Aging Well: Grandparents’ support important to families, children with autism

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April is Autism Awareness Month

Local resources and events:

• The Yampa Valley Autism Program provides support and advocacy for individuals with autism spectrum disorders and their families. Support includes workshops, seminars and respite for parents; scholarships for therapy; and social and work-simulation programs for individuals with autism. For more information, call 970-870-4263 or visit www.yampavalleyau...

• Yampa Valley Autism Program is partnering with Humble Ranch Education and Therapy Center and Bud Werner Memorial Library to present a free screening of the PBS Independent Lens documentary, “The Horse Boy,” the story of a family’s quest to understand their son’s autism through his love of horses. The film is at 6:30 p.m. April 28 at Library Hall. For more information, visit www.steamboatlibr...

When Lu Etta Loeber’s grandson, Henry, was diagnosed with severe autism 12 years ago, her initial shock ebbed into fear, worry and denial.

She grieved that she never would have the relationship she expected with her grandson, and she grieved for her daughter, suddenly saddled with the enormous responsibility of raising a son with a complex and baffling neurological disorder.

Then, as with many of life’s challenges, clouds parted and Loeber saw hope. She accepted that Henry’s autism would forever change her family and set her mind to helping her daughter and learning as much as she could about autism’s effects on her grandson.

Today, Loeber is a strong advocate for her grandson and other families of individuals with autism and, with time, patience and dedication, she has forged a bond with Henry that, though not a typical, is no less special.

“Inside this little boy is a wonderful, wonderful heart,” she said.

Understanding autism

Loeber is executive director of the Yampa Valley Autism Program, which supports local individuals with autism and their families. She also is among many grandparents and extended family members coping with autism in their families.

Autism describes a group of complex brain disorders that impair social development and communication. The disorders, which vary in severity and can manifest very differently from child to child, are known as autism spectrum disorders.

Some children with an autism spectrum disorder may rarely speak and have difficulty reading and writing, while high-functioning children with autism (such as Asperger’s Syndrome) may attend mainstream school and channel special abilities toward careers in arts, sciences and other areas.

Autism typically appears in children within the first few years of life. About one in every 110 children and one in every 70 boys is affected by an autism spectrum disorder, according to 2009 figures from the U.S. Centers for Disease Control and Prevention.

Although researchers are struggling to understand what causes autism, they know that early intervention involving a variety of therapies and treatments can significantly improve a child’s functioning later in life.

The emotional and financial challenges of raising children with autism put families to the test. Divorce rates among parents of these children are as high as 80 percent, according to some estimates.

Faced with an unknown, yet daunting path, grandparents and extended family members may feel tempted to withdraw. If they pull through the initial emotional hurdle, however, they will find their love and support is invaluable.

“As a grandparent, the best thing I could do was throw all of my support behind my daughter,” Loeber said. “She needed her mom more than she ever did in her whole life.”

Support

Like Loeber, many grandparents feel a sense of loss in finding out their grandchild has autism. Depending on the severity of the disorder, a grandparent may never get hugs and kisses from their grandchild, take them out for ice cream on a whim or spend an afternoon at the zoo.

Disordered sensory perceptions can make children with autism extremely sensitive to sights, sounds and aspects of everyday life that most people don’t notice. This can result in withdrawn or seemingly belligerent behavior that is the child’s way of defending themselves.

“Any of those activities that grandparents like to do with their grandchildren become very, very difficult,” Loeber said.

It’s important grandparents allow themselves to grieve and seek the support of friends or groups such as the Yampa Valley Autism Program through the process. Being open and honest can help a person accept the situation.

Information about autism from Web sites, books, publications and organizations, can be a grandparent’s best ally in understanding their grandchild’s challenges and gifts and creating a meaningful relationship.

Spending time with Henry and observing him during therapy helped Loeber identify cues that he is overwhelmed and needs quiet time and how to approach certain activities and situations with him.

She also learned to not take Henry’s seeming lack of affection personally.

“I had to learn just because I didn’t get a hug … it’s not because Henry doesn’t love me,” she said.

With time, Loeber and Henry, who is nonverbal, developed special hand gestures to show love for each other.

Autism’s surprises and gifts are rays of hope into a child’s capacity to learn, love and have fun. Henry, for example, loves swimming, going to rodeos and spinning endlessly on amusement park rides.

Recognizing what a child with autism likes to do and experiencing that with him can facilitate the connection a grandparent seeks with their grandchild.

“You have to learn to accept them and embrace the quality times you have,” Loeber said.

Perhaps as important as spending time with grandchildren with autism is spending time with their siblings, who can get lost in the shuffle.

“As a grandparent, I think it’s really important not to forget the siblings,” Loeber said.

This article includes information from the Autism Speaks, www.autismspeaks.org, the Autism Society, www.autism-society.org and “Ten Things Every Child with Autism Wishes You Knew,” an article by Ellen Notbohm in South Florida Parenting.

— Tamera Manzanares writes for the Aging Well program and can be reached at tmanzanares@nwcovna.org. Aging Well, a division of Northwest Colorado Visiting Nurse Association, is a community-based program of healthy aging for adults 50 and older. For more information,visit www.agingwelltoday.com or call 871-7676.

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