Monday, April 2, 2012


Today is Autism Awareness day, and April is Autism Awareness month. Never in the past did I pay that much I do.

Here are my questions: What does "Awareness" mean? What needs to be worked on? What can we be aware of?

First, I think we need to be more vigilant at catching the signs of Autism. Ellie had so many signs, and yet it took until almost age 10 to get her diagnosed. She is very high functioning, and her diagnosis of Asperger's isn't as easy to see as someone with a lower functioning level of Autism, but still the signs were there. We did Parents as Teachers, MOPS, Preschool, we charted her milestones and mentioned her "quirks" to our doctor...but not one person caught it. We heard: She's a "difficult" child. We should take parenting classes. We should spank her, or be more firm. We shouldn't "put up" with these meltdowns, she must be doing that because she thinks she'll get what she wants. On and on, year after year.

We struggled through kindergarten and first grade, then had her OT evaluation done privately to get her first diagnosis of Sensory Processing Disorder. I filled out forms then, that asked about her social skills, but even I didn't realize I was answering the questions wrong. "Does your child make friends?" I answered yes, but now realize she really didn't. She had friends, friends that were my friends' kids that had grown up around her, but she didn't make friends. I was uneducated in Autism, and no one took the time to help me. We struggled through second and third grade, but it wasn't until fourth that the incredible social differences between Ellie and her peers was seen. And seen it was... Meltdown after meltdown prompted the school to begin testing her for Autism. I had begun my research about a year before that, spurred on by the show Parenting, and it's shocking resemblance to our lives. After months of testing and waiting, we finally got our answers just before Ellie turned 10.

"If only", those words pop in my head often... If only someone would have been knowledgeable about Autism that spent time with her, a teacher, a counselor, a doctor...maybe we could have shaved a couple of years off that wait. A couple years less of heartache and rejection, a couple years less of self-esteem crushing comments from family and so-called friends. That needs to change. I think anyone in the medical, teaching, or childhood program fields should be thoroughly educated in the signs of Autism.

Also I think we need to educate the world on Autism, and to be aware of how they act towards us and our children. Life with an autistic child is HARD. As Ellie's mom I spend countless hours and dollars on therapy sessions for her. I know often what she can and can't handle, mostly from trial and error. I have had nasty looks and mean comments thrown at me from total strangers. I have dragged her kicking and screaming from restaurants, pools, stores, theme parks, church, playdates and parks. I have learned the hard way how to read her signs of "I'm done." I will never forget hearing her screams echo out of restrooms in public places like Disney World or the local zoo. It's been a heart wrenching journey, fraught with critical naysayers along the way. With some awareness I think some of that would end. When people are aware they tend to be more understanding.

Awareness for us has brought relief. Relief in the forms of answers, therapies, school interventions, and new friends. Life seems like it's slowly getting a little easier, a little less exhausting. We can see tangible results of the efforts of so many people coming together to help Ellie. And for that I am so, so thankful.

So here's to Awareness. May it spread like wildfire bringing wisdom, patience, and grace with it. Things we could all use a little more of.



Janelle said...

Standing ovation!!!!! Beautiful!! Everyone needs to read this!!

Carissa said...

i'm moved, shelley. thank you.