Recognizing your own little pot of gold, despite autism diagnosis
For the Appeal
Today when people talk about the “spectrum of autism,” I visualize a rainbow that stretches across the sky accented by children from one end to the other.
Today, it’s a thing of beauty.
But it wasn’t always.
When a parent hears the words “your child has autism,” it’s a frightening moment.
With recent statistics, depending on what you read, placing every one in 150 children (down from one in 166 a year ago) in that category, there are a lot of frightening moments happening each day in this nation.
Now there are many theories about what causes autism – environmental factors, genetic links, possibly the mercury in all these now required immunizations that children are subjected to the minute they travel down the birth canal.
If I’m at all like other parents of children with autism, we go through a period of wondering what we could have done to contribute to the situation. Every parent is going to handle the news differently.
Natalie’s father, Patrick, and I are a good example of two extremes. To this day, he denies there ever was or has been anything to be concerned about because, as close as I can figure, this would imply that there’s something wrong with him.
Of course, it’s not about him. For me, I allowed myself (no joke) three minutes of upset about her diagnosis and then jumped in to the middle of trying to figure it out. These diverse responses are not uncommon.
Before her diagnoses, there were situations I learned by trial and error to work around. Somehow, I knew she couldn’t be in noisy environments, or be over-stimulated without going into “melt-down,” a period (often quite long) of uncontrollable crying and throwing her body, sometimes banging her head against the wall (or whatever is available) and, in Natalie’s case, biting herself.
I even had a lady at Kmart say once that she wouldn’t mind if I spanked my daughter to get control of her. That was the last time for a while that Natalie was subjected to shopping.
I didn’t believe the doctor’s initial diagnosis and hauled her off to California, where the audiologist tested her hearing for an entire weekend.
Sure enough, her doc was right, and the journey – long, emotional and difficult – which eventually gave me back my child began.
When I talk with parents today, I tell them that, in retrospect, I can see from family photos the period when she started to go away from us. But also when, thanks to the care and intensive work of many people, she began to come back to the world.
I believe that at this point, me knowing what causes autism doesn’t matter, because it will change nothing in my family’s universe. But for those children still striving for recovery, yet to be diagnosed, yet to be born, finding the cause is of critical importance.
What I have learned through my journey with Natalie is that regardless of which end of the spectrum a child is on, or even if they’re somewhere in between, each is their own little pot of gold.
They are loving, expressive, generally very bright and funny with incredible talent in one or more areas. Sometimes we can get them to re-enter the world, other times they stay in their own universe. The children affected by autism are as varied as the spectrum they’re on. This is part of the difficulty of figuring out how each child will be touched by this, or how best to address and treat it.
For parents, it can be an incredible challenge, at times heartbreaking, punctuated with moments of awe and joy.
Two autism-related events are coming up to benefit and inform. If either applies, your participation is welcomed.
Saturday, the Autism Coalition of Northern Nevada presents an evening of music and dining at Grand Sierra Resort in Reno to raise money to establish a Lili Claire Foundation in Northern Nevada. This foundation pays for costs associated with testing and treatment for autistic children. Costs not covered by medical insurance.
The evening begins at 6 p.m. with a VIP reception and silent auction, dinner at 7 p.m. and a concert featuring Shari Bellefonte, Dilana White and headliners the Bangles at 8 p.m. A live auction takes place throughout the evening as well. Tickets can be purchased through ACON at 329-2268, at Grand Sierra by calling 789-2285 or through Ticketmaster by calling 787-8497. For more information on this event or for resource information, visit http://www.aconv.org.
From 9 a.m.-4 p.m. Oct. 27, “Biomedical Approaches to Autism” takes place at Gold Dust West in Carson City.
The conference, presented by Families For Effective Autism Treatment (FEAT) of the Carson Valley, is free of charge and is open to everyone. The day will include topics such as “The Causes of Autism,” “Toxicities, Deficiencies and Treatments” and “Breakthrough Treatments and Treatments of the Future.”
Parents will also share their journeys through autism, and there will be a question-and-answer period at the end of the afternoon. Lunch will not be provided. RSVPs are requested by calling Wendi Fauria at 782-4138 or by e-mail at http://www.featofthecarsonvalley.org.
• Karel Ancona-Henry can be reached at email@example.com or at 246-4000.