How we ensured our daughter’s success on her first day of first grade
An old strategy helped us prepare both her and her new teacher
As the summer days grew shorter and the start of first grade loomed closer, we found ourselves reflecting on the journey that had brought us to this moment.
My wife, Judy, and I remembered the days before our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, when we were still searching for answers. In those uncertain times, we started documenting every milestone, every smile, and every struggle through pictures and videos, saving them to online cloud storage. This simple act of preserving memories became a powerful tool to help doctors understand what we were seeing at home.
Rylae-Ann underwent several tests that required her to be poked and examined. She was misdiagnosed with various conditions and took an array of medications that either did nothing or made her symptoms worse.
Fortunately, we finally discovered she had AADC deficiency, and she was able to undergo gene therapy. Since then, she’s made extraordinary progress and spent last year at an independent kindergarten. Yet she still faces challenges, specifically anxiety.
That anxiety became so bad that it pushed Judy and me to the brink of our patience. By the end of kindergarten, we wondered if all this work was worth it and if Rylae-Ann wouldn’t be better served by an alternative educational setting. During the summer, we began to research our options.
Researching education options
We currently live in Bangkok. This country, Thailand, is amazing and known for its hospitality, travel destinations, and affordable lifestyle. The affordable costs also extend to Rylae-Ann’s medical care and paramedical treatments, which aren’t covered by our insurance. We pay these costs out of pocket because AADC deficiency falls under the notorious congenital disorders clause in insurance policies.
One drawback of Thailand is that special education and inclusion are not yet up to U.S. education standards. We’ve met many families facing a similar situation of being unable to find the ideal educational environment for their children with challenges. Options were limited, and the existing choices didn’t seem better than continuing with her current school.
Preparing for the first day of school
Rylae-Ann works independently with a peer on the first day of first grade. (Courtesy of Richard E. Poulin III)
When it came time to prepare for Rylae-Ann’s first day of first grade, we knew we needed to ensure her new teacher was ready to support her in the best possible way. Drawing on the success of our earlier strategy, we created a folder on Google Drive filled with media that captured Rylae-Ann’s journey. We included videos of her proudest moments, pictures highlighting her bright and curious spirit, and notes detailing her challenges and how we’ve worked together to overcome them. We wanted her teacher to see the whole picture, not just rely on our ability to explain her rare disease effectively.
On the first day of school, Rylae-Ann was a bit timid as she walked into the classroom. There were a few tears as she adjusted to the new environment, surrounded by unfamiliar faces. But her teacher, having taken the time to review the media we shared, was prepared. She greeted Rylae-Ann with a warm smile and an understanding that made all the difference.
By the second day, the change was remarkable. Rylae-Ann walked into the classroom with a sense of confidence and excitement that reassured us we were on the right path. The strategy we’d used before — capturing her journey and sharing it with those who would play a crucial role in her life — had paid off once again.
As we continue exploring the possibility of homeschooling or alternative education, we know that Rylae-Ann’s first grade success will play a significant role in our decision-making. For now, we’re grateful for her progress and the strategies that have helped her thrive. The journey continues, and with each step forward, Rylae-Ann continues to amaze us with her resilience and strength.
Rylae-Ann proudly poses with her mom after the first day of first grade. (Photo by Richard E. Poulin III)
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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