"From the rising of the sun to the place where it sets, the name of the Lord is to be praised." Psalm 113:3

Friday, July 19, 2013

Firefly Friday. Validation...


This post has been rolling around in my mind for a few days now.  I've known that I've needed to write it--to address all of the feelings that are crowding my thoughts, but the problem is that I just don't exactly know WHICH thoughts, feelings, and ideas are actually in there.

So I think that probably the best thing to do is just to start typing--that's usually where I end up finding the clarity best.

See, a few days ago there was this new study that came out.  And while there are new studies that are published every day that I don't ever hear of or pay attention to, this one was brought right to my inbox.  And just in case you don't like to click away from a page while you are reading, let me just summarize it for you here:

--A REAL research team, from a REAL university, found that children with Sensory Processing Disorder have REAL, biological differences in their brain structure.

--These differences are not the same differences found in children with autism or ADHD.

From here, the study goes into extensive detail about the abnormal white matter, MRIs, and water diffusion and other such technical jargon that I had a really hard time understanding.

But here was the point that hit me the hardest:

It is REAL.

Whew.

REAL.

THIS is what I'm having the hardest time processing myself.

See, our little family has struggled with this disorder for ten years.  Ten.  Years.

In our home, SPD is painfully, horrifically real.

The picture burned into my brain of my two year-old screaming like acid is burning her because I am trying to put her socks on is incredibly and forever real.

The tears in my 5 year-old son's eyes when his big sister is having a two-hour long tantrum that started over I don't know what and he can't stop her--those tears burning a path down my heart were real.

The strange looks that strangers have given me when I am holding down a writhing four year-old because she wants to hurt me or herself because she's just SO mad about nothing--those--also real.

The gasping-for-air sobs that my closet has seen altogether too many of--REAL.

But while we have been living this reality for so long, I've had this feeling that we were the only ones who believed in the reality of it.  And, honestly, sometimes, even I doubted that we were ever sane enough to think it could be real.

Doctor after doctor after doctor.  Psychiatrists, psychologists, social workers, counselors.  Pharmacists, teachers, even friends and family members.  I don't think anyone really knew or believed that it could be as bad as we said.

Bad parenting, exaggeration, fatigue, general brattiness, crazy momma.  I know there were lots of those kinds of things being said about us behind our backs--because many of them were said in front of us--and our child. 

But guess what?

It. Is. REAL.

It is a real disorder, with real changes, that causes real symptoms.  It is here and our Firefly was born with it and it is part of her genetic makeup.

Part of me--a really big part, actually--wanted to post the link to my Facebook wall with a great big HA!  Or maybe just a SO THERE!

I wanted to have a Happy Dance in the middle of the street!  We were validated!  We were not crazy!

But I didn't.  Because, you see, the other piece of this puzzle means that SPD is real.

It is a real disorder, with real brain changes, that causes real symptoms.  It is here and our Firefly was born with it and it is part of her genetic makeup.

But there isn't a pill she can take to make it disappear, now that we know it's here.

She can't have a surgery and wake up and it will be all gone.

It. Is. Here.

And we need to continue to find a way to live with it and help her navigate her scary, unpredictable world in a way that will work for all of us.

So the point of this study isn't really new to us after all.  We always knew it was real.  But maybe this is the first step to making SPD something that people will study, will learn more about, will advocate for, will find out what works best.

Maybe this is the first step in making it something that people will believe in.

Just like we believe in our Firefly.

And her struggles and her torment.

But also in her strength and her bravery.


Do you have a child with SPD?  What was your reaction to this study?  Have you ever felt like no one believed the stories you told about your child?




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