Parenthood Redefined
Your child is diagnosed with autism— and suddenly caretaking is very different. An expert offers ways to cope.
Typical parents, says Christine Favarro of Demarest, just wouldn’t understand her “zebra” moment. Favarro’s autistic 14-year-old son John has extremely limited language—he just learned to say “yes” and “no” last year. Recently the family was at a special autism-friendly production of the Broadway hit The Lion King—a production in which normally inappropriate conduct by audience members would be accepted and understood. John saw a zebra figure on stage and began pointing and screaming “Zebra! Zebra!” “He’d never said ‘zebra’ before in his life,” says Favarro. “It was amazing. It was like Christmas morning.”
One in 94 New Jersey children is diagnosed with autism, a developmental disorder—often called a “spectrum” of disorders— marked by varying degrees of self-absorption, inability to communicate and repetitive behaviors. And for their parents, it’s devastating news. “A parent’s initial reaction is shock and awe,” says psychologist Robert Naseef, Ph.D., co-editor of Voices from the Spectrum, a book of reflections from autism professionals and families touched by the disorder—and himself the father of an autistic son. “This isn’t what you were planning. Nobody volunteers for this.”
Joining the ranks of “autism parents” means entering a new world in which trying to do what’s right for your special-needs child is apt to become a full-time job. But don’t forget that there’s also another person to take care of: you. Favarro learned that the hard way. “It was almost like when John was diagnosed at 20 months, I was diagnosed,” she recalls.
She stopped taking John on play dates and threw herself into his doctor-recommended 40 hours a week of home therapy. “I had a nice group of fellow parents as friends, but when it turned out that John wasn’t like the other kids and all the therapy started, the phone calls stopped,” she says. “The world as I knew it completely changed. Suddenly, all we were focusing on was trying to get John better.”
She became isolated. “I never left my house,” she says. “It was a very stressful and lonely time.” When therapists suggested she go out for a bit while they worked with her son, she felt she couldn’t. “He was my baby,” she says. “I wasn’t going to leave him. It was crazy.” Favarro found herself making frequent trips to the basement to cry. She mourned for the son she’d thought she was going to have: “My husband and I always said that when we had kids I’d be a stayat- home mom,” she says. “But I never thought it would be like this.”
Then there was the financial strain, another hallmark of autism parents. To cover John’s needed medical and therapy expenses, Favarro’s husband had to find a higher-paying job, and the couple took out a second mortgage on their house. “Instead of home improvements, our money has gone into John and all of his therapies,” Favarro says. One Harvard School of Public Health study says that having a child with autism can cost parents $67,000 to $72,000 a year in out-of-pocket expenses.
Today, after a long struggle, Favarro takes pride in the progress John has made—along with how far she herself has come. She’s become social once again, having restored old connections and forged new ones. “My friends with neurotypical kids are truly wonderful friends, and they really do try to understand,” she says. But her biggest comfort these days is the company and support of other families who have been touched by autism. “When we’re around families who are affected, who really ‘get it,’ I just feel like, ‘You totally understand my world!’” says Favarro. She’s become stronger and more patient, she reports, and has learned to take each day as it comes and to take nothing for granted.
And yes, every once in a while there’s one of those Christmas-morning moments.
For ‘autism parents,’ 6 ways to cope
“When you have a child with autism, it’s impossible not to wonder what might have been and to compare your child to your friends’ kids,” says psychologist Robert Naseef, Ph.D., author of a book on the disorder and the father of an autistic son. You’re facing a tough road, and there are no easy short cuts. But he suggests these coping strategies:
1. Be honest.
“It doesn’t help to pretend to be positive all the time when underneath you’re lonely, afraid, sad—or mad,” says Dr. Naseef. “It’s good for you to admit how you really feel. You can grieve. You can complain. You can mourn.” Expressing those feelings may actually help you make the best of a difficult situation, he says. “Our life force is resilient, but the longing for the healthy child or a typical existence may endure. You have to learn to live with that yearning, but you don’t have to lie to yourself about how hard that can be.”
2. Find fun.
“In the struggle to advocate for our children, we can lose sight of our own needs as individuals and as couples,” says Dr. Naseef. “Hard as it may sound at first, think about taking care of yourself and making sure there’s some enjoyment in your life.” Have a date night with your spouse, for instance, or simply take time to read the newspaper or a good book. “It doesn’t make the sorrow go away,” he says, “but it surrounds it with a cushion of good feelings and makes it easier to manage.”
3. Reach out.
It’s important to break the isolation, says the psychologist. “Be as active as you’re comfortable being in the community—and in the autism community in particular,” he advises. Join support groups, share experiences, work with committees—and extend your hand to newbies. Even though it’s “about” autism, such activity “provides more chances for interaction with others and thus, ironically, helps parents feel more ‘normal,’” says Dr. Naseef.
4. Open up.
Though it may be difficult, Dr. Naseef recommends being open with friends and family about your child’s condition and what it means. “Often there’s an element of shame or embarrassment, but when you’re ‘out’ with it you get more support,” he says. “I think that’s the silver lining.” You might face difficult moments in public when strangers are puzzled by your child’s behavior—probably at a time when your child needs your full attention. One idea: Have cards printed up that you can hand out to give people a quick explanation of your child’s autism. (Examples can be found online.)
5. Study up.
Get on the Internet, get to the library and get in touch with officials who know what services are available for kids with autism. Knowledge is power. “When parents are able to speak up and advocate for their child effectively, they’re strengthened by the feeling of being productive— and they also get more support from others,” says Dr. Naseef.
6. Ask for help.
“Sometimes turning to a social worker, a psychologist or a psychiatrist can be helpful in understanding the needs of your children, your marriage and yourself,” the psychologist notes. You may worry that this is selfish, but you’ll be better able to help your autistic child by remaining emotionally whole yourself. Says Dr. Naseef: “Your special family is worth it!
When the school bus stops coming
In the next 15 years, an estimated 500,000 autistic children will graduate from U.S. school systems in the U.S.—into a world of uncertainty. “New Jersey invests millions of dollars educating children with autism,” says Bridget A. Taylor, Psy.D., Cofounder and Executive Director of Alpine Learning Group, a school for autistic students in Paramus. “But when individuals with autism turn 21, parents are left to navigate a confusing maze of bureaucracy to secure what few funds are available, and they find there are few programs that specialize in autism.” Fortunately, Bergen County has two highly regarded programs for autistic adults:
Started in 2004, Alpine Learning Group’s Adult Learning Center (alpinelearninggroup.org) in Ridgewood continues into adulthood the school’s instruction in self-care, recreation and leisure skills and helps place young autistic adults in appropriate jobs. The program is now housed in a Ridgewood office building, but funds are being raised to build a new adult learning facility near the school in Paramus.
And since 2005, Quest Autism Programs (questnj.org) has been helping adults with autism lead more productive, independent lives and feel at home in their community by securing employment opportunities and educating for life skills in a program located at the Wyckoff YMC A. Also, Oakland’s Reed Academy (reedacademy.org), a private school for autistic students, has built a life skills adult wing in a new building and plans to add an adult services program. Says Dr. Taylor: “As soon as a child is diagnosed, families of children with autism should register with the Division of Developmental Disabilities at nj.gov.humanservices/ddd/home/. The state of New Jersey needs to be kept aware of the growing number of individuals with autism who will need adult services.”
Call for help
Now parents of autistic children can turn to other mothers of special needs kids who are trained as peer counselors for support and advice, along with referrals. “Mom 2 Mom” is a 24-hour peer support helpline program that was recently launched by the University of Medicine and Dentistry of New Jersey. M2M clinicians will also be on the helpline to do telephone mental-health assessments. Call 877.914.MOM 2 or visit mom2mom.us.com to chat live.
Related Read: Stress Busters
