Why These Parents Celebrated Every Bit of Progress
Mom of a special-needs daughter advocates for acknowledging the journey, rough patches and all
My daughter lives in her own apartment. She files paperwork part-time at State Farm Insurance, working in a back room away from clients. She is 37.
With a huge grin on her face, she will tell anyone who asks, “I work full-time, two hours a day.” Why is this remarkable? Wouldn’t most 37-year-olds be living independently at this point in time?
It is rather remarkable, though, because our daughter has disabilities. As far as we could tell, Lindsey was born healthy. At 16 months of age, she suffered a grand mal seizure. After that she developed essential tremors. She had difficulty in building friendships and in getting along with kids her own age; she struggled in preschool.
My husband, John, a middle school teacher, and I felt something was terribly wrong. We started searching for answers, yet it wasn't until 1986, when Lindsey was six, that Oregon Health University doctors diagnosed her as developmentally disabled from an unidentified syndrome, most likely from a birth defect.
They said she had a short in her neurological system and would never process information the same way as her peers. The day they delivered that news, the doctors also suggested that when Lindsey reached adulthood, she would likely live in a group home. That was not a prediction I wanted to hear.
Lindsey's tremors challenged her ability to write legibly and perform other fine motor tasks. Still, my husband and I expected her to try her hardest. These were the same requirements we had for our son Michael, three years younger and more "typical."
Lindsey thrived on independence and raged when she had none, even as early as first grade. During the first few mornings of that school year, my seven-year-old kept getting sidetracked as she readied herself for the school day. I was afraid she would miss the bus. When my patience wore thin, I snapped at her to hurry up.
"Don't tell me what to do!" she said, stomping from room to room. Books and a backpack banged against the wall in her bedroom. "Why does she always tell me what to do? I hate it. I'm not a baby."
"I'm tired of your bad attitude," I said, wanting to keep my frustrations in check but failing. "I'll make you a list."
I jotted down her morning routine. "You'll be responsible for yourself. I won't nag you in the morning."
Lindsey smiled. "I like that idea. I don't like to be bugged."
That afternoon, I bought a clock radio for her room. "How much time do you need, Linds?" John showed her the dials, the volume, the snooze. She kept working the dials herself, her hands shaking, until she got it.
I typed up her morning tasks:
- Wake at 6:15 a.m.
- Eat breakfast.
- Take medicine.
- Brush teeth.
- Comb hair.
- Get dressed.
- Gather books and backpack.
- Be at bus stop by 7:30 a.m.
The next morning, I watched Lindsey carry her list to the table. At breakfast, she recited the words aloud.
When she headed out the door and hollered, "Bye, Mom. I love you," I saw her smile. Seconds later, as the big yellow school bus pulled up, I watched her step up to it — and blew her a kiss.
As time passed, her mood improved, as did her independence. One morning I hugged her. "I'm proud of you. You're doing such a great job!"
Lindsey wrapped her arms around my neck. "I love you, too. And I love my list."
After that, we did whatever we could to give her the independence appropriate for her development. The strategy seems to have worked: She received many awards for perfect attendance while she was in public school.
Now, in her late 30s, she's held her part-time position for over 10 years. Whenever we overhear her tell someone, "I work full-time, two hours a day," we couldn't be prouder.
Linda Atwell, based in Silverton, Oregon, earned her BA from George Fox College; her writing has appeared online and in print. Her first full-length work, "Loving Lindsey: Raising a Daughter with Special Needs," will be published in September.