The first fight against AADC started on the floor with tummy time exercises
We learned our daughter's early struggles weren't just her being a fussy baby
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Before we had a diagnosis, before we understood words like “neurotransmitters” or “genetic mutations,” my wife, Judy, and I were just doing what new parents are told to do. We put our daughter on her stomach and encouraged her to lift her head.
Tummy time. Simple in theory. Not so simple in practice.
Rylae-Ann didn’t enjoy it at all. She would cry, struggle, and end up face down on the floor, screaming. At the time, we thought we were just dealing with a fussy baby. Looking back, those moments were early clues of something more.
When we eventually learned that Rylae-Ann had aromatic l-amino acid decarboxylase (AADC) deficiency, everything started to make sense. AADC deficiency affects the body’s ability to produce key neurotransmitters like dopamine and serotonin. Without these, the body struggles to regulate movement, mood, and basic function.
For Rylae-Ann, that meant low muscle tone, delayed motor development, difficulty controlling her head and trunk, excessive sleepiness, and episodes where her body just wouldn’t cooperate the way it should. Tummy time wasn’t just uncomfortable; it was physically demanding in a way most babies never experience.
Importance of tummy time
Rylae-Ann lifts her head as she lies on a U-shaped pillow as part of her tummy time exercises. (Photo by Richard E. Poulin III)
But tummy time also became one of the most important things we could do.
We didn’t know it at first, but tummy time would become a cornerstone of how we helped her build strength and begin closing the developmental gap. This was one of the first exercises we started with Rylae-Ann.
The benefits of tummy time are well known for all children. It strengthens the neck, shoulders, and core. It builds the foundation for rolling, crawling, and eventually walking. It helps prevent flat spots on the head and supports sensory development.
For a child with low muscle tone, those benefits aren’t just helpful. They are essential.
We had to adjust our mindset quickly. Traditional tummy time expectations didn’t apply. We weren’t aiming for long stretches. We were aiming for consistency, creativity, and small wins.
We broke it down into manageable moments throughout the day.
Tummy time routine
One of the first things we learned was that positioning matters. Instead of placing her flat on the floor, we often used our own bodies. Chest-to-chest tummy time became a game-changer. I would lean back slightly, place Rylae-Ann on my chest, and talk or sing to her. She would naturally try to lift her head to look at me. It felt less like therapy and more like a connection.
Rylae-Ann performs a tummy time exercise with her mom. (Photo by Richard E. Poulin III)
We also used rolled towels and U-shaped pillows under her chest for support. This slight elevation reduced the effort needed to lift her head and allowed her to experience success earlier. For a child who struggles, success is everything.
Mirror play was another favorite. We placed a small mirror in front of her during tummy time. Babies are naturally drawn to faces, even their own. That curiosity encouraged her to lift, turn, and engage.
We incorporated toys, but not just any toys. Light-up toys, musical toys, anything that gives immediate feedback. When she made even the smallest movement, the toy responded. Cause and effect became a powerful motivator.
Side-lying play was also part of our routine. For children with low muscle tone, jumping straight into tummy time can be overwhelming. Lying on her side helped build transitional strength and made it easier over time for her to tolerate being on her stomach.
We kept sessions short, but frequent. A few minutes at a time, many times a day. Some days felt like we were making progress. Others felt like we were starting over. And yes, there were tears. Hers, and sometimes ours. But over time, those small moments added up. Her head lifts became stronger. The tolerance increased. What once lasted seconds turned into minutes.
What I’ve learned through all of this is that tummy time is not a checklist. It’s a process — especially for children like Rylae-Ann. It requires patience, creativity, and a willingness to meet your child where they are, not where a chart says they should be.
Even before we had answers, we were laying a foundation. After her diagnosis, we became more intentional. But the heart of it stayed the same. This key stage supported Rylae-Ann in crawling, walking, and becoming independent.
Show up. Try again. Celebrate the smallest progress.
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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