E-News October 2006

Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for October 2006. As always, email your thoughts and/or questions. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

If this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for the Southern California autism support group called TACA. As always, email your thoughts and/or questions. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.


   


Support TACA through WALK NOW events in Orange County and San Diego

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Cure Autism Now's WALK NOW is a 5K (3.1 mile) family walk and autism community resource fair heightening public awareness and raising money to fund autism research. The resource fair includes educational resources, therapists, schools, recreational organizations and creative child-friendly activities. Proceeds from WALK NOW support Cure Autism Now’s mission to find the causes, effective treatments, prevention and a cure for autism

If you select TACA from the registration referral box or sign up for the walks through the links below, TACA will receive 50% of the funds you raise through your participation in these events.

Orange County Walk Now Event
Date: October 14, 2006
Location: Camp James / Hidden Valley in Irvine
Use this link to get more information and register so that 50% of your fundraising will go to TACA and 50% to CAN.

San Diego Walk Now Event
Date: November 4, 2006
Location: Balboa Park
Use this link to get more information and register so that 50% of your fundraising will go to TACA and 50% to CAN



Thank you for your support of TACA's 3rd Annual Picnic!

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We wish to thank our sponsors, in-kind donors, and all those who joined us at the picnic on September 17th for their help in raising $70,000 for TACA.

Click here for a list of TACA's sponsors. We can't thank them enough, and encourage you to share your thanks for their support of our cause. Our in-kind donors (click here for list) gave over $30,000 in picnic supplies and food, raffle items, and or silent auction items to help make the picnic a success.

We'll be back next year and hope to see you there!



Their Own Buddy System - From the Orange County Register

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Their own buddy system
Two boys show that autism doesn't have to be a barrier to friendship.

By THERESA WALKER The Orange County Register

Boys will be boys. Even when one is autistic and the other isn't. For Jeff Ackerman, 9, and Ian Hall, 10, the social- skills divide that can keep children with autism from being friends with other "typical" kids doesn't exist. They bridge it one afternoon after school with a blanket that turns Jeff's bunk bed into a fort one minute and the staircase in his two-story home into a thrill ride the next. "Lay down, Ian, lay down," Jeff urges his buddy. Ian stretches out over the carpeted stair steps. Jeff drops the blanket over Ian's head. "Oh," Ian moans in mock fear, "I can't see." He wiggles down the staircase on his butt, Jeff giggling behind him every step of the way down. They both crack up at the bottom of the staircase when Ian pulls the blanket off. The two boys are best buddies. They don't go to the same school. It's a 20-minute drive from Ian's home in Huntington Beach to Jeff's home in Newport Beach. Their moms get them together two or three times a month, more when school is out. Sometimes, they have sleepovers. This past summer, they went to day camp side-by-side at Camp James in Irvine. After end-of-the-summer family vacations kept them apart in August, Ian turned to his mom and said, "You know who I really miss Mom? Jeff." Ian is a fifth-grader in the program for gifted students at Peterson Elementary in Huntington Beach. Jeff is in third grade at Paularino Elementary in Costa Mesa. An aide accompanies him to school every day. His social skills are at the level of a 5-year-old.

Ian doesn't think of himself as anything special for being a friend to Jeff. Nor does he think of Jeff as someone with special needs.

"I don't know," he says, mystified by a question about the why of their friendship, "I just like playing with him."

Jeff, blue eyes as clear as his answer, gets right to the heart of it, too, when asked what he likes best about playing with Ian.

"I like Ian."

Friends in need

Lisa Ackerman never could have guessed at the depth this friendship would reach when she asked Elizabeth Kilpatrick five years ago if their sons could play together.

Ackerman was a volunteer with Cure Autism Now. Kilpatrick handled the organization's fundraising.

Jeff was 2 1/2 when he was diagnosed with autism, a neurologically based developmental disorder that impairs communication and social skills. On the wide spectrum of autistic behavior, Jeff's was severe.

He never said a word until he was 5. He engaged in the kind of repetitive self-stimulating behavior that autistic children often use to cope.

He'd flap his hands as if to fly away and walk on his toes like a ballerina. He'd sit by himself spinning toys on the floor. God forbid anybody tried to stop the spinning.

Ackerman would look at her son and wonder how he could ever find a friend. What would it be like for him as he got older, even if he did learn to talk and he still couldn't make friends?

"If you have one friend that's a really good friend, you can take over the world, you can do anything," she says. "If you don't have a friend, how alone does that feel?"

Ackerman had started a family-support group called Talk About Curing Autism that has grown to more than 2,000 families. A big part of her motivation: She wanted Jeff to go to picnics, barbecues and other gatherings where people wouldn't stare at him.

But she also wanted him to expose him to all types of kids.

"If I only had him around kids with disabilities, he would only participate at that level."

So she approached Kilpatrick, who would bring her son Ian to Cure Autism Now functions.

"I definitely pushed it," Ackerman says. "Ian was such a doll to Jeff, who at the time was nonverbal. I just said, 'Hey, he's the sweetest thing in the world. Can we do play dates?' "

Ackerman's motherly instincts are backed by research that shows how crucial social skills are to a better prognosis for autistic children.

"Social skills are tremendously important and sometimes people don't emphasize that enough in their programs for kids," says Jessica Postil, clinical director at Autism Spectrum Consultants in Newport Beach, an agency that provides behavioral treatment to children with autism.

"You have to have social skills, otherwise you're just going to be in a box somewhere."

Friendships like the one between Jeff and Ian are becoming more common as parents and professionals work together to nurture such relationships, says Postil, who supervises therapists who work with Jeff.

Initially, play between autistic and non-autistic children may be set up and carefully managed, but at some point, she says, kids click as peers.

Like Jeff and Ian.

Friends indeed

A single mom, Kilpatrick brought Ian with her most everywhere from a young age. Her travels around the country often meant staying in the homes of families with autistic children.

Ian learned early to be at ease among autistic children, whose behavior can be puzzling and frightening to others. Still, Jeff's longtime aide, Sean Gorgie, had to be there to facilitate the interaction between the two boys, who both lived in Huntington Beach then.

It took a lot of work for Jeff to learn to play.

"When they first started, everything was scripted. I'd write out scripts where Ian had a role in them," Gorgie explains. "I had to write things on a piece of paper. If Ian asked a question, I had to be there to get a response from Jeff."

If they played army and Ian's imagination made him say or do something that wasn't in the script, Jeff couldn't cope. He didn't have the flexibility.

If they went to the park, Jeff wouldn't even realize Ian was around, Gorgie recalls: "He was in his own world."

If a fly or butterfly came near, Jeff would flail and scream in terror.

Even Ian was a little uneasy with such behavior at first, staring at Gorgie with an I-don't-know-what-to- do look on his face. Gorgie would explain to Ian what was happening and why.

"I'd say, 'Have you ever been that upset before?' and I'd explain how everybody needs to work on things."

Ian kept coming back for play dates. He was a quick learner and picked up on Gorgie's prompts readily. Ackerman credits Ian's natural persistence and desire to help.

"Ian knew that you just didn't give up, that it wasn't anything personal."

Besides, Ian says, he was having fun doing things like jumping on a trampoline or dropping like a cannonball into a swimming pool.

He'd joke to his mom that autistic kids had the best toys.

Eventually the highly structured encounters taught Jeff how to do what seems innate in children. The play-date scripts stopped.

They can sit together and play video games like other kids their age, talking boy talk.

"We talk about the game and things we may have done," Ian says. "We're pretty evenly matched. He's really good at some of his video games so he always beats me and stuff."

The friendship between Jeff and Ian reached a milestone two months ago when Ian spent the night at Jeff's house and they played alone for three hours straight.

"I literally was in tears," Ackerman says. "It was the first time he had a friend over where no one had to intervene."

Being with Ian has made it easier for Jeff on the playground at school. He has a lunch-buddy group that is part of the educational plan designed for him as a child with special needs. Other kids come over to play with Jeff, too, under Gorgie's supervision, and some school pals have visited him at home.

"I have high hopes for Jeff," Ackerman says. "Maybe someday he won't need an organized social group. Maybe someday he can do it on his own."

Kilpatrick says she gets asked often by other parents with autistic children about having Ian come to birthday parties and play dates. He also has autistic friends at school.

"I really do think it's important for him to do this," his mom says. "It's been good for him, to be so accepting and understanding. But I don't want to overwhelm him."

To Ian, it's no big deal being a friend to kids who are autistic.

"I know they have autism but I think of them just like regular friends," he says, " 'cuz they pretty much are."

Side bar

Social awareness
Lisa Ackerman, founder and director of Talk About Curing Autism, encourages parents to find ways for children with special needs – and particularly autistic children – to be socially active.

One project, Teen Boys Detective Club, meets once a week to help high-functioning adolescent boys with autism learn such social skills as how to behave in a movie theater or how to cultivate a friendship by talking on the phone or sending emails. They also explore the "cool" factor that can be so important to the way teens dress, talk and act. It is supervised by therapists from Autism Spectrum Consultants in Newport Beach.

Ackerman hopes to secure funding to expand the project, including a group for girls. To find out more about the teen detective club, call Autism Spectrum Consultants at 949-474-5577, or go to www.autismconsultants.com.

She also offers suggestions for parents who would like to have their children reach out in friendship to children with special needs at a young age:

Teach them about people with disabilities. Some books that might help: "Andy and his Yellow Frisbee," by Mary Thompson; "Ian's Walk" by Laurie Lears; "What's Wrong with Timmy?" by Maria Shriver. Begin by saying, "Hi." Encourage children not to be afraid to smile and say hello to someone with a disability.

Actively seek out opportunities for children to interact. Don't be afraid to approach other parents about play dates or get togethers. Don't overlook special needs children when it comes to inviting them over for a birthday party or a sleepover.

For more information on autism, call Ackerman at Talk About Curing Autism, 949-640-4401, or go to www.TACAnow.org.

 

Web Page for TACA Group: www.tacanow.com
check it out and let us know your thoughts

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.IF YOU DO NOT WANT TO RECEIVE THESE EMAILS, just respond and I will be happy to remove you from the list.

P.S. TACA e-news is now sent to 2,577 people!
(This number STILL represents 90% families affected by autism and 10% professionals.)