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.


  1. Wow, you are an amazing mom, Mariska. While I want to write that "everything will be all right", I know that as a mom, you will always be afraid for your sweet, amazing little girl. If it's any consolation, I see a lot of myself in what you write about Elizabeth. My teachers said I was learning impaired. I couldn't focus. I was ADD. ADHD. They insisted I should be held back a grade, but my mom refused. Whatever the tests said, she knew I could read at an early age. I was ball of energy (I climbed and ran, and was the only one of my mom's children she had to leash all the way until I was 4 or 5), but a wall flower, all at the same time. I thought stripping nude and running down the street was hilarious, even through Kindergarten. I had no inclination to socialize in elementary school, even. My best friend became my friend simply because she came up to me while I ran wildly across the playground (breaking the "no running on the play structure" rules, like I always did) and said: "I am going to play with you. Will you be my best friend?" And I said "Okay." I don't know how I would have grown up without the playground experiences with the very patient Joge who very kindly told me the rules of social engagement. It's mean to walk away from a game of four square. You have to wait your turn, or you're being mean. It's not nice to try and run away from friends.

    Whatever happens, that little girl is going to be loved. She has that light that will draw people to her, and it's clear she'll have the light, because you gave it to her. She will have larger obstacles to climb, because she sees and experiences so much of what's going on around her, but she will be strong enough to face it all because she has one kick-ass mom walking the road with her.
    Hugs, R

    1. Rach,
      I meant to reply to this eons ago. Thank you SO MUCH for sharing all this with me. You are such an amazing, beautiful, fun, funny person inside and out that if you hit these obstacles too, I think - "hey, Elizabeth will be okay!"
      I was so overwhelmed when I first wrote this blog and then read your response, that I had trouble putting my thoughts together. But I didn't want to forget to thank you. For encouraging me, for sharing your past, for everything. I feel lucky that somehow circumstances have let us meet each other. Your response made me doubly thankful.