3

Oct

2018

5 Questions Hypotonia Parents Should Ask Themselves

by Aculbertson

As the parent of a warrior with hypotonia, you’re no stranger to questions.

Asking them. Answering them. Punching them into Google.

But how many of those questions are directed at yourself? Here are five you should be asking:

 

In an ideal world, you’d have an overabundance of friends and family lining up to support you.

But that’s probably not the case.

Be intentional about finding a tribe.

If your child has a specific diagnosis, you can look for local groups, such as Down syndrome associations. But there are also several hypotonia Facebook groups. These are great places to meet like-mind parents. Ask questions. Share tips. Get encouraged.

You don’t have to do it all alone.

 

The goal isn’t to be a pest. But no one will advocate for your child like you. And that might mean speaking up, doing research, and making phone calls. There’s no need for you to stay silent during appointments and meetings.

 

When it comes to hypotonia, people tend to fall into one of two categories: uninformed yet supportive or in denial.

No matter who surrounds you, the best thing you can do is educate yourself first. Then spread the wisdom. Mix in personal experiences, and when all else fails, keep it basic:

  • Hypotonia is low muscle tone
  • It’s not weakness, laziness or imaginary
  • Developmental delays are common, but that doesn’t mean my child can’t eventually soar

The important thing to not let someone else’s frustrations or unrealistic expectations negatively impact your child.

For a deeper dive on this topic, check out a previous blog post.

 

Too many parents hold on to an unrealistic mental calendar for milestones.

Don’t. It’s not fair to you. It’s not fair to your child.

Hypotonia causes delays. It’s an unfortunate fact. But that doesn’t mean your child won’t crush every milestone on the list. They’ll just be on his or her own timeline.

 

You want to give your child the world.

Between insurance and finances and other obligations, that’s not always possible. But you should never stop asking what he or she needs.

A new therapist?

More appointments?

Orthotics?

I want to learn more about Surestep SMOs!