Profound Autism

 

Long ago, most days, I wore long sleeves. I often piled makeup on to cover the black eyes or my eyes shadowed in darkness for the fear of the life my daughter was living and her future. 

One evening, my daughter raged. In all my life I had never seen my father sad, truly sad. Helpless, until that day. I drove home, waiting for my daughter to settle. In those moments, the sky clouded and the sun began to set, the bright rays faded and the beauty of the day.

Tears streamed down my face as I gripped the steering wheel with the recognition that my daughter did not have the autism I saw on TV, nor the autism that self-advocates spoke of. In fact, in those days, her words were few and far between. My daughter has what is now being dubbed "profound autism". This doesn't mean she doesn't speak but her words are infrequent and sometimes confused. She needs prompting and vigilance. Her autism needs consistent supports for life. Not just for school or behavior for life. To understand danger. To recognize that she could be hurt. To cook. To clean. To dress herself appropriately. 

Our autism is different and often not discussed by self-advocates and the recognition of what a parent in our shoes faces is sometimes hard to explain. I want to be honest and transparent but that is scary, and not only do I fear judgement and misconceptions, but I also fear self-advocates condemning me for not being grateful for my daughter.

Truth is, my daughter. Her life has given me purpose far greater than anything else in this world. Even in the good, our world often goes unnoticed and more often, unseen. 

Here is a post from me that I shared with "Her View from Home". The raw emotion is one I still face during those difficult moments when she no longer can but in those moments when she can't. I know I must.

Momma,

I see you driving down the road with tears in your eyes. I see the deer caught in the headlights look as your hands firmly grip the wheel. You sob, uncontrollably, afraid to utter the words that well within your body. I know you utter how much your child is loved, how you wouldn’t change them for the world, that you will get through it together, but I know you’d give your life in a heartbeat to have it so your child didn’t struggle with aggression.

I know the type of day you had. The one when you listened carefully as little feet hit the ground and you cautiously walked on eggshells trying to figure out just what kind of day you might have. You tried to find the perfect clothes that didn’t tug or pull on your little one’s body. You gently brushed their hair avoiding any snarls for fear that one misstep would send you into a place no parent ever imagines you could be.

I know you spent the day offering tokens for positive behaviors and lavishing your child with the love they need to know they are so precious, so wanted, so exceptional that they haven’t been put here just to change your world but to help you change the world for them and others who will walk in the same shoes.

I know it’s late in the day. You’ve iced the bruises, and yet your heart is broken.

You carefully cradle your child and secure them in their seat to drive. A drive might fix it, or at least keep your child safe and allow you to release the pain that has built up inside all day. As you head into the darkness I know you wonder if anyone gets it. I know you have been told you are “too much” by friends because well, maybe you are. Maybe the pain and suffering you live with are too much for others to bear. Not for me. I am here momma, I am here for you.

I’m driving too, my child is buckled in. I look in the rearview mirror, I see you. I see your eyes darkened with sadness, your cheeks tear-stained from not just the physical pain but the emotional pain. I know your fear. I live it, too.

Aggressive autism isn’t talked about a lot. Most parents fear coming out, afraid to be honest with others or even themselves. They fear saying it out loud because then, it’s true. They fear judgment. They don’t believe they will ever be understood and so, they live in hiding, covering up their bruises with make-up, wearing long sleeves, and perhaps going so far as to get tattoos to hide the scars, at least the physical ones that others can see.

Momma, I want you to know I see you. I am here. I am you.

Except I am tired. Tired of doing this alone. Tired of hiding. Tired of being ashamed because ashamed, I am not. My daughter is more than her aggressive autism and when the autism aggression takes hold of her, she—the child I birthed—is gone. She is morphed into a being she cannot control.

As I rock her, try to gain control of one arm or another to keep her from hurting herself or someone else, I whisper, “I am here. We will do this. Together. You are special and I will work through this by your side.” She flails and screams, unable to control herself. At that moment, I find myself in what feels like an out-of-body experience, turning my mind away from the searing pain of the bites, pinches, and hair-pulling because I know this is not my daughter. And sometimes, sometimes as quickly as it started, that autism aggression escapes her body, and she is left limp.

I cradle her in my arms. Rocking. Rocking her. Reminding her I am with her. She is mine, and she is so loved.

Momma, come out. You are not alone. You need love. Your child needs to be celebrated, to be shared, to be lavished with the same gifts of other children who don’t live with aggression because her aggression, she can’t control it. And momma, there is nothing to be ashamed of. You show up. Daily. You walk beside your child. You show them love and you, my friend, are their greatest advocate and there is no reason to hide any of that.