Support for dealing with autism

For several years, Newport Beach resident Carol Berg took her grandson Adam to children’s concerts at the Orange County Performing Arts Center, but there is one night in particular that she will never forget.

The two had just seen “The Nutcracker” and were applauding with the rest of the audience when the 6-year-old boy turned to Berg and said, “Thank you, Grandma. That was awesome.”

That moment was especially poignant because Adam has autism, and he had never said anything like that after any of the other shows.

Children with autism often have a difficult time connecting with people, being aware of their surroundings, speaking and verbalizing their feelings, and expressing emotions.

For Berg, her family celebrates the victories, the achievements and the special moments with Adam — things that other people might take for granted.

And for Adam, not only does he have the love and support of his parents, but he also has a grandmother who is actively involved in every facet of his life.

“I don’t know how I could love him more, and I probably do love him more because he has autism. It’s because he needs everything you can possibly give him, and you get so much pleasure from the little things,” Berg said.

Adam loves sports — he plays pingpong, takes tennis lessons twice a week and rides his bike and his Razor. He also recently joined Spirit League, a sports organization for children with special needs, where he plays on a baseball team.

And Grandma is the one who takes him to the games for those two hours on Sundays.

Berg is also a member of the Grandparent Autism Network in Tustin, a nonprofit group that was formed last year by Bonnie Gillman, whose grandson Daniel has autism.

Both grandmothers were aware early on that there were support groups and information available for parents of autistic children. For the extended family, though — the grandparents who wanted to know how they could improve the quality of life for their families and “alleviate the enormous amount of stress,” Berg said — there was nowhere for them to turn.

Berg and Gillman said that from the moment their grandsons were diagnosed with autism, they embarked on a journey neither thought they’d ever be on and that other grandparents of autistic children share the feelings of helplessness.

One of the things that the Grandparent Autism Network has been able to do is bring in speakers to its monthly meetings who can address the specific questions grandparents have — things as simple, Berg said, as the best toys for autistic children, or how to help teach practical life skills.

They also deal with more serious issues, such as estate planning and special-needs trusts, and how to be an advocate for grandchildren.

Most parents are just trying to get through each day, Tustin resident Gillman said. So grandparents can help by being there to baby-sit or to participate in some of the behavioral- and occupational-therapy exercises that the child may need to do at home.

Newport Beach resident Ginny Berg, Adam’s mom, is thankful for the help and support she gets from her mother-in-law and for the different perspective and life view that, as a grandparent, Carol Berg brings to her relationship with Adam.

The Grandparent Autism Network meetings are where grandparents can share stories, exchange information and socialize.

“Grandparents feel like they’re looking in a mirror, given that they all share the same heart,” Gillman said. “They feel an instant sense of comfort.”

That sense of belonging enables the members to open up and share what they’re going through.

“Every grandparent who has a grandchild with autism needs more information. Period,” Carol Berg said. “Whether you think you’re well informed or not, there’s always something you can take away from one of these meetings or events — some little nugget that maybe you can try. Sometimes they work; sometimes they don’t;”

One of the things both grandmothers say they would like to do is speak about autism to children in public school classrooms, helping to make young students more aware of their peers with autism.

Ginny Berg pointed out that autism doesn’t define her son.

“He’s Adam,” she said. “He loves to play tennis and give hugs and Eskimo kisses.

“Autism is a characteristic of Adam, but he’s so much more than that, and he does the best that he can do.”

IF YOU GO

WHAT: Grandparent Autism Network meeting

WHEN: 10 a.m. to noon May 16

WHERE: Congregation Shir Ha-Ma’alot, 3652 Michelson Drive, Irvine

COST: FreeINFO: (714) 573-1500 or www.ganinfo.org