Fuel for the Journey

May 17, 2013 6 Comments

Parenting may be one of the most rewarding jobs on earth, but it is also one of the most difficult. Parenting a child with a disability is especially demanding, requiring surpluses of energy, patience and perseverance beyond, at times, the humanly possible. My son Joel has autism. 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? Fly-fishing? 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 a fragrant lotion on your feet (better yet, ask your spouse to give you a foot rub after the kids go to bed!), 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.

• Practice gratitude. One Thousand Gifts: A Dare to Live Fully Right Where You Are (Ann Voskamp) is a beautiful book that will open your eyes to the astounding gifts hiding in plain sight in the day-to-day fabric of your life.

• Spend more time outside. 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 disabilities 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 my son with autism teaches me on a daily basis—how to block out all the external stimuli and simply “be” in the present moment. The classic devotional book, Practicing the Presence of God, is a wonderful resource.

Parents don’t come equipped with a bottomless well of energy. But the good news is, God does! As we drink from the cup of living water held out to us by Jesus, we find ourselves refreshed, refueled, and transformed.

Kathleen Deyer Bolduc

2012-09-24 20.30.26

Filed Under: Living Life Daily, Scripture, Autism, Kathy Bolduc, Grief, Living In The Moment

Transformation on the Trail

April 19, 2013 2 Comments

Sunlight streams golden through beech and maple canopy. We walk, three of us, mother, father, son, through a cathedral of light. Leaf mold tickles the nostrils, leaves crunch underfoot, and above us, sycamore leaves applaud the day. A wild flutter erupts in my chest as thousands of grackles take flight, flash purple and black against a patchwork of blue sky. Taste of smoke sits on the tongue, carried across lake on October breeze.

We hike single-file. For a change, I lead the way. I am exhausted, moody, yet eager to soak in what could be the last nice day of autumn. Joel, our youngest son, as always in the middle, walks slowly, tentatively through the leaves, afraid of tripping on a root. My husband Wally brings up the rear. Joel’s constant chatter has subsided and we are quiet, our feet doing the talking as we scuff across yellow carpeted forest floor.

I hear Joel’s footsteps quicken, turn to see him approaching at a near-run. Surprised, I stop. He grabs my hand, looks me in the eye, grins, and pulls me forward. I wait for him to drop my hand, as he always does, but instead he squeezes it and swings my arm, his grin widening at my delight. For a moment, it feels so right, his hand a perfect fit in mine. A jolt of joy shocks my body, answered almost immediately by my mind, which says, no, don’t go there. There are no happy endings with 26-year-old sons with autism. There are no happily-ever-afters when they move away from home and you are left, not with “this is the way it’s supposed to be,” but with guilt, and sleepless nights, and often, regret.

Joel holds my hand tight, matches my gait stride for stride, steals sideway gazes, his eyes playful, a smile flitting, now-you-see-it-now-you-don’t, across his handsome face.

For a month he has been constant motion, constant chatter. Lashing out at staff with hands. Walking, running, walking, running around the 60 acre farm, for adults with autism, he moved to last year. Behavior staffings once a month, charting aggression. Manic swings, which we thought he’d left behind with adolescence, erupting again, keeping him awake at night, keeping everyone in his house on edge.

Dreams die hard. It will never be what we expected, our third son’s adulthood. You think you’ve moved into a place called acceptance, when yet another transition takes place and you grieve it all over again. Letting go of this son is nothing like letting his brothers go. That was the natural, normal progression of life, something to celebrate, knowing you did your job as a parent, giving them roots and wings. This feels like an amputation, so deep is this son’s need, so intensive our care-giving, a quarter century’s worth.

Joel’s hand, still clutching mine, is warm and sweaty. I leave my doubting, monkey-mind behind for a moment. Become pure body, pure hand, pure connection.

Friends tell me I must cut the cord, not hold so tight to this broken boy-man. But this connection—this fleshly hand in mine—tells me what my gut already knows. This cord is a living cord, a cord of flesh-and-blood. Unlike an umbilical cord, this cord can never be severed. Yes, like the towering maples and beech along this trail, we will go through fallow seasons. Like this past year, with his move away from home, a seeming death for him, for me, for his father.

Every October I mourn the passing of summer. Dread the dank days of winter to come. I want to stay pure hand, hold onto this moment forever. But my head calls me back to remind me that spring always follows winter. Spring, when the sap flows upward, bringing with it new life, new possibilities, new ways of being.

This is what is true: I am his mother. He is my son. And we are walking up a hill, hand in hand, through sunlight streaming golden through a canopy of maple and beech.

(A shortened version of this story appears in Chicken Soup for the Soul: Raising Kids on the Spectrum, this week’s book give-away)2012-11-24 15.13.22

I  am so thankful to report, what a difference a year makes! Joel has finally settled into his new home, and his father and I enjoy having him home with us every weekend for an overnight, church together, and some hiking or boating. We praise God for giving us the patience, perseverance, and faith to move forward through dark days. Spring always follows winter, and we praise God spring is here at last!

–Kathy Bolduc

Filed Under: Autism, Behaviors, Grief, Joy, Kathy Bolduc, Love, Transitions Tagged With: , , , ,

Reckless Love

March 15, 2013 12 Comments

Do you ever worry about your child’s future? Find anxious questions crowding your mind? Where will she live as an adult? What job will be best for her? Who will care for him after you’re gone? How can anyone ever care for him as well as you? I’ve lost countless hours of sleep to these kinds of worries. And then I saw a movie that helped me look at my son’s future in a whole new light…

Last night I attended Reel Abilities: Cincinnati Disabilities Film Festival. Reel Abilities is the largest film festival in the country dedicated to “promoting awareness and appreciation of the lives, stories and artistic expressions of people with different disabilities.” The festival presents award winning films by and about people with disabilities. http://www.reelabilities.org/

Awesome, right?

The movie I saw was “Ocean Heaven.” Taking place in China, this is the story of a widowed father and his young adult son with autism. The father, Wang Xingchang (played by Jet Li), is dying of liver cancer. With a prognosis of three to six months, Wang dedicates the last months of his life to his son, Dafu. While he prepares his son to live as independent a life as possible, Wang also prepares Dafu for the emotional repercussions of his death.

Wang and Dafu live a very simple and sheltered life. Wang does everything for his son. Sound familiar? He cooks for Dafu. He helps Dafu dress and undress. He takes Dafu to work with him via the bus. Wang does not believe that anyone else can care for Dafu’s intensive needs. With the prognosis of his impending death, Wang’s eyes are opened. He has raised his son to be totally dependent. Without his father, Dafu will be lost.

Wang dives into an intense teaching regimen. While he teaches Dafu to cook, to navigate the bus system, to mop floors and to dress himself, Wang searches for a place for Dafu to live. In China, there are few living choices for adults with disabilities. Dafu is too old for the orphanages that serve children, and too young for a nursing home. His needs are too great for a young neighbor, the family’s good friend, to care for him on her own. Wang visits an institution that takes people with disabilities. He discovers, upon entering, that they are kept behind bars.

When Wang finally finds a good placement for Dafu, thanks to the help of Dafu’s former school principal, his joy is palpable. The audience exhales a huge sigh of relief with him. Wang moves Dafu in, thinking that all is settled and well. He goes home, only to find his apartment is an empty shell without his son. The audience grieves with him. Later that night, Wang receives a phone call from Dafu’s new home. Dafu is inconsolable, raging and bellowing in emotional pain. The father moves into Dafu’s room with him, realizing these last few weeks must be spent preparing Dafu, emotionally, for his death.

“Ocean Heaven” has given new meaning to these verses that I’ve been reading in my Lenten devotionals this week: Listen carefully: Unless a grain of wheat is buried in the ground, dead to the world, it is never any more than a grain of wheat. But if it is buried, it sprouts and reproduces itself many times over. In the same way, anyone who holds on to life just as it is destroys that life. But if you let it go, reckless in your love, you’ll have it forever, real and eternal (John 12:24-25 The Message).

Anyone who holds on to life just as it is destroys that life. Wang loved his son with his whole heart. But his love had been a smothering love. Dafu knew his father would do everything for him, so he had no need to do for himself.

I look at my life as Joel’s mom. When he lived at home, even into his mid-twenties, Joel was treated like a little boy. We dressed him, showered him, fetched his shoes when he wanted to go outside, made his bed, did his laundry, cooked his meals. Only when he moved from our home to a home of his own (with 24 hour support) did we learn how much he was capable of! Joel’s father and I needed to die to our belief that Joel needed our help with everything. Only then could a spirit of independence sprout up and grow within our son.

But if you let it go, reckless in your love, you’ll have it forever, real and eternal. Dafu’s father finally let go of the lie that no one but he could take care of Dafu. He let that belief die rather than take his own life along with the life of his son (his plan at the beginning of the movie). That act of reckless love opens the world to Dafu, a willing student who is hungry for relationship.

Again, I look at my life as Joel’s mom. It was always our dream for Joel to move away from home as an adult and live as independently as possible, just as his older brothers did. We helped establish a wonderful farm for adults with autism within a thirty minute drive of our home (www.safehavenfarms.org). We had no idea how challenging this transition would be, for all of us—emotionally, spiritually, and physically. But our act of reckless love—in facilitating this move in the belief that Joel has a right to his own life—is finally bearing fruit as we see him form new relationships, learn new tasks, and grow more and more into the person God created him to be.

Unless a grain of wheat is buried in the ground, dead to the world, it is never any more than a grain of wheat. But if it is buried, it sprouts and reproduces itself many times over. With these words, Jesus was preparing his disciples for his coming death. Wang also prepares Dafu, emotionally, for his coming death. I won’t give away any more of the movie’s plot, but the way in which Wang does this is extraordinarily moving.

I will not live forever. Joel’s dad will not live forever. You will not live forever. In the sacrifices we make every day to ensure our children are given the opportunities to become as independent as their needs allow, we prepare the way for them to sprout and grow and reproduce the love which we have given them, which flows out of the love that God has given us. It’s a love our kids were created to give to the world. A love that will only be released through our reckless love in letting them go.

–Kathleen Deyer  Bolduc
joel water

Don’t forget to vote for Not Alone in the About.com Readers Choice Awards. You can vote every day until the contest ends March 19th!

Filed Under: Autism, Grief, Love, Scripture, Terminal Diagnosis, Transitions Tagged With:

Birds of the Air

February 15, 2013 5 Comments

2013-02-14 17.15.40

It’s five o’clock in the afternoon. I’m sick and exhausted and stressed to the max. Walking into the bedroom the bed beckons, but the window beyond pulls me like a magnet. The view opens onto several hundred acres of farmland planted each summer in corn or soy. Today, the twelfth of February, fields unfold in winter browns and grays, with rows of corn stubble undulating into the distance. The sun shines, clear and bright, and clouds hang like ornaments in a blue sky. This is winter’s beauty— spare and elegant and tinged with lavender.

In the distance, I see a gobble of turkeys, forging for an early dinner. Suddenly, a flock of—how many, a thousand?—starlings lifts off from the field directly in front of me. I’d been so busy staring at the turkeys, further off in the field, that I’d looked right past the smaller birds. The flock lifts as one, swooping right, then left, turning and soaring and turning back again; all perfectly timed, tightly precise maneuvers. Blue-black wings glint purple in the sun, jewels above the dun-colored field.

I watch for several minutes as the birds lift, soar, and dive bomb the earth, only to head skyward again. Their unison is breath-taking. In one vast turn they swoop straight toward the house, landing in the 100-year-old maple trees dotting our front yard. After a quick moments’ rest they take off, simultaneously, for the next field down the road, just out of my line of vision.

My spirit, downtrodden and dejected just moments before, lifts; a bubble of joy wells up from the depths. The miraculous flight of this murmuration of starlings (don’t you just love that word for a flock of starlings?) plants me in the here-and-now; opens the ears of my heart to the Spirit’s murmur: give thanks for this moment—for what is right in front of your eyes.

You see, I too often focus on the past and the future. I so often miss out on the beauty of what’s right here, right now.

My mind has a habit of flitting to what’s behind me: Did we make the right decision when we moved our son, Joel, who has autism, out of our home nearly three years ago, at the age of twenty-five? Would he have been happier in an apartment in the city instead of living on a farm? Is he on the right meds? He can’t tell us what happens inside of him when he grows agitated and lashes out with his hands. Why didn’t I enroll him in RDI classes? Why did I give up on OT?

Tired of what’s gone before, my anxious mind flies to the future. Can we build true community for Joel where he’s living now? What can I do to help make that happen? What about my book deadline? Is there any earthly way I can finish it on time? And my mom’s dementia. The move from her home to the retirement community was so hard. Is it time to consider assisted living? How can I deepen my relationships with the rest of my family? So much time and energy is spent on Joel’s care, even now that he’s living outside of our home. And what about building my spiritual direction practice; developing Cloudland, our place of retreat in the country; finding a publisher for my young adult novels? Where will I find time to do all I feel called to do?

The thief comes to steal, kill and destroy (John 10:10). And one of his most famous tactics is keeping us from seeing and enjoying the beauty of the present moment.

Watching the glorious flight of these birds today, I think of Jesus’ words: Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life? (Matthew 6:25-27)

A few verses later, The Message puts it like this: Steep your life in God-reality, God-initiative, God-provisions. Don’t worry about missing out. You’ll find all your everyday human concerns will be met (Matthew 6:33).

Yes, life with autism is difficult. Transitioning a child with autism out of the home is extremely hard. There are many days, like today, when I am sick, or just plain exhausted; worried and full of care. There are days I don’t believe I can handle one more ISP meeting (the residential form of an IEP), one more form to fill out for the new psychiatrist, one more tense conversation with someone over Joel’s past behaviors, one more sleepless night as I toss and turn, trying to figure out how to hand it all over to God without taking it back up again.

But God shows me, again and again, that when I steep myself in His presence, He colors my life with joy, just like my tea bag colors the water in my favorite cup. When I immerse myself in His will for my life, He shows me the path to what He intended for me all along—a beautiful marriage strengthened by adversity, three sons and a daughter-in-law that I love dearly and am so very proud of, soul sisters with whom I can share anything, prayer partners for mornings of lectio divina, Kingdom work that delights and restores me. When I steep myself in His provisions, my eyes open to the sheer beauty and abundance of all that surrounds me.

Steep your life in God-reality. Today, my God-reality is a murmuration of starlings flying in unison to some mysterious inner compass.

I pause to say a prayer. You, Lord God, are my inner compass. Let me fly in your presence, without fear or hesitation, knowing that you will meet all of my needs, as well as the needs of my son and the rest of my family. Amen.

Reflection Question: What is your God-reality today? Look around. Where do you see God’s presence in your home, in your child, in your work?

Blessings on your day!
Kathleen Bolduc

Filed Under: Autism, Kathy Bolduc, Living In The Moment, Living Life Daily, Scripture, Thanksgiving, Transitions

Between a Rock and a Hard Place

January 18, 2013 10 Comments

Don’t be afraid, I’ve redeemed you.
I’ve called your name. You’re mine.
When you’re in over your head, I’ll be there with you.
When you’re in rough waters, you will not go down.
When you’re between a rock and a hard place,
it won’t be a dead end—
Because I am God, your personal God,
The Holy of Israel, your Savior.

Isaiah 43:1b-3 (The Message)

 

 Between a rock and a hard place. That’s where my husband and I found ourselves the week after Christmas. Wally and I had tickets to fly to New York to visit ministry partners. It promised to be a refreshing visit—a benefit concert (with a quartet of accomplished jazz musicians) for the orphanage we’re building in Uganda. A “State of the Union” meeting, hearing from our ministry outposts all over the world. An Epiphany celebration, combining the fun of dressing up as kings leading into a night of worship. Plus, one-on-one time with our hosts, Ed and Annette, two of our best friends in the world. We couldn’t wait to go.

Until.

Like most of you, I’m the parent of a child with autism. My youngest, Joel, who is 27-years-old, has autism, moderate cognitive disabilities, and an anxiety disorder. Two years ago Joel moved from our home to Safe Haven Farms, a farming community for adults with autism. Wally and I were part of the parent group that created and established the farm. The transition has not been easy (understatement of the year!). For two years we have done everything in our power to ease Joel’s difficulty, and, praise God, we are beginning to see him relax into his new life. We thank God for Mohamed, a caregiver from Mauritania, Africa, who has been Joel’s “main man” for the past eleven years. If Mohamed hadn’t followed Joel from employment in our home to employment at Safe Haven, Joel wouldn’t have made it over the transition hump.

Which brings me back to the rock and the hard place.

When Mohamed takes a vacation, Joel falls apart. Big time.

Mohamed let us know, after we’d bought our tickets for New York, that he’d been invited by friends for a free trip to the Rocky Mountains. His trip was scheduled for the same week as ours.

I cried. Wally and I prayed. We looked at all of our options, none of them good. “We have to cancel the trip,” I told Wally that night. I called another friend in the ministry and told her we would most likely not be coming. She said she’d pray.

The next night Ed and Annette called. “We heard you’re thinking about cancelling,” Annette said. “We believe you’re supposed to be here this particular week. You need the rest. You need the refreshment. Let us pray for you.”

I put the phone on speaker. For five minutes Wally and I sat, eyes closed, letting the prayer wash over us. Ed and Annette prayed for God to make a way for us to be in New York on our chosen dates, for the chemicals in Joel’s brain to come into divine alignment, for someone to reach out to help us, for God to grant us deep rest.

“Thanks,” I whispered. “I needed that.” Not only had we been struggling with Joel’s behavioral issues. My mother has dementia, and I had just spent several months readying her house for sale (including remodeling two bathrooms, a family room, and a leaky basement), packing up and distributing forty years worth of belongings, and dealing with the emotional fall-out for both me and my mom. I was more than tired. I was bone-deep exhausted.

Twenty minutes after hanging up from that prayer, the phone rang again.  It was Sarah, a long-time friend of Joel’s. At the tender age of eleven, Sarah volunteered to help at Joel’s special needs day camp. Joel was five-years-old at the time. They’ve been best buddies ever since, and Sarah has become part of our family.

“I’ve been thinking of taking Joel on a mini-vacation,” she said. “I was thinking  Indianapolis. We could get a hotel with a pool and hot tub, and go to the children’s museum and the zoo. I thought we could go while you’re in New York. What do you think?”

What do I think?! What do I think?!

I laughed while I wiped tears from my eyes. Twenty minutes! God answered our prayer in twenty minutes!

We did not cancel our trip. We were refreshed beyond our wildest imaginings as we spent time with dear friends and ministry partners. We heard amazing stories of God’s  movement through the worldwide ministries of our organization, Bridge for Peace. We worshipped, we prayed, we made plans, we laughed, we played.

We came home transformed.

At the age of 27, Joel had his first vacation without Mom and Dad. He had a blast. “I’ve never seen him so relaxed,” Sarah said over and over again, as we checked in each night by phone. He swam, splashed in the hot tub, watched the dolphin show at the zoo (twice!), and spent four hours at the Children’s Museum. Not one behavior in four days. Smiles from start to finish.

He came home transformed.

These words from Isaiah flood my heart: Don’t be afraid, I’ve redeemed you. I’ve called your name. You’re mine. When you’re in over your head, I’ll be there with you. When you’re in rough waters, you will not go down. When you’re between a rock and a hard place, it won’t be a dead end—Because I am God, your personal God, The Holy of Israel, your Savior.

A rock and a hard place? No sweat for our God! He transforms the rock by making a doorway through it. A doorway into transformation and grace.

Where is your rock and hard place? Take time to sit down and listen for God’s voice. Then look for the doorway through the rock. It’s there, waiting for you.

Kathleen Deyer Bolduc

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http://www.kathleenbolduc.com

Autism & Alleluias

 

Filed Under: Autism, Behaviors, Kathy Bolduc, Scripture, Thanksgiving
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