Jen Shepherd, a mom with a daughter on the spectrum, opens up about the challenges her family has faced. From the tough moments of uncertainty to the victories that made it all worthwhile. Along the way, she’s learned the power of patience, advocacy, and unwavering love.
Through every struggle and milestone, Jen has been there, cheering her daughter on and finding joy in her successes. She hopes that her story encourages other parents and reminds them that, with support and determination, incredible things are possible.
What’s bugging you?
“Why is your hair moving?” I asked my twelve-year-old daughter as she sat at our kitchen table eating a bag of popcorn, her favorite after-school snack.
“What do you mean, ‘moving’?” she replied in that innocent way she learned to master so well.
Feeling my cheeks flushed with stress, I came closer to inspect Sophie’s head.
“Oh my gosh, it’s lice,” I said, louder than I intended. “How long have you known about this?”
Sophie smiled sweetly and looked at me with big, green eyes. “A few days, maybe,” she said. “Or a week? Why does it matter?”
With two daughters in middle school and one son in high school, I always considered myself lucky that no one ever came home with lice. And if they did, I assumed they would tell me immediately. Well, maybe two out of three kids would.
With Sophie, I never knew what to expect. Every day – every moment felt like a mystery I had to solve.
“Didn’t you see the bugs when you combed your hair?”
“Well, yes, I did see them, Mom. But I figured they’d go away when they were ready,” she said, sitting on the chair and swinging her legs happily. Sophie continued eating her snack without a care in the world while hundreds of tiny bugs feasted on her long brown curls.
The trip to Walgreens was traumatic. I cried at the register while buying medication and supplies, desperate to rid our house of lice. I asked myself why these things always happen to us. Did other families have the same issues with their kids?
I realized then it wasn’t the lice that upset me. I was upset that Sophie did not grasp the situation’s magnitude.
Navigating through triggers
Just before Sophie turned seven in 2007, my husband and I separated. Little did we know how complicated things were about to get.
After setting up a visitation schedule so our three kids could see their father on weekends, it became clear that Sophie didn’t appreciate the new arrangement. She thrived on routine and struggled with transitions.
Sophie let her feelings be known with a series of meltdowns and bad behavior. Every Friday afternoon, my usually sweet girl began whipping her sneakers against the living room wall, screaming at the top of her lungs, “I’m not going to Dad’s.”
Eventually, my ex-husband had to come inside and physically remove her as she kicked and bawled out the front door. I knew something wasn’t right with our daughter, but I dismissed the thought, convincing myself she just wanted attention.
Our family has learned how to navigate life with Sophie through the years. We paid attention to the ever-present triggers that might set her off.
I’d only run the vacuum while she was at school. Tags were removed from new clothes. I was choosy about which of Sophie’s classmates to invite over, as some could be mean and didn’t understand my daughter played differently.
Social cues, specialists, and the system
On the first day of kindergarten and every day after, I worried about her trips on the school bus. Could she defend herself against a bully? As it turned out, Sophie had no idea how to stand up to these kids.
One day, a girl twice her size physically assaulted Sophie, twisting the skin on her wrists until they bled and bruised. Back then, my nervous system was always on high alert.
At the beginning of fifth grade, I brought Sophie to see an autism specialist. After receiving the results, I slumped in our minivan, called my ex-husband with the news, and then cried for ten minutes.
The next day, I scheduled a meeting with Sophie’s teachers, hoping to create a plan to help her better understand social cues.
“Unfortunately, your daughter is too advanced academically and emotionally to take part in our support group. She wouldn’t feel comfortable,” the school counselor told us.
Insurance didn’t cover a private therapist, and we weren’t in the financial position to pay out of pocket. Without resources, how could we help Sophie function and thrive? It was a frustrating time. I was so angry at the system.
Siblings and support
My other children understood the situation and were protective of their youngest sibling. Sophie’s brother advised her on how to be cool at school, and her sister helped pick out clothes that matched.
I was grateful to them for taking the time to teach Sophie how to fit in.
Sophie was smart and scored high on standardized testing (she was doing ninth-grade math in fifth grade). Still, I worried about her future, her lack of common sense, and the naïve way she viewed the world.
“It’s so unfair,” I ranted to my friends. “How will she live in a dorm someday and have roommates if she doesn’t understand how to be a friend?”
People were supportive and encouraging, but they weren’t in my shoes. Most days, I felt very much alone raising a kid on the spectrum.
Skills and success
Years passed, and I noticed some wonderful new skills emerging as Sophie became a young woman. She developed a fierce love of music, dance, and theater. Sophie embraced these creative activities with great enthusiasm.
They became healthy outlets for her frustration. In high school, to everyone’s surprise, Sophie was chosen as a lead in the fall play.
That same year, while studying with a voice coach, she came home beaming and announced, “Mrs. T. said I have perfect pitch.” Sophie could memorize and identify notes with extreme precision.
Each time my daughter looked happy and accomplished, it gave me hope. I could almost see a light at the end of that dark tunnel.
In 2013, I met the man who would become my second husband. When I introduced him to twelve-year-old Sophie, I wondered how he’d feel about dating a woman with a kid on the spectrum. To my relief, the two hit it off right away.
Before we got engaged, I told him Sophie may never go to college and might have to live with us forever. I thought that would surely scare him off. Instead, he embraced my daughter in a way that touched me to my core. And she adored him.
Two years later, we married and became a blended family of seven.
Turning challenges into triumphs
Sophie graduated college in 2021, earning the highest honors and being accepted into one of the best graduate programs in the country. As a student, she lived in an apartment by herself and did remarkably well. She had a boyfriend for a time and made some close friends on campus.
This year, Sophie will walk across the stage to receive her master’s degree in Speech-Language Pathology, again meriting the highest honors.
The last twenty-three years have been challenging, but I’ve learned that anything is possible if we keep going, keep focused, and keep loving these kids. Just look at our girl Sophie.
This article was featured in Issue 170 — Autism Increasing Around the World.
If you have a success story you would like to share with us and our readers, you can email it to us or submit your story here.
The post Autism Success Stories: From Challenges to Triumphs appeared first on Autism Parenting Magazine.
Get a FREE issue of Autism Parenting Magazine at https://www.autismparentingmagazine.com/freegift/
