Parenting a Child with Autism
“You don’t have to see where you’re going, you don’t have to see your destination or everything you will pass along the way. You just have to see two or three feet ahead of you.”
—Anne Lamott, Bird by Bird: Some Instructions on Writing and Life
What do we want for our children? There is no one answer for all of us, and our individual answers likely change as we watch a child change and grow into a person with particular wants and needs.
But at a very basic level, I believe there are some things most of us would agree we want for our children—love and happiness, perhaps, are a good place to start. Sure, we know that no life escapes heartbreak or sorrow, but our hope is that the scales will tip in the direction of love and happiness.
So what happens when, before you’ve fully recovered from the sleepless nights of infancy and started complaining about “the terrible twos,” you get a diagnosis that calls into question your child’s ability to love or feel joy? What do you want for a child whose feelings you do not see or comprehend? How do you want for this child, who “experts” say cannot connect with others? How do you hope for this child?
There are likely a lot of really smart people who know more about autism than you, but there is no one who knows more about your child than you (and your child)!
In the documentary film, Loving Lampposts, autistic performance artist Johnny Seitz tells parents, “You haven’t got a big enough imagination for what your child could become.” Those really smart people have stuff to teach you about autism. But if what you’re looking for is a new way to imagine your child’s happiness, your child’s ability to love and feel joy, your expert is likely three feet in front of you.
Personal Story
It was a particularly bad day. An end-of-day meeting at work ran late, and traffic was awful (nothing new there). I was late getting home from work (again), and I knew the babysitter would not be happy. I had no idea what I would feed my 3-year-old twins for dinner. The “power hour” was going to be unpleasant at best.
I walked into the kitchen, and my heart sank. Every dish and utensil we owned (or so it seemed) was dirty and in the sink or on the counter. Yup, the babysitter was not pleased with me. One of my little boys seemed glad to see me, and I scooped him up for a quick squeeze. He squeezed back. Nice.
My other son was waving his sippy cup. Without thinking, I asked if he wanted juice or milk. Simple question. “Juice or milk, Honey?”
Not so simple. Adam has autism, and choices have always been difficult for him. Painful, really. As soon as I asked the question, I realized my mistake and knew I was in trouble.
Adam (only slightly verbal at the time) said, “Juice.” Great. I went to the fridge. But as soon as he saw the bottle, he started to scream. “MILK, MILK!” I gave it a shot, and reached for the milk. No such luck. “JUICE JUICE JUICE JUICE!” And so it went.
I tried asking again, in all sorts of ways: pulling out both bottles, pouring a little of both in two cups, you name it (I tried it). There was no consoling my son. He was shaking, crying, and banging his head on the carpeted floor (he wasn’t hurting himself, but it was disturbing to watch). His brother and I just looked on, helplessly.
I was lost. I remember thinking that I would never be able to reach him. I thought, “If I can’t help him choose a drink, how will I ever help him with the bigger stuff?” I was overwhelmed in the moment and looking at the long arc of his life. What I saw was nothing but my own helplessness and his tremendous unhappiness.
I didn’t know what to do, so I got down on the floor with Adam and started banging my head gently, too. He stopped and, for the first time I could remember, looked at me. Really looked at me. In the eye. We both lay there for a minute or two, worn out, I think, side by side, our faces close together. I didn’t say a word. When I got up, I washed his face and gave him a cup of cool water and started dinner.
That moment on the floor did not mark the end of my mistakes with Adam, but it did mark the beginning of my relationship with him.
A Prayer
Spirit of Love, may my child know the love and care of others. Help me understand that his/her family members are not the only ones capable of loving him/her. Guide me in my efforts to re-imagine my child’s own capacity for love and joy so that I may hope for and participate in their fulfillment. Amen.
A Spiritual Practice
The spiritual practice that was the biggest blessing for me when I was most challenged as a parent was the practice of walking. I didn’t recognize as “spiritual,” but it nourished and recharged me as nothing else did. There were times when I was able to get a babysitter and walk alone, and this was a tremendous gift. But even when I couldn’t find someone to watch my preschool-aged children, I could push them in a stroller and let my thoughts go where they needed to, to places that didn’t involve my fears and anxieties. I still walk as a spiritual practice: it’s good for my breathing, my body, and my perspective (I spend too much time looking at walls instead of trees)!
May you know the hope that allows you to imagine something on the horizon that you are willing to move toward. May you know the hope that makes you willing to take a chance on the future and get from today to tomorrow. Amen.
- Thinking too Hard - August 23, 2012
- Transformation Through Autism - April 27, 2012
- Parenting a Child with Autism - November 11, 2011
