Kim Stagliano is the kind of mom who makes me appreciate the parenting struggles I face.
My challenges are fairly typical — guiding two children to make good choices, develop a love for learning, treat others with kindness and compassion, respect authority, avoid danger, stay healthy.
Stagliano has those same challenges with her three daughters plus layer upon layer of additional struggles. All three girls are on the autism spectrum, each with moderate to severe autism.
“They were not touched with the brush,” she said. “They got a full painting.”
Stagliano, her husband and their girls — ages 17, 16 and 12 — live in Connecticut. She is the managing editor of the website Age of Autism (ageofautism.com) and author of the novel House of Cards and the memoir All I Can Handle.
She was in Dallas this week to speak at Metrocare’s Meal for the Minds luncheon and spoke with me by phone. Here are excerpts from our visit:
At what age were your girls diagnosed? Mia and Gianna were diagnosed on the same day in November 1999. I don’t recommend that. They were 4 and 3. You usually get started with intervention before formal diagnosis. But it’s still no fun. It’s still a dreadful day. It’s just a searing agony when you watch your children suffer.
When did you realize Bella was on spectrum? She was a different child than her sisters. Bella was completely different physically. Her structural development was off. The very first person who came for intervention said it looked like cerebral palsy. She’s cut from a very different cloth than her sisters.
What are some coping skills that you use to help you through each day? I think staying connected with friends and family is important, but so is being able to let go of the friends and family who cannot and will not grow in this new direction with your family.
I have found new friends. Our children have this common diagnosis. It gives us a bond. Autism is a very lonely diagnosis. It’s important to find a group where you can fit in and find comfort and learn and grow.
How can friends help families who live with autism? Let Mom or Dad tell you their fears, hold their hand. Give them a Starbucks card. Try to support them the way you would if a child had been diagnosed with leukemia.
Try to envelope Mom and Dad with love. It’s lonely and it’s frightening. Give love and kindness and reach out and just say, “I’m sorry for what you’re going through. I wish I could make this easier for you.” That’s worth a million dollars. Just be a friend.
There’s no known cause for autism, nor a known cure. How does this fuel dissension among parents of children with autism? I do think there should be a cure for autism. I simply want my girls to live a healthy, safe, independent life. I adore my kids the way they are, but every American parent wants more for their child.
When you peel back the layers of the controversies of autism, we are a community. I try very hard not to disparage the other side who say there is no cure, that you don’t need a cure. We need each other.
When it comes time for adulthood, it’s not going to matter what Mom and Dad think. It’s about the kids. It’s about giving them the best, safest life possible.
What do you want to hear from the presidential candidates? If I were to sit down with a candidate tomorrow, they would nod and smile and pat me on the head and move on. I’m thinking to Jan. 23, Inauguration Day. What do we do next?
We have not acknowledged the autism epidemic in any fashion in America. We’ve acknowledged increasing numbers. We have not acknowledged an epidemic that is changing families.
There is a decided lack of action and sense of urgency regarding the autism epidemic. This is as much an epidemic as cancer, as Alzheimer’s, taking 1 in 55 boys and altering their lives — taking them out of the game to some degree. That will have ramifications on tax bases, social safety net, workforce, our volunteer base.
There are raging numbers that show no sign of going down. They’re only going up. I’m hoping for real urgency. Awareness without action is nothing.
Tyra Damm is a Briefing columnist. Email her at tyradamm@gmail.com.
1 comment:
Thank you so much, Tyra. I enjoyed talking to you and wish we were neighbors! Kim
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