26

Jan

2017

hypotonia – what family & friends need to know

by Aculbertson

 

hypotonia what family and friends need to know

Hypotonia.

It can be difficult to remember a time before that word entrenched itself in your daily vocabulary. The complexities and details come easy.

But for friends and family, low muscle tone is still a mystery.

Next time that conversation comes up, here are the basics that all the important people in your life need to know.

 

Hypotonia is decreased muscle tone, not decreased strength

Relax your arm and then pinch 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 steadiness in your legs.

And it affects each child differently. For some kids, it 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. Muscles are forced to work overtime, all the time.

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

But we’re working hard every day to close the gap.

Normal is a dryer setting, not a type of child

It doesn’t matter how “normal” he looks. Every child is different. Mine has low muscle tone, 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.

We have our own timeline. 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 low tone is often identified early in life, the cause isn’t always easy to diagnose. 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 SMOs are important

They increase stability, improve alignment, and build confidence.

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.

We all learn as we go.

 

Are Surestep SMOs right for my child?