Vail Valley books: Mother watches son emerge from autism
Vail, CO Colorado
Like most moms, Leeann Whiffen ” who will visit the Vail Valley Thursday ” felt all the pride, joy, and excitement when her son Clay was born.
Those feelings were somewhat short lived. The Whiffens began to notice something was a bit off with Clay. He had trouble sleeping and would have bouts of crying and wailing that unusual for babies.
The Whiffens soon learned that Clay was autistic, a diagnosis that sent Leeann on a long, arduous path to learn about the condition and how she could help treat it. She has documented her journey in her memoir, “A Child’s Journey Out of Autism,” which she will discuss Thursday evening at 6 p.m. at the Avon Public Library as part of The Bookworm’s Live at the Library series.
Vail Daily: What inspired you to write the book? Was it challenging, therapeutic ” or both?
Leeann Whiffen: My main goal in writing my book was to give parents hope ” hope that this wasn’t the end, but just the beginning of the road in helping their child reach his or her greatest potential. I wanted to share what I had learned, be that friend when isolation often creeps in, and to raise awareness about what families have to go through to get appropriate treatment for their loved one.
Many aspects of writing the story were difficult because in order to truly capture the emotion and put it into words that would clearly portray what happened called for me to go back and relive each of those moments. That was heavy. But I also got to relive Clay losing his diagnosis ” that was one of the most joyous moments of my life.
I never really thought of our story as being cathartic, but after I completed the manuscript there was this feeling of finality, of healing, and of knowing that even if I helped one person it was all worth it.
VD: How did react to learning that Clay had autism?
LW: It took a few months from Clay’s initial regression to the point where we finally realized something was really wrong. When a professional at early intervention suggested he had autism, I was angry with her.
It took me a few weeks before I could bring myself to read anything about autism without getting nauseous. Clay’s symptoms matched most all of the symptoms of autism that I had read and researched.
He was becoming increasingly aggressive, so by the time we received his official diagnosis, I already knew. It was a relief in a sense to put a name to what had stolen our little boy. It also made it official. So while it was somewhat comforting to have a name for what was happening, the curtain came down momentarily on my hopes and dreams for Clay.
VD: How much time did you spend researching treatment?
LW: When I finally forced myself to start, I spent entire days and nights sorting through loads of information. I was a 25-year-old stay-at-home mom. The amount and complexity of research available online was daunting.
But I’d often find glimmers of hope, like when I first learned about ABA therapy and the results one family in Maine reported and how parents noticed marked improvement in their children when gluten and casein were taken out of their diets.
I also joined autism parent e-mail groups to find out what they found most helped their child. The more I read and researched, the more I realized we needed to start therapy quickly for the best prognosis.
VD: What stereotypes are you hoping to dispel about autism?
LW: Autism is treatable. All is not lost after a diagnosis. There are underlying medical symptoms that can be treated.
Does this mean all kids who undergo treatments for autism will recover and become indistinguishable from their peers? Unfortunately, no. But it is important parents have hope and to keep forging ahead despite those tough days because even if it isn’t recovery, kids can and do significantly improve with appropriate therapy.
Recent research by Debora Fein and others suggests that one in 10 kids can recover from autism by age nine. Other research, by Dr. Ivar Lovaas at UCLA, shows that with early, intense behavior therapy, 47 percent of children can recover from autism.
VD: Actress Jenny McCarthy has become outspoken about autism. What’s it like seeing a celebrity trying to raise awarenss?
LW: I appreciate Jenny for how she has brought autism into the spotlight and given it the national attention it needs and deserves. Autism is a national health crisis.
Unfortunately, sometimes it takes a celebrity of her caliber to turn heads and get the right people thinking outside the box. She is a voice for many parents in the autism community who reflect her same opinions.
VD: Is there any recent news on your legislation initiative regarding insurance coverage for autism patients?
We were extremely disappointed that Clay’s Law, Senate Bill 43, a law requiring private insurance companies to pay for medically necessary, evidence-based autism therapies didn’t pass in Utah. We’re gearing up for next legislative session, and we’ll keep coming back until we’re successful, or until we’re able to get it passed on a federal level.
We’re lobbying our senators to co-sponsor the federal Autism Treatment Acceleration Act that will require insurance companies to cover medically necessary autism treatments.
I also want to congratulate Colorado on the passage of Senate Bill 244, requiring insurance companies to cover diagnosis and treatment of autism, now awaiting the governor’s signature. Great work!
VD: How is Clay doing these days? In the epilogue, it seems like he’s doing quite well as a happy go-lucky little boy?
LW: The other day when I picked up my boys from school, Clay hopped in the car and started talking excitedly about how bad he wanted to play tackle football. He handed me a flyer and pointed to the registration date telling me we could save $25 if we registered early.
He’s quite the salesman. How could I say no, despite visions of head injuries and broken limbs floating through my thoughts.
He plays the electric guitar and recently placed in the top three in eight events at his state gymnastics meet. He just finished building a tree fort behind our house with his older brother and the many other neighborhood kids. He loves his brothers. His younger brother, Judd, tells him all the time that he is his best friend.
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