Taking a step back, so our child with AADC deficiency can move forward
For Rylae-Ann's move to traditional school, we placed her a grade below her age
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My wife, Judy, and I have learned that raising our daughter, Rylae-Ann, rarely involves following a straight path. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurotransmitter disorder that once prevented her from holding up her head, sitting independently, or speaking. After receiving gene therapy in 2019, she began achieving milestones we had once only prayed about.
Her latest milestone has been returning to a traditional school environment. To support that transition, we decided to place her in grade 2, one grade below where she would typically be based on her age.
One step back
The phrase “putting her back a grade” initially felt uncomfortable to us. It sounded as though she had failed or was moving in the wrong direction. However, as educators, Judy and I know that a grade level is not a judgment of a child’s intelligence or potential. It is simply a placement intended to give that child the best opportunity to learn. Also, the sooner the change is made, the better for the student.
Rylae-Ann’s academic abilities do not fit neatly into a specific grade-level box. She excels in reading and can confidently tackle books beyond what many might expect. Reading is one of her greatest strengths, and it has opened a world where she can explore, imagine, and learn independently.
Rylae-Ann now attends an international school in Thailand, where she practices writing in English, Thai, and Chinese. (Courtesy of Richard E. Poulin III)
Writing is more challenging. She has wonderful ideas, but putting those thoughts onto paper requires additional time and support. The physical demands of handwriting, organizing her ideas, and constructing sentences can make a simple assignment feel like a marathon.
Mathematics presents a similar mixture of strengths and gaps. She has performed wonderfully in many areas and often surprises us with what she understands or how she solves problems. Still, some foundational skills need reinforcement. Moving ahead too quickly could cause those smaller gaps to grow into larger ones.
Then there is physical education (PE), which is easily her favorite class, second only to recess time. Rylae-Ann loves to move, participate, and be part of the action. Considering that she once could not sit independently, watching her eagerly join PE still feels miraculous. She may not be as fast or agile as her classmates, but few students enter the gym with more determination.
These differences led us to consider more than her birthdate. We considered her confidence, independence, emotional readiness, and ability to experience success.
Two steps forward
By placing her in grade 2, we created space for her to strengthen the skills she is still developing, while she continues to shine in the areas where she excels. She can read with confidence, build stronger writing and math foundations, and participate physically without constantly feeling that she must catch up.
Most importantly, she sees herself as capable.
Closing an achievement gap does not mean focusing only on what a child cannot do. It also means creating opportunities for that child to recognize what they can do. Success builds confidence, and confidence encourages children to attempt the next difficult task.
For Rylae-Ann, repeating a grade is not about lowering expectations. Our expectations remain high. We simply adjusted the timeline and provided a more supportive starting point.
Her journey has already taught us that development does not follow a calendar. Progress can arrive slowly, suddenly, or in an entirely unexpected order. Sometimes, the bravest educational decision is not pushing a child forward because of their age. It is giving them the time, support, and opportunities they need to move forward with confidence.
Rylae-Ann may be repeating grade 2, but she is not going backward. She is building a stronger foundation for everything still ahead.
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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