Accepting God's Gift
By Heidi Schmidt - Winter 1995/96
"Make me a space probe," my four -year-old son demands.
"Not now, Nathan. Matthew's sick, and I have to help him." I start for Matthew's bedroom. Nathan darts in from for me; then falls lengthwise across my path clutching his blankey.
" A space probe is not difficult to make. Here is a list of things you will need: some construction paper, scissors, a pencil, a plastic yogurt cup....."
"Nathan," I interrupt his monologue while stepping over him. I have to take care of Matthew. Why don't you draw a space probe on the computer?"
"It has to have a magnetometer boom," he replies. His tone is neutral; his face registers no emotion, his mouth twisted so that he can stroke his bottom lip with his middle finger. Upright again, he rocks from foot to foot, twiddles his ear, rolls his head, then mimes a faint while clutching his blankey and sucking his thumb.
"Maybe later, Nathan," I suggest while tending to his brother. I return to the family room after several minutes. Strewn newspaper covers the carpet. The couch cushions are on the floor. The lunch dishes have been cleared and are now in a scatter pattern on the floor around the table.
"Nathan!" I yell.
"Sorry, sorry, sorry," he chants, rocking back and forth, his hands clapped over his ears.
I kneel down beside him. "Nathan, why do you do these things?" I ask sadly.
He taps his wrinkled brow----an excellent parody of Winnie The Pooh---then replies matter -of-factly, "God made me."
I can't argue his logic. For God has indeed made him the unique little boy he is, a high-functioning autistic savant.
We chose the name, "Nathan," for our first child because of its meaning, "gift of God." Yet, many times after we left the hospital with a screaming infant who continued to scream his way throughout the neonatal period, I would question that description.
He would not breast feed. He squirmed to get out of my arms. He could not be consoled in any way. His only period of contentment was when he was in a swung, at just the right rate, in his baby swing.
Over the next three years, I struggled to come to terms with this unusual child God had entrusted to me and my husband. In vain I waited for him to make eye contact, snuggle against me, say "mama." We chuckled at his unusual preferences: spinning the wheels of his stroller, making tops out of puzzle pieces, putting our hands on what he wanted, using his own nonsense words instead of the language we tried to teach him.
We had our euphemisms: he's intense, he's shy, unusual, special, insecure, super intelligent, over-stimulated. But deep inside, I feared that something was wrong with my child. The fear escalated when horrible screaming tantrums overtook him at any change: my driving instead of my husband; entering the church, supermarket, or bank; a stranger touching him.
Being a registered nurse, I had a working knowledge of normal development and developmental disorders. The word "autism" often crossed my mind. but autistic children are withdrawn, they spin plates, bang their heads, I would reassure myself. My son doesn't do that. I'll prove to myself he's not autistic. So I went to the library, plugged "autism" into its medical computer, then nearly wept as I read almost exact descriptions of my son's behavior.
Five months later, Nathan's official diagnosis was made at the Children's Hospital of Denver: Autism, pervasive developmental disorder.
I felt overwhelmed, scared, burdened, unsure of how to rear this child. I read everything I could get my hands upon about autism, special education, speech therapy, sensory integration, behavior modification. If there was a way to "normalize" my son, I was determined to find it.
My son did make progress. He began to speak. He successfully completed a behavior modification toilet training program. He now made eye contact and consented to being held. Yet every victory was bittersweet. He did nothing spontaneously. Every step toward normalcy had been painstakingly planned, then taught to him by us.
I was consumed with the realization that it would never be enough. Yes, he was high-functioning for an autistic. But compared to his younger brother, he had great glaring lacks. "Near normal" was not "normal."
Emotionally and spiritually I was lower than I had ever been. I felt abandoned by God. I believed with all my heart that God would heal my son, that God would provide resources that would help us to cope; but it wasn't happening. Sadly, the response of the church people we knew seemed to confirm my feelings. No one wanted to acknowledge that God would allow an unresolved problem to exist.
About this time, I read an interview of a young woman with Down syndrome. She said that she wished that God would heal her because Down syndrome made her life difficult. yet because God didn't heal her, she accepted that having Down syndrome was the way in which God had chosen for her to serve Him.
I was humbled by her words. I began to question how God looked at my son's condition. Did He see him as handicapped? Did God see my son as abnormal and in need of curing? I was reminded of my son's name "Nathan, gift of God." Was my son any less a gift of God because he had autism? Could it be that Nathan was exactly the way God wanted him to be?
I thought of Paul's words in Romans 9:20ff: "Shall the thing formed say to him that formed it, 'Why hast thou made me thus?' Hath not the potter power over the clay, of the same lump to make one vessel unto honor, and another unto dishonor?"
I remembered Jesus' response to his disciples' question about a blind man, "'Who did sin, this man, or his parents, that he was born blind?' Jesus answered, 'Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him'" (John 9:2b - 3)
I thought of God's answer to Paul's request that his thorn in the flesh might depart; "My grace is sufficient for thee: for my strength is made perfect in weakness"
(2 Corinthians 12:9).
Through these examples, I saw that God allows many of us to serve in situations that we would like Him to change. Could it be, I asked myself, that living with autism is the way that God has chosen for my son and my family to serve Him? I began to pray, not for a cure or for help, but for grace to accept the life God had chosen for my son and my family.
Rather than hold out for a cure and the day we could all live "normal" lives, we reworked our present lifestyle. Instead of seeking to make Nathan "normal," we looked for ways to help Nathan cope as an autistic living in a non-autistic world. Freed from the battle for "normalcy," we were able to discern patterns in what had previously seemed random, destructive behavior.
Children with autism have impairments in communication and social interaction. Although Nathan can repeat verbatim huge amounts of technical information about steam engines or outer space, he struggles to answer simple questions (What is your name? How old are you?) or to respond to simple directions (Stand over there. Put this toy on the shelf) or to make a simple request.
I learned that his messing and dumping are how he expresses himself without words. Instead of saying "I want applesauce," he will chant, rock, stroke his tongue with his fingers. When this fails to procure what he wants, he will pull off couch cushions, overturn baskets and boxes, and push things off the table.
By asking him, "What do you want?", when he first begins his repertoire, I can usually prevent the escalation into messing.
Sometimes saying, "use your words," is enough to prompt him to give language a try. Patience is still needed because it may take him as long as three or four minutes to get out the words, and then the words he speaks are not necessarily what he means.
Temple Grandin, a professor at the University of Colorado, Bouilder, who has autism, has written that she think in pictures, not in words. When speaking, she has to "translate" each picture into words that she hopes the listener will understand.
I found this to be true with Nathan. I learned to choose concrete words that have limited meanings. Instead of asking, "what do you want to eat?", which forces him to translate many pictures, I ask, "Do you want applesauce?". If he says, "no," I move on the next specific food. I apply the same principles to choices for clothing, toys, and activities.
I also found that abstract concepts, such as time, are extremely difficult for him to grasp. He can recite the names of the months and days in order. he can also tell the date of every family member's birthday and each holiday. He even knows each week without being told what day it is when the trash truck and street sweeper come. But he cannot grasp the concept of "we'll go to the library on Tuesday" or "we'll play animal dominos after supper." He will repeatedly ask to do the activity in spite of our answers.
So, we reduce his frustration and ours by not telling him what will happen until we're ready to do it. For events, like Christmas, for which he will need to wait, we do count downs---capitalizing on his remarkable skill to keep track of the passing number of days in his head.
Nathan's usual body language and gestures also began to make sense when I connected their use to his being stressed socially. Inferring social expectations is difficult for autistic children.
This may be related to their difficulty in organizing, ordering, and prioritizing sensory information. Unlike a person without autism, Nathan does not know which stimulus to focus on: the person's voice, the person's gestures, the objects around the person, the buzzing of the overhead lights, etc. This added to his communication difficulties make social situations a mine field of sensory overload.
So he comforts himself by blocking the situation by creating a diversion chanting a nonsense phrase, or engaging in what is commonly called "self-stimulation."
Rather than try to extinguish his unusual comfort mechanisms, I try to help him choose ones that are socially appropriate, such as stroking his blankey instead of banging his toy loudly on the shopping cart.
When attempting a new situation, we try to provide a way he can be sheltered form being over-stimulated. As smaller child, his stroller did well. He now has a completely enclosed jogger. For places where the jogger is not feasible, we create a place under chairs in libraries and waiting rooms or buried under jackets in a shopping cart or on the floor. Although it looks odd to others, this has allowed us to take him to more places than his autism would otherwise allow.
We also use his obsessive interest in trains, outer space, numbers, and mechanical things to distract him form being overwhelmed. By getting him focused on the sprinklers and hoses, we can enjoy a zoo outing. By pointing out speed limit signs, construction equipment, and trucks, we console him on long car rides.
We also are teaching him to use facial expressions that are congruent to his mood to express his emotions rather than his own peculiar body movement. We do this by pointing out other people's and character's expressions to books, videos, and life. He now smiles like Thomas the Tank, concentrates like Winne the Pooh, raises his eyebrows in surprise like Steve Urkel of Family matters, and grimaces in anger like Bert of Sesame Street. These facial mugs communicate more effectively than couch cushion dumping. However, something does get lost in the translation, however, when he is angry at his brother for, say, taking a toy, when he says matter-of-factly, "See how my eyebrows go together; this is my angry face."
Coming to terms with Nathan's intense need for sameness, and his rules and rituals which guard it, was difficult for me until I related it to my own fear of change and reluctance to try new things. How often do we say to ourselves. "better safe and sorry" when we have to choose something unknown. For Nathan who cannot interpret sensory information into meaningful data about the world and can only know what he has been previously taught, the world is a very scary, unpredictable place. So he increases his security by ensuring that some things will remain the same and by making up rules about how things should happen.
We try to help him by explaining why the unpreventable changes happen, such as why it's dark when Daddy gets home in the winter and still light out in the summer. Nathan has been able to overcome come fears simply by learning how things work. for instance, any insect in or near the house terrified him to the point of his not wanting to go to that area for days. By reading him books from the library about insects, he was able to relate the buzzing, flashing, moving phenomena to what he had learned and was no longer frightened.
Sometimes, we cannot discern what it is that frightens him. In those cases, we avoid the activity if we can and do our best to comfort him if we cannot. Giving up spontaneity has been very difficult; but it's necessary to give him what is the right of every child, a home environment where his needs for security, love, and nurturing are met.
Living with autism has been the hardest thing I have ever attempted. There are days when I tire of jumping through all the hoops that it entails. Yet by embracing autism as the life God has chosen for me, God has matured my faith in ways I would never have experienced as I reach deep inside myself for undiscovered talents, new insights, more patience, and unstinting love to bond with my son.
Nathan jumps around me chanting instructions in between unrelated questions and nonsense songs while I fashion that space probe with its magnetometer boom out of yogurt cups and construction paper. Knowing that I'm doing what God wants me to do' I offer a prayer of thanks for this very unique "gift of God."