Kristen Scott

@kristen-scott | contributor
Kristen Scott has two adult children, including a 24-year-old son with autism. Her essays have appeared in the Chicago Tribune, Chicago Parent, the suburban Chicago papers of the Pioneer Press and two book anthologies. She led a support group focusing on the emotional needs of parents with special needs children for seven years. A speaker on autism to various groups, she blogs at Good Marching: Experiences in Autism and the Rest of Life. She and her husband, Andy, live in Deerfield, Illinois.
Patty O'Machel

The Question I Ask Myself Every Morning When I'm Exhausted by 9 a.m.

There’s so much talk about how moms need to care for themselves so that they are able to care for their children. When you Google “secrets of a happy mom,” you might come up with results ranging from new moms to moms of teenagers, and all the ways one can find happiness in those roles of parenting. They all have a common theme: moms need personal time, exercise, time alone with a husband or significant other, etc. to be a whole person before trying to do anything else. In theory, it all sounds so easy, so seamless, so sensible. But my reality is not like that. I wake up every morning before my kids (as suggested), but not for meditation and a quiet cup of coffee while I gaze out the window. By the time I take a quick shower, and get organized with clothes and lunches, it is time to get the kids up and going. By the time I take my kids to school, I have physically lifted my daughter’s 82-pound frame eight different times: out of bed, into the wheelchair, into the bathroom, into her clothes, into her wheelchair again and into and out of the car. And then on top of that, I am pushing a heavy wheelchair and hauling her walker. I believe my friends who have kids with more involved cereb ral pal sy have it 100 times harder, and I try not to complain for that reason. But it’s hard, and it’s constant. I silently resent (just a tiny bit) the moms who hop out at school with their seemingly perfect bodies and their skintight yoga pants – when I feel honestly beaten down and prematurely aged, before the clock hits 9 a.m. My daughter is delightful, and fun and awesome, and I wouldn’t trade her for anything.  But my muscles scream, and my shoulders and back ache, and I never, ever get a break.  And I accept this reality, I do. But it doesn’t make it any easier some days. The “New York Times” published an article last year called “When the Caregivers Need Healing” that covered this exact issue, as well as some of the mental and emotional health issues that can arise when caregivers fill this role for their families. How do special needs moms put themselves first or practice all of the things they are “supposed” to do to stay strong and balanced for their kids? How do they do all of that when their kids need so much attention and energy, and when we moms have so much anxiety? The reality is, we can’t fall down on the job. We can’t “not be there” to care for our kids. They can’t do it themselves. As special needs moms, we have a great need for self-care. But how can we make that happen? A version of this post originally appeared on Parenting Outside the Lines. The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Kristen Scott

Celebrating Halloween With My Son With Autism

If I could do my life over, I’d be a party planner. There are few things I enjoy more than preparing a celebration, like the Halloween party for children with special needs I led for our township last weekend. I spent weeks arranging details for crafts, games, decorations and snacks so the event would run with ease. Thanks to a host of generous volunteers, I think it did. Celebrations with my own family, however, didn’t always turn out as planned. The blueprints for gaiety in my mind were rarely executed as intended by Daniel, my little boy with autism. He had his own ideas. Take birthdays, for example. I strove to make them festive occasions in our household, involving favorite meals, helium balloons and a musical birthday plate for the guest of honor. Daniel, however, was unimpressed. One year he actually developed a physical aversion to birthday cake. He wanted no part of the homemade confections brought forth for other family members, shoving his slice away with the back of his wrist, lest the offending substance touch his bare hand. Undeterred, I concocted for his own birthday a dessert comprised solely of Daniel-approved foods. When the big moment came, he regarded the lopsided, cake-shaped mass of whipped cream and Oreos with a striking lack of enthusiasm, but deigned to blow out the candles and accept a slab without bolting from the table in horror. I nearly wept with joy. Halloween, on the other hand, was one celebration I could count on to at least resemble the typical-family ideal I aimed for when my children were young. Daniel learned quickly that orange decorations meant a trip to Didier Farms, where he opted without fuss for the first pumpkin he saw. He enjoyed the jack-o’-lantern creation process, squeezing the slick pulp between his fingers, planting the votives firming inside the hollowed shells, then sitting outside, arms crossed and focused, to study the flickering candlelight winking from the pumpkins aligned by the door. He tolerated every costume I devised for him, from baby cow to cowboy, green M&M to white, floaty ghost. He expressed no preferences, but he never balked at my selections, even the regrettable Mr. Potato Head ensemble of 1997, a choice bitterly scorned by my daughter, which I’ll never live down if she has anything to say about it. Daniel didn’t mind it, though. He marched out the door, clutching his plastic pumpkin with enviable nonchalance, touring the neighborhood with his dad and sister, who swallowed her shame and behaved with typical loyalty to her little brother. I see them still, their eager, costumed figures heading down the sidewalk as dusk settled in with Natalie holding Daniel’s hand protectively in her own. “Say ‘trick or treat,’ Daniel,” she coaxed as each door was opened. “‘Trick or treat!’” Sometimes he’d utter a proximation of the phrase, but more often just grabbed for the goods while Natalie issued a thanks for both of them before hurrying to the next house in line. Described later by their father, Jeff, who guided them while I manned our own front door, these scenes are as vivid as if I’d been standing beside them: the warm glow of light spilling from doorways onto their expectant faces, Daniel reaching without fanfare into the offered bowl, Natalie gently coaching him, their unique bond deepening, all on its own. I couldn’t have drawn a more perfect picture if I tried. In the blink of an eye, Natalie was spending Halloween with friends, and Andy, her and Daniel’s step-father, assumed trick-or-treat duty in the new neighborhood we moved to when Dan was 9. He wasn’t a little boy anymore, but I wasn’t ready to pare down his Halloween experience, even if he showed no great interest in participating one way or another. Of course, I usually claimed the cushy job, parked at home by the front door while dispatching my husband to herd Daniel up and down the street. This become a bit challenging as Daniel grew older, his abrupt behavior more startling, at age 11 or 12, to neighbors unfamiliar with his autism. People were sensitive to Daniel’s quirks, though, recognizing his differentness and treating him with tender, respectful indulgence. Few begrudged his mute grabs for candy or lack of thanks, which we supplied on his behalf. But in just a few years, trick-or-treating held less appeal for Daniel. Having graduated to a more sophisticated vampire costume, he was nonetheless ready to head home after just a few houses, content to pass the evening peering over my shoulder at the children crowding our doorstep, now and then holding the candy bowl himself as careful selections were made. He was growing out of the Halloween of his childhood, just like his typical peers. I only needed to follow his lead. I knew what he was missing, though: The “Halloween Hoopla” extravaganza held each year by our park district; the haunted house teens from our church navigated together, shrieking in feigned terror; the noisy packs of adolescent boys, jostling down the sidewalk, eyes open for girls, collecting the loot they pretended not to care about anymore. These rites of passage were not right for my son, but I mourned their loss just the same. Daniel had his own game plan, though. He was satisfied with the handfuls of candy he swiped behind my back; the roasted pumpkins seeds he surprised me by enjoying, crisp and salty and warm from the oven; our talking candy bowl with the green motion-sensing hand that lunged forward as he reached, giggling, for another Tootsie Pop. He didn’t regret the pages lost from my Halloween blueprint. He didn’t even know they’d been drawn, and that was all right with him. And so, in time, it became all right with me. My kids have been out of the house for several years, but I still decorate it for Halloween. It reminds me of those simple, unguarded days, the celebrations that ran smoothly, better than I could have planned. While publicizing last week’s Halloween party and recruiting volunteers, I often told people that I wish there’d been a party like this available when my son was young, a lower-key event where differences don’t matter and kids and parents can relax and enjoy the celebration in a setting tailored for their needs. Yet this isn’t precisely true. I’m thrilled to lead this event each year, providing an experience that seems to be appreciated by the community. But I wouldn’t change a thing about my own children’s Halloween experiences. Those memories are pretty much perfect, just as they are. Follow this journey at Good Marching: Experience in Autism and the Rest of Life . We want to hear your story. Become a Mighty contributor here .

Kristen Scott

Telling a Solicitor About My Autistic Son Living in Residential Care

Every few months for the past 10 years, Evie from AMVETS calls to ask for a donation. She is 97 years old and has been soliciting for the veterans for over 30 years. I never turn her down, even if I have to raid my husband’s closet to fill a bag. Our interactions have grown through the years from confirmation of address and pickup time to lingering, affectionate chats. I’ve learned, for instance, she has five children and 12 grandchildren, one of whom graduated from University of Chicago last spring. I don’t rush off the phone when Evie calls, no matter what I’m doing, mindful that each comforting connection may be our last. Her call last Thursday was a welcome reprieve from the fruitless knot of writing I’ve been tangled in for weeks, work on an piece that has failed to come together despite dogged attempts to force its cohesion. Although my donation bin out in the garage was empty, I told her I’d come up with something. “Anything is welcome,” she affirmed, as she always does. “Clothing, books.  Old toys — we can use anything.” “Well, my children are 26 and 24,” I replied with a chuckle. “So I don’t have too many toys around the house anymore.” She continued her gentle coaxing, even though I’d already agreed to a donation. “Children’s books are good. And stuffed animals are always appreciated.” I thought of my son’s bedroom upstairs, the built-in shelves lining one wall still filled with plush animals of various species. A lifelike lion sprawls regally across the twin bed; a 5-foot-tall giraffe gazes out the front window, a gift from my mother-in-law the last Christmas before Daniel left home. Suddenly I was confiding in a woman I’ve never met, but who’s been a fixture in my life for a decade. “You know, Evie, my son has autism and hasn’t lived with me for over eight years. But his room is the same as it used to be. It’s filled with stuffed animals I can’t bring myself to give away.” In a rush, I continued, explaining I’m a blogger and had been trying when she called to write about pain I can’t relinquish, nor find words adequate to explain. “I don’t know what’s the matter with me, Evie,” I went on tearfully. “I know he’s not coming home. He’s never coming home, but I’m still waiting. I’m still waiting for it to be different.” My voice broke. “I can’t let go of him.” Evie replied without hesitation. “Of course you can’t,” she declared. “You carried him. He’s a part of you. He’ll always be a part of you.” We talked for some time, about loss, what it takes and what it leaves behind. “You are stronger for what you’ve gone through,” she observed, the experience of nearly a century lending new credence to the words. “But you don’t ever let go of what you feel for your child. He is always a part of you.” In the weeks following Daniel’s move to a therapeutic residential school, I spent many nights curled in his bed, lost to grief, laden with treacherous, guilty relief that I could now relinquish the rigors of his care. I knew I’d needed help. That didn’t ease the burden of failure, though — the awful acknowledgement my best efforts weren’t enough. Surrounded by the mementos of his life with me, I let the sorrow flow. My eyes fell on photos of his special ed peers, his middle school diploma, a worn communication notebook from the fourth grade. I held the photo of a dolphin leaping from the water at the Shedd Aquarium, a clipping from the Chicago Tribune he’d often pull from his nightstand and ask, hopefully, “Fish?” His animal collection, amassed over 15 years, peered down at me. The swivel-headed owl; the wolf, its head thrown back in a howl Daniel had learned to imitate; the spotted pony, a token of our joy at his first coherent word as a toddler, “Horse!” How can I let go of these companions, tossed countless nights across his bed, before we turned off the light for sleep, Daniel calling each one by name? “Bear!” “Sheep!” “Frog!” Again and again I’d lob the soft toys until he was surrounded, giggling and gleeful and snug in their comfort — a treasured ritual of our uncommon life, a period of laughter and happiness, soothing whatever trials the day, now gone, had rendered. It’s long been my plan to refit Daniel’s bedroom into an office, keeping his bed in place, while filling the shelves now housing his animals with the dozens of books stacked in piles on my own bedroom floor. It would be a fitting space for me to write, to wrestle the ongoing themes that have shaped my life, to draw meaning from circumstances I still struggle to understand. I can’t bring myself to do it, though, to symbolically sever a tie that has been loosening on its own, bit by bit, for years, to grant permanence to a truth I’ve tried to deny for half my lifetime. If I’m honest, Daniel himself probably wouldn’t object to the change to his old bedroom. He once raced through the house on his visits home, darting into each room as though confirming the accuracy of his memories. On his last visit, though, I had to coax him upstairs, where he studied the souvenirs of his childhood with mild interest, humoring me, it appeared, more than savoring a time now past. He seems to recognize this as home but a home he doesn’t live in any more. And that’s OK with him. He’s moving on, just as he should, as he must. I told Evie I’d try to choose an animal or two to donate this time, and she told me not to worry; I would do it when I was ready, if I am ever ready at all. I don’t know when this will be. Part of me still clutches the slender reed of hope that he’ll return home. I’m still waiting for another chance. I still want him back with me again. This is unlikely, irrational. Futile, even. I know this; I do. Yet hope is relentless. Perhaps that’s how it must be, too. Follow this journey at Good Marching: Experience in Autism and the Rest of Life.

Kristen Scott

Residential Care for Autistic Adults: A Mother's Story

Evidently I’ve been seeing myself all wrong. This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office. There, a woman about 10 years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!” I received this news better than you might expect. Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all. “You know,” I continued, leaning forward confidentially, “besides using a cellphone, I still listen to rock and roll!” I cocked a sly brow. “And Eminem is, like, totally awesome!” I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response. That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me. My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions. His case manager Aaron has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers. We’ll gain freedom to enjoy more satisfying interactions and be part of our son’s life on a deeper, more meaningful level. “Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.” It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing. It seems to be Aaron’s gentle way of telling us to back off now and let them do their jobs, so our children can flourish in adulthood. Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago. I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness. Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home? Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him? Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost? As Daniel transitions into a new life and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not. It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly “mine.” When his days began and ended with my voice, my touch, my assurances of a love that would last forever. I recognize that a part of me has been waiting seven years for him to come back home. I want to assure Aaron that he needn’t worry, that I’m an old hand at this: I know all about letting go, the wrenching loss of doing what is best for my son. And I know, too, the freedom from the demands of caring for him. I know that freedom, and I know its cost. It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance. It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own. It is the recognition that in many ways my son feels like a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home. It is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child: Now you’re just somebody that I used to know. Maybe Aaron sees me as a mother desperate for a time gone by. He wouldn’t be wholly wrong. But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again. I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be. I am a mother who understands that love is not always enough, yet love remains more powerful than grief. It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving. And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become. But there’s letting go, and there’s letting go. My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother. That woman will always be right there, behind him. I can’t see myself any other way. The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Kristen Scott

Group Homes for Adults With Autism: What to Expect

Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.” Just the two of us at a picnic table on a summer day. By social media standards, life with my son may not win any awards for excitement or variety. We have few adventures to chronicle, no photos of thrill-packed vacations. Our interactions are more modest affairs, and ever more predictable. My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home. Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us. I wonder sometimes if I’m actually seeking encouragement, a kind of validation the value of these visits exceeds my own longing for something more. Because I feel more like a spectator than the woman once at the center of his world. In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete. I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care. I’d be free from those demands, free to explore a more satisfying connection with him as he enters adulthood. As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us. More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15. Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on. The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home. I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months. Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud: Picnic with Daniel on a beautiful day. It’s not enough. But it’s what I have. We met at a local park and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before. I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch. His “obsessions” have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined. There is so little I can give him now. I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart. Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits. It’s been months since I’ve been alone with my son. The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own; they seem to be triggered, in fact, by my presence. Old patterns are difficult to break. Memories of losing control of my son remain, vivid, haunting and formidable. Yet time with him has come to feel like supervised visitation, the structure in place to help him dictating the terms of our relationship. I miss time alone with him, privacy as I mother him the only way I can: tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child. I’m ashamed to admit I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be only mine. The very competency of the staff rakes the embers of my doubt, which has smoldered for years, the guilt that my own care for him was ultimately not enough. I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years. I don’t know how to reconcile this sense of loss derived from what should be celebrated, the development of my child as he learns a new life apart from me. The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago. There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons. A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium. It’s a rhythm scored over years speaking a language without words, weathering together the meltdowns and setbacks, savoring the small triumphs of our uncommon life together. While resting side by side against his headboard, books or flashcards across our knees, as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name: “Zebra!” “Cow!” “Wolf!” It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light. “Good night, sweet Daniel. I love you, Daniel, my sweet, beautiful boy.” It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides? Perhaps he is more content than I can possibly understand, taking all he needs from me and our visits, the routine we’ve established, the mild experiences of my Facebook posts. The procedural support is in place to help him towards a positive, independent direction. But he needs the emotional nourishment of his mother, too, of all of us who have loved him without question for a lifetime, whose love transcends all circumstance. I can’t rest until I find that place again. I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son or our relationship to one another. No line will be drawn beneath Daniel’s life or my experience with him. I have a role that only I can play, even as I stumble and gasp and bungle my lines. Letting go of my dreams for him has never been an option. Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope. That hope is painful sometimes.  But it’s what I have. The Mighty is asking its readers the following: What’s one part of your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Kristen Scott

The One True Gift We Gave to Our Son With Autism

As the parent of a teenager learning to drive, I was an utter failure. When my daughter, Natalie, took the wheel, I was such a wreck that it’s a wonder she learned to drive at all. Several months after getting her license, she offered to take her brother, Daniel, for ice cream. While she’d proven to be a fine driver, I couldn’t help watching as she backed down the driveway, shouting advice and directions, gesturing like a traffic cop as she veered toward our neighbor’s lawn. “You’re not helping!” Natalie yelled out the driver’s window as she inched toward the street. “Be careful!” I cried redundantly. “Yeah, yeah, yeah!” she yelled back, waving me off. “Both hands on the wheel!” I bellowed in reply. “I mean it now!” As she shifted from reverse into drive, I observed Daniel in the passenger seat, eyes scrunched tight and hands over his ears, desperate, no doubt, to block the din of our banter. But as I teased Natalie later, it was as though he couldn’t bear to watch as he placed his life in his sister’s hands. Eighteen months later, our mood was less jovial as we moved Daniel to a residential school in another state, an hour and a half from home. He was 15 years old. Seven years ago today, I let go of my son, placing his welfare in the hands of people I barely knew, relying on faith that we were doing the right thing for our cherished, special child. It was the most painful thing I’ve ever done. I’d had several months to prepare and accept that he could no longer be educated through conventional special ed channels or safely cared for at home. The school we’d chosen was highly regarded, known for its success with students with behavioral issues. We toured and met the staff, asking every question we could think of. I talked to friends whose own son resided at the school, comforted by their positive experience. We were as confident as we could be that we were making the best decision possible under difficult and heartbreaking circumstances. Yet there was no real way to prepare Daniel for the life change ahead, to explain our actions had his best interest at heart and that we’d done everything we could and it was still not enough. Words could not convey to our nonverbal, autistic child our profound love as we left him in an unfamiliar place and his care now in the hands of others. My dark fear that he’d believe we’d abandoned him almost broke me as I clung to the fragments of my tattered, trembling faith. After Daniel’s move, I rarely practiced that faith, traveling to Wisconsin most Sunday mornings to visit him. In truth, I was glad for the excuse to leave the church behind. My parents were both gone by then, their memories filling the space they helped build before I was born and the church of my childhood imbued with more sorrow than comfort, awash in reminders of all that was lost too soon. The old hymns and liturgies were haunting in their constancy — vestiges of what I once believed invulnerable. I attended church a few weeks ago, however, and met the new pastor for the first time. “They say ‘America’s Got Talent,’ but I beg to differ,” she joked in her sermon, noting that reality TV rarely depicts a truly useful skill, a precious gift or a worthwhile endeavor. “The high school teacher who makes algebra come alive — that’s talent,” she continued. “The musician who brings tears to your eyes. The parent whose children know they are loved.” I missed much of what came next. I was suddenly back seven years to the third night after we’d left Daniel in Wisconsin. We’d spoken every day to his floor manager, Kip, whom Daniel had taken to immediately. So far he’d adapted remarkably, Kip told us, better than most new residents. We’d been advised not to visit for 30 days, but Daniel was adjusting so well that Kip thought we may be able to come sooner, possibly for Christmas. My voice broke with relief and gratitude as I thanked him. “Daniel is going to be fine,” Kip assured me. “He is secure in a way I don’t see very often. This is a child who knows that he is loved.” I doubt Kip will ever understand how much those words meant to me and that they remain the most meaningful thing I’ve ever been told. For all the ways I felt we’d failed him, we had given Daniel that one gift. He knew he was loved. He knew we would come for him again. It’s been a turbulent few years with my son. I wonder sometimes if he still knows the depth of my love for him, and how I treasure him despite the distance that separates us; if he remembers the love I could once demonstrate each day, waking him in the morning and seeing him to bed at night. I wonder what my weekly visits evoke in him. Are they like the old liturgies of my childhood, stirring memories of faith once held without question with the melodies now echoing both loss and promise? Does he know me, still? Does he remember? Have the seven years he’s been gone blurred his sense of me, or do I remain one thing he knows to be true, to be constant, no matter what? He asks for me, but what is he seeking now? Does the memory of my love wound in my absence, or is it one true gift that distance cannot diminish? I don’t know the answers for sure. But I keep faith that he does know, that he has always known, that I am with him and that he will always, always be loved. Follow this journey on Good Marching: Experiences in Autism and the Rest of Life. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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