I know, intellectually, that there is no cure for autism. And yet, I hope. Every day that my son wakes up, I hope that he will surprise me, look in my eyes and say, “Good morning mommy!” Every morning that it does not happen, I feel the tiniest twinge of disappointment. With that over, I take a deep breath, and our day begins.
I help him get dressed. When I brush his teeth and comb his hair, I hope he will take over these tasks on his own. Even more so, I hope he won’t fight me at every turn. And yet, every morning is a struggle. Some mornings more so than others.
We get in the car and ride to school. I leave him with his tutor and hope for a good day. Upon my return, I ask how he did. He has moments of concentration, but mostly? He is not focused and not responsive. There is that feeling again – that twinge of disappointment. It hits me harder when I hear there is no progress at school.
And in every corner of the internet, there are hucksters selling ways to improve my son’s life: his focus; his ability to meet the things neurotypical kids take for granted every single day. Their normal conversation. The swinging, cartwheeling, throwing and catching they are able to do without a thought or care. Things my son cannot accomplish without intense concentration and effort. There are promises that if I take this, or refrain from that, or use this device or that, my son will improve. And none of it is real. But I want to believe. And so, before I turn away, my finger does not click the window closed right away. But when I do, there it is again – that twinge of disappointment.
There are findings and fear. So many fears that they physically wear me down at times. I am so tired, literally and figuratively, of thinking of them in the middle of the night when they startle me awake.
There are threats to take away the only things that work. The school setting. The behavioral therapy. Threats to transition him away from the things he is just getting used to that make the very strange world around him a little less scary.
There are fears of neglect in the hands of others. Fears of future abuse, verbal or physical, based on news stories involving ASD children. Stories that don’t surprise me, yet at the same time, always shock me. There are fears based on his inability to understand the danger of running through a parking lot, touching a hot stove, or putting his fingers in the door hinge. Fears that he will slip and fall due to clumsiness and inability to know where his body is in space. Fears that he may hurt himself in the bath or hit his head.
As I sit in the waiting room of his speech or occupational therapists, I wonder what he takes away from each session. I wonder if any of it sticks. Or if he grows and becomes stronger because of his own will, at his own rate, in his own mind and none of the speech or OT sessions make a difference.
He comes out. He looks cock-eyed at the ceiling and runs back and forth across the waiting room as I get a report on his session. Most of the time, I don’t hear half of what the therapist tells me because he is touching what he shouldn’t, climbing on a chair, playing with blinds or running and falling. And I leave with that twinge of disappointment.
Almost everywhere I go and everything I do is for my son. I spend hours waiting, in meetings, researching, consulting, shopping and living to make his life better. And every day, at least 10 times a day, I feel the twinge. I shrug it off. I bury it inside and smile and laugh and play with him, oblivious on the outside.
But inside, it hurts.
Love is like that. I would walk across burning coals for this boy just to hear him say “I love you mommy.” I hear it more often now, and sometimes, when I least expect it, I get eye contact too. And therein lies my joy.
Sometimes, I will feel a tiny hand reach out for mine. And when my tears begin to fall because of all the twinges I’ve bundled up inside, that little hand will bring me a tissue and say, “Mommy, be happy.”
And I will.