Why The Blue Light?
What is Autism? Don’t ask me. Our family has loved someone with it for 11 years now but I am no step closer to understanding it. It’s Autism Awareness Month and instead of giving you a clinical definition of the disorder, let me give you a day in the life.
My beautiful Niece is more than just a clinical name, Autism. She’s 11, has beautiful brown hair and big brown cow eyes. She loves to make wreaths and pick wildflowers, she can imitate Kermit The Frog perfectly and she has a great sense of humor. She wants a friend more than anything and is now starting to worry about what she wears like any girl her age.
When Makayla was a baby, something just wasn’t right. One day she stopped looking in our eyes, she stopped smiling and coo’ing and she wouldn’t react to any loud noise or pain. Where had she gone? It was as though she had been kidnapped and someone had stolen her little soul away, leaving us with just her shell. We didn’t want just her shell, we wanted the light back in her eyes.
Finally, after countless doctor’s visits we had a devastating diagnosis, it was Autism. It’s a broad disorder and there is no cure. Doctors don’t really know how or why it happens for sure.
Our kidnapper, our thief in the night, was Autism. We all cried, had our pity party, went through denial, grieved in our own way and then started on the rough road of discovery into Makayla’s unique world.
Everyone’s case is different who is on the Autism spectrum. There may be similar traits and characteristics but it is a very personal disorder and a very personal path for each person and their family.
Makayla also has OCD, needs to touch things more than once, spin around a few times, has loud outbursts and needs to close all doors when she enters a room. I admit, it looks strange but it’s how she comforts herself. Children and adults stare at her all the time. They stare at her like the Titanic survivors starred from their lifeboats as at the Titanic sank. That scarred look and I admit that it pissed me off. Okay, she’s different than you and your children. So what? Do you have to stare at her and make her feel bad? She’s a real person with real feelings and under all those strange ticks, she’s loving and sweet and all she wants you to do is like her, just like anyone else.
I felt for a long time like punching people in the face every time I would see a stare or whisper. Kids would call her “retard” and pull her hair, whisper behind her back and leave her out on purpose. One day, at my Nephew’s baseball game i experienced her torment as two girls circled her and started knocking on her forehead yelling. “Hey, what’s wrong with you?” Makayla just stood alone with her head down. I ran to her aid yelling at these little bullies asking how they would feel if someone pounded on their head. I screamed, “Everyone is different, get over it!” I then took my Niece’s hand and walked her away, my blood boiling.
It was this experience that changed me. Maybe this is my issue? Maybe i’m too sensitive to this. I needed a new perspective. People don’t need to hear my anger and neither does my Niece. They need awareness. I then started to squelch the stares with, this is what Autism looks like, would you like to meet Makayla? I’ve had people walk away from me and some who have actually wanted to walk up and play with her. It helped me cope and I realized that being angry really didn’t help anything.
I’ll never forget eating at Friendlys when Mak said her first full sentence. “I want a cheeseburger with fries.” We all cried and screamed with excitement. The Waitress didn’t know what had happened, poor thing. Most moms and dads are telling their kids to be quiet at this age and all we wanted was for her to say something…anything.
I’ve heard some pretty ignorant things about Autism, even from people I work with. Just dumb comments like, “It’s just an excuse for kids who act up.” Or “Everyone has Autism these days.” I’m sure they would feel differently if they experienced the worst day their child has ever had multiplied by 1,000, everyday. I’m sure I would have a meltdown too if everyone in my family spoke another language and I couldn’t learn theirs and no one understood mine.
The other day, My Niece said to me “I just want a friend.” It broke my heart. In fact, not one child came to her birthday party except her immediate family. It’s heartbreaking.
All I ask, as an Auntie who loves her Niece with all her heart is that not every kid having a tantrum at the supermarket is a “BAD” kid. They may be on the Autism spectrum and their mom or dad, grandparents, aunts and uncles love them and are living with something very difficult and trying their hardest to do their best. I guess that’s what this month is all about, awareness.
Thanks for reading this, I appreciate it : )