Earlier tonight I was trolling random tweets when I came across something I thought was nice. I commented on it and the response got me curious. The tweet involved a charity I have supported for the past six years and the more I looked into it, the more I asked myself if I truly believe in the organization as much as I once claimed. Maybe a little background is in order.
Before my granddaughter's second birthday her vocabulary centered around the word "Papaw". I might have had something to do with that. Suddenly, seemingly overnight, she stopped saying Papaw and didn't seem interested in picking up any more words. She started to withdraw and stopped actively participating in activities. She was soon diagnosed with a disorder on the autism spectrum and our lives changed.
Having grown up with a sister who was MR/DD and worked with adults and children with mental and physical disabilities, I was prepared for the worst and to be honest, every piece of material that I could get my hands on gave us the most grim picture of our future with an autistic child. No, we knew there wouldn't be a ton of illnesses and surgeries or late night trips to the emergency room, but we were warned that life would suddenly become very stressed and our meager finances would disappear.
Every press release warned us about how difficult it would be to control an autistic child and prevent her from "embarrassing" us in public. They talked about the sleepless nights, the scary moments when children run off and the intense moments when they would shriek and cry out for no apparent reason.
Yeah. We had all of that, but not in the abundance we were told to expect. The older Hoochie (my nickname for her since she loves to dance to everything) got, the more we learned about her, about autism and the various disorders on the spectrum. We came to realize that contrary to what we'd been told, we didn't lose Hoochie. She is ever present in our lives, mine more than others because... well, let's face it, every little girl has grandpa wrapped around her finger. But yes, she is present and in a big way.
Hoochie hasn't disappeared. She nor her mind have been taken from us. Because of her, her mother, grandmother and I have learned so much we would never have learned without her. I'm not talking just about the spectrum, I'm talking everything. You see, Hoochie loves everything. Well, it seems that way. I'm convinced that she wants to be a polygamist and marry Shrek, Handy Manny and Elmo. Any video she finds with any of them in it she will watch. It doesn't even need to be in English. In fact, she seems drawn to foreign languages.
We have come to be able to identify and differentiate at least five languages because of her, even if we never learn to speak them. To help her better communicate with us, we have learned some rudimentary sign language along with her. Even when she doesn't speak or sign, we've learned to identify her wants and needs based on her body language. We're not experts in any way, but we are masters at communicating with her.
When we first started learning about autism, we turned to what was then a young organization called Autism Speaks. Back then they were great. They helped us get ready for the worst that was to come. Even as we began to learn more about autism and the information we were getting from Autism Speaks started to become either outdated or opposed to new research, we still supported the organization because they are looking for a cure to autism. That sounds good doesn't it? Who wouldn't want a cure for autism? I personally dream of the day when I get ot hear my Hoochie say "I love you, Papaw."
Let's face it though. A cure may never come. We can't even agree on the cause. While we wait for a cure, my family has become more interested in what is now and not what could be. You see, we have learned that yes, there are and will be times when we get stressed and unnerved and confused by Hoochie's reactions to the world around her. But, we have also learned that there have been, are and always will be times when she does nothing but make us proud.
This is one of the most loving, open children on the planet. Never does a day go by when she doesn't give use kisses and hugs. Never does she have an outburst that when it's over she doesn't look at us with hurt in her eyes as if she were apologizing. It is impossible to meet this child and not love her. So our focus is on her. Our focus is on making sure she gets an education and has friends and enjoys life. Our focus is on making sure this child knows every day that she is loved, that she matters, that what she wants and what she needs is just as important as everyone else.
Everything I've read this evening has convinced me that Autism Speaks no longer does so for my Hoochie or my family. My grandchild does not need an organization that still believes she is a burden on her family representing her. My grandchild needs her family and friends to love her and show her that she is just like us and just as different from us as we are from each other. She is not a puzzle. She is definitely not a puzzle piece. She is no more and no less than the wonderful, amazing, brilliant, loving, fascinating Hannah.
Now, having said that, I will still paint my public profiles blue throughout the month of April, to show my love for everyone whether they're on the spectrum or not. I will, however, starting tomorrow find a more appropriate way to do so that does not show puzzle pieces or affiliate us in any way with Autism Speaks.
Thank you for reading my little rant. I invite discussions on this subject, so if you are reading this on my blog, via my Google+, on twitter or facebook, contact me in any way you can and I promise to share our conversations and hopefully we can all learn just a little bit more. Until then, happy reading.
