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Thursday, May 9, 2013

Guest blog for Find My Eyes

There's a girl at the Birthday Party doesn't seem to quite fit in. Her social cues are off and she rather run around than sit and play. She's a gorgeous little girl, some say her beauty portrays a porcelain doll. She pushes kids out of the way, not because she's mad, but because she hasn't quite figured out her place in space and using her words correctly to do so. Everyone notices she's a little different. But she's so cute. But she can talk. But she's so smart (splinter skills). But she can walk. But she looks so normal.

"Happy birthday to you Happy Birthday to you YEY" the crowd screams. She screams in horror and sometimes flees under a table. No one reacts, but everyone is wondering why this little girl just did that. It's cake time. Also an indicator the party's almost over. She melts. Screams. Hits her mommy. Scratches her mommy. The whole room stops. Mommy removes her from the room. She's calm again playing with all the kids. I can see she's melting. I see her time ticking away but I remain on the sidelines. I watch her, she flees under something and lays there for a while. A parent looks at me like how could u let her do that. That parent scolds their child, "You do not go under there like Grace" while side eyeing me. Like Grace? I say to myself. I swallow a lump down. Are you blaming Grace? Sometimes I want to scream, "you can not discipline a neurological disorder!"

I know when things like this happen, most people can not wrap their head around my daughter. This is hard for me, because of this, some lack empathy for her. And my girl needs empathy.

Being a girl with ASD is tough, add aggressiveness and impulsivity the painted picture becomes more difficult for an outsider to process. In a room full of people who watch her melt down a huge part of the room say to themselves, discipline, spoiled, mean child. I can feel it. Their eyes burn through me as my daughter scratches my face or kicks me in the stomach or tosses a full cup of soda across the room. It's so hard to keep my heart from racing and to calm my daughter down when everyone's watching. I've learned over the years to block everything out and focus on my daughter's  struggles.

Every mothers dream is to do "girl like things" with their daughter. No one pictures a mother restraining her daughter. A mother telling a school district my daughter will agress towards anyone who puts demands on her. A mother zipping up her daughter's bus harness. A mother covering up scratches on her face with make up. A mother making sure nothing is in the backseat so nothing gets thrown at her while driving. Society is not aware of this side to motherhood in an ASD girl's life. It's never spoken about.

I am not ashamed of my beautiful girl, Grace. She does not mean what she does, and I will never give up on her. And I will work with her as long as it takes to calm her down. She's worth every scratch, bruise, and scrape. She's funny, so smart. And on her good days she's so loving. She loves so purely and so innocent.

She's not a monster. She's not a bad kid. She's not spoiled. She's Grace. She is a girl with Autism
Spectrum Disorder. She needs help navigating in a world that her brain can not fully process. She needs empathy. She needs you not to fear her or make her feel like she's a bad example infront of your kids. She loves. She needs your understanding. She needs your love. She needs acceptance. She needs above all AWARENESS.

Billy

Intuition. It was something I was born with. The intuition part of my brain developed at an early age. My brother Billy is severely disabled, the quickest way to explain is his development ranges from a 2-4 year old, he is also non verbal. Billy is also highly behavioral. He engages in self injurious behaviors and has a high threshold to pain. I always knew, from as long as I could remember Billy needed me. Oddly enough I never asked questions or judged Billy. I always true heartedly loved him, and just understood. Most of all I always knew he would be my responsibility one day. My parents any I never really spoke about it and they never asked me. They would never because I'm sure they flt it would be a huge burden. But to me, it's not. Taking care of my brother, my family, is not a burden. It's one of the reasons I walk this earth, I believe that. And having a daughter with Autism made that more clear to me. My intuition is what Billy gave me.

Empathy. I would say I possess something all humans need to have a touch of. Empathy. Watching my brother get so frustrated and bang his head on the wall until he bled or until the wall busted through. I learned empathy. This poor boy is so frustrated he has to hit his head on the wall to feel some sort of processing. Empathy. Watching my parents drag through their days after being up all night and still smile and laugh. Being empathetic is what Billy gave me.

Patience. Some say to me, "wow you are so patient". My patience comes from explaining to my brother a million times he can not go for a ride in the car over and over again as he would endlessly sign "bye byes in the car" over and over. Patience, when Billy would be banging his head or getting upset and I would watch my parents do everything in their power not to lose their cool and work through it with him. Now that I have Grace, I give her all that I got and always strive to be as patient as I can be with her. Patience is what Billy gave to me.

Love. Watching my brother love the little things in life like twirling a straw, the game show network, Elvis music. He whole heartedly loves people and things all discriminations set aside. After all the years and hardships my parents went through they still love each other and still hold hands. I love whole heartedly. My heart is filled with love and I'm not afraid to give it or show it. my relationships are all so fulfilling and beautiful because of the love i have for people. How to love is what Billy gave to me.

The list goes on and on. I could sit here and name everything my Angel Billy gave to me. He taught me so much and prepared me for life. Burdened? Never! If anything I owe him this, for all he has given me. It's my pleasure, it's the least I could do. My parents are reaching the age where they just can't do what thy use to. So Ernesto and I have decided its time to take the reins and start making
decisions for Billy. I'm honored.

My brother is my super hero <3