Letting go, saying no



How to handle the stress and anxiety of a child with autism

Raising a child with autism is one of the hardest things a parent will ever have to do.

Laura Licata Sullivan and her autistic son Jack. Sullivan says, “I would have lost my mind” if it hadn’t been for the support of other local parents with autistic children.

It’s hard to believe that my oldest son turned 15 this past November.

I remember I went into labor on Thanksgiving Day after eating a lot of turkey. My son was born chubby and healthy, a holiday gift to my husband and myself.

Two years later, he was officially diagnosed with Autism Spectrum Disorder. My son was already receiving special education service through Early Intervention in our home district of Goshen, so I already had my suspicions. Nevertheless, my world came crashing down — and the vast realm of behavioral therapy opened up.

My head was spinning and my husband was in a state of denial. We both fell into a deep depression and started to fight — a LOT.

He spent many hours at work and I became resentful that he didn’t have to be at home, dealing with my son’s diaper changes, tantrums, and the constant rotation of therapists.

I felt like I was drowning.

Well-meaning family and friends offered countless tidbits of advice, but I still felt isolated and alone. And my son was not improving. This way of life slowly took a toll on everything that meant the most to us — our health, our joy, our wellbeing.

Raising a child with autism is one of the hardest things a parent will ever have to do.

According to the National Survey of Children’s Health, parents of children with autism experience greater stress than parents of children with other learning disabilities. In a study in the Journal of Intellectual Disability Research, mothers of children with autism were found to experience more psychological distress than mothers of children with Down’s Syndrome.

Autism early warning signs

As there are currently no treatments for autism, the responsibility of living with the developmental and behavioral problems of the autistic child falls primarily on the family. We also need specific coping strategies to help us navigate our crazy world. Here are some strategies I have researched over the years and tried to implement:

Find support

Over the years, I would have lost my mind if it weren’t for the support of other parents in Orange County living the same life as my husband and myself. I am grateful to folks like Renee Smith, a special education teacher who runs programs for families living with autism.

“When parents are starting the evaluation process and getting their children diagnosed, it’s such a terrifying and overwhelming process for them,” says Smith. “They don’t know what to expect and especially what this will all mean for their child’s future.”

Smith notes that mothers especially become consumed with the disorder.

“I see the stress that it causes them,” she says. “My advice for the moms I work with is to join support groups and parent groups. This is such a great resource for parents and a great opportunity to meet and relate to other families going through the same struggles.”

Learn to say ‘no’

Let go of everything you thought you were “supposed to do” in the life you had before. It’s more than OK to forego the Christmas cards and PTA meetings.

“I became another person when my life with autism began,” recalls Helen Tolan, a mother from Harriman. “I am now thankful for simple things, and anything that makes me laugh.”

Tolan says she has to allow herself permission to say no to many things that may be necessary or important.

“When the time isn't right, it isn’t right,” she says. “I am still learning to accept myself, even when I'm disappointed with how I did — or didn’t — do something.”

Make time for yourself

“From early on, when my son was first diagnosed, I made it a point to go out every couple of months with my friends,” says Nicole Forbes, a Medicaid Service Coordinator at Greystone Programs who is a single mother to an autistic teenager. “Dancing and socializing with other moms is a great stress reliever. It’s important to remember your own needs as a person. Time must be set aside for fun and things you enjoy. It doesn’t change things. It just makes me a better mom.”

Tolan agrees.

“Crocheting is therapeutic,” she says. “I like watching horror movies and occasionally tuning into some of the trashy reality shows. I love my child with all my heart , but I also have a job that I enjoy — and when I’m working, I’m not thinking about autism.”

Accept change

Understand and accept that your relationships with certain people, including your spouse, other children, and long-time friends and family will change.

A dad's story: Raising an autistic child

Mothers of autistic children are reported to be more withdrawn and uneasy than mothers of neuro-typical children. According to Psychology Today, the divorce rate is considerably higher among couples that have a child with autism.

Opportunity for growth

The incidence for autism has risen from 1 in 10,000 in 1970, to 1 in 50, according to the Center for Disease Control. I fear this number will continue to rise.

To other Hudson Valley parents who have children with autism: Consider this journey your greatest opportunity for growth as a spouse, a parent, a friend, and a human being. You have been given a job reserved for saints. It is not an easy road we walk, but I am very proud to be in your company. Reach out to others affected, too.

You are not alone.

Laura Licata Sullivan is a freelance writer who lives in Campbell Hall with her husband and three sons