The 10-year old 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 Woodrowwwwwww Wilson!” The comment sounds more like the introduction for a Chicago Bulls basketball player than a 4th grader giving a speech on the 28th president of the United States.
The audience giggles and my friend leans in close to whisper, “She is a riot!”
I smile big and roll my eyes as I watch my daughter yuk it up in front of roughly fifty parents and her classmates, only looking slightly nervous.
Of the thirty students giving speeches this morning, my daughter is the only one to perform it like a stand up comedy routine. She rehearsed her delivery to ensure a few laughs.
I hear the audience chuckle again as she tells them that Wilson accomplished a little more than just being a father to three girls. I know the speech verbatim as we practiced it for two straight weeks. As it often happens when I watch her “perform,” a slew of other phrases pop into my head:
“She will most likely have learning problems like dyslexia.”
“We are hopeful that 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 are prognoses from a slew of medical experts about my daughter when we weren’t sure how to help her as a struggling toddler with significant developmental delays.
As she passed the first year mark, I knew something was wrong. She did not possess any words and seemed extremely high-strung and frustrated. She was an early walker at 11 months, but she quickly transitioned to walking only on her toes. I often watched her play with her toys in odd ways and she did not seem interested in other children. The rise of autism was all over the news, and of course I was scanning the Internet trying to figure out what was wrong with my baby.
Doctors could not pinpoint what was actually wrong with my her, and we received a slew of mis-diagnoses: apraxia, dyspraxia, Sensory Processing Disorder, PDD-NOS, Asperger’s. The list was long yet never seemed to fit.
Over the course of the next four years, my daughter participated in a range of therapies, including speech, occupational therapy, physical therapy, social skills classes, developmental therapy and more. We saw progress, but our lead case manager prepared us that 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.
I sought solace by building friendships with other parents of children with special needs, other people who understood what we were going through on a daily basis. We compared therapists and shared books. We celebrated successes and offered shoulders to cry on when it was a trying day. We discussed how to deal with our “typical” children and our fears of what lay ahead.
What is it like to raise a child with special needs? Sesame Street writer Emily Perl Kingsley, mom to a son with Downs Syndrome, equated it to planning a vacation but the destination gets changed suddenly.
When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
That is what special needs parenting is like. Except I was fine not going to Italy, but I sure wanted to know where I was! I wanted answers. I needed to know where we were in my daughter’s journey so I did not feel so in the dark.
When she was almost five, we saw an orthopaedic surgeon to assess her legs since therapy was not helping. He told us our daughter had a minor case of cerebral palsy. In his opinion, although it did not show up on her MRI, she had experienced trauma in the womb that caused a neurological issue forcing her lower leg muscles to not function properly and interrupting communication with the brain to other regions. This, coupled with some tight tendons, caused her to be a constant, extreme toe walker (think all the way up on your toes, not just the balls of your feet). He also explained that of course her development was delayed. Could you imagine trying to spend your life balanced on your tippy toes and then 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 fine motor skills, but it was non-progressive, which is why we were seeing her developmental skills improve, albeit slowly.
We decided to aggressively pursue treatment for my daughter’s toe walking, which seemed to be a major issue for her both in developing motor skills and her confidence. The doctor would cut her Achilles tendons, elongate them, and then re-attach them in order to allow her to walk on her flat feet without pain. It was bittersweet when the doctor came out to tell us that she had one of the most severe cases he had ever seen, but felt it was successful.
Immediately after the surgery, she began to flourish in leaps and bounds. With a more centered core, it was easier for her to find words and process information for conversation. Her spatial awareness improved. Her sensory needs reduced and 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 peer group and required additional support in a few areas, she had surpassed all expectations.
The rush of clapping brings me back to the library, where I see my daughter’s braces-filled smile as she nods to the crowd, acknowledging the applause. My husband and I look at each other, grateful to see her exceed our expectations yet again.
After the last speech, the kids assemble for photos, and my daughter joins three of her friends, arms around each other, smiling for the iPhones snapping pictures at a rapid pace. It is hard to imagine her as a crotchety three-year old that could not even say, “More milk.”
Five years after her surgery, nine years after our first appointment to assess her development, my daughter no longer has what the State would deem “special needs.” She reads at an above average level and excels at math. Our time allocated for additional therapy is now used for horseback lessons and theater class. Kindness and compassion have replaced frustration when I describe her every day attitude.
Yet, sometimes, it is 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 a struggle to accept that her differences have now become her strengths instead of her handicap.
I know I am one of the lucky ones. It is unusual for a child with severe developmental delays to be so heavily impacted by a surgery or even years of therapies. For most, it is a life-long struggle.
I know we are lucky, and I am grateful for this. And although I wish my daughter’s beginning was less complicated, I am thankful for what I have learned, such as:
Opening up my eyes to the beauty of different.
Understanding that I am my child’s best advocate — and sometimes even highly educated, well-meaning professionals are wrong. Always believe you child can do more than what you are told.
Accepting that it is okay to take help.
Celebrating my daughter’s milestones on her schedule. Little things are always big reasons to celebrate.
Struggling can bring your entire family together, and can impact the kindness and compassion of all your children.
But most importantly, I learned to celebrate my daughter for who she is, and not worry as much about what she has.
My journey with my daughter hasn’t changed. I will still advocate on her behalf and continue to ensure she has all the resources to succeed in this life; however, I am slowly accepting that our path is headed in a different direction. We may be leaving Holland and headed to Italy.
There is a line in my daughter’s speech that she delivered with impeccable precision and compassion: “President Wilson struggled in school in his early years. His teachers thought he may have dyslexia, but he eventually overcame it.”
May similar words be spoken about my daughter one day as well.
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.
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