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.
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.
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.
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.
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
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:
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.”
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.”
time for yourself
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.”
“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.”
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
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.
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.
are not alone.
Laura Licata Sullivan is a freelance writer
who lives in Campbell Hall with her husband and three sons