Thursday, March 21, 2013

Afraid to Say It Out Loud

I should be going to bed right now.  I will be tired tomorrow.  But I've been dealing with something for a while and I've wanted to write about it, but I've been afraid to say it out loud.  Afraid to voice the fear.  Afraid if I mention the Devil's name, he will, indeed, appear.

We're doing Occupational Therapy with Elizabeth.  Why?  The doctor will tell you it's because she still walks on her toes at 4 years old.  The doctor will say she wanted to do an MRI first to rule out spinal difficulties because she seems to be a "normal" (I hate that word), bright, articulate child and that it is only because I pushed for OT evaluation.

I will say something else.  It's because, starting with a gymnastics class, I began to notice... differences.  She isn't the same as other kids her age.  Yeah, a 3 year old has trouble focusing.  But she stood out.  My kid was THAT kid in class.  I'm crying as I write this.  It's been months since that class, but it still hurts.  Having THAT kid.  The one who jumped all over, spun in circles and sang to herself while the others tried to follow the teacher.  The one who lay in a puddle or rolled all over, when the teacher asked her to sit up and pay attention.  The one who nearly had to be pulled out because she began to throw a fit of embarrassing proportions when a teacher tried to help her do a somersault.  The one whose name was said over and over and over... and over.  And my heart sank.

We had been through eating therapy at around 2 because she began vomiting up nearly everything.  Sometimes from texture.  Sometimes from smell.  Sometimes because she lacks the satiety cue to know when she's full.  I had hoped it was the last thing.

But then came the noise fears and the amazing tantrum/reactions they produced.  Vacuums.  Blow dryers.  The car wash. Blenders.  Mixers.  Fans.

Then came the need to put EVERYTHING in her mouth that she never outgrew.  Still hasn't.  And the destruction of EVERYTHING by chewing, ripping, smooshing, crushing, etc.

Then came the tantrums about... we don't know what.  Anything.  Nothing.  Not finding her sock.  Someone picking up her toy.  Chocolate milk.  The lighting in a room.  Someone looking at her.

And then came the gymnastics class.  And I began to think.... so what is Sensory Processing Disorder?  What else should I look at?  I have no idea.  And so I pushed the doctor.  Because I KNOW my daughter.  She is bright - she just read the word "crystal" off the eye doctor's computer and turned to her and said, "what's a crystal? why does it say that?"  She has made a couple friends.  She has pretty decent motor skills.  Her potty training didn't fall into what would medically be considered "late."  But despite all that, there was this nagging.  And the gymnastics class.

So we're going.  Therapy has been great so far.  I've learned about Chew Stixx - wonderful, safe things she can carry with her to chew on so she doesn't chew on her sleeves, paper, rocks, toys, whatever.  I've learned about using balance balls, wiggle seats, weighted blankets, wraps and skin brushing to try to put her "senses" in order.  I've learned about visual cues like a motor (how fast is her motor running) to help her figure out her emotions and how to re-center herself.  I've learned about fidgets (gadgets she can fidget with instead of jumping out of her chair) and "heavy work" like running, jumping, pushing, pulling and balancing so she can maybe focus on quiet tasks later.

But it's also created a weight in me as I watch her for... signs.  Does she make eye contact?  Why does she show no interest in making friends or being social at the park?  Why does she seem to never hear me, forcing me to ask her things 4-5 times?  Why does she not seem to understand social rules like when to undress?  Why you shouldn't kick another kid at the park?  Why you should follow the teacher's rules?  And I wonder... am I looking at more?  Am I looking at Asperger's? 

I'm terrified.  And not because I can't handle this... but because I fear for her.  My beautiful, bright, imaginative, blonde little mud princess.  I don't want her to feel like the "bad kid."  I don't want her to get picked on.  Or ostracized.  I want to wrap her up and hold her tight and make sure that the world doesn't bump and bruise her too much.  I want to go all "mama bear" on the shitheads out there who stare at her when she's having a hard day like she's an undisciplined, spoiled, unruly brat and who shake their heads at me.  I want to rip their fucking throats out and say, "do you even KNOW what I've been through today with her?  Do you know that just the sound of my blow dryer this morning and you looking at her is enough to disorient her in a way she CANNOT help?!"

I'm trying not to panic.  I have a friend whose daughter went through a lot of what Elizabeth is going through and now... she's fine.  She laughs about how she was afraid of flushing toilets.  She has tons of friends.  She plays sports.  She's awesome.

And so I hope.  And fear.  And cry.  And go to therapy.  I will take one day at a time and see where this road takes us.  Tonight, with the help of an amazing friend, I made my first "social story" - a picture story to help Elizabeth  through our upcoming plane trip to California so that maybe she will be able to handle automatic toilets and a 2 hour plane ride and the security line at the airport.

She just had her 4th birthday.  In my FB page I said she was my "imaginative, funny, muddy, ninja-princess-warrior-storm trooper-whirling dervish" and that I wouldn't have her any other way.  And I wouldn't.  I just want the rest of the world to want her that way too.  Because she is amazing.  She kicked the shit out of me when she was in my belly (she loves that story).  And she does it to this day... in the most amazing and beautiful ways.  Like when she sings a little song she has only heard once... perfectly and in key.  Or when she gives me the most amazing hugs and holds my face and says, "I love you so much mommy"

I'm crying again as I write this.  But I won't be afraid to say it out loud anymore.  The Devil can fuck off... whatever she has or doesn't have, or is or isn't - she's perfect.