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The Difficulties of Being a Parent to a Child with Hypotonia

At six months our son was just starting to lift his head. At sixteen months his arms were still too week to support crawling, despite being in occupational therapy (OT) for over a year and physical therapy (PT) for three months. We did tummy time. We tried every trick in the book recommended to us. With the help of OT and PT he’s not falling further behind, but he’s certainly not catching up either.

He struggles with what’s called Hypotonia, or low muscle tone. He’s much more flexible than you would expect a child to be. He can put his feet up by his ears without even straining and he’s well over a year old. This flexibility causes him to need additional strength to keep his muscles in place, and he can’t make progress on physical milestones by himself because he lacks the strength to lift the weight of his body and head without significant assistance. Thankfully, with help he does get stronger. However, if you left him to his own devices he doesn’t work on his physical milestones like you would expect. In fact, he doesn’t work on them at all.

I’ve avoided this topic up until now because family members and friends tend to have two types of reactions to it. The first, they deny it’s abnormal and claim repeatedly that the child will catch up on their own (Not at all true for a kid with Hypotonia. Without help they simply wouldn’t gain the skills. Some still struggle even with all the help in the world.). The second is disbelief, which may or may not come with the inability to understand how a child would have problems with their muscles. This disbelief is similar to what tubie parents encounter when they tell people their child cannot or will not eat enough to sustain themselves. Unfortunately, our little fella has both a feeding tube and Hypotonia.

I wish I could tell you how to convince people that Hypotonia is real, and it’s not something made up or normal. I did some digging and found this link at the National Institute of Health’s website:
https://www.nlm.nih.gov/medlineplus/ency/article/003298.htm

My hope is that publishing posts like this, and providing reliable and respected resources, we can expand awareness of these types of conditions. It was painful for me to watch family members hold my five month old son and not support his head because they couldn’t believe he could still possibly need the support. This is a real health problem, and we need our friends and family members to accept it as such. Otherwise, the journey with a medically complex child is a lonely and extremely difficult one.

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