There are the marshmallows on the floor. Empty packages of Ramen noodles. Chapsticks, sucked out through the top of the tube, the little white cap lost, Lord only knows where.
There is the night roaming that brings anxiety to every member of our house. Haunting memories of the time my son dumped a mason jar of thumbtacks down the heating vent as we all slept soundly in our beds. The three times in the last year, that he surreptitiously poured an entire gallon of chocolate milk directly into the garbage can. It is impossible, simply impossible, to understand the urges of a 15 year old boy who is convinced he must remove the heads of all the tiny lego men and throw them, quickly, immediately out the window and onto the roof.
For our family, these behaviors are unexplainable, embarrassing—and frustrating—beyond any belief. For my son with autism, this is just Tuesday, because it is loud or he didn’t get to take the bus home from school.
And so we all live a little apart. Out in the open, but without the surface of normal to carry us.
There is the feeling that no one sees us at all. There is the need to explain when they do.
There is the guilt in talking and writing about the real hardships of raising a child with autism, one who can never be, despite what you may have heard, “cured.”
First, there was the post traumatic stress of a difficult birth and then the reeling months of worry. The fear and dread muddling the first three years of life, where my son did not speak, did not smile, did not laugh, did not understand.
Later, there was the confusing relief of an autism diagnosis in early 2006—-when the entire country was pointing fingers and hurdling blame, when just the mere mention of my son’s disability would invoke probing questions and challenge personal belief systems. Suddenly strangers in the checkout line demanded invasively, “do you think it was the shots?” As though I, a 28 year old mother, had some answer to this growing epidemic when all the doctors did not. And what could the answers do for me, anyway, besides make a trail back through decisions that every time, I would have made again? They could not have known the tears that followed every one of those conversations. As I went home and crouched outside my son’s bedroom door in the evening, where I would return him to his bed 15 times before finally I put up the gate and slumped against it. Exhausted and pregnant again, but afraid to leave my son alone until he was sleeping fitfully, in his little bed on the other side.
There is the time when I eventually stopped wondering why. When I mostly did not think about the what or the who anymore, but rather trembled in the permanence of it all. Because I was not a special parent who had been given a special child, because I was just a mother who never expected to raise a baby who would never call me mom.
There was a terrifying freedom in accepting that my child would not fold into any ideal image of adolescence, nor adulthood—not anything. That my life, his life, were forever altered in a way that people who have children who speak, who drive cars, who move out of the house, can never really understand.
When you let go of what you imagined, you can find peace in what is real.
There is the trouble that even when life is hard, it is sometimes so strange and funny there is nothing else to do but sit down and laugh. In the middle of the hallway, on the top step of the stairs. In the cereal aisle at the grocery store. Because my son had joyfully lined up Kellogg’s boxes on the supermarket floor as I looked down at my grocery list. Because we had to wheel our cart down the same route through every aisle. Because people were staring. And laughing feels better than crying anyway, even when the ragged border between the two emotions feels razor thin.
But after the relief and the laughter, in the void, there forms a burning thread of guilt again—-flattening out my senses until nothing seems real and what is real seems impossible.
Except it happened, despite the odds listed in my copy of What To Expect When You’re Expecting, and I had the bruises up my shin and across my heart to prove it.
There is loneliness that came with not being able to leave my house, not being invited to parties, not making mom friends, not joining other families on camping trips or sandy days at the beach. There is the memory of one whole summer when my son suddenly refused to be outside at all, not even to walk to the car. That humid July when I carried my 50 pound four year old everywhere, as he screamed in helplessness against my pregnant belly, while strangers stared, unhelping but not unkind, maybe a little frightened, all around me.
There is the inability to say out loud the things that are scary.
There is true joy in acknowledging that your child’s successes might be different than you pictured they would be. That they are still meaningful and true. Not less than, only different.
There are moments of unbounded happiness—-when he is happy, when he is growing, when I catch a breathtaking glimpse of him strong and healthy, alive in doing the things he loves.
There is marking progress on a smaller level, the measure of the distance in where you are now from where you were five years, one year, a month ago.
It’s hard-fought wins. It’s letting go. It’s freeing yourself from the bindings of cures and blame. It’s sitting in stillness for the words to come.
I waited 15 years for my child to tell me his own name.
Give space in your life to those who are living with autism, not out of awareness or sadness, but out of empathy and acceptance.
Acknowledge that for every story of success in “overcoming” autism there are a hundred stories of “just getting by.” For every child with autism who grows up to defy their diagnosis, there are a hundred stories of the children who settle in—-because that is just how their brain works, because that is their normal and because truly, they find no reason to live or be anything other than they are. This does not have to be sad. My son is not sad.
Remember them when they are no longer children. Listen to adults who have autism and respect their struggles and their strengths. Be kind to the parents who live with them as they each figure out how to navigate life on their own terms. Hold people with autism close to you and honor the hardships they face as they exist in a society that does not always honor people who are different.
But don’t ask people with autism to be something they can not be. If we stopped making “normal” a hard requisite for love and acceptance, maybe we could—I could—talk about the hard parts of autism without feeling shame or fear. Maybe you’d understand it better. Maybe it would be less lonely, for him and for me.
I struggle with letting my son be who he is. But I love him enough not to ask him to be someone he isn’t.
And if you listen, if you ask me, that is a love I want to tell you about, for all the days of my life.
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