A Mommy Story

When I was younger and had a lot more time, I participated in a few charity 5K races. Oh, don’t think for a second that I ran them. Winning didn’t matter to me, and besides, if I ran them I would have passed out before I hit 1K. A nice brisk walk was just fine for me, along with several others. I was there to support the cause, not to kill myself.

I’ve been wanting to do some of those again, and out of the blue I found and signed up for one that is May 3. Bonus: no running needed. Even better? It’s a cause I’m deeply committed to.

The Walk Now For Autism event is being held in Cincinnati on May 3, and I’ll be there with Mira on my back and Cordy and Aaron by my side. This walk is a fundraising event for Autism Speaks, an organization that is dedicated to increasing awareness about autism spectrum disorders, as well as funding research into the causes, prevention, treatments and cure for autism.

As many of you know, Cordelia was diagnosed as being on the autistic spectrum last fall. Officially, it’s PDD-NOS (pervasive developmental disorder, not otherwise specified), which means that she has autism-related delays in speech, motor skills, and social skills. I probably should have had her evaluated earlier. It took some time for me to accept that Cordy was different from many of her peers, but the full impact hit me when she was enrolled in a preschool last summer and we were told that she did not fit in well and had been permanently removed from the Friday assembly because of her inability to transition well.

She screamed as if she was in pain when they tried to make her fingerpaint. She fell to the ground, wailing, when her classmates got too loud. While the class watched a movie, she was off in another corner of the room, talking to herself as she lined up toys and created new patterns with colored blocks. And she never talked to the other kids – it was like they didn’t exist to her. If another child said hi to her, she ignored him or looked confused, not sure what to do.

She’s been attending a special needs preschool since the fall, and thanks to the therapy she receives there, her transformation has been amazing. She uses eating utensils now, something she never did before because she was afraid of dropping something gooey onto herself. She doesn’t get upset when I leave. She says hi to other kids and can name all of her friends at school. She fingerpaints! She sings! She uses full sentences to ask for things, and has even started saying “I’m sad,” instead of having a meltdown when she doesn’t get her way.

In fact, her meltdowns, which used to be a nearly daily occurrence, are now one or two a month, if that. She no longer tries to hurt herself by hitting her head on the floor, either. That has probably been the best change for me.

None of these things would have come so quickly (or at all) without help from her therapists and her skilled teachers. She still must deal with sensory issues upsetting her. She still relies too heavily on scripts (scripted phrases she repeats over and over), and while she’s more social with other kids now, the nuances of social interaction remain foreign to her.

However, these things will come with time and work. Her teacher reports that she has an amazing vocabulary and is far ahead of many of her classmates in letters, numbers, and other academic areas. She’s a smart girl with a bright future ahead of her, partially thanks to early intervention.

So it’s no surprise why I would want to participate in Walk Now For Autism. The research that has been done so far is already helping Cordy, and I want to see further research done to improve the therapies available for her and other kids on the spectrum. Cordy only gets a small amount of group therapy in her class each week (one hour of PT, OT, and speech), and while we are eligible for more therapy through the county, the wait list is long right now. We have one of the best health insurance plans in Ohio, yet our insurance refuses to pay for any therapy for Cordy. Autism is considered an “incurable and untreatable” condition by many insurance companies, and as a result any therapy must come out of pocket for us.

I also want to see more research into finding the causes of autism. Mira is nearing a year old, which is when we began to see some of Cordy’s quirks emerge. My fear that I will lose Mira’s outgoing nature to this disorder is understandable. I’m holding my breath, watching her carefully, and will likely not exhale until I see that she is a typically developing three year old. I wouldn’t trade Cordy for anything the world could offer, but parenting a child on the spectrum does have additional struggles, and having to do it twice is hard to imagine.

I set a modest goal of raising $250 for the walk. I think I can raise that amount in a week and a half, and would love to raise even more than that if possible.(Edited to add: Thanks to your generous donations, I’m now raising the goal to $500!) Would you consider contributing to my walk? Even $5 helps. Locals who want to walk with us on May 3 are also welcome to join my team. Online donations go straight to Autism Speaks, and like any donation to charity, are tax deductible. Thanks for anything you can give.

Also, while I’m on this topic, read my review of the Kibbles Rockin’ Clubhouse DVD at Mommy’s Must Haves today. It’s a DVD designed for children on the spectrum that teaches social skills, along with providing strategies for parents using music therapy and speech therapy.