by Kathleen Deyer Bolduc, author of Autism and Alleluias
For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall understand fully, even as I have been fully understood. (1 Corinthians 13:12)
It is Communion Sunday. Joel, eleven, sits between his father, Wally, and me. As usual, we sit in the front pew so that Joel can’t kick the pews in front of us or reach forward and grab someone’s hair. By trial and error we have found that with Dad to his right, Mom to his left, and empty space to the front, Joel can usually sit through half of the worship service.
We have temporarily given up on Sunday school. Sunday school is just too difficult—too much like “real” school, a place where “keeping it together” is a constant struggle. Because Joel loves music and is enthralled by the choir, the beginning of the service is something he looks forward to.
Often he stands up, pretend baton in hand, and imitates the choir director. During hymns he loves to sing along, usually (thank God) in tune, with a few words right, and always with a loud amen! at the end, generally a few beats behind the rest of the congregation.
During the boring parts of the service (any part without music is boring as far as Joel is concerned), he twists and turns in the pew, stares at the people behind us, waves at the pastor, swings his feet, claps his hands or stomps his feet (he usually saves these last two for times of silent prayer), and at least once during every service says in a loud voice, “I have to go to the bathroom!” Worshiping with Joel is an interesting experience. It’s not unlike sitting on the edge of your seat during an action movie, when you’re not quite sure what’s going to happen next—you only know something is going to happen. It’s difficult to develop a prayerful
attitude in those circumstances.
On the first Sunday of the month, Communion is served. We pass the bread along the pews, administering it to one another, saying, “This is the body of Jesus, broken for you.” Likewise, we pass the wine to one another with the words, “This is Jesus’ blood, shed that you might live.” Wally and I allow Joel to take a piece of bread, reciting the familiar words to which he never seems to pay attention. He chews the bread, picking at the sticky stuff left in his teeth with his fingers, but far prefers the wine, which in our church is really grape juice. Again, we recite the words to him. “Joel, this is Jesus’ blood, shed for you.” He slurps down the juice and sticks his tongue into the cup, determined to get every last drop. His father and I close our eyes briefly to pray our own
private prayers of thanksgiving for this unbelievable gift of grace. Joel cranes his neck to watch as everyone else is served, and wiggles through the remaining quiet time.
This particular Sunday, the pastor raises the plate high in the air and proclaims, “This is the body of Christ, broken for you.” Then he raises the cup, saying, “And this is the blood of Christ, poured out that you might live.” Joel pulls on my sleeve. I look down to see him grinning, his face lit up as if from within. He stands up tall, and taps himself on his chest. “For me! For me!” he cries joyfully. He turns around to the people behind us. “For me!” he repeats. “For me!”
Ordinary time stops. All that exists in this moment is the radiant look of understanding on Joel’s face. Joel knows that God loves him. On a spiritual level he knows that God has sent Jesus for him. My body remains in the front pew of College Hill Presbyterian Church, but my spirit stands in the sacred presence of God. All the accumulated Sunday hours of embarrassment, impatience, frustration, and yearning for wholeness as the world knows wholeness slough away as I watch the love of God glimmer like gold in the face of my son.
Lord, for a moment today, the mirror of existence, like a mirror wiped clear of steam, brightened and cleared, and I understood clearly. Joel, despite his disabilities, is spiritually whole. I glimpsed a realm of existence where schedules and priorities and developmental timetables do not exist. A realm where it is enough simply “to be.” I praise you, Lord, for letting my son teach me this truth. Amen.
[From Autism and Alleluias, Judson
Fuel for the Journey
Parenting may be one of the most rewarding jobs on earth, but it is also one of the most difficult. Parenting a child with autism is especially demanding, requiring surpluses of energy, patience and perseverance beyond, at times, the humanly possible. As Joel’s mom, I need God’s supernatural power to summon up that kind of energy on a daily basis. I’ve come up with what I call “Fuel for the Journey”—concrete ways to make sure my gas tank is filled, every day, so that I can go the extra mile it takes to be the best mom possible for Joel.
Read the Scriptures on a daily basis. Soak in how wide and high and deep God’s love is for you and for your child.
Ask yourself what feeds your spirit—reading an inspirational book? Listening to Christian or classical music? Worship? Creating art? Writing? Do it!
Schedule time for yourself each week—a cup of coffee with a friend, a movie, a trip to the library by yourself, time at the gym—whatever energizes you.
Schedule get-away time for you and your spouse on a regular basis. Find a friend or family member to trade childcare if necessary. Re-fuel your marriage!
Pamper yourself for at least five minutes every day—lock the bathroom door and smooth on your favorite lotion, listen to your favorite song on your iPod, take a quick walk around the block.
Keep a journal—you’ll be amazed when you read back over the year how God is working in your life, and how much you have grown and matured.
Write down God-sightings in your journal—once you start looking for God in your daily life, you’ll be amazed at how often God shows up.
Express gratitude in your journal—for even the smallest things.
Get out in nature. It’s impossible not to have faith and hope when you’re surrounded by God’s glorious creation. Chase a sunset. Look for rainbows. Lie down in the grass and watch the clouds. Count the stars.
Parents of children with autism grieve. Find ways to externalize that grief:
Write about it in your journal. Share it with a friend. Speak it to a counselor or a pastor. Pray out loud
Yell at God if you have to—believe it or not, He can take it! (Don’t believe it? Read the Psalms!)
Pray throughout the day—when you wake up, when you’re doing the dishes, when you’re falling asleep. Your prayers don’t have to be long, or theological, or complicated. Sometimes “Help, God!” or “Thank you, Lord!” is enough.
Learn to meditate—we tend to forget prayer is a two-way street. Meditation helps us learn to listen to God. There are many books available on Christian meditation.
Practice mindfulness—this is a gift our children with autism teach us on a daily basis—how to block out all the external stimuli and simply “be” in the present moment. The classic book, Practicing the Presence of God, is a