Saturday, March 29, 2014

Autism "action" month.

Autism awareness month. Of course. I do all the ribbon-y things. I have blue hair extensions, I ordered a license plate cover, and bracelets for my sons class and I am attending every single event I can, and telling my story to everyone who will listen. But it’s not enough. So people will see autism, and hear the word. But they can’t possibly know what that feels like for me.
I speak for me, and I speak for my other families. I work in a non profit field. I am not full time. We are funded by grants. I take these stories home at night. I answer my phone at any hour, and any day. I cry for them and with them.  I celebrate their success and every milestone their child achieves. It’s like it’s happening to me again. I look to other moms who have been here before me to light my path.  I know my son has what is considered “severe autism”. I would love to tell my legislators, the people at the state level that make decisions that directly affect my family and our quality of life how beautiful he is. How he makes me smile when he stops his constant stream of motion for a few seconds and lets me into his world and touches my face and maybe says “mom” or “two arms” (that means a real hug). That moment from any motion picture when time stops and all I see is his eyes are this deep blue. And you forget about all the screaming, flooded rooms, the two hours of sleep, the painting the sink with nailpolish, the healed fractures in my ribs, the heart healing that happens every summer when the wound is ripped open again while I watch him grow up. Seeing each year the differences between my son and his peers is more apparent and they say hi and walk away at the park to play football. I have to hold back tears and wonder if his heart is breaking too.
That is the story I have to tell people. I want to tell the world how beautiful he is, but I have to tell them the horror stories just to get what I need for him and it’s wrong. Why do I have to relive the ugliness, the pain, and the hurt and every battle scar I have bared to the “gatekeepers” of services? How can I give him the best quality of life I can without help? I can’t.  We have a tendency shout from the mountain tops so people can see our children are CHILDREN and we want the inclusion, we want the support. But walking that fine line is so damn hard. I am so inspired by the Carly Fleischmans, the Jason McElways, the Alex Winemans, but that is not my autism. 
I cried my eyes out in my car when I heard the CDC released the numbers. I in 68. I in 42 boys. Yes, I give a shit about why and prevention and that this is a national epidemic. But is that going to help the other families already here? We are going to be facing a nation of our children becoming adults. Where will they live and work? There are not “just a few” children with autism becoming adults with autism. We aren’t ready. I never go to sleep at night without wondering what happens if something happens to me? What parent wants to live with the thought that I have to outlive my child? We can’t become beggars taking what we are given and hungering because it isn’t enough. We have to make this right for our kids. Don’t stop talking, don’t stop advocating. Take every opportunity you can to tell your story. And STOP fighting with each other. We are united in this. I don’t even have to know you, and I will fight for you.
I am in the comfortable stage of autism. I am somewhere between finding my way and watching new horizons unfold in front of me as they always will. I have some time before I have to face transition out of the school system, and I have to balance keeping that in the back of my mind and not allowing the black hole of worry to swallow me up. Some of the fear and stress has subsided over the years, making room for some advocacy and leadership. I will never be able to step down or walk away from this role. It should NEVER consume you as a parent. You should still have the beautiful moments.  But at those moments when you feel you can’t be a leader or fighter because you are too exhausted, remember the power in numbers, the power of one heartfelt story.  If you hit a brick wall and hear “there is nothing we can do”, climb it. Don’t accept that.
Do one thing this April month..this autism awareness month… as a call to action. Get involved. And to those of you without children with autism. You can do this on behalf of your friends, your family. Don’t just put the blue light up, and say I support autism. Autism awareness is wonderful and it’s needed, but once the face of autism is out there, the question is…what are we going to do about it?