I Am in Here (17 page)

I believe that Elizabeth's voice—her speaking voice—will come. I believe that God is healing her. It remains a mystery to me why there is so much suffering in the world and why, despite our prayers, Elizabeth continues to drink from that cup.

Learning Each Other

Quiet walks with Mom

  
God Loves Us All
  

It does not matter who you are

It does not matter if you stray far

God is always there for you

In spite of what you may do

His love is stronger than anyone can know

You just have to know to go

to God.

(age 9)

I wrote this poem because I want people to know the power of faith. No matter what you face in your life—sickness, hunger, poverty, or just not having a relationship with God—he is always there for anyone who calls on him
.

H
ow can we know God?

It seems like such a simple question, but it usually takes a lifetime to answer, if we answer it at all. It goes beyond the basic question of deciding whether or not God exists. While faith is sometimes seen as the end of a journey, in reality, it's only the beginning. Those of us who have experienced enough of God's presence to be convinced of God's existence are confronted daily with a dizzying array of questions that never confront the nonbeliever: What does it mean to know God? How do I love somebody I can't even see? How can I experience God's presence in the midst of suffering?

While the answers to these questions are far beyond the scope of this book, one question has particular resonance with the autism struggle: How can we know God?

While this question may seem unconnected to autism, I believe it is a vital key to understanding our children. In his book
Living Jesus: Learning the Heart of the Gospel
, Luke Timothy Johnson argues that we cannot know another person in the same way that we know the state capitals or how to ride a bike. People aren't facts or static objects that can be fully mastered. Instead, we are constantly changing and growing beings who must be continually learned, with respect and attentiveness. We are mysteries to be experienced, not problems to be solved. Elizabeth's best teachers view her in this way. Because our children are so
different, this learning takes extra effort. But even the smallest learning can bring great joy.

If this is true with regard to relatively simple human beings, Johnson observes, how much more so for the infinite God, whose presence surrounds us and yet can seem so impenetrable and unfathomable at times? How much greater must our attentiveness be with God, whom we often experience indirectly and whose ways are a mystery to us?

This orientation has helped me be more at peace with the mysteries in life, especially with autism. Our children's interior worlds often remain a mystery. Yet this does not condemn us to being strangers, forever staring at each other across a yawning and unbridgeable chasm of silence. Rather, it simply means that we must use the same degree of care to learn our children that we use in our efforts to learn God.

Johnson states that the path of learning another person is founded on trust and respect. Without them, the person being learned is reduced to an object. Built on this foundation is attentiveness. He writes:

Attentiveness suggests alertness, yes, but also receptivity. It is a “leaning toward” the other. Attentiveness is present when we truly listen to the other person, when we contemplate the other person. It does not assume that the other is already known, has been “figured out.” Instead, it assumes that the other is always capable of change and surprise.
[1]

What a beautiful notion of love and friendship and parenting and marriage: to lean toward the beloved and listen for a new surprise. If we are not vigilant, the world will conveniently put a label on our children and stop listening to them. I, like so
many other autism moms, know that they are full of surprises. Elizabeth has an opinion about nearly everything, but we need to draw out her viewpoint. She doesn't volunteer it. We must lean in and listen.

Johnson goes on to talk about patience as a necessary component of personal learning and how patience goes hand in hand with suffering. For any parent, patience is a virtue. For autism parents, it is a necessity. Our children do things for a reason, but it takes patience to learn the reason. Despite the exhaustion and frustration we feel from hearing the same phrase over and over again or seeing the same spinning or twirling action over and over, there is a reason, and we must try to learn our children if we are to help them.

A handful of authors with autism have helped autism parents get an inside look at their children. Temple Grandin's
Thinking in Pictures
and
The Way I See It
describe her need for deep pressure from a self-designed squeeze machine and how noncotton clothing was horribly itchy. In his book
The Mind Tree
, Soma's son, Tito Mukhopadhyay, wrote about how he could only feel his body in space by spinning it in circles.

In learning other people, including our difficult-to-learn children, with trust, respect, attentiveness, patience, and suffering, we also have a process to learn God. The spark of the divine in each of us brings us into the mystery of the divine. Elizabeth has always had a keen sense of God within:

  
God's Love
  

There is a light at my inside.

Sin is not in me.

To see God in a rose.

I am a believer. God lives in me. I am a Christian. I know not to sin. God is the maker of all things. That means they are beautiful
.

Spirituality is a deep current in the autism community. In
Autism and the God Connection
, William Stillman, himself on the autism spectrum, chronicles the spiritual side of numerous children and adults with autism. He found their spiritual sensitivity extended to the physical world around them. People with autism tend to have acute senses of smell, hearing, touch, and sight. A slight sound or faint light can immediately catch their attention.

One of my favorite stories is about a young man named Josh who is tall and thin with red-gold hair and refined features. Josh is nonverbal and has lived in a group home most of his life. When he turned twenty-one, he was no longer eligible for services and needed to move to a new group home. Josh was fine with the move, but after about a month, he was waking up in the middle of the night screaming in fear.

The beauty of this story is what the staff didn't do. They didn't write it off as part of his autism and medicate or restrain him. They believed, as I passionately do, that people with autism do things for a reason. They brought in an expert, Stillman, to try to figure out why Josh was in a constant panic.

Josh typed out for him “ghost” and then went on to describe in detail three figures that came to his room in the night. One was named Edward and had a beard, one was Sarah, and one named Samuel was twenty-one years old. Josh indicated that they were coming from a small, 1800s-era cemetery on an adjacent property. Although Josh was always with his caretakers at his group home
and had never visited the cemetery, the names matched three of the headstones, including Samuel, who died at age twenty-one. Stillman concluded that Josh's extreme sensitivity allowed him to feel the energy of these spirits.
[2]

I believe that Elizabeth has some of the same extreme sensitivity to sense God in the world around her. We have tried to encourage her spiritual development by taking her to church and reading a wide variety of books to her, but her spirituality goes beyond this. Elizabeth discusses the difficulty of learning God with earthly distractions all around us:

Elizabeth is right. In many ways, God
is
too much. In his book
The Silence of God
, James Carse writes about how we ask God to speak to us directly, but if that were to happen, we would be overcome by the sheer power of the word. We see this in the book of Exodus when Moses asks to see God's glory. God refuses, knowing it would be fatal for Moses. Instead, God puts Moses in the cleft of a rock and covers him with a divine hand. When God passes by, Moses can catch a small glimpse of God's glory without being overcome by it.

The psalmist wrote that God understands our weakness and remembers we are only dust. I believe that in compassion for our frailty, God has surrounded us with signs of divine
loving-kindness that are constant reminders of a holy presence strong enough to sustain us yet gentle enough not to overwhelm us. In a world of pressing demands and constant distractions, however, it is easy to overlook these quiet love notes from God.

The spiritual life is a journey of training ourselves to recognize God's presence as it permeates our world and becomes the background music of our lives. We need to learn to dance to the constant rhythm of God's love, in which we live and move and have our being. I believe Elizabeth is moving to this rhythm when she speaks about her love of music and its vibrations.

  
Sounds
  

I am always moving

To the beat of the sounds

That are all around.

Not everyone can hear

What seems so near

To me.

I am always moving

To the beat

That to me is neat.

I feel like my sense of hearing is much more sensitive than most other people's. I hear every hum, squeal, and squeak of a place or thing. Sometimes it is hard to sort all of it out
.

As with all of us who are learning God, Elizabeth's understanding has evolved over time. When she was eight years old, she had this view of God:

After we finish living we go to God; otherwise it is not easy to go to God. But I don't like God to be so scary that he will get mad if we are wrong, and I think I try to love him but I can't because I can't actually love anyone who can send people to hell. But I am trying hard to love him so that I don't go to hell. But I am not dying now, for I am still little
.

As an adolescent, her experience of God has grown more complex. Our relationships with God
are
personal and unique for each of us, just as our relationship with each of our children is personal and unique. I want to probe Elizabeth's spiritual side because she teaches me things when I listen closely to her words. Sometimes she rightfully tells me to leave her be:

The agonizing irony of Elizabeth's condition in the early years, before she could type on a letterboard, is that for all the noise and distraction she created, she was unable to communicate her simplest wants and needs to us and to express to us what was happening in her mind. We were separated by what seemed like
a deafening silence. In the words of novelist Michael O'Brien, our silences weren't speaking to each other.

What I needed to learn was that although silence could be a burden, it could also be an invaluable gift in learning my daughter. In a world that screams for our attention all day long, silence is a rarity. We talk more than we listen; in our noisy, distraction-driven culture, silence can be downright frightening. When we are face-to-face with the silence of another person, our thoughts often turn dark: “Are you angry with me? Disappointed? Don't you have anything to say to me?”