FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

AWARENESS

* A Grandfather’s Story (Is FEAT's Story)

* The History of FEAT

A Grandfather’s Story (Is FEAT's Story)

By Gordon Hall

[This comes from FEAT's Spring 2002 overland mailed newsletter which is distributed to the autism community of Northern California and is edited by Janet Wininger and Denise Minor. Gordon Hall is the senior board member of FEAT and is the organization's virtual cornerstone.]

There is an old saying, “Be careful what you pray for, as you might get it.” Well, there is nothing that proves the story more than the circumstances that began my involvement with FEAT.

I had recently retired from a state job as a manager of a large auditing department and had offered to do childcare for my daughter’s three young boys. Both my daughter and her husband worked, and the cost of full-time childcare was prohibitive. I had mentioned to my wife, Mary that I wanted to do something that was more involved with people, rather than with numbers and auditing, and I saw that spending time with my grandchildren could be a step in that direction.

Because my two-year-old grandson, Matthew had no speech, I had been taking him to the Mary Jane Rees Speech Center at California State University, Sacramento. I asked if there was something the therapist could tell me that would explain why my grandson’s only sounds were “ducka, ducka, ducka.” I also mentioned my theory, that I thought this is what our speech sounded like to him and therefore it is what he was repeating back to us. Other children must have this same condition and I wanted to find out more about it and what we could do. For her answer, the speech pathologist gave me an article that described “Pervasive Developmental Disorder.”

As I look back now, it’s obvious that Matthew had many of the typical symptoms of autism; however, if I had ever heard the word autism, I didn’t know what it meant. Starting with the pamphlet given to me by the speech pathologist, I was about to begin to learn more than I ever dreamed of about autism and how it manifests itself in children.

My wife Mary taught nursing at Sacramento City College. The husband of one of her coworkers was a pediatrician at the UCD Medical Center and upon hearing about Matthew’s speech problems, he advised us to contact the Alta California Regional Center and get an evaluation by Dr. Linda Copeland. After persisting (and actually demanding) that we see Dr Copeland, an appointment was arranged. Dr. Copeland’s diagnosis confirmed Matthew’s autism.

When we started asking her for more information regarding autism, she recommended that we contact Families for Early Autism Treatment (FEAT), which at that time was still a small grassroots organization of parents of autistic children who were looking for the same information and answers we were searching for. I really believe in divine providence-- here I was looking not only for ways to help my grandson, but also for something that was more involved with people, and all of a sudden, I was presented with the opportunity to do both. Thus began my long association with FEAT.

From FEAT, I was to learn that with proper, early, behavior-based therapy, a significant number of these special children’s symptoms can disappear and that they can become indistinguishable from other children. After waiting and bugging people (I tell all parents you MUST persist or be a pain in the a__ if you want to get the services that will benefit your child), we were finally able to start a home program for Matthew guided by the wonderful Dr. Greg Buch from the Lovaas Clinic in Los Angeles.

Beginning with two years of a home-based program starting on Matthew’s third birthday, Matthew progressed from a wild, uncontrollable child who had no significant speech until he was three and a half, to a loving and affectionate child often. Matthew is now in the fifth grade and although he still has some residual effects of autism, he has made remarkable progress.

On a daily basis I shared with Mary and our daughter the joys of accomplishment, the struggles in managing a home program and recruiting tutors, and at times the disappointment that Matthew was not making the progress we had hoped. At times I almost wept for Matthew for the trials we put him through on a daily basis. I had to constantly remind myself that the intensive home program was the only proven method to help him reach his potential. But even realizing that, my heart went out to him.

I learned a lot during these sessions from how to potty train a three year old with autism, to how to prepare. lesson plans and charts to monitor progress. More importantly, I learned there are many hardworking, dedicated, and caring professionals in the field of autism, and that they were willing to spend extra time with me to explain how to be more effective in managing Matthew’s home program.

I also learned quickly that there is a bureaucratic maze that parents must weave their way through to get services for their children. I learned that when I went to an IEP or a planning team meeting, I had to be better prepared than the school personnel or the regional center staff if I wanted Matthew to have a program that would meet his needs.

On a positive note though, I also learned that there are dedicated high school and college students who were willing to work with Matthew for no pay or minimum wage and who would come to early morning Saturday team meetings to discuss ways of improving therapy.

After I got involved with FEAT, I realized that helping obtain services for young children with autism is the most satisfying and rewarding thing I have ever done and that I received so much more than I have ever been able to give. While on this journey in FEAT, I have had the privilege to meet some of the most outstanding, compassionate, dedicated and courageous parents in the world. I consider working with FEAT a privilege and thank God for giving me this opportunity.

The journey to help Matthew maximize his potential, as well as to provide information and help to other parents, has been incredibly rewarding and fulfilling. Would I change what I have experienced over the last seven years? Absolutely not! These have truly been my golden years and I treasure all the experiences and people I have met in this journey.

Recently, I saw a Far Side cartoon in which a dog was walking on a tight rope with a caption that read: “High above the hushed crowd, Rex tried to remain focused. Still, he couldn’t shake off the nagging thought: he was an old dog, and this was a new trick.” I identify with Rex as far as being an old dog, but I differ in that while working with Matthew and the parents in FEAT, this old dog has learned some new tricks. I challenge all you grandparents (or old dogs) out there--if you want your life to become enriched and want to learn some “new tricks”, get involved and help these special kids.

Comment:

At the FEAT conference last year, Nancy Fellmeth, FEAT president, introduced a fellow FEAT member who was about to give his presentation. She mentioned that one of the things that had impressed her about FEAT when she first became aware of the organization was the involvement of fathers. In the early nineties, autism generally was mostly a mother's affair. This was before ABA treatment took hold across the country, making it quickly clear that securing and then doing a 40 hour per week intense home program was going to take the efforts of more than just mom.

The key to FEAT's early success as a grass roots advocacy organization and its success with its children was the early intervention of men.

Like Gordon Hall, there are FEAT men such as Chuck Gardner and Rick Hayes who, with other fathers like Rick Rollens, laid the creative foundation to build the M.I.N.D. Institute. Other fathers such as Lenny Schafer and Michael McIntire created and nurtured this newsletter and its server.

There are plenty of worthy projects around for a civic minded father to contribute himself too. Charity does begin at home however, and there is no finer, more rewarding cause on the planet than healing autism, something we were all once told wasn't possible. We all know the truth however; there is hope. . . –LS

* * *

History of FEAT

From FEAT's 2002 Parents' Handbook

FEAT was founded in 1993 by a group of parents and professionals who wanted to improve the early intervention services that were offered in the Sacramento area. Together they wrote grants and raised enough money to provide intensive early intervention training for parents and local professionals. In 1993, therapists from the UCLA Clinic for the Behavioral Treatment of Children started coming to the Sacramento area and provided training workshops to help the families in FEAT get started. As a result of these early workshops, there are now several professionals in the Sacramento area that can help families run programs.

Since 1993, over 75 children in Northern California have participated in Workshop and Clinic programs sponsored by FEAT and several providers of Applied Behavior Analysis (ABA) services. The goal of providing ABA programs to young children is to assure that all young children with autism have the opportunity to maximize their potential. As a result of this concerted program, many of the children are now attending regular public schools, most with the assistance of an aide. FEAT’s initial ability to provide these ABA Workshops was made possible by a grant in 1993 of $75,000 grant from the Sierra Health Foundation. This grant and continuing fund-raising efforts have been the source of funding for services provided by FEAT.

Every year since 1993, FEAT has held its annual “Night of Caring” fund-raising Dinner & Auction. In 1994, FEAT sponsored State Autism Awareness Week and held its second Dinner Dance. The guest of honor was Dr. 0. lvar Lovaas Ph.D., Director of the UCLA Clinic for the Behavioral Treatment of Children. In 1994, FEAT honored Dr. Bernard Rimland, Ph.D., Director of the Autism Research Institute. The annual “Night of Caring” continues to be FEAT’s main social and fund-raising event each year.

Other activities FEAT has maintained since 1993 are monthly resource meetings, which are designed to provide continuing information, education, and support for families of children with autism. FEAT also continues to publish a quarterly newsletter and annually updates a Handbook for Parents. In 1995, FEAT established a Lending Library to provide information and materials to families involved in early intervention programs.

In 1994 and 1995, FEAT sponsored six (3 each year) student tutors to attend a summer training the UCLA clinic. As a result of tutors were able to return to Intervention Consultants to programs under the guidance of consultants. In children to receive UCLA Clinic.

Since 1997, FEAT sponsored the Capital Autism Conference in Sacramento, bringing together national and international experts in the diagnosis, treatment and services for children with autism. Also in 1997 FEAT produced with video, “Doctor My Child Doesn’t Talk” — The Importance of Early Autism Diagnosis. This video won the 1997 Autism Society of America’s award for excellence in video. Hundreds of copies of this video have been distributed throughout the United States and the world, to physicians, parents, and others involved in the early diagnosis of children with autism.

FEAT has continued to expand its services, assisting parents in getting early diagnosis and treatment for their children. When treatment has been delayed, either by local school districts or the regional center, FEAT has assisted families to obtain intervention programs, speech programs and evaluations. In addition, FEAT has developed an active Advocacy Committee and Parent Mentor Program that assists families during the IEP, Planning Team Meetings, Fair Hearings, and Due Process Hearings.

In 2000, FEAT was fortunate to have students from California State University, Sacramento, develop a poster identifying early signs of autism. This poster has been distributed to local pediatricians and family practice physicians, to be placed in exam rooms alerting parents about autism. Several hundred posters have been distributed to local doctors.

[In 1997, FEAT also created what were to become the MIND Institute as well as the FEAT Daily Newsletter.]

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

FEAT is a tax-exempt non-profit corporation

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Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy

Server: Michael McIntire • Ron Sleith • Kay Stammers • Edward Decelie

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