I put my son to bed and carefully inch “closer” to him. He wiggles and squirms as he always does and I smile at him. I tuck my chin downward to protect my teeth. It is a relatively smooth goodnight and when he tries to snuggle closer his busy body hits my chin and mouth. I close my eyes and swallow the yelp and pain of that blow. I wipe a tear, kiss his soft, sweet hair and remember.
I remember how he used to throw toys. How he hit–the daily data, 15+ times a day. I remember his evaluation, I remember my daughter’s evaluation. I remember the stripping of beds, the cracked kitchen tiles, I remember the fighting for my children. These are not easy things to remember. The fight to be heard and believed, and I remember the blame and doubt. I remember the sadness of seeing my children struggle. I know in my heart the familiar wish for things to be easy for them. Things are harder for us and I accept that.
I switch off his nightlight and participate in the twenty second skit we perform every night: “I caught it,” He screams anxiously. He catches my kiss and I try to do it just right so he won’t get stuck on it: “You caught it, buddy. I love you.”
The calluses between our fingers. I look down at my hands and realize how thick my skin has become. I realize that I accept autism and I accept the fight. I no longer doubt myself. I am stronger than I have ever been.
I see my daughter and son for who they are. They are not the problem, the problem is how the world reacts to them. My kids are working hard to fit into our busy world with their disability. My children are asked to change for us and what are we doing to change for them? When do we stop and listen to them?
The calluses between my fingers, they might be thinner if I lived in a more accepting and educated world. My pediatrician would not have doubted the clueless twenty-six year old me and diverted me from getting my child the help she needed. I would have received help when I needed it and I would have been encouraged and complimented on this hard work. In a world that is accepting of this invisible disability I would not have to prove or explain my five year old, instead I am directed toward the resources that my children need. In a world that is more understanding I would not be told to punish my children for their inability to control their little bodies. I would be encouraged to approach their most difficult moments with love and understanding. In a world that is more understanding you would smile at my children and say, Hello.
I lean close to kiss my daughter goodnight. She is bouncing and screeching. “Calm body,” I whisper to her. “Calm body, Willow” I say this as I squeeze her arms and settle her down. I assess her mood and speech. Tonight she will go to sleep easily, perhaps she will sleep through the night and I can rest.
In a more accepting world moms like me they would be encouraged and supported. They would not feel the need to apologize. Moms like me would be praised for the hard work and the pain they carry because for mom’s like us raising our children is different and it is hard.
The calluses between my fingers are thick.
I know my boy and I know my girl. I wish the world would help me in knowing them too.