Thursday, January 26, 2012

A letter to the public

Dear People in Public,

Today you met a child who has an invisible disability.  He looks like a normal eight year old boy but inside of his beautiful, perfectly formed skull is a brain that is broken.  It didn't develop properly while he was being formed in his birth mother's womb.  This is called schizencephaly.  Would you stare and whisper if it was his legs that were misshapen instead of his parietal lobe?  If instead of a hidden part of his brain called the septum pellucidum being absent, it was his arms? 

The tantrum that you witnessed was not just a child being a "brat."  While you were staring at him and forming your judgments, he was struggling to maintain self control.  He knows right from wrong and can clearly articulate that when he's feeling well.  Today he had just left school where he had to hold it together for his teachers all day.  He was tired.  He was hungry.  He had come back to his family where he is safe to show his struggles.  He knows Mom loves him unconditionally.  Mom is comfort.  Mom is security.  Knowing that after school is his hardest time, this mom had no choice but to take him to a doctor's appointment for his brother.  After waiting to be picked up from school, being told he had to wait in the waiting room was too much for him.  Being tired, hungry and bored pushed him over the edge. 

While you were seeing a boy hit and kick his mother and yell and throw things, I, the woman who knows him better than he knows himself, was seeing progress.  This child's half hearted thumps on my leg with his fist had none of the intensity of tantrums past.  His screams contained no threats of homicide or obscenities.  He may have kicked me but he did not object when I took his shoes away.  He put his teeth on my leg but he didn't bite.  This child who has been an inpatient in a pediatric inpatient psychiatric treatment facility 8 times in his short 8 1/2 years has been on 7 different kinds of medication at one time to keep him from hurting someone else or from cutting his own tongue off!  Yet he never even talks about hurting himself anymore!  He sleeps when he's supposed to sleep.  He makes jokes.  He laughs.  He's a mere shadow of the intense, volatile, angry child he was even a year ago!    He cares about his teeth and proper nutrition.  He is affectionate and works hard in school.  He has increasing empathy for others.  At Thanksgiving when asked what he was thankful for, he announced "Jesus" without any leading. 

So while I thank you, dear lady in the Dr.'s office waiting room for your offer to cut a switch off of a tree outside while he howled in frustration at my feet.  Though it might have looked like my child "just needed a spanking," it won't be necessary.  When my soft, calm words and consistent discipline fail, I'm wise enough to know my child just needs a safe, quiet place to be.   When his daddy picked him up, he promptly fell asleep in the backseat of the car.  Like a toddler who's had too much activity in his day, my "normal" looking 8 year old boy felt much better after a power nap. 

I hope that in the future you will remember my son for whom I've often thought I should buy a shirt proclaiming "I'M NOT A BAD KID. . .I HAVE BRAIN DAMAGE!"  When you see another child struggling, understand that not all disabilities can be seen outwardly.  Even so, the struggle and the stigma are very real.



  1. Great PSA. ((HUGS))

  2. Daniel
    Your Nannie loves you just the way you are
    Kisses and hugs