Hypotonia - Ever heard of it? Do you feel like you're the only one?

My son was born with hypotonia.  Most people don't know what this is.  Even when I say what some folks know it as, "rag doll syndrome".  I still get blank looks.  Hypotonia is a form of non-degenerative muscular dystrophy.  Basically, imagine your body without any of the muscles in your body working correctly.

Imagine that it hurt, that it was straining to you to sit up in your seat right now.  To lift the lid on your laptop or to move the mouse on your desktop.  You know that pain and ache you get when you do crunches? That sitting upright cause that burn.  That every movement you make from your head to your pinky toes is an effort, similar to how you feel when you exercise. 

And whats worse, you are born that way, so you don't know that its not supposed to hurt when you try to move.  I recently read a quote from a doctor about hypotonic kids, "For the hypotonic child, every day is a fight with gravity." Hypotonia simply means low tone. Low muscle tone.  There is often an underlying cause for hypotonia, and in Trent's case, thank God, its just the way he was born.  He was a preemie, but otherwise, there are no other known reasons.  He didn't walk until he was 3.  Barely talked until then also.  He went to Special Ed preschool - got on a bus at almost 3 years old, backpack bigger than him, and rode the 15 miles (by himself!) to the preschool that helped him.  He was in PT and Speech until then as well.

Now, fast forward to Kindergarten. Trent is freakin' brilliant.  However, he is unable to write legibly.  In some instances, he is using both hands to hold the pencil upright.  Can you imagine that? Sitting up at his desk only lasts for a few minutes at a time, and then he has to put his head down.  He is clumsy if he is rushed.  He falls constantly.  And now, we are at a time where we have to make some tough decisions.

In reality, he is testing smarter than most (in some cases - past 8th grade level), but if he can't write - how is he going to move to 1st grade?  All the brains in the world isn't going to help that.  So, we are working diligently with the school to get him the help he needs.  But, and here's where I know I'm not alone - hypotonia is rare.  So rare, that when faced with a room full of specialists to discuss Trent's IEP - I had to explain what it was. 

So this is my message to you moms - what do you do to advocate for your child? Especially if your child has a rare issue?  I know one thing I did was educate myself.  I went to the Arc of Loudoun (http://www.thearcofloudoun.org/) whose specific purpose is "opportunity and growth for people with disabilities".  They have educational advocates there.  And lawyers.  And I learned all about my son's rights, and my rights as a parent.  And I marched into the school with a 3-inch binder.  Full of sticky notes and tabs.  And when it was time to look at a certain document during our meeting, I flipped right to it.  And when they required more medical documentation after the meeting, I marched in yesterday with a 3 page document from my pediatrician with the parts needed, highlighted.  The vice-principal said, "When the county called and asked if it would be an issue to get more documentation from the doctor - I said, with Tammy, it will be no problem.  This mom will deliver, no doubt."  That made me proud.

Moms, I ask you.  What do you do to advocate?  I want to know.  Let's compare tips.  If its your kid - you would do anything, so why is this process so daunting sometimes?  And any hypotonia moms - I want to talk to you too! 

Be well, happy Saturday!

PS - To give you an example of how rare hypotonia is -- it just came up in spellcheck as a non-recognized word.  Damn.