Changes afoot as we reflect on our daughter’s school journey
As she's blossomed socially and gained independence, we've chosen a next step
With just two weeks left in the school year, my wife, Judy, and I find ourselves reflecting deeply on how far our daughter, Rylae-Ann, has come. It feels like just yesterday we were coaxing her through tearful goodbyes at the classroom door, navigating the daily challenge of separation anxiety and morning meltdowns. Thankfully, Judy works at the same school and was never too far away, offering us comfort and Rylae-Ann a sense of security.
In the beginning, Rylae-Ann needed a full-time shadow teacher to support her daily routines. Her neurotransmitter disease, aromatic l-amino acid decarboxylase (AADC) deficiency, required her to have extra support to carry her bag, transition between classes, and even use the bathroom. It was a necessary support system at the time, even after her gene therapy, but it highlighted how different her needs were from those of her peers with no rare disease.
And then, something beautiful happened.
Rylae-Ann enjoys her time at the school playground. (Photo by Richard E. Poulin III)
With each passing month, Rylae-Ann’s confidence grew. One day, she found her voice and firmly told us she no longer needed her shadow. She yearned for independence and insisted on doing things on her own. We listened. We trusted her. And she blossomed.
Today, she walks the school halls independently, sometimes venturing off to explore, requiring us to occasionally track her down! She now cries when it’s time to leave school because, like any child, she wants just a few more minutes with her friends and on the playground.
As parents, we’re incredibly proud of Rylae-Ann’s social and emotional growth at school. The nurturing environment created by her teachers and classmates has helped her grow into a brave, curious, and joyful learner.
Yet despite her incredible strides in soft skills, we’ve had to recognize a more challenging truth: Her academic progress has largely come from Judy’s work with her each day after school.
A new pathway
While Rylae-Ann has shown remarkable perseverance, a noticeable gap exists between her and her peers in certain academic areas, especially in reading and writing. Grade 2 places a greater emphasis on literacy, and though the school has done much to support her, she often feels the weight of stigma when support teachers enter the room. When assignments become difficult, she tries to hide her struggle and pantomime movements of doing work instead of asking for help.
This realization has brought us to a difficult yet purposeful decision to take a new path.
We’ve chosen to transition Rylae-Ann to homeschooling for the remainder of her elementary years. Our goal is to close her academic gap without the weight of comparison or the pressure of stigma. We want to give her the time, space, and personalized instruction she needs to build strong foundational skills, so she’ll be fully prepared for middle school, high school, and eventually, the world beyond.
This decision is not a step away from school; it’s a step toward a new kind of learning, one that honors her unique pace and needs. We hope it will empower her to become an independent citizen and a productive member of society.
As we approach the final week of school and embark on our summer adventures, our hearts are full of gratitude for the teachers, staff, and friends who’ve been part of Rylae-Ann’s journey. Saying goodbye is never easy, but we’re ready to take this next step in our journey as a family filled with hope, love, and a deep belief in our daughter’s potential.
Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.
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