Breathing easier after my daughter’s successful first week at school
I debated enrolling Rylae-Ann in my school, but eventually gave in
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Our daughter’s journey has never been a straight path, and if there is one thing my wife, Judy, and I have learned, it is to always have a full tank of adaptability and perseverance.
Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurological disorder that made it difficult for her to move, eat, and communicate. After receiving gene therapy at 18 months old, she began an incredible journey of gaining control of her body, learning to sit, stand, walk, and express herself.
Her journey through school has also not followed a straight line. It has been more of a meandering road, with a few unexpected turns, several passionate family discussions, and at least one husband eventually admitting that his wife was right.
Rylae-Ann first attended the school where Judy worked. She began with a shadow teacher, but it did not take long for her confidence and independence to grow. For three years, she did wonderfully socially. She knew her classmates, joined the community, and developed meaningful relationships.
However, we began to notice that her academic achievement gap was widening rather than closing.
Making preparations
Judy then made one of the bravest decisions of our journey. She resigned from her position and opened Pathway Educational Center. Pathway provided individualized, holistic learning for students like Rylae-Ann in the morning. In the afternoons and on weekends, it supported students attending mainstream schools.
Rylae-Ann thrived there. She knew everyone, greeted parents as they arrived, and acted as if she were part student, part receptionist, and part assistant principal. More importantly, she began closing the achievement gap.
That success led Judy to begin discussing whether Rylae-Ann, now 8, should return to a traditional school setting, this time at my school. As two passionate educators, Judy and I approached the decision calmly, quietly, and without strong opinions. That is not true at all.
We debated. We questioned. We analyzed every possible benefit and challenge. Eventually, my wife won the discussion, which she would probably describe as me finally recognizing the obvious. Rylae-Ann was enrolled.
During June and July, we traveled together as a family. Still, every day also became an opportunity to prepare her for the new schedule, routines, expectations, and environment. We wanted the change to feel exciting, not overwhelming.
Ready to take on the world
Rylae-Ann, 8, prepares for her first day of school. (Courtesy of Richard E. Poulin III)
Then the first day of school arrived on Aug. 3. I went in early because the first day is busy for every staff member. Later, I made my way to the front gate to greet excited families, including my own.
At first, I did not recognize Rylae-Ann. I saw a beautiful little girl running toward me with a huge smile. Judy had styled her hair so it was fashionable but out of her way. She wore a bright new uniform and carried a school bag over her shoulders.
She looked ready to take on the world. I was clearly more nervous than she was.
Each afternoon that week ended with the same wonderful combination: a big smile and very tired eyes. She came home excited to tell Mom about her day and call her grandparents to share the latest news.
The most important realization for us was just how deeply the school community cared for her. Cleaning staff, security guards, teaching assistants, teachers, and administrators all checked on Rylae-Ann. They did so not because I asked for the special privilege, but because they know my family’s journey. Throughout the week, people happily stopped me to share a story about something she had said, tried, or accomplished.
We have worked for years to prepare Rylae-Ann for moments like this. This week reminded us that successful inclusion is not only about preparing a child for school. It is also about having a school community ready to welcome, support, and believe in that child.
They made Rylae-Ann’s first week special. They helped her feel safe, capable, and included. They also made a nervous father breathe a little easier.
Unfortunately, they also left me with no escape from saying the three hardest words to my wife: You were right.
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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