Sometimes I wonder if, instead of being an advocate for my daughter, I’m a huge obstacle.
But how can that be? I want what most parents want for their kids: for my daughter to be safe, loved, happy. I want her to make wise decisions. Translation: to make the same (or similar decisions) to ones I’d make.
Lindsey would say, as parents, we’re overprotective. But I don’t believe we are. After all, Lindsey is thirty-four. She has lived (most of the last fourteen years) on her own. And successfully, that is, if you asked my daughter. Most days, we’d agree with her. We’ve supported her major decisions: landing a job; living solo in her own apartment; marrying Nick.
Over the years though, Lindsey has asked–more accurate description: demanded–more freedom. My husband and I stepped back and watched from a distance, giving Lindsey space to prove she could get up, take her medications, and get herself to work on time. (And unless she is sick, she makes it to work by her scheduled start time at least ninety percent of the time.) Since I’ve not heard otherwise, I believe she is “maintaining” on the job. But I don’t call her work and check on Lindsey. I don’t ask The Boss, “How’s my girl doing?” I know (because Lindsey has told us) that The Boss has had conversations with our daughter when she misses too much work due to illness. Lindsey worries, says she might lose her job if she doesn’t try harder. And then she tries harder. For awhile. Yet I feel the conversations between The Boss and my daughter are between them. Unless we are asked to intervene, we don’t.
John and I used to take Lindsey grocery shopping. She carried a large, #10 envelope with cash from her recent paycheck and a plastic Oregon Trail Card (a.k.a. food stamps).
“Your grocery money must last two full weeks,” I reminded my daughter calmly, watching her tighten her grip on the grocery envelope and plastic card and glare at me. I ignored the glare as we walked Safeway’s aisles and made suggestions for cheaper options, healthier choices–ways to make her grocery funds last longer. We reminded her to try and stay within her budget (half the cash to be spent for one weeks groceries, the remaining for the next). Lindsey defiantly told us our help was not helping.
“Quit cramming your ideas down my throat, Mom.” Lindsey’s words were coated with irritation. “I’m not a child anymore.” To me, my advice didn’t feel like cramming. It felt like being a good mother, a parent who was attempting to teach a daughter with special challenges simple ways to be a responsible adult.
And although I initially disagreed with my daughter’s assessment, she may have been more right than I gave her credit for. When we strolled the aisles and Lindsey ignored all my suggestions, I tensed, causing my shoulders to ache. My daughter noticed my changed demeanor and stomped down the aisle, throwing two bags of Lay’s potato chips into the shopping cart.
What it comes down to is this: we often want more for Lindsey than what she wants for herself. I’m trying to accept that. And it’s hard, because truth be told, I think I know best.
Because of her federally recognized physical and mental disabilities, Lindsey qualifies for a state provider. One of the provider’s assignments is to take Lindsey grocery shopping.“My provider treats me like a grown up,” she told me when I opened my daughter’s freezer and found twenty boxes of frozen meals. “I feel lots more independent with her. She doesn’t get into my business.”
Having a provider makes our lives a lot easier.
Yet there is one area I’ve continued to struggle with. Big time. And that is: letting Lindsey have a walker. Several years ago, after a fall on a downtown sidewalk, my girl was transported by ambulance to Silverton Hospital. Abrasions and lacerations marked her face, but she had no broken bones. The next day, Lindsey sported a purple and black eye. After, Lindsey regualarly said she was afraid she’d fall again.
“I think I need a walker, Mom,” Lindsey told me, explaining that she felt unstable and anxious. That the streets seemed to move under her feet when she stepped–as if she were trying to walk during the middle of a violent earthquake. She said that the city’s curbs appeared to vibrate the minute she tried to step up or down. Lindsey shared that getting through a crosswalk had always been hard for her, mainly because of her tremors. But now, after the fall, she was far more fearful. Often, when Lindsey froze in the middle of an intersection and couldn’t make herself take another step, townspeople came to her aid. They’d extend an elbow and Lindsey grabbed on tight, nervously making her way to the other side of the street.
“I’m scared a car is going to hit me,” Lindsey shared her biggest worry. I gave my girl suggestions on how to cope: take a deep breath; once the driver nods telling you its okay to cross the street, start walking; keep your eyes in the direction you’re headed; don’t look around, just focus. But Lindsey wasn’t buying this advice either.
I finally told her, “If your doctor agrees, we’ll buy you a walker.” But back then, Dr. Blount didn’t agree. She said that when Lindsey fell, her anxiety skyrocketed. She told my daughter she needed to build up her strength. The more she walked, the stronger and more confident she’d become. I chewed on my lower lip, silently pleased Dr. Blount sided with me. But the doctor also shared more. Based upon Lindsey (and my descriptions) Dr. Blount diagnosed Lindsey with visual vertigo–a spatial disorientation that is common in persons with balance issues. And Lindsey certainly suffered balance issues when she was outside or in wide open spaces. In the comfort of her home, a store, an office, places with four walls, Lindsey could move about like someone high on speed. Dr. Blount prescribed anxiety medication and referred Lindsey back to Oregon Health Science University (OHSU), “just in case the January fall caused additional damage.” I worried. Had the tumble aggravated Lindsey’s condition? Could Lindsey have something worse than the tremors? Like Parkinson’s? Or muscular dystrophy?
After a month of tests, OHSU doctors agreed that Lindsey suffered from visual vertigo, but they found nothing to indicate my daughter’s other physical or mental disabilities had worsened. And she had no new debilitating diseases either. Quietly the doctor told me, “It appears to be all in her head.” Lindsey heard. After that, whenever anyone asked about her increased shakiness, Lindsey would say, “The doctors say it’s all in my head.” Then she’d shrug her shoulders, acting as if that diagnosis wasn’t bothersome to her at all.
Still, every chance she got, Lindsey requested a walker. I resisted and rationalized. If it was all in her head, did she really need one? I put her request on Facebook. Friends and family offered up ideas: Tie helium balloons to the handle; get her a bell; attach a horn on the bar and let her beep, beep, beep her way through town; cover it in glitter. A total of forty-seven clever responses were left on that post. Others didn’t seem bothered by the idea of a walker, but I could not wrap my head around it. I worried Lindsey might be insisting on a walker to get more attention (it wouldn’t be the first time). Yet, deep inside, I worried my ego was blocking my judgment. With a walker, would she appear more disabled than she was? If so, would she be a greater target for predators and unscrupulous people? Would she get used to a walker and never want to give it up?
Instead of a walker, I agreed to buy her walking sticks, hoping they’d stabilize her balance. For a year and a half, they did just that. Lindsey’s confidence increased. She shared no additional scary crosswalk stories. Then without warning, the rubber tips on her walking sticks completely wore off. When she placed the exposed metal ends on a wet store floor, instead of supporting her weight, the sticks slid in different directions, and Lindsey felt her bum land on a wet floor in a thud. Now Lindsey wanted a cane. She didn’t trust the walking sticks any longer. For a while, the cane worked great too.
Then two weeks ago, with that trusty cane by her side, Lindsey again froze in a downtown intersection and was unable to cross the street without assistance. It was time, I finally decided. I couldn’t let my daughter struggle any longer. I couldn’t keep depending on townspeople to rescue her. I no longer cared if the doctor agreed with this decision. I no longer cared about my idiotic ego. I only cared about Lindsey and her need to get around our small community with confidence.
I drove my daughter to Hi-School Pharmacy and Lindsey picked the first walker she spotted. “This is perfect!” she said, not noticing it was on sale. Wise choice, I thought as I watched my daughter lift the padded seat to find a basket that could carry groceries home from the store. Lindsey squealed and lifted the seat and set it back in place several times. She giggled when her hands gripped the brakes and the walker stopped in an instant.
Since then, Lindsey legs have zipped around downtown Silverton. She no longer freezes in
crosswalks or complains about the earth moving beneath her feet. Instead, a smile brightens her face as she pushes her walker up and down the sidewalks with a newfound confidence and purpose.
Recently I overhead Nick say, “You move so fast now, Linds.” He grinned, continued. “Do you have a license to operate that thing? You better slow down or you’re gonna get a ticket.” They laughed. Apparently my girl knew–all along–that this was the secret to helping her get around.
And through this process, I’ve realized that I need to listen to my daughter. But more important than listening, I need to hear her actual words, because in the end, Lindsey may actually understand–better than her mother (at least in some cases)–what’s best for her.
Fortunately, I’m only fifty-six. I’m hoping there’s still time for me to improve on being less of an obstacle and more of an advocate.
It’s been awhile since I’ve participated in Ten Things of Thankful. And I’ve missed you all. Every week I think: I’ll do a list this week, then life happens. Lately life has been hellish for Lindsey and Nick. My son-in-law has (barely) survived several horrific health issues that included two major surgeries in the last three months. Nick faces at least one more surgery, possibly in September. At times he’s felt like Humpty-Dumpty and says, “I just want to be put back together again.”
Lindsey has been suffering too. It’s hard on her because she struggles with comprehension issues. She doesn’t fully understand the gravity of Nick’s situation. She constantly worries and frets which is understandable. Any wife would. But besides the health issues, Nick has been getting far more attention (and rightfully so) than Lindsey. So unbeknownst to us, my daughter bought two weeks of groceries and ate everything in a few days. She had no food until her next payday–five days away. So we gave her more food and she ate five days of groceries in two days.) “Mom,” Lindsey said. “Food is my comfort.”
Then we learned she’d accepted rides from strangers, although we’ve talked and talked and talked about the dangers of this practice. Lindsey has promised not to do that anymore. She knows better than to accept rides. But now I worry, can I trust her?
Her doctor suggested that Lindsey should lose weight. Lindsey says she wants to try, but in the next breath says, “If I lose weight, I might become anorexic.” We assure her she is nowhere near anorexic. And instead of eating three regular, healthy meals a day, her dieting strategy is refusing to eat anything until dinner, then she eats with gusto (translation: gorges), gets a stomachache, and throws up. After years of positive strides, my girl has not been making wise choices. We’ve explained, charted goals, offered lists, asked her to speak to a counselor (and she has). For the past two months, we’ve seen (what seems to be) mental losses, instead of gains. So I’ve been discouraged. But we’re starting to see a few slender rays of hope.
So today I’m thankful for:
1) a recent dinner with Nick and Lindsey. Nick has been feeling better and up to socializing some. YAY! And he has moved from his parent’s house back into the home he and Lindsey share. That is a great reason to shout out loud, Whoop! Whoop!
2) Nick’s sense of humor. It is coming back. He made us laugh over and over. Then the couple spent moments looking into each other’s eyes and whispering. Sweet.
3) Lindsey’s restraint. She requested reasonable portions of fresh green beans, salad, and hearty dinner casserole. She stopped eating before her stomach hurt. We all gave her a thumbs up!
4) food in their fridge and pantry. When I dropped her off, I checked out the fridge, freezer, and pantry. There was food in all three. Another Whoop! Whoop!
5) food money on her Oregon Trail Card and in her grocery envelope. She has budgeted better this month–she has enough to last her until her next payday. Maybe things truly are turning around in our world. Crossing fingers. (We (and her caseworker) will continue to work with Lindsey on these issues (when she will let us) until we are certain she is back on track and can handle the various responsibilities of adult life.)
6) Nick cut his hair! Short. Although he didn’t want me to take a picture at this time, I assure you–he is one handsome dude! I can see why Lindsey is crazy about him.
Now onto other things I’m thankful for:
7) a recent trip to Whistler, Canada. The scenery is magnificent and every time we go (which isn’t often) we vow to come back sooner, rather than later. These mountains provide me a sense of serenity–a place to mentally heal. I can think about things (and appreciate them) that are going right in my life when sometimes it feels like more things are going wrong. I love Whistler.
8) The Whistler bears. I took a three-hour bear tour with Michael Allen and saw eight bears close up and three from a far. A total of eleven bears on this trip.
9) the two mama bears–one with a single cub, and one with two cubs. Neither seemed afraid of us or demonstrated any aggression either. Everyone in the tour was able to get out of Michael Allen’s truck and snap some cool photos. In one case, we were within twenty feet of these bears.
10) and besides the photos, I captured this thirty-seven second video of one of the cubs. He wasn’t paying any attention to his mama or sibling. Instead, he continued to munch on alpine clover long after his mama and sibling crossed the road. Suddenly he realized he was alone and ran to catch up. I don’t profess to be the best videographer, but I was tickled to capture this on film. I’m sure you can tell by now, I am also head-over-heals in love with the Whistler bears.
So thanks everyone, for not giving up on me and allowing me to pop in and out of Ten Things of Thankful when I can. I’m trying to respect the things that Nick and Lindsey want kept private.
For better, for worse, for richer, for poorer, in sickness and in health.
Those were the words Lindsey and Nick recited to each other just eighteen months ago. Who knew that the sickness part of their vows would get here so soon.
“I wasn’t expecting this,” thirty-three-year-old Lindsey said. “My husband has a good immune system. He’s mostly healthy.”
But the last week of March, thirty-six-year-old Nick was rushed to Silverton Hospital with severe pain in his abdomen. Two surgeries later, he is now healing from incisions across his mid-section that will eventually leave wicked-cool scars. At least that is how his mother worded it, attempting to lighten the mood in Nick’s hospital room.
“Battle wounds,” Nick said, a weak grin plastered across his face, his finger pointing toward his abdomen.
Lindsey was almost three when we brought her little brother home from the hospital. She couldn’t get enough of Michael’s tiny mouth, nose, and ears. Whenever I turned my head, Lindsey poked her fingers in them.
“Be kind, be gentle,” I’d say, reminding her over and over again.
“OK,” she’d say, then quickly poke a finger in his other ear.
Lindsey’s little brother isn’t so little anymore. This month he will celebrate his thirty-first birthday. And although this is a blog about parenting a daughter with special needs, our entire family was affected (in a multitude of positive and not-so-positive ways) by Lindsey’s specialness.
I think I just might be the luckiest girl in the world right now.
This week I’m thankful for (in no particular order):
(1) San Pancho, Mexico
(2) Palm trees
(4) Mexican food, i.e. fresh guacamole
(5) Mexican tunes
(6) Good friends
(7) Mexican sunsets
(8) Vibrant house colors of Mexico
(9) Vibrant flower colors of Mexico
(10) Safe travels.
Happy Sunday to all of you.
I believe in dreams. And so do Vincent and Celestial Noot (pronounced Note).
Vincent grew up in the Netherlands; Celestial in Utah. Vincent had three siblings; Celestial eight.
“It’s not easy to get noticed in a large family,” Celestial said. “Sometimes I felt there wasn’t enough attention to go around.” Celestial often helped her parents by watching the younger children, and although all her siblings seemed to blend together, there were a lot of fun times being part of a big family. “But I didn’t always get to do my own thing,” she added.
In Vincent’s family, individuality was encouraged, and Vincent loved art. As a kid, he spent hours searching the action-filled pages of Where’s Waldo?. He wished there were more of these hardbacks out there. Even as a youngster, Vincent dreamed of creating a search book, with his own drawings, his own characters, his own story.
Vincent’s parents witnessed their son’s talent. When he was old enough to attend a university, they supported his decision to study art in Belgium. There he learned to fine-tune and layer his work and make it pop on the page. After school, he moved back to the Netherlands and met a daycare owner who wanted some unique cartoon characters that captured her vision of caring for young children. The artwork had to stand out and distinguish her business from all the other childcare centers in the vicinity. Vincent created characters that the owner featured on posters, pamphlets, board games, and even her website.