To close out Autism Awareness Month this April, we are excited to welcome our first-ever guest blogger, Victoria Rusay. Victoria is a Levittown, PA-based mom of two. Her older child, Eliza (age 4) was diagnosed with non-verbal autism two and a half years ago. Here, Victoria shares how Eliza’s diagnosis has put into perspective what really matters.
Two weeks before her second birthday, my daughter Eliza was diagnosed with Autism. Since then, my husband Rich and I have spent the last two and a half years learning everything we could about living with autism. The funny thing is, Autism presents differently in everyone, and so Rich and I have become experts in Eliza rather than experts in Autism.
Anyone who knows Eliza can vouch for how awesome she is and what a great kid she is. Eliza has the best temperament, she’s so easygoing and just plain happy. She is still non-verbal, but that doesn’t stop her from telling us what she wants and doesn’t want. We have been working year with her on PECS for the last year. She has a purple binder that has cards representing different food items and activities for her. The end goal is for her to flip through her book and grab the card for whatever it is she wants and hand it to us. That’s pretty hard, isn’t it? It’s a lot more work than just telling someone that you want a drink or to bounce on the ball. She works hard…like, really hard.
Living with autism is also really hard, and challenging. I’m never going to be someone who posts the hard part or shares her struggles on Facebook. I won’t post a picture of Eliza crying or having a rough day. I go with the thought that WE wouldn’t want the bad days or the rough times where we struggle out there for everyone to see, so I’m not going to do that to her. But I don’t think about those tough times of living with autism, as they are few and far between.
I will tell you that we need more funding and more money thrown into the care and quality of therapists, teachers, and aids that work with individuals on the spectrum. We have lost a lot of really great therapists due to financial reasons, and it isn’t fair. Those women and men take a lot of abuse, and they pour their hearts and souls into the job and deserve to be paid far more than they are. While living with autism, Eliza has flourished because of her therapists and teachers. And we are so grateful to them.
This little girl has taught us a lot about life. I’ve been humbled so many times. She makes you look at the big picture and realize that the things you once thought were important really aren’t. She’s shown me unconditional love. Eliza is a giant snuggler. She loves to cuddle with us, and her latest thing is grabbing my face and planting a giant kiss on me. When you hear that Autistic individuals lack empathy, I laugh. She cares a lot.
Autism awareness is every day for us. And it is this amazing journey I never thought I would be on. But you know what? It makes me appreciate life a heck of a lot more.
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