A Parent's Silent Scream, Part 2 (A Year Later)

We're Silently Screaming less often these days

It's been over a year since I wrote A Parent's Silent Scream.  So much has changed, so much hasn't.  I've learned much, and I'm still learning.  Now I bet many of you are curious as to how my son Will is doing.  I'll save that for the end.  First, I want to share some of my insights since then, offer you some helpful advice when dealing with a child like my son (and their stressed but superhero parents), and then close with the update itself.  First what I've learned;

Not everyone loves a parade, or needs one

1. We've gotten better talking about autism, somewhat.  Let's be real, it's now "hip" to be involved with kids with autism.  They're the poster children of feel good stories on the news, their special skills have been highlighted with growing pride, politicians love to use them in their election TV ads (it happened in my state and it was pretty shallow, and it still worked), and now we have an Autism Awareness Month filled with pep rallies, parades, and more of the feel good stuff.  There are lots of good intentions here, and we can only become comfortable with what we are familiar with, but it's only a first step.  It generates a lot of sympathy, but sympathy can be cheap and forgetful.  These families need more than your sympathy.  Autistic disorders are terribly complex and extremely draining.  Some families have the courage to share about their struggles, others aren't.  There are many reasons why, and here's one reason why...  

My son is not a victim, he is a person.
Treat him like a person, with care, but as a person

2.  Autism is not a "disease," it's a disorder.  Like it or not, autism is not something you can fix like a broken leg, or you pump full of antibiotics to "cure."  And I'll say this, keeping your kid from taking vaccine shots will not prevent autism either.  That's a scientific fact (link here, and here, and here, and here (that last one is a great source at that!), there is nothing to debate.  My son is vaccinated and he's a better person for it).  Many people treat autism like a disease; for some people say that such a child was "normal" (I hate the word normal) before "the autism" came.  When the media describes autism as an epidemic I get angry, because it perpetuates this confusion and falsehood.  While autism is wide-encompassing with many varieties, this is simply part of who they are, for better or worse.  They have much to add to society (many are our mathematicians, scientists, engineers, authors, clergy, artists, and musicians).  We have to start making space to welcome these people and their gifts.  It doesn't mean these children can't receive therapy (for they can and they should), but it doesn't make them less of a person.  They're different, and while their challenges can be beyond the pale, they're God's children just the same.  Many families fear their child being labeled as broken or different, thus to be avoided, so they'll hide or minimize it.   Give them some space to be real.  

We are all unique, autistic and otherwise

3.  Not all autistic children are the same.  Not all are robots, or have Aspergers, or are silent computer programers.  They are as diverse as all the children and people of the world.  Some are savants at math, others aren't, and some are in the middle.  Some can talk your ear off, some cannot, and some are in the middle.  It's easy to shoehorn children, or people with false expectations (more on that in a minute).  Don't let those expectations become a barrier.  Right now 1 out of 58 children are being diagnosed with a condition in the autistic spectrum, with varying degrees of severity and quirks.  Get to know some of these children, youth, and their families; I guarantee you know one and you may not know it.  They're worth getting to know; they're lovely, odd, beautiful, different, and great teachers. 

I'm too cool for your anecdotes!

3.  Some people need a little advice about how to talk to a family with an autistic child.  When I've shared my son's condition with parents who have similar children it's freeing, encouraging, and empowering.  We all know the language, the worries, the science, and can real without pretending to be brave or wiser than we actually are.  When I've shared my son's condition with other people to whom autism is a stranger, I always brace myself.  I find people tend to be well meaning and want to help, but uy, sometimes too many words are said.  Here's a helpful hint; DON'T REPLY WITH ANECDOTES!  Why do people feel the need to share a story about someone they know with autism, or sort of know, or heard about, or read about (usually ending with a "they live a normal life now")?  They say them because well-meaning people want to connect, to show they care, to give hope, and it's a knee jerk reaction.  Let me clue you in, these stories don't help.  EVER.  These families have more anecdotes, reports, and stories than you can imagine.  For every story with a happy ending that you are dying to share, they have ten more to return back to you where the end is sad and depressing.  Such parents like me aren't pessimists, but we aren't dummies.  We keep our expectations realistic, our hopes within reason (reason learned from experience), and we will move mountains if it would help our children (and we move them often), but there are only so many mountains to move right now.  Sharing a story or anecdote can also force a parent to relive a time when they were working overtime to "fix" their child before they learned to accept the reality of what is.  Reliving that frustration and pain doesn't help, obviously.  What should you say then?  Here's a few suggestions;

• I love you and your child, no matter what. (this goes a long way, trust me)
• If there is anything I can do to help, just call (and actually mean it).
• Give a hug.  Lots of hugs.  Save the words for later.
• Ask questions (even the awkward ones) and don't judge.  Listen and learn.  These families are often shamed into silence but are willing to share if given the grace.  It's a great freedom you can give them.
• If you really want to share such a story, ask first to see if that family wants to hear it.  Don't volunteer it, ask permission, but for the most part save it for a much later date (especially if you just learned about it)

The first time my son was willing to meet Santa.
My church was willing to give my son the room for this meeting,
and he cried when Santa left because
he finally loved Santa.  That's what I'm talking about

4.  Oh wait, you offered to help, BLESS YOU, but you aren't sure how?  I get it, autism, it's as intimidating as hell.  So how can you help these families?  Give them a break.  Being a parent to an autistic child is beyond a full time job.  It's a full time life.  Sleepless nights, countless appointments, specialists, schools, meetings, all while constantly hovering over our child or children, it's a wonder we are able to function at all!  What's worse is the lack of space to go out in public because of their quirks and needs.  Going to a restaurant?  If the child is a picky eater, hates noisy places, is highly sensitive, and is a squirmer or a runner, forget it.  Dream on.  Or perhaps the child has had enough therapy to handle some of that; well the parents are on edge for most of the meal.  Letting your guard down is hard to do.  Going to church?  The parent(s) are likely going to spend the entire time with their child, a constant shadow, denied the chance to be with their own peers due to negligence or design.  They won't stay long if that's the case, because they can stay home for the same thing with less stress.  The toll autism wrecks on a family is that it is completely isolating.  The greatest gift you could give families with such a child is time to breathe.  Are you having a family gathering and an autistic child is coming?  Take the mom and/or dad aside and say, "Go get a hotdog and relax.  I'll take care of you child for a while, I promise."  If such a family is coming to church and Sunday School, tell the parents they don't have to stay in the kids class with them.  Instead say, "I got this, go to the adults class.  It's okay."  Give your cell number, offer to text updates.  Be willing to be educated by the worried parent who is craving such grace yet is scared to let go.  Sometimes all you have to do is be their shadow.  You don't have to become their best friend, just follow them around, keep them out of harm's way, and let them be.  They might show you cool stuff!  You aren't babysitting, you are just giving these parents a gift that is so often taken for granted which they rarely receive.  Give them this peace, and you'll gain allies for life.

I'm tired of smiling for the camera!
I don't want to be on Facebook today!  :(

5.  Social media is cool but it can fool.  When I shared my story on social media I was surrounded by love, which was very sweet, and something else happened.  People reached out who are also parents to autistic children and I didn't have a clue that they were!  People who post pictures of their kids smiling, laughing, playing, learning, and backed up by lots of parental bragging, say what?!  I also received messages of shock, words along the lines of "I had no idea!"  Most of these responses came from people who I love dearly but don't have the luxury of seeing very often (geography and time), but still, have I been creating a false image of my son?  Not intentionally, or wait, maybe intentionally, or maybe both.  Yeah, both.  Parents love to share and brag about their kids online and off, and I do too.  I call it, "Our Kid's Greatest Hits Album."  Like in a music album, there are great songs worth listening to, but there are always a few we prefer to skip.  Enjoy the hits, skip the misses.  Social media exasperates this habit.  Besides, who wants to share, "My child has been driving me crazy today, screaming and yelling more than usual, and I just want to hide in the bathroom and lock the door?!"  Or better yet, who wants to read it, or respond?  So we stick to the positive stories, which gets the positive feedback, and becomes a revolving door where the illusion of perfection must be maintained and is rewarded with accolades and well wishes, even though it's not a truthful image.  

Now does this mean we should be sharing everything?  Dear lord no, some people overshare, way too much!  Perhaps we should seek to be a little more honest.  There are glimpses of this here and there.  Don't you find yourself smiling at the pictures of almost-perfect family portrait gone wrong (a screaming child, squirmy adults, rolling eyes, falling props, etc)?  It's honest, and thus refreshing.  My sharing of these blogs is another step in that direction, positive vibes and angry disappointment in one, real life instead of an incomplete image that misdirects.  So treat social media as just a small window into a life, and be willing to not only hear some bad news but to be brave enough to share some too, and for the right reasons.

I wouldn't trade him for ANYTHING.
The world is a better place because my son is part of it

A Year Later; So then, how's my son, a year later?  You'll just have to come and meet him to find out!  Okay, just a few teases; his language is slowly coming along, way behind compared to other kids his age but there is progress.  You can literally watch his mind process out a small sentence, 3 or 4 words, and it's amazing to watch.  He doesn't sing as much as he used to (except at Christmas, he LOVES Christmas for the music, and now so do I), but has a real knack for music itself.  I love watching him play piano, with care and deliberation, carefully trying to play cords and in rhythm.
A great future for him may be there.  He's mostly self taught.  

I've been amused at church when he goes to a piano and carefully plays, and then another kid will join him and start banging.  He lets them, kind of tolerates it, but you can see the look in his face, "You're doing it wrong."  

He's still extremely happy and affectionate, and still gives the best hugs.  It's still a very uncertain future for us, but one that has a little brightness.  I hope these insights and suggestions prove helpful to you.  Peace!

PS, we still love singing Blurred Lines together.  Don't judge!  ;)  It's really one of my favorite things to sing with Will!  :)

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).