Some days I feel like a fraud, a con artist, a shell game operator. I tell stories about how a daughter with special needs changed my life; how at thirty-three, Lindsey lives independently of us–her parents–in a home with her husband of ten months. My mind continually shuffles through my responsibilities, those of mother, part-time caregiver, representative payee*, hoping to discover some sage advice that might be worth sharing. Then I write about the challenge, searching for words that describe some perceived silver lining.
But are my stories shams?
My daughter’s hands, arms, shoulders, and head tremble like a Parkinson’s patient, although Parkinson’s isn’t her diagnosis. In 1986, at six, Oregon Health Science University (OHSU) doctors told me that Lindsey had essential tremors, that she was mildly mentally retarded. I cringed, tried to cover my ears; I wanted to run away. The labels I now prefer are: mentally challenged, special needs, mentally disabled, or developmentally delayed. I don’t like retarded. That word hurts my heart.
OHSU doctors warned us that Lindsey would grow up and eventually live in a group home. But that didn’t happen. Not only does Lindsey live independently, she fell in love, she married, and she even found a job filing papers at a local State Farm agent’s office in our small town.
“I work full-time, two hours a day,” Lindsey tells anyone who asks.
So we’ve had successes. Right?
Then why do I feel like a fraud?
Because sometimes these achievements seem like an illusion, a slight of hand. There are moments when it feels like they only exist in my mind–because I want them to. Because I need them to.
One evening Lindsey dropped by our place with a thumbnail-size gash on her chin. The wound was red, scabbing, sore-looking. In recent years, my daughter’s gait has become unstable. She uses a cane when she walks to work, the grocery store, video game exchange, or our house. My immediate reaction was: she’d fallen. Again. Concern washed through me. But when I asked if that was the case, Lindsey shook her head. Her blue eyes darted right, then left. I studied my girl’s chin, her eyes, her forehead. Half her eyebrows were gone! Razored away. A stubble of dark hairs sprouted into curved, thick lines where two bushy brows used to be.
“Did you shave your eyebrows?” I asked. “Again?” My voice increased with every word. Immediately, the ten thousand times we’d discussed hair removal treatments whizzed through my brain. I remembered the offers I’d made to help Lindsey wax, tweeze, or take her to the spa. “And your chin?” I asked, my mouth shaped into a scowl when I realized she might have a scar. “Is that gash from a razor?”
“Yes,” Lindsey said, pausing to gulp for air, “pluckin’ takes too long.” Her eyes, darted right, then left, disappearing upwards. She seemed to be searching for words in her head, probably for an excuse she thought I might buy. Lindsey had gone to work this way! She’d walked around town with half brows. My cheeks flushed red and I clenched my fists, trying to keep my frustration in check. Once more I offered Lindsey several hair removal alternatives, but she shook her head defiantly. “I prefer my way,” she said. “I’ll do it by myself.”
On Sunday afternoon, Lindsey called the house and asked if I’d take her to Christopher And Banks to buy a new dress and a few new tops. Instead of the “freshman fifteen” that many new college students add to their frames during that first year of college, Lindsey had put on the “marriage-twenty.” Her doctor advised that it would be best to lose a few pounds. And my girl is trying.
“Mom, I hafta dress pro-fes-sion-al for my job,” Lindsey said, breaking down professional into small segments. “I wear com-for-ta-ble clothes on the weekend.” Her tone sounded like a warning. “It’s Sunday, so I’m not gettin’ dressed up.”
An hour later, I pulled into the driveway of my daughter’s manufactured home. She waited outside, under the covered carport, wearing a knit green tank top and a pair of faded denim jeans. The jeans looked as if she’d squeezed into bottoms that were at least three sizes to small. And her hair? Unruly, short, dark curls escaped a pink headband. My daughter used to match her headbands to her outfits. Her current fashion trend seems more like, “wear whatever’s handy.”
Lindsey grinned when she saw me, raising her right arm and waving her hand animatedly. Her tremors added a spastic enthusiasm to the motion. Even from a distance, I noticed the missed black hairs in her haphazardly shaved armpit.
Lindsey inched toward my black sedan. She stuck her cane on the concrete floor, stabilizing her body with every step. The wrinkled, green tank top sported a fist-sized, grease stain on the front, at chest level. It was the kind of stain that would’ve been difficult to see under florescent lighting. Once sunlight hit the shirt, the stain flashed like neon. I wondered whether I should point it out. Lindsey didn’t like it when I critiqued her clothing.
I wanted Lindsey to look her best. I wanted to say something, to offer a bit of motherly advice. I peered down at my freshly-pressed, pink skort, my smooth shaven legs, my slight heels. I scanned my clean, pink floral top. What kind of mother will people think I am? I mean, with Lindsey dressed the way she’s dressed, and me, the way I am? Will they think that I don’t care about my girl? That I don’t offer guidance? My face felt hot; my hands tightened their grip on the leather-wrapped steering wheel. And what about the grease? Will people think I’ve never taught Lindsey how to remove stubborn stains?
Lindsey stepped into the car, and after several attempts, she fastened her seatbelt. I cautiously broached the subject of the grease-stained tank, starting with: “If I had a stain on my top, I’d want someone to tell me….”
Lindsey snapped her head in my direction, her eyes hardened. “I like this shirt,” she said without blinking. “I told you I was wearin’ a weekend outfit.”
I drove without speaking for several miles. The only noise: tires pressing against the hot July pavement. Lindsey and I definitely have different standards of what’s acceptable in public, I thought. But am I placing my so-called “fashion” standards on my daughter? Believe me, my standards aren’t all that high. I hate to shop. I’m not a Nordstrom’s girl. I shop Lands’ End. I have a limited wardrobe and wear the same outfits over and over. And as far as facial hair, I don’t pluck as often as I should either. I’ve driven down the highway many times, snuck a peak in the mirror and noticed a wild chin or neck hair reflecting back at me, and wondered, where in the heck did that come from?
That Sunday afternoon, Lindsey looked like one of the unkept shoppers captured in Walmart videos that are regularly shared on Facebook. She owns flattering clothes and dresses professionally for work. She acts confident in her clothing choices. Of course, when she’s with me, I’d prefer she wear grease-free clothes that fit her frame; I’d prefer she pluck or wax her brow rather than take a razor to her face. But at thirty-three years of age, maybe it’s okay for my daughter’s standards to differ from mine. Maybe I need to mellow with the motherly suggestions. Maybe this is my problem. At the end of the day, Lindsey certainly didn’t seem embarrassed walking through a department store dressed in her “weekend wear.”
I shared this story with a retired special education instructor. As a family friend, Jim has witnessed the dynamics between Lindsey and me.
“You’ve done an excellent job raising your daughter,” Jim said, complimenting me on how well Lindsey navigates within our community. “So many parents…”
“But what about her brows? Her sloppy clothing choices?” I interrupted, feeling shame for failing in these areas.
“You haven’t failed,” he said. “You can’t control everything Lindsey does. Many parents won’t let their kids, with or without special needs, try new or different things. They worry that their sons and daughters might not succeed. You let Lindsey live her own life–whatever the outcome. And you rarely make excuses for her actions.”
My spirit soared from his kind words. I thought about how I encouraged my daughter to have opinions, to live independently. If I choose to give her wings, then I also need to accept that she could potentially fly in a different direction than me. Some choices will differ drastically from her parents–just like typical daughters–and at times, our opinions will collide.
Lindsey isn’t the three-year-old who once allowed me to pick out the outfit I wanted her to wear. She isn’t the eight-year-old who let me brush her hair, weaving it into French braids. Nor is she the teen who allowed me to suggest several outfits at Macy’s that might flatter her figure best, or to tweeze her eyebrows in the privacy of our home.
No. My daughter is now a young woman who can make her own fashion statements. Lindsey doesn’t see the advantage of dressing in styles that will please her mother (nor should she) or to maintain her facial hair in ways I think are best (which still saddens me). But I need to realize and accept that her adult decisions are not a reflection of me. She is her own person. I am my own person. I’ve done my best.
In the end, I guess I’m not a fraud, a con artist, or a shell game operator. My daughter has far exceeded the OHSU doctor’s initial expectations. I’m proud of her accomplishments. And my concerns with sharing stories about how a special needs daughter has changed my life? Well, Lindsey certainly gives me plenty to tell.
*A representative payee is the person who manages someone else’s social security and finances.
My first book, Loving Lindsey: Raising a Daughter with Special Needs will be out September 26, 2017. If you would like to learn more, click here.
