and E-mail). By July, our meetings had found a permanent home at the Congregational Church in Rocky Hill. We also had identified a group of very knowledgeable parents, drawn from the support group and representing every part of the state, who agreed to serve on the Board for the non-profit organization that we formed that month: Connecticut Families for Effective Autism Treatment, Inc.

In the ensuing months we took various steps to broaden the support we could offer to other parents. We developed a "parent mentor" system, established a telephone hotline, created a web site, inaugurated an Internet Discussion List, and developed various written information materials, including a brochure. We also distributed information about our organization, and its resources, to professionals and organizations likely to come into contact with parents seeking treatment information: e.g. other parent groups, clinics, school systems, and Birth to Three System providers. Helping other parents has been extremely gratifying for all of the parent volunteers at CT FEAT. The feedback we get is very "reinforcing" and provides us with just the kind of support we were looking for when we first came together, one short year ago!

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If you missed CT FEAT'S January support group meeting, you can hear the guest speaker on audio cassette tape. William White, M.Ed., C.A.G.S., a school psychologist for the city of Middletown and the case manager of their ABA program, spoke about the essential elements of running a successful ABA program. White spoke about his experiences guiding the program, working effectively with an outside consultant, and gave advice on how parents can build a healthy relationship with their school district. To receive a copy, send a check for $10.00 (includes postage and handling) to: CT FEAT P.O. Box 388 Ellington, CT 06029-0388