Down Syndrome Awareness and Advocacy Month Day 9: High Hopes in Spite of Low Tone

One of the most common issues seen in babies and children with Down syndrome is hypotonia, or low tone. Low tone causes babies with DS to be more squishy and floppy than other babies. It also can cause the delay often seen in meeting developmental milestones, such as sitting, crawling, walking, and talking. 

Jackson has hypotonia, and I was told by one of his doctors who has many patients with DS that his tone is one of the worst she's seen. That's always fun to hear! However, we work constantly with different therapists to counter the effects of his low tone. He has worked so hard to sit and four-point crawl, and now we are finally working on him beginning to stand and cruise on furniture. Due to low tone, his ankles are quite weak, so he was just fitted for orthotics called AFOs and SMOs that will fit over his feet and lower legs. When we get these in about a month, they will hopefully give him the secure base he needs to start to feel more comfortable bearing weight on his legs, ankles, and feet. 

Low tone can also affect speech development and cause feeding issues because it often affects the cheeks, lips, and tongue. The tongue protrusion often associated with DS is one effect of the low tone around the mouth, though tongue protrusion can also be a symptom of hypothyroidism. 

Thankfully, Jackson has never really had any problems with feeding. He has been working with a speech therapist since before he was six months old, and he has recently made great strides in saying more words and mimicking sounds. His receptive language (what he understands) is quite high, and he is starting to sight read words, recognize individual letters, and say their sounds. 

A common misconception is that tone and strength are the same thing. Low muscle tone is more about the muscle being loose and floppy than about it being weak. While Jackson does have low tone, he is actually quite a strong little dude! 💪

Low tone can pretty much be a pain in the behind because it stinks to see your kid have to work so hard to accomplish what comes easily and naturally to other children. However, it does provide for some interesting photo ops due to the hypermobility (extreme flexibility) that comes along with low tone! 

While it sometimes takes children with DS longer to reach certain milestones, they will reach them in their own time. 

Here are some helpful links for activities to help with hypotonia:

Down Syndrome: A Day-to-Day Guide Low Tone: What to do

Early Oral-Motor Interventions for Pediatric Feeding Problems:What, When and How