26

Jan

2017

Hypotonia - What Family & Friends Need To Know

by aculbertson

hypotonia, what friends and family need to know

Hypotonia. 

It can be difficult to remember a time before that word was part of our daily vocabulary. The complexities and details come easy to us. But for friends and family, it’s still be a mystery.

Be patient.

Next time you have that conversation, here are a few things to keep in mind and explain:

Hypotonia is a lack of muscle tone, not strength, and it varies from child to child

Take a second to squeeze your bicep. Even if you avoid the gym, there’s a certain level of tension. In the case of my daughter, that’s decreased, which leaves her muscles soft and too relaxed.

This causes a variety of challenges, but one of the biggest is stability. Imagine learning how to walk without a reliable amount of stability in your legs.

And it effects each child differently. For some kids, hypotonia only impacts certain parts of the body. For others, it’s all over. The severity also varies. This means hypotonia can impact everything from eating to talking to breathing.

He isn’t lazy

Hypotonia makes everyday movements difficult and exhausting. It’s not an effort problem. So if you see him being carried, taking breaks, or riding in a stroller, that’s ok.

It’s not something she will outgrow

Muscle tone does not change, no matter how many pushups she does. Don’t expect her to magically catch up to all the other kids.

Normal is a dryer setting, not a type of child

It doesn’t matter how “normal” he looks. Every child is different. Mine has hypotonia, and that means he faces a unique set of challenges. He may not meet all your expectations, but don’t underestimate him.

Sometimes it’s about inchstones instead of milestones

There’s a motto in the hypotonia community that’s good to keep in mind, “One inchstone at a time.”

No, she probably won’t do the big things like learning to walk at the same time as other kids. Putting pressure on her to “catch up” won’t help.

Sometimes growth looks like lifting her head or holding on to a toy. And those small victories aren’t any less worthy of celebration.

Comparisons aren’t helpful

It’s irrelevant at what age other kids walked, fed themselves, or stopped needing diapers. My child is unique. Progress may come a little slower, but we’re moving in the right direction.

There is no cure for hypotonia, but it can be managed

No amount of medication or surgery will cure hypotonia. But through intervention like physical therapy and bracing, he can gain stability, confidence, and new skills.

A diagnosis isn’t always simple

Although hypotonia is often diagnosed early in life, its cause isn’t always easy to identify. For some kids, it’s a condition all on its own, not linked to any other diagnosis. This is called congenital hypotonia.

But for other kids, it’s a symptom of a larger root cause. There are over 600 conditions known to cause hypotonia. Testing takes time. And getting answers isn’t guaranteed.

The AFOs/SMOs are important

They give her stability. Don’t remove them just for convenience. But if they do need to come off, please follow the instructions when you put them back on. Check to make sure they’re on the right feet and pull the straps tight.

Please don’t ignore him

Above everything else, he’s still a child. Give him your love, attention, and support.

It’s ok not to understand everything about hypotonia. We all learn as we go.




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