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If your child has low muscle tone—also known as hypotonia—you’re not alone. It’s actually pretty common among kids with developmental disabilities, especially those with chromosome disorders like our daughter, Avery.
When she was a baby, we noticed Avery moved differently than her big brother had at that age—or any baby we’d ever seen, really. Her body just felt floppier. She took her time hitting milestones like rolling over and sitting up. She never crawled in the traditional sense and preferred to “bum scoot” her way around instead. Walking didn’t come until she was almost three. At the time, we didn’t know why, but it turns out hypotonia was playing a big part.
Hypotonia isn’t the same as muscle weakness. It means the muscles have less tension when at rest. So instead of feeling firm or springy, they feel loose or floppy—think, wet spaghetti noodle. That low tone in her muscles was our first clue that something more was going on, and it eventually led us to pursue genetic testing.
For Avery, hypotonia has affected more than just mobility and balance. It made feeding incredibly difficult in her early years. The muscles involved in sucking, swallowing, and chewing just didn’t have the strength they needed. She dropped off the growth charts and was admitted to the hospital at eight months old. We eventually learned that reflux, aspiration, and poor oral motor control were all contributing to her failure to thrive.
Hypotonia also impacted her ankles, causing pronation (where the feet roll inward) and this is still affecting her posture and alignment. Orthotics, physical therapy, and strengthening exercises have helped—but the challenges remain 18 years later.
Another area where hypotonia shows up is speech. Avery has dysarthria, which happens when low tone affects the mouth and facial muscles, making speech sound slurred or slow. When she’s tired, under the weather, or in a noisy environment, her words can sound a bit like she’s talking with marbles in her mouth. But most of the time, especially if you know her well, she’s perfectly understandable.
Therapy has helped. Speech-language pathologists often use playful activities to strengthen oral muscles, like blowing bubbles, sipping thick smoothies through a straw, or making funny faces in the mirror. We were diligent about these exercises early on, but during the pandemic, speech therapy went from in-person to online to… well, non-existent (mom burnout is real and something had to give). Still, even small, consistent exercises can add up to meaningful progress over time.
Is there a cure for hypotonia or “Will she outgrow it??”
Short answer, no. It can be managed, but muscle tone doesn’t really change. BUT… we can work on building and strengthening muscles so they can better support the body.
Hypotonia might not be the most visible diagnosis, but it’s something many families in the disability community experience every day. And while it may affect how our kids move and speak, it’s just one piece of the puzzle that helps us better understand and support our amazing kids.
