The Heartache of Haircuts – On Sensory Processing Disorder

haircutToday, I hurt my child. Yes, you read that correctly. I physically restrained him, hurt him, and made him cry. And he is only four years old.

Why would I do such a thing, you might ask. The answer might surprise you.

He needed a haircut.

Did I beat or harm him in so many of the awful ways adults choose to brutalize their children? No, of course not. I love him. Like most of you, I would gladly give my life for him.

But, today, he needed a haircut. A haircut he didn’t want — not because he is incorrigible. It’s because he’s autistic, and many children with autism cannot tolerate the experience of a haircut.

A while ago, a story made the rounds of Ashley Bays, mother of an autistic two-year-old son. She took her little boy to a salon to get a haircut. When her son began screaming and reacting to the haircut, the salon owner came out and loudly berated Ashley for her son’s disruption of her salon. In tears, the mother apologized and explained her son’s autism. The stylist had to finish the child’s haircut on the sidewalk…Continued at What to Expect.  

I Let Him In: When Depression Comes Knocking at a Special Needs Parent’s Door

doorknock

This was not an easy post to write.  It was even harder to hit the publish button.  But when I decided to put myself out there, I did it with the intention of letting others know they are not alone in their journeys.  This is one snapshot of mine.  

I’ve said before that depression is much like an old lover.  One you’ve successfully managed to get out the door – along with all of his things – and begin a new life.  A life in which laundry gets done, friends get visited, lists get checked off, balanced meals get cooked, and the things you enjoy get enjoyed.  But something or a lot of things happen.  Usually in succession and often involving sleep loss, grief, financial or marital stress, etc. — and, under the weight of exhaustion, your resolve weakens.  That’s when he comes looking for you.  Whispering in your ear.  Telling you all your efforts are futile.  Crooning the familiar songs he sang to you before.  Knock, knock, knocking at your door.  Until you open it and invite him to come inside — and his seduction is complete.  And the next morning –every morning you wake beside him– you know you knew better.  But now his clothes are in the closet, his toothbrush beside yours, and he is ingrained into your life once more.

If you read me, you may have noticed you haven’t been reading me much lately.  I’ve noticed too.  I’ve noticed lots of things.  When I do, I race off to WordPress and create a post, give it a title, and even jot down some of the words that are clamoring to be released. But is isn’t long before he begins whispering to me. This post will take a lot of time.  Of course, if you write it, you’ll likely infuriate someone and will feel the need to respond.  Which will just upset you more than you already are.  You’re tired.  Tomorrow –you’ll write it tomorrow.  Of course, I don’t.  It doesn’t get written.  Thoughts and emotions keep pounding, and everything just gets louder. From the dishes being unloaded to the dog’s incessant barking to my children — Bronwyn just being five and Callum being a verbal stimmer. It’s all so very loud.  And all I want is to sit on a porch overlooking the mountains on a cool early morning and hear…nothing.  Nothing but the wind blowing and perhaps a little rain or moving water.  No voices.  No screaming.  No phone ringing.  No cacophony of everything I need to take of.  To sleep.  To read.  To write.  To recharge.  Because I am simply depleted.  I attempt to get my head together and manage to accomplish a thing or two.  But my constant companion draws me back in to myself.  His incessant whispering for me to lighten my load and sit down for a spell.  To put it off for another day.  To pull the covers over my head and attempt to hold the world back.  Yes, he knows how to talk to me.

My heart aches.  My fears bully me.  And even my bones feel tired.

I’m starting to see the things I feared and knew were coming.  I see my sweet little boy, excited by the mere presence of other children — but oblivious to their activities and play.  He jumps, laughs, and flaps away — and has no understanding that he isn’t a part of it all.  Part of me is grateful he doesn’t yet understand– while the other part of me just hurts.  Everywhere we go, we take two cars.  There are few things that we can confidently plan as a family.  It’s too crowded, too bright, too large, too hot, too long.  Too everything. People not seeing the delightful child he really is hurts. His sister having an uneven share of our time and attention hurts.  The looks we get hurt.  His discomfort hurts the most.

Sometimes the view from this ride is beautiful.  Sometimes, it’s fun.  But right now it is making me sick.  And I just want so very badly to be let off.  I want the support of my father, my stepmother, and my grandmother.  I want them to tell me it will be okay.  But they’re dead.  And, every time I get on the highway or have a strange pain, I fear dying myself.  Not for me, but because who will take care of him?  Who will fight for him?  And how – how – do I ensure that his sweet sister will understand that I love her equally though I cannot give of myself to her equally?  Some days – or weeks – it’s too much.

And, in my darkest moments, I fear that I am not enough. That I’m doing this all wrong.  Making the wrong decisions.  Not doing enough.  Doing too much.

Yes, I have been to see my doctor.  I have taken antidepressants.  They helped marginally, but my hair started falling out (a truly unfortunate side effect for a depressed person if ever there was one.)  So the doctor and I are trying again with another antidepressant.  Trying because there is no other choice.  For the alternatives to managing this are unacceptable.  My babies need all of me, therefore depression can be allowed none of me.  There simply isn’t enough room for him in my house.  I’ve told him he must leave.  To pack his stuff and get out.  Good riddance and all that.  So far, he hasn’t budged and has turned into a squatter instead.

But I know something he doesn’t.  I know the unconditional love and trust of two children who depend on me.  I know the maternal bliss of snuggling against their sleeping forms in the wee hours of the night.  And I know that, in this battle between him and me, who I’m really fighting for.  In nature, whoever gets between a mother and her young is always at a disadvantage.  He’d do well to remember that.

“Now the standard cure for one who is sunk is to consider those in actual destitution or physical suffering—this is an all-weather beatitude for gloom in general and fairly salutary day-time advice for everyone. But at three o’clock in the morning, a forgotten package has the same tragic importance as a death sentence, and the cure doesn’t work—and in a real dark night of the soul it is always three o’clock in the morning, day after day.” 

― F. Scott Fitzgerald, The Crack-Up 

If you liked this post, you might also like:

Somebody’s Knockin’

Why I Won’t Be Getting Mother of the Year: Layers of Understanding

DIY Special Needs Enrichment, Therapy, and Play on Pinterest

DIY Special Needs Enrichment, Therapy, and Play on Pinterest


I May Be Oversharing about My Special Needs Child, and That’s Okay

autismscrabbleI write about my children — in particular, my autistic child — on the Internet. I write about them and share my own experiences in raising them — for complete strangers to read. My joys, mistakes, successes, grief, guilt, self-doubt, and even those dark, middle-of-the-night moments of all-encompassing fear. I write about it all. That’s me. I’m a special needs parent blogger.

And there are some folks out there who take issue with it.

There are those who question the wisdom of sharing my child and my life with the whole world. On the surface, my actions seem unwise. Why would I “overshare” with the world? Why not just find real-life friends and support? Why do I put myself “out there”?

Well, just as the world isn’t an easy place to be for those with special needs, it often isn’t much kinder to their parents. A hundred years ago, parents of special needs children were likely to have larger families — sisters and brothers who helped with the daily needs of the family and home. Because people started their families earlier, there were often multiple generations able to help out. More aunts, uncles, cousins, and grandparents to call upon.

Yet, special needs families today aren’t usually so fortunate. Many of us are spread across the county — far from family. Many, due to the extended start of childbearing, no longer have the wisdom and comfort of our mothers, aunts, grandmothers, and other mothers who’ve made this journey before. We don’t all have the support of a church family or neighborhoods where we all know each others’ names.

So, special needs parents (and all parents really) find themselves adrift in a society in which, “How are you?” has no more meaning than “Hello.” We are isolated, with no one to tell us that we are doing it right, that we might try this, or that it isn’t our fault. Special needs parenting is a lonely journey for so many of us.

The Internet has changed that somewhat. In the last two years, I have interacted with thousands of other special needs parents. Those who are like me — just starting out and wondering if they are going to make it. Those a few years in — who share resources of what helped them not so long ago. Those whose children are grown — who reach out with a gentle pat and say, “Honey, you’re doing just fine. What you are feeling is normal. It’s gonna be okay.” All of them — all of them — sustain me and others like me. They are the community we need and cannot always find locally. They connect us and remind us of a basic human need — to know that we are not alone.

There are some who question the loyalty of a parent who would “violate her child’s trust” by exposing his needs and differences to the world. Why would I choose to share that which Continued at WhatToExpect.com…

A Most Extraordinary and Unexpected Gift

dear donor familyA most extraordinary and unexpected gift arrived in the mail today. Two letters from recipients of my dad’s donated tissues. Two people whose lives were enriched by increased mobility and a return to their normal lives from debilitating pain — one an RN who will soon return to her job.

Tissue donation doesn’t get the glamour treatment that organ donation does. But, for many, it returns them to having QUALITY of life. (Or vision, or healing from severe burns, etc.) Please consider it as a gift that you can give another one day. As Daddy put it, “Well, I won’t be needing them, so I might as well.” He would be pleased. I know I am.  :)

There are several places you can register your wishes online.  I have included one below.  It is most important, however, to let your family know your wishes.  When in doubt, most hospitals will not override their wishes.  So this talk should be had now.  Also, know that you have the right to specify an organ/tissue recipient be offered your gift FIRST.  Here’s a great candidate in desperate need now:  Sarah Murnaghan. 

To give the gift of organ or tissue donation:    DonateLife.net

Macro Lenses: Nitpicking in the Autism Community

macro

A macro lens

Fact:  According to the FDA’s “Food Action Defect Levels”, up to 30 “insect fragments” are allowed per 100g of peanut butter.  Since my favorite brand of honey roasted creamy peanut butter is 794g, this means that close to 240 insect fragments are legally acceptable in my current jar of peanut butter and “pose no inherent hazard to [my] health”.

peanut butterAs shocking as this factoid may be to those with delicate constitutions, I confess I’m not really worried about it.  I have, after all, watched Andrew Zimmern ingest a lot of gross stuff that is apparently quite nutritious.  Since my peanut butter has been pureed to death, I don’t actually have to see any insect fragments.  So, I like to pretend they aren’t there.  Why?  Well, it’s simple really.  I love peanut butter.  Peanut butter fudge.  Those creamy Sam’s Choice peanut butter cups at Wal-Mart.  Envisioning a world without peanut butter makes me feel deprived.  Since the world must accommodate both people and insects, I have arrived at the conclusion that no food can be perfect –least of all peanut butter—so there is little point to getting my knickers in a twist about it.  Peanut butter, aside from theoretical microscopic insect parts, has many fine qualities.  I pretend those insects aren’t there, so that I may continue to enjoy peanut butter.  (You don’t even want to know what’s allowed in hops.  Trust me.)

rembrandtIt’s not unlike art.  I’ve visited a handful of the great art galleries of the world.  I’ve been fortunate to see – in person – works by Michelangelo, Picasso, Rembrandt, and the like.  They were beautiful, sometimes haunting, and evocative.  The idea that I will be but one of millions to have gazed at these masterpieces makes me feel connected to the world – its past, present, and future.  But here’s the thing.  Like peanut butter, they come with imperfections.  They remain amazing testimonies to the genius of their creators.  But “The Masters” were human and inherently imperfect.

“But, Flappiness, whatever do you mean that Michelangelo’s works were imperfect?!”

Well, Gentle Reader, I mean exactly that.  If you were to take a fancy camera and put a really pricey macro lens on it, you’d see.  As I’m sure any art restorers working for a great museum could attest.  If you were to zoom in on a portion of a masterpiece, you’d find lots of little imperfections.  Smudges, inconsistency of color, evidence of images painted over previous ones.  You name it.  They’re there.  Which is precisely why I don’t carry a macro lens to the gallery.  (That and the fact that they probably won’t let me in their back rooms.)  I don’t want to see all of the imperfections.

A couple of days ago, I was involved in an interesting exchange in social media.  An image, created by Lizbeth from Four Sea Stars was making the rounds and being shared all over.  On the image – addressing autistic wandering/elopement – she stated, “…Oftentimes, the child is drawn to water.”  Quickly, a commenter jumped in to take issue with her wording of “drawn to”.  The commenter felt that it propagated the myth of autistic children as some sort of mystical creatures with water divining properties.  The commenter, who honestly was quite civil and never outright rude, felt that it was more appropriate to say that autistic people simply “like water”.  A lot of back and forth discussion ensued and people on both sides left irritated or nonplussed.  It mattered little that two well-respected autistic advocates disagreed and insisted that, yes, a large percentage ASD folks are drawn to water.  There was even a very good – very rational and detailed – explanation for why water is so much of a draw for those with sensory differences.  But it went on.  And on.  And on some more.

A few days later, Flannery from The Connor Chronicles, came under fire when she posted about the inadvertent harm well-meaning people can do when they incorrectly assume that all autistic persons are alike.  Parents of autistic children frequently receive messages from friends and acquaintances about such notable (and amazing) folks such as Carly Fleishman and Temple Grandin.  Now, these two remarkable people are not the problem and do much, respectively, to benefit the autism community.  The problem lies in the assumption some make that all autistic children will be like them – if only [insert common misconception here].  The macro lenses soon came out, and it made the rounds that she was attacking an innocent teenage girl.  Yet, a less contentious reading of her post (and past writings and efforts on behalf of the community) makes it clear that she was not attacking a child – merely the side effects of mass societal ignorance of autism.  Instead, the macro lenses focused upon one word in her post (“Carly’d”)– and all hell broke loose.  Obfuscating her purpose and garnering attention for those who prefer drama over awareness and action.

That’s when I realized what’s really going on here.  There’s a very small but vocal subset of this community (both neurotypical and otherwise) who have decided to keep their macro lenses on at all times.  They are so fixated on ferreting out all perceived (and sometimes real) imperfections of thinking that they are unwilling to take off their high-powered lenses to see people for who they really are – whole persons.  The macros stay on, and they lock focus upon everyone they suspect might evidence a little imperfection – especially if those writers have a respectably large platform.  And, as we already know, imperfections – perceived or otherwise – will always be found under a microscope.

It's some kind of produce. But under a macro lens, it's not quite as tasty looking, is it?

It’s some kind of produce. But under a macro lens, it’s not quite as tasty looking, is it?

That’s fine to do with peanut butter and Renaissance masters, if you really feel the need.  But human beings, by the nature of their complexity, cannot hold up intact under a macro lens.  And, by intact, I mean that they cannot be seen accurately with a macro lens.  You see just a portion of them.  Perhaps a wart or two.  But, if you don’t take off that lens and view the subject as a whole, then you will never truly see her.  You won’t recognize her in the grocery store – anymore than the lab tech who viewed the cells from her dermatology biopsy.  You won’t know that perhaps she simply has a different perspective.  You won’t care that she might be in the early and confusing days of her child’s autism diagnosis.  You won’t accept that just maybe her truth might be different from your own experience.  You won’t likely consider that she might – just might – have a point.  All you will see are the nitpicky imperfections in the lens you have chosen by which to view your world and its inhabitants.  And the problem with that is that you then go on to make assumptions about her every “like”, every word, and any of her friends whom you may have also viewed under the microscope.  She becomes no longer a person, but a symbol of all the “imperfections” your lens has captured.  It’s then easier to lump her and everyone you deem like her into a category of “bad”.  In our community’s case, enemies of autism.  Next to followers of Andrew Wakefield, that usually turns out to be parents.  However, it also involves wonderful and insightful self-advocates who simply disagree with your world view.

Am I saying that one should never point out what he believes to be faulty reasoning?  Of course not.  But attaching sinister motives to every statement made by those in the crosshairs of a macro lens is not okay.  It’s not just unfair.  It also deprives the one behind the camera.  It alienates him from some perfectly nice, intelligent, caring individuals who have found themselves inadvertently cast into the world of special needs advocacy.  Only most of these folks aren’t researchers.  They aren’t trained autism experts.  They likely cannot quit their jobs to go about considering and debating everything one would have them believe.  They’re just people–who love their children and genuinely want to make a difference in their child’s world.  They enter threads to connect to others, seek advice, and express their innermost fears, demons, and oftentimes – joys.  They write blogs they hope others will read and connect with.  They make social media images they hope will spread awareness.  In this case, an attempt to raise awareness of the prevalence of drowning in cases of autistic wandering.  This –after the deaths of three autistic children in one week.  There was no motive beyond that.  Only now there are a lot of hurt, angry, and bewildered parent advocates out there wondering why they can’t ever say or do anything right.  I know.  I’m one of them.

miss youOver the past few months, I’ve seen some good people on both ends of the autism spectrum grow weary of the scrutiny of the macro lens.  They are tired.  Their intentions have been mocked and twisted into something unrecognizable.  They’ve signed off of Facebook, quit their blogs, and returned to a life not under the microscope.  That’s a shame to me.  Because we’ve lost some important voices for awareness and acceptance.    Voices both typical and neurotypical.  Voices that have done much good for this community.  Who attempted to bring about positive change, but who could no longer tolerate being dangled before a contentious community and used for target practice.  I can’t say I blame them.  I’ve considered it myself.

Macro lenses are amazing devices.  For there is much beauty in the world when you look at it up close.  But they can also be dangerous for the user.  For, in looking at everything through them, you risk not seeing the big picture.  You risk losing perspective.  You risk getting run over by the Mack truck your lens cannot focus upon.  And, worse, you run the risk of finding the world – and all of its imperfections – a very ugly place in which to live.  You will no longer have the support of family, friends, and community – who’ve all run away from the cruelty of your camera.

self-macroAnd, inevitably, you will one day have to turn that macro lens –on yourself.   Only you may find yourself, through lack of practice and tolerance, unable to accurately or compassionately process what you see.   What a lonely experience of self-loathing that day will be.

For we human beings really are the sum of our parts.  All our parts.  Not just our word choices.  Not just our experiences.  Not just the spot on which we stand in our journeys.

And not just our neurology.

Why I Won’t Be Getting Mother of the Year (Guest Post for WhattoExpect.com)

If you have been a subscriber for a while, you might recognize this one from a year ago.  It’s my latest guest post for WhattoExpect.com.  We’ve had some developmental gains in the past year, and I’m still learning how to tame my fears.  But this was a snapshot in my journey, and it was a post I’m somewhat proud of.  :)  

wteI used to believe that clarity was epiphanic. As in, you don’t understand and then — presto whammo! — you have an experience, an epiphany, that brings about full insight and you are that much wiser for it.

I know better now. Parenting a child with special needs is good for that, teaching you all kinds of lessons you never volunteered to learn.

I now know that understanding is multi-layered. Clarity comes in concentric circles. Just when you think you have come to a level of peace and acceptance, something occurs and you realize that there is a whole deeper level of understanding with which to contend. This is how the painful and stressful stuff gets you. It peels back another layer, and there you are again.

I’m beginning to understand this a bit better now. Realizing that true understanding, acceptance, and sometimes grief are forever cycling, beginning again with each new layer revealed. Comprehending that the things I am worried about now with regard to my special needs child will simply evolve into more complex facets of themselves.

A week ago, we took our kids on our first road trip to visit family in North Georgia. It was an eight-hour car ride and things had been going quite well. Callum was so easygoing, happy to look out the window, stim, babble, and giggle. Bronwyn christened us into traveling parenthood with endless bouts of, “Are we there yet?” — which, at four, is not unexpected. I found an awesome classic country station on the radio and got my southern belle on belting out fun singalongs like “Living on Tulsa Time” and “Family Tradition.”

I felt normal. Positive. High-spirited even.

Just a couple of hours away from our destination, Sean and I decided to break for lunch. We chose a McDonalds with a play area — determined to allow the kids some time to run their little legs off a bit. And it was a really nice play area — sectioned off, indoor, safe, complete with tables and even a toddler zone. Even the parents were all nice — smiling at others and encouraging their children to be careful with the littler ones. It should have been ideal.  Continued at What to Expect…

Letter to the Family of Mikaela Lynch

broken heart

This is but one of many posts in the event “An Outpouring of Love for the Mikaela Lynch Family”.  

Last summer, my then 3 year old autistic son wandered out the front door of our home.  His 5 year old sister was trying to help her daddy bring in the groceries and left the front door cracked.  My husband thought our son was with me.  It took several minutes for us to realize that he wasn’t in the house.  That’s when we both looked at each other in horror and remembered the groceries being brought in.  We raced outside.  I was frantically screaming his name while reaching for my cell phone to call the police when I heard my husband call out from the back yard that he’d found him.   I have never been so grateful in my life.  The idea that someone or something that might have harmed him could have found him –instead of us– still chills me.  I’ll never forget that moment.

My husband and I are loving and responsible parents.  We have bolt locks and chain locks at the tops of our doors.  We have an alarm system we set to instant alert when we are inside our home.  We use our car’s safety child locks.  Even in the grocery store, I keep one hand on my son’s leg (sitting in the buggy) while reaching for the milk.

But he managed to walk away unnoticed anyway.

That’s because life is unpredictable.  It’s because I cannot afford a bodyguard and full time nanny.  It’s because we are just human –not computers –and our brains aren’t so good at multi-tasking.  It’s because our unique children’s minds and spirits are often drawn to the very things that can harm them.

Your loss is unspeakable.  And, yet, while you are going through the first dark days in the club that no parent ever wishes to join, you are being attacked.  Attacked by some in the media – who value contention and traffic over truth.  Attacked by average people – who do not understand autism and have never walked in your shoes.   All this while likely suffering the greatest attack of all –  the heartbroken regret of your own mind, bashing you for your lack of godly omniscience.

It’s not your fault.  Anymore than natural disasters, plane crashes, or cancer.  Those of us who have walked in your shoes – that of being a parent to an autistic child – have all experienced close calls and the subsequent emotional beating we give ourselves.  No, we don’t begin to know the pain you are in right now.  But, I assure you, we are haunted by it.  Haunted because we know that your child could so very easily have been ours.  Haunted because we know too well the giant bulls-eye an especially vulnerable child carries in life.  We are sickened by the pain insinuations of parental neglect must have on you.  We know the love you have for your daughter.  We know how hard you worked to help her meet the challenges of a very confusing world.  We know.

shield

When I heard of the contentious “news reports” directed at your family, it reminded me of an infamous “church” who seeks to further their own notoriety by protesting the funerals of innocent Americans.  As if, by creating a media circus of a family’s grief, they could further their own “cause” — in this case nothing more than the pennies earned on each click of the mouse.

But then I thought of the thousands of people who have made that church’s efforts futile by a simple act — a symbolic shielding of those protestors from the view of the deceased’s loved ones.  I thought of a local family targeted by that group and how they were comforted by nothing more than the presence and spare bedsheets of complete strangers.  No, I am not naïve enough to think that a flash blog will help to shoulder any of your grief or deflect the outrageous criticism directed toward you.  I know we are too late to prevent you from hearing those ugly insinuations.  But please know this post — along with hundreds of others — to be our sincere effort to try.  And though we are not likely to ever meet in person, know the collective arms of special-needs parents everywhere are wrapped around you in love and empathy.

If you have a child on the autism spectrum and would like information on autistic elopement — along with a link to a kit to assist you in a wandering crisis, visit AWAARE.

Ethical journalists treat sources, subjects and colleagues as human beings deserving of respect. Journalists should: * Recognize that private people have a greater right to control information about themselves than public officials and others who seek power, influence or attention. * Show good taste. * Avoid pandering to lurid curiosity. * Use special sensitivity when dealing with children. * Show compassion for those who may be affected adversely by news coverage. — (http://www.spj.org/ethicscode.asp)

One click on this image will send a message directly to the irresponsible publication in question — without rewarding the “reporter” with pay-per-click publicity. :)

Learning to Understand What Autistic People Understand (or Don’t): What You See Is Not What You Get

brainstorm1Today, I am pleased to have Emily of Mosaic of Minds on Flappiness.  This piece is a response to my  most recent post, “He Proved Me Wrong: On Autism and Presuming Competence”. As flattering as it is to be referenced in another post (well, usually), I was blown away by this sensitive and intelligent take on this issue.  Consider me a new fan.  :)

There are two opposite ways to misunderstand autistic people.  One is to assume they don’t understand when they do.  The other is to assume they do understand when they don’t.

My younger brother, who is very bright, had hyperlexia–a form of language development involving early reading, vocabulary, and mechanical knowledge, but delayed comprehension.  He loved Disney movies as a toddler, and we caught him spelling out “Walt Disney Pictures Presents” with alphabet blocks when he was two.  It can be hard to tell when a child growing up in a sea of words and books truly learns to read, but we think he taught himself to read when he was three.  Although he was late to talk and spoke very little at first, when he did start speaking, he had good vocabulary and grammar.  And when we spoke to him–the way my parents spoke to me, the way we’d speak to any verbally talented child–he seemed to give all the verbal and nonverbal indications that he understood.

But often, he didn’t.

In retrospect, the signs were there.  There was a particular way he stared sometimes when I talked to him that looked like a deer in the headlights.  Eyes large and blank, mouth open.  I figured there was no way he couldn’t understand me, so I thought he was doing it on purpose to annoy me.  It was only after the diagnosis of “Aspergers” that we realized that he really didn’t understand.

Flappiness wrote a beautiful but often painful post about the opposite problem: struggling to presume competence in a child who gives none of the cues to understanding we expect.  TRIGGER WARNING: this may be hard to read if you yourself have been presumed incompetent.  The reason I’m quoting her here is that she *does* understand the importance of presuming competence, and tries to do it, but it might still be hard to hear why it’s difficult.  If that’s true for you, please skip to the end of the block quote and continue reading.  She writes:

“Always presume competence” can be a hard rule for non-autistic folks to follow.  That’s not because we don’t agree – at least in theory.  But severely autistic people may not give a lot of signals that they understand something.  They often do not appear to be listening or watching.  And, when you ask them to do something based upon what they have seen or heard, many do not respond as we would expect them to.  In the absence of any visual indicators demonstrating competence, it is easy to wonder whether understanding is happening at all.  For, somewhere in the back of a typical person’s head, we wonder why someone who understands doesn’t respond when it’s in his best interests.  It’s a lot like religion.  You can be taught the tenets of your faith.  You can reason out your belief system in your head.  But, in the day to day grind of living, it is natural to question what we cannot see.  We wonder if there is a God out there.  And we wonder if our severely autistic loved ones really comprehend all that is happening around them.  Maybe you’ve never wondered.  Maybe you are like those fortunate folks who have never doubted their faith.  But, if you’re like me, you have wondered, worried, and sometimes been haunted by the possibility that you are wrong.  Or even that you are right.

When I began to be convinced of Callum’s autism, of the first things a mother of two autistic children told me was never to talk about him while he’s in the room and to always believe that he knows what is happening.  She related stories to me of her children recalling events from years earlier that she had believed they had not noticed.

But they had.  And with perfect recall of the details.  Because they didn’t talk at the time or cooperate with what was requested of them, she had assumed they weren’t listening. Having known them at that time, I would have agreed with her.  They didn’t appear to be listening at all.  At that time, they could barely talk.  No, we shouldn’t have assumed, but -unfortunately- it’s an easy mistake to make.

Fast forward several years, and now I have an autistic little one of my own.  But even having heard her story, I questioned the truth of it with regard to my own child.  I’ll admit that I was somewhat confident of my own ability to read him.  I thought I would see the proverbial light bulb go off and then I would presume competence.  But Callum, in the grand tradition of children everywhere, has humbled me recently.  We are having a little “language explosion” you see.  Almost every day now, he is surprising us with knowledge he had – but had not previously shown. Knowledge I was so very afraid he wasn’t absorbing.

Today, Callum spoke his name for the first time.  And I missed it.   It sounded more like “Cam”, so I didn’t pick it out of his typical babble chatter until he said it a few more times–while waving at his own reflection in the mirror.  (Yeah, I know.  Sometimes, I am not so smart.)  I remember turning and asked him if he’d said “Callum”.  So he looked back to the mirror, waved at himself again, and said, “Callum” — with the sweetest smile.  I’m sure I stopped breathing for just a moment.  Overjoyed though I was that he finally said his own name, what hit me was his determination to be seen and heard.  He kept on – until I got it — and then confirmed it.  Apparently, he was motivated to speak his name by the reflection of himself in the mirror.  A reflection he liked.

So, now I must learn how to adjust the mirror in my eyes to reflect who he really is and who he can be.  Because he is watching.  He is listening.  He is learning.And when he looks at himself through me, I want him to like and be inspired by what he sees.  For, if what he sees in my eyes is not faith in him, how will learn faith in himself?

All right, everyone back with us?

The problem is, most of us have a certain set of verbal or nonverbal cues we automatically assume mean understanding, and another set that we automatically assume mean incomprehension.  A particular sort of fixed-but-not-too fixed eye contact; nodding; mimicking our movements; interrupting only to ask an appropriate question or to “follow on” or “elaborate”–these and others seem to say, “I understand.”  Blank eyes, furrowed brow and puzzled facial expressions, looking around a lot, shrugging, unusual silence without questions and comments–these and others say, “I don’t understand.”  And most of the time, for most people, these work–otherwise, we’d have a different set of assumptions.  The problem, though, is these interpretations don’t feel like interpretations.  They’re automatic.  You look at someone and see “they understand” or “they don’t understand what I’m saying” the way you look at the sky and see it’s blue.  It takes a thoughtful person to even see how you could question it.  You see it, it’s there.

But autism doesn’t work like that.

It’s been said that autistic kids are monotone (but really, their pitch is wider-ranged and more variable than the average person’s; we just don’t hear it because we don’t expect it 1,2,3,4).  It’s been said that autistic kids have a poker face.  I don’t know of any studies actually investigating this, but my guess is it’s true for only a few.  The rest probably have subtle, or just different, expressions we don’t know how to interpret.  It’s been said that autistic people don’t express their feelings, even know what they are, until they explode in a dramatic meltdown of tears and yelling and maybe even flying fists.  Maybe–but isn’t it also possible that we don’t see the warning signs before the meltdown the way we might with a typically developing kid who is overtired, hungry, and on the way to a similar meltdown?  It’s been said that autistic kids are in their own world, that they don’t express love.  And it’s true that many don’t like hugs, don’t point, don’t follow their mothers’ joint attention.  But they feel connected and learn new words when their parents follow their joint attention, just like any other kid 5,6,7.  And some autistics, such as Ballestexistenz, have pointed out in video recordings all the signs of love and caring that autistic kids show.  Ones that weren’t conventional, weren’t expected, and so they were missed.

There’s a lot of emphasis on teaching autistic kids to understand how and why neurotypical people behave the way they do.  And there should be, so autistic kids no longer feel so adrift on the “wrong planet” where the rules don’t make any sense  There’s a lot of emphasis on teaching autistic kids to emit the cues we’re expecting, so we know how to interpret their feelings and behavior.  And this is a great thing for autistic people to be able to do, especially when dealing with people they’ll only have to deal with once or twice, who aren’t going to invest the time to learn their cues.  But parents, siblings, spouses, and friends who want to learn how to interpret their autistic loved one’s cues are on their own.  Only like-minded neurotypicals and autistic adults are encouraging them to do it.  Most don’t even know it needs to be done.  Unfortunately, a lot of neurotypical parents, siblings, spouses and friends don’t seem to realize that either.

And here’s something everyone in the autistic community should know: it’s hard to undo conditioning you didn’t even know you had, that’s as basic as seeing that the sky is blue, and replace it with….what?  As hard as it is to undo your basic reactions, as much patience and self-questioning as it takes, at least you know what’s required.  But when trying to figure out the real cues, how do you know what to look for?  It’s even harder if your autistic loved one can’t speak and tell you if you’re on the right track.  This is one of the most valuable things autistic bloggers do: not only do they tell you what the world looks like from their perspective, but you can sometimes catch little glimpses of what they look like from the outside, so you can tell whether your autistic loved one is experiencing a similar emotion.

This is a hard struggle, and I can understand why people looking only for casual friendships or acquaintanceships might be scared off by the work required (although as Rachel Cohen-Rottenberg points out, they are placing their own convenience above another human being’s need to feel connected).  But I think anyone who loves an autistic person and is connected with them in some long-term way is obligated to try.  We need to question our assumptions, observe our autistic loved one closely, ask them and other autistic people about anything we don’t understand (and there will be a lot of questions–and probably should be).  (By the way: not every autistic person always feels up to answering, or wants to field questions, something we should also respect–and ask someone else).

We probably will fail, a lot.  We need to be patient with ourselves and keep trying.  And if the autistic person in our lives grows up and one day asks, “why did you do this horrible thing?” We have to be able to look them in the eye, apologize, and say, “I’m sorry, I did the best I could, but I didn’t understand.”

To acknowledge that replacing our automatic social assumptions is hard is not an invitation to engage in a “woe is me” pity party.  We only have to learn to interpret a new set of social cues, not learn to imitate them ourselves–the autistic people in our lives have a much more difficult struggle than we do.  For other non-autistic people, it’s about realistically confirming, sympathizing, validating: yes, this is the unique situation involved with loving someone with autism, no, you’re not alone, yes, it’s hard, and yes, it’s OK to feel overwhelmed sometimes, even if other people have harder struggles. For autistic people, it’s about understanding that when we (inevitably) screw up sometimes, it’s not out of malice.  Some of us really are doing our best, and are open to learning, but we have our own limitations of time, energy, patience, or mental health to deal with.  So please bear with us as we keep learning. 

The world may not always understand the autistic person in our lives, no matter how “typical” they may have learned to appear.  But I’d like to think that we can.

Mosaic of Minds is a cognitive neuroscience student with a brother on the autism spectrum. She hopes to research the nature of talent & disability someday. She wants researchers & others to see autistic people as people, listen to them, & recognize their strengths as well as their disabilities. She loves critical thinking, challenging questions, and intellectual discussion. You can chat with her on Twitter and read her thoughts on autism research and more at Mosaic of Minds.

References:

  1. Yoram S. Bonneh, Yoram Levanon, Omrit Dean-Pardo, Lan Lossos, & Yael Adini (2010). Abnormal speech spectrum & increased pitch variability in young autistic children. Frontiers of Human Neuroscience 4: 237.
  2. K. Hubbard & D.A. Trauner (2007). Intonation and emotion in autistic spectrum disorders.  Journal of Psycholinguistics Research 36, pp. 159-173.
  3. A. Nadig & H. Shaw (2012). Acoustic & perceptual measurement of expressive prosody in high-functioning autism: increased pitch range and what it means to listeners. Journal of Autism & Developmental Disorders vol. 42 Iss. 4, pp. 499-511.
  4. Megha Sharda, T. Padma Subhadra, Sanchita Sahay, Chetan Nagaraja, Latika Singh, Ramesh Mishra, Amit Sen, Nidhi Singhal, Donna Erickson, & Nandini C. Singh (2010). Sounds of melody–pitch patterns of speech in autism. Neuroscience Letters Vol. 478 Iss. 1, pp. 42-45.
  5. Michael Siller & Marian Sigman (2002). The behaviors of parents of children with autism predict the subsequent development of their children’s communication. Journal of Autism & Developmental Disorders vol. 32 Iss. 2, pp. 77-89.
  6. Michael Siller & Marian Sigman (2008). Modeling longitudinal change in the language abilities of children with autism: parent behaviors and child characteristics as predictors of change. Developmental Psychology Vol. 44 Iss. 6, pp. 1691-1704.
  7. Twyla Y. Perryman, Alice S. Carter, Davniel S. Messinger, Wendy L. Stone, Andrada E. Ivanescu, & Paul J. Yoder (2012). Brief report: Parental child-directed speech as a predictor of receptive language in children with autism symptomatology.Journal of Autism & Developmental Disorders.

 

An Outpouring of Love for the Mikaela Lynch Family

blog loveToday, the body of 9 year old Mikaela Lynch was found.  Like so many autistic children, she wandered off and was eventually drawn to water.  My heart breaks for her devastated family — who have since been the targets of cruel accusations from those who know nothing about how easily such a thing can and does happen to our children.

This could have been my child.

Please join those of us in the autism & special needs community on Monday, May 20th in writing a blog post (bloggers) or a Facebook status update (non-bloggers) in support of Mikaela Lynch’s family.

We want to flood social media with love for the Lynch family and those who have suffered similar losses — under the cruel scrutiny of media and those who judge without knowing of what they speak.

If you would like to be a part of this movement please share this event & help us get the word out!

Note:
1) We feel it is important to NOT use Mikaela’s image without the consent of her family, now that the worst has happened.
2) We also do not want to send free traffic to those who have – without cause – cast suspicion on her family and other families who have experienced similar tragedy. In voicing your support, please do not link to or reference the journalist directly. She’s had quite enough fun already.