A Parent's Silent Scream

The Scream of Nature by Edvard Munch, 1893

I wrote this in the spring of 2014, but only recently shared publicly in April of 2015 in honor of Autism Awareness Month.

In the spring of 2013, a terrible realization occurred in my family.  I should have seen it coming, but I kept my eyes shut.  My son was a little over 3 years old and still he wasn't talking.  His language mainly consisted of grunts, cries, certain "uh uh uhhs" that my wife and I had deciphered pretty well.  Sure he knew, "mommy, daddy, grandmom, pappaw," certain favorite foods, objects, barnyard animals, and dozens of songs, but as for sentences, conversation, it wasn't happening.  I had the knowledge that I was also a silent child at his age and I gave my parents lots of worry, and look at me now, I'm a pastor, talking is what I do!  My son will grow out of it, give it time I constantly reassured my worried wife.  Then my son's church preschool teacher took me aside; my son wasn't interacting with the other kids, wasn't talking, was very removed, distant, and now they were worried.  Okay I tell my wife, let's take him to our local child psychologist, let her examine our son, and we'll get this fixed!

That's the story I told, but truly in the depths of my heart I expected a confirmation of what I already believed; this was a phase.  He'll grow out of it.  This is normal with other children... the children I would watch play together, run together, craving social stimulation, run to me and ask questions while my son had nothing to ask unless it was for food and remained a loner.  But that's what my heart counted on.  That Saturday after his examination we all went to the park and I took this picture.  When I look at this picture today I call it, "The Last Good Day."  We were so happy and carefree that day.  Ignorance can be bliss.  Then the phone rang.  Our child psychologist had diagnosed my son with Pervasive Developmental Delay, or PDD.  It's in the autism spectrum, "mild" but very very real.

Immediately our lives were turned upside down.  My son is immediately pulled from his lovely church preschool to a 5 day a week preschool with specialized care (and we were extremely fortunate that there was an opening at the time).  He was very angry with the disruption of the routine he loved and counted on.  He began occupational therapy once a week to help him with his easily overstimulated mind.  More stress for my son.  Speech therapy came into his life twice a week.  A specialist doctor put him on a very strict diet of gluten & casein-free food with tons of supplements, which he all but promised curative results.  My wife and I immediately hit the books, blogs, and clinical trials quickly becoming semi-experts on PDD and autism.  I figured by Christmas, my son will have "caught up" and we will wake from this nightmare.  It's a phase, and phases pass.

That line, "It's just a phase," is b#@$%&*#.  It's what well-meaning people tell themselves or others suffering, to not worry and that somehow everything will work out, even though you can't promise that.  I say this because it's the lie I told myself often, as I wrapped the "phase" sentiment within my hopes to stand against fear.  Christmas came and went without the hoped results.  Sure he's "better," he copes with outside stimuli and loud social places much better, he's potty trained (Thank God), can dress half of himself, follows directions, and still loves to laugh and sing.  However, he's not there yet, wherever "there" is.  Ask him what he did today and receive a blank stare, or he'll repeat you without knowing what he's asking himself.  Take him to a new environment and watch him meltdown in front of strangers (such as when we went to an art-show last Friday).  I brace myself for the meltdowns in new environments every time, and it's exhausting.  While other children will speak to me about their pet dog or what they ate for lunch, my son...says nothing.  Before I believed it was because he was shy and withheld the info he would otherwise share.  Now I know, he lacks the capability.

To be in this dark place is very lonely, very dark, and you find yourself treading water against a sea of guilt.  Had I heeded my wife's warnings so long ago, would my son be as he is now?  Had I done something to him that caused him to have this impairment?  What could I have done?  What should I have done?  What responsibility is on my shoulders?  Is this my fault?  Thinking back logically with a cool head, I know the answer is no, this is simply, life.  But my heart is broken, it aches, and it cries out, screams for healing at best, or at least understanding.  When my son has a bad day and makes a scene in a public place I feel the accusatory eyes, even if they're not there.  "Control your child, you're ruining my day" my heart hears.  Trust me, I want the same thing every day.  Someone leans in to kindly speak to my son and the reply is gibberish at best or loud cries for retreat at worst.  I want to explain my son is different, my son has special needs, but an embarrassed and sometimes hasty retreat is the only option.  I want people to know, but I don't want him treated differently, but he's already being treated differently.  A little understanding would be so very sweet without having to go into a 10 minute speech of explanations.  It's just the same family members, doctors, and specialists who truly get it while we live in a culture that values the outgoing, social, charismatic person.  My silent scream goes unheard.  Too often those screams have been directed to God, crying for mercy, healing, or an overdue explanation, and they fall silent.

My son was completely in my thoughts when I journeyed to the Pool of Siloam in Jerusalem this past January (2014) with fellow clergy pilgrims.  I'm not sure why, this isn't Scripture that I had really connected to before (John 9), but my son's struggles were felt keenly there.  Together we read John 9, and the words cut me to the core.  Those accusatory voices who have seen and heard my son and his autism at its worst were spoken again by Jesus' disciples.  The disciples see a man born blind and ask, "Rabbi, who sinned, this man or his parents, that he was born blind?"  Or, "Rabbi, this child with autism, why is he like that?  Did the child or his parents do something wrong?"  I have enough guilt thank you, PLEASE, I don't need you piling on Peter and John!!!  Leave my son alone!  Just love him, as I do, even though it hurts!  Well I didn't read or hear the next verse while I was there (that came later), but I prayed.  Oh did I pray.  I knelt down in the dirt of the excavated pool, gripping the ancient soil, and begged God to please heal my son!  Take my voice if you need it God, whatever it takes, whatever price, heal my boy!  I'm not sure if you have been listening to me so far, or ignoring me, but I'm here in your land so you better hear me now!  Hear my cry for my son, please!  I'll pay!  This entire year has been about paying and getting mixed results; I'm desperate now!  As I stood after my prayer, my thought was immediately, "I bet that won't do a thing."  I think in this the blind man's parents and I have much in common.

Upon my return I preach John 9 on March 23rd, 2014, almost a year since the world of innocence and ignorance died.  In my studies I reread John 9, verse 2, again I read the disciples asking the dumb question that often I fall prey to myself.  Then, I HEAR verse 3, Jesus' reply, "Neither this man nor his parents sinned; he was born blind so that God's works might be revealed in him."  What works?  Well read on and you know that Jesus healed the man's eyes and it's a wonderful story, but that's not what Jesus said to the ignorant disciples.  This man was born as he is so that God may be revealed in him.  God will reveal Himself in my son as he is.  Since I heard Jesus answer me as he answered his disciples, I look at my son differently now.  Consider this; My son knows and sings over 50 songs by heart.  I'm not exaggerating, he has 5 music CDs of different nursery rhymes and he knows them all (with a few words mixed together of course).  He also has several Sesame Street songs memorized.  He sings loudly and boldly with perfect pitch and rhythm!  He also has a CD of kids singing classic Christian hymns (thank you Grandmom).  He will smile, look into my eyes, and we will sing together in chorus "Oh Happy Day" and a dozen more hymns.  He's also fond of Mumford and Sons "I Will Wait," Radiohead's "Creep," and Robin Thicke's "Blurred Lines."  My fault there, but I love it.  He also works incredibly hard in tasks that other children handle with ease, like doing a puzzle, handling multiple directions in therapy sessions, or simply fighting to take off his shirt over that giant head of his.  He is also incredibly happy.  Even with all of the intense stress of doctors, new schools, and loud places he's settling down and finding peace.  He smiles and laughs often and its infectious.  

So where is all of this going?  Is this a surrender, that I shrug and say, "It is what it is?"  (PS, I HATE that line).  Did God make my son autistic just to prove a point?  I can feel the ice underneath me cracking with these preconceived heretical notions trying to plunge and drown me again.  I put these questions alongside, "Rabbi, who sinned, this man or his parents, that he was born blind?"  I used to go there, but it led me into the dark deep, where I screamed and drowned often.  Instead, I have found myself silently screaming less often.  Now I'm discovering that God is revealing Himself in my beautiful son.  We will keep taking him to therapy, lessons, preschool and such to give him helpful tools he'll need for this loud and noisy world ahead of him, but he already has so much to offer and the world is richer with him in it, as he is today.  Sometimes I kneejerk and revert to "he'll grow out of it" sentiments or feel hopelessness creep back in, but when I do I hear the Son of Man's voice call to me, and I fall to my knees in gratitude as he pulls me out of the pool of despair.  As the blind man told Jesus, I tell him, "Lord, I believe."  And I feel my son wrap his little arms around my neck as he staggers out the words, "Love you....daddy."  I get it now.

I suppose God heard my silent scream after all.  It wasn't my son's voice he healed, it was my blinded eyes.

2015 Update Post is up now if you are interested, just click the sentence (it's a live link thing).