When the Special Needs Journey Ends
The lanky girl with the top hat and glasses slides up to the podium. Forgetting to adjust the microphone, she leans down and loudly exclaims, “Do you know which president’s real name is Thomas? That’s right, it’s Woodrooooooooow Wilson!”
The statement sounds more like the introduction for a Chicago Bulls basketball player than a fourth grader giving a speech about the 28th president of the United States.
The audience giggles, and my friend whispers to me, “She’s a riot!”
I smile big and roll my eyes as I watch my daughter yuk it up in front of roughly 50 parents and her classmates. Of the 30 speeches this morning, my daughter is the only one to perform it like a stand-up routine.
The audience chuckles again as she tells them Wilson accomplished a little more than “just” being a father to three girls. As it often happens when I watch her, a slew of other phrases pops into my head:
“She will most likely have learning problems like dyslexia.”
“We are hopeful she may live a normal life.”
“You need to prepare yourself for a long road ahead.”
These aren’t phrases out of a carefully written speech; instead, they’re prognoses from medical experts regarding my daughter’s significant developmental delays.
I knew something was wrong at the first-year mark. She did not possess any words and seemed extremely high-strung and frustrated. She walked on the balls of her feet. I watched her play with toys in odd ways, and although she bonded with her family, she was completely uninterested in other children.
Doctors could not pinpoint what was wrong with her, and we received a slew of misdiagnoses: apraxia, dyspraxia, Sensory Processing Disorder, PPD-NOS, Asperger syndrome. The list was long, yet nothing seemed to fit.
Over the next four years, my daughter participated in a range of therapies, including speech, occupational and physical therapy, social skills and more. We saw progress, but our lead therapist felt she would most likely need an aide when she started kindergarten.
“Whatever it takes,” I responded, but I felt dejected and helpless, like we were on a hamster wheel running to nowhere.
What is it like to raise a child with special needs? To paraphrase “Sesame Street” writer Emily Kingsley, mom to a son with Down Syndrome, it is something like this:
When you’re going to have a baby, it’s like planning a fabulous vacation to Italy. You buy guidebooks and make plans… It’s all very exciting.
After months of anticipation, the day finally arrives… but when the plane lands, the stewardess says,“Welcome to Holland.”
“Holland? What do you mean Holland? I signed up for Italy.”
But there’s been a change in the flight plan, and Holland it is.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place. It’s just a different place.
She was right. I was fine not going to Italy, but I needed to know where we were in my daughter’s journey so I didn’t feel so in the dark.
When she was almost 5, we saw an orthopedist to assess her legs since therapy was not impacting her toe walking. As I sat across from him with tears streaming down my face, he explained that our daughter had a minor case of cerebral palsy. She most likely experienced trauma in the womb that caused a neurological issue forcing her lower leg muscles to function improperly and interrupting communication with the brain to other regions. Combined with extremely tight tendons, this caused her to be a constant, extreme toe walker and impacted her ability to process information.
While the news was a shock, I was relieved at the same time. The peg finally fit in the hole. CP often causes issues with speech and motor skills, but it was non-progressive, which is why we’re seeing her developmental skills improve.
We decided to pursue a surgical option to treat her toe-walking, as it had the highest success rate. The doctor would cut her Achilles tendons, elongate and then re-attach them to allow her to walk on her flat feet without pain. It was bittersweet when he told us she had one of the most severe cases he’d ever seen but felt the surgery was successful.
Immediately after, she began to flourish in leaps and bounds. With a more centered core, it was easier to find words and process information. Her spatial awareness improved, and her sensory needs decreased. She expressed a desire to learn to read. She became more confident and easier to deal with since she could now communicate her wants and needs.
On her first day of kindergarten, she walked through the door on her flat feet and without an aide. Although she was still behind her peers and required support in a few areas, she surpassed all expectations.
The rush of clapping brings me back to the library, and I see her braces-filled smile as she nods to the crowd, acknowledging the applause.
Five years after her surgery, nine years after our first appointment to assess her development, my daughter no longer qualifies for what the state would deem “special needs.” She reads at an above-average level and excels at math. Our time allocated for therapy is used for horseback lessons and theater class. Happiness and kindness have replaced frustration when I describe her attitude.
Sometimes it’s hard to let go of the past, the life I lived as a special needs parent. It’s hard not to worry each time she doesn’t understand a piece of homework or struggles to find the right words. It’s hard not to obsess over any small idiosyncrasy or awkwardness. It’s difficult to accept that her differences have now become her strengths. It’s unusual for a child with severe developmental delays to improve so much from a surgery or even years of therapies.
I wish my daughter’s beginning was less complicated, but I’m thankful she opened my eyes to the beauty of different. This “trip” taught me to celebrate my daughter for who she is and not worry as much about what she has.
My journey with her hasn’t changed. I will still advocate on her behalf and ensure she has the resources to succeed in this life; however, I’m slowly accepting that our path heads in a different direction.
Maybe we’ll get to Italy, but if not, I’ll just enjoy the trip traveling beside her.
Author note: Special needs parenting is hard. In no way do I want to portray that most kids can outgrow their developmental delays or diagnoses. This is only a reflective essay regarding my experience with my daughter.
This post originally appeared on Playdates on Fridays.
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