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The First Layer

This is the scariest thing I think I have done in my life. I just got the push from God and I felt like my daughter was pulling me to get on one of those rides at the Amusement Park that goes really fast, loops and twists, then goes backwards. I was screaming – “No, No! God this is NOT what you want me to do! Nooooooooo!” I say that because, I have been massaging so many ideas of how I can help families of children with autism, especially the parents. I am a  parent of a child with autism. Before I was a parent, I worked with children with autism and got burnt out as a professional. So, I changed my career path. But, God said, “Gotcha!” and I gave birth to a little boy who, even at the age of 3, was not speaking. When he stopped looking at me, I felt that white hot poker in my chest. All of what I knew about autism came rushing back. Still, I was like, “No. He’s just super smart. His Dad speaks Portuguese and he’s hearing two languages. This is NOT Autism!” But, of course, it was!

What do I share? The thing that makes me shriek with horror is to share the conflicting feelings that I have as a Mother. Yes, I absolutely love my son! Hands Down! It rips my heart apart to even think anything to the contrary. But, if I’m going to write this, I have to be honest. That’s the only way I think I can help another Mother (or Father) who might be reading this. So here it is. Authentic Autism!

Being a parent, a Mommy, of a child with autism is hard. There are so many layers of that “hard” so let’s peel back a few. On the outer layer is other people – school principals, teachers, social workers, case managers, psychologists, doctors, nurses, insurance officers, people at the grocery store, at the clothing store, at the park, at the fair. These are a list of people and places that I have had a difficult time. By difficult, I mean, dirty looks, nasty comments, resistance to feeling empathy or showing compassion. Because I had worked in special education before the birth of my son, I knew the hypocrisy that lived and breathed behind closed doors. That’s why I left the field. When I first got my son’s diagnosis, my initial reaction was – “I am going to have to go to so many meetings!” I thought that it would be a little bit different for me. I am a Stanford graduate who has worked for many years teaching children with autism. I have a Master’s degree in Psychology with an emphasis in behavior analysis and I am a Board Certified Behavior Analyst (BCBA). I also have a PhD in psychology. My research focus is stress for parents of children with autism. So, I think I know a little bit.

You would think that it would be easy for me. But when your child is in full blown tantrum mode in the middle of the store, or wherever, all that does not matter. All anyone sees is a misbehaving child. Autism is the invisible disorder. Our children look just like any other beautiful child. So, when they are experiencing auditory sensitivities that are excruciating, or overstimulated by people in the environment, they appear to be acting like a spoiled brat. Really, that’s what it looks like. But that’s farthest from the truth. I’ve had doctors, store sales assistants, and even customers passing by feel it was their right to make a comment on my parenting skills or lack there of. How infuriating. They don’t know what I go through on a daily basis. Let alone, they don’t know why my child is having a hard time. This is when I just want to wear a sign that says, “Have Compassion People!” Actually, these experiences were the inspiration behind the CARES™ Compassion Cards (click here for more information).)

So this is the first layer. People outside, who don’t know. Who have heard half-truths. Who assume that our precious little people have no intelligence and nothing to offer society. That is the first layer.


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