Losing My Convictions

buttingheadsNot so very long ago, I knew what I thought about things. I could debate them point by point with relative ease and felt comfortable with the conclusions I reached. I identified myself as a libertarian-leaning Republican – conservative both fiscally and in terms of defense, but socially liberal. Central to my thinking is the sincere belief that most things the government undertakes turn out to be disasters. I am suspicious of decisions made by committees and generally believe the fewer cooks in the kitchen the better. And – raised by a lawyer – I’m equally suspicious of new laws and constitutional amendments, believing them to often be the result of emotional reactions rather than well-considered policy.

 But convictions are a funny thing. Sometimes all it takes to shake up your belief system is a personal experience with what you didn’t know before. The fundamentalist Christian mother who finds herself loving a gay child. The pro-life couple whose amniocentesis shows a baby whose genetics are incompatible with life. The anti-marijuana legalization police officer who is racked with pain from bone cancer and nausea from chemo. The fiscally liberal woman who finds taxes and regulations strangling her small business. Life is like that sometimes, and irony mocks us.

 Five years ago, I had many convictions. One of them was a sincere belief that the Department of Education was the worst thing to ever happen to U.S. Education. My belief in that wasn’t based merely on my party’s stance. Unlike a lot a politicians, I actually graduated from a college of education. I have been trained in ridiculous theories, participated in wastes of expenditure, and seen firsthand the effects of an educational culture that values test scores over knowledge. I still believe that U.S. educational policy is absurd and that each new generation is just a bit more ignorant than their parents. It’s why I send my daughter to a private school, and I won’t apologize for that. But now I find myself unsure of my prior held convictions – and that’s because of Callum.

 You see, I now know that I’m a hypocrite. I’m a hypocrite because I am now depending upon the Department of Education and federal law to protect my child from a substandard education. If it were not for the IDEA, my son would not have any of what he has now nor would he have anything I am fighting for him to receive. If it were not for state oversight, school districts would not provide for his special needs. IDEA safeguards are the only big sticks available for me to carry as I walk softly through the IEP battleground. Now I find myself dependent upon the very agency I generally abhor. So, I’m a walking, talking hypocrite. And that has a lot of implications for many of my core beliefs.

 What else do I hold to be true – until I have walked in the shoes of one directly affected by it? What other political philosophies are incompatible with the needs of other human beings just like me? How can I gratefully accept that which I have decried – or voted against?

 Becoming the mother of a special needs child didn’t just shake up my world; it shook up my mind. I am not lost so much as I am now aware of everything I don’t know. Suspicious of every viewpoint I hear. And for a very simple reason – most people know not of what they speak. Not really know. They’ve heard about it. They’ve read about it. They imagine how they would feel if it were them. They compare it to something they know that isn’t entirely (or at all) related. And they espouse – and vote –from the comfort of their unaffected lives.

 That realization has left me without many convictions, cast adrift in a sea of political parties who don’t represent me at all. Reading social media commentary from friends and family who don’t yet realize the ease of becoming a hypocrite as well – when life runs up and knocks them over on the playground. People who haven’t yet had to fight for the well being of another. Who haven’t been desperate, shunned, violated, sick, divorced, disabled, broke, or any of the myriad occurrences that can shake up one’s world. People who weed their friends list based upon political parties or religious views. People who don’t know – or yet know – what they would really think if it happened to them.

 I see very little of the world in black and white these days. It’s all a bunch of varying shades of gray. Which makes it hard to wholly embrace any viewpoints at all or cheer any platform. Instead my mind immediately goes to “What if it was Bronwyn? What if it was Callum?” And then I have my answer., at least for me. The problem is that no political party exists whose mission statement is to do unto others as they would have done unto them. And none of them will admit “Clearly, what we thought would work didn’t. Let’s start over.” Which is exactly what we need with regard to education, health care, taxes, drugs, and so much more. Until that happens, color me unimpressed and label me an independent.

 In the meantime, World, please just…be kind to one another in how we define our problems. It’s rough out there.

“I don’t believe in superstars
Organic food and foreign cars
I don’t believe the price of gold
The certainty of growing old
That right is right and left is wrong
That north and south can’t get along
That east is east and west is west
And bein’ first is always best
But I believe in love
I believe in babies
I believe in mom and dad
And I believe in you.”

-Don Williams, “I Believe in Love

 

 

Why Autism Families Are So Angry with Disney

walt-disney-castle-20299809Life for an autistic child is full of no’s.

No, those children don’t want to play with you.

No, you won’t be able to tolerate this restaurant, theater, store, etc.

No, we can’t/won’t/don’t service kids like you.

No. No. No.

As parents of severely autistic children, we hear a lot of no’s as well. You get so used to all the no’s that they cease to surprise you anymore. You expect them. You are prepared to fight them, but lose a lot. And you steel your heart for many disappointments.

Like, for example, the disappointment you feel when your child’s school pictures arrive — and it’s evident the photographer made no effort to spend the extra time necessary to get a good one. The expression is awkward, sad, or simply…vacant. Every year. Every time.

Or the disappointment you feel when your child cannot tolerate the sensory assault of participating in scouting, youth sports, children’s gyms, or art classes. And you have to carry him out the door screaming, suffering, and worse — brokenhearted.

The disappointment you feel in your fellow man when they stare, become annoyed, or make comments about your child’s autistic behaviors. Behaviors your child cannot control. Behaviors that still don’t prevent your family from needing to run errands, go out in public, and have fun on occasion.

And so you grow thicker skin, and you try to help your child to do so as well. You tell yourself that the no’s don’t matter. You try to smile when well-intentioned people tell you that you “must be a special person” to be given this child. But you don’t feel very special. You feel helpless. You see your child trying so hard to navigate a world that he cannot fully access. You see the future — and all the no’s that will certainly be coming. All the normal expectations of college, marriage, children — that aren’t necessarily in the cards for your beloved child. You try so hard to make every moment as beautiful and wonderful as you can.

Because — in the dark hours of worry — you sense the need to fill your child’s memories with as much joy and love as you are able. Because you know there will come a day when you are gone. And there might not be anyone left who will care if your child receives more than just shelter and food. There will come a time when there are no more special days just because.

Knowing this is coming, you seek out people, organizations, and opportunities so that your child can have as many iconic childhood experiences and joys as he is able. You learn to embrace the yes’s and those rare days in which your child gets his heart’s desire. You learn to savor present joy when you can — while simultaneously mourning the joys that may never be. Your entire family becomes skilled in adapting. Because the world adapts little — even for little boys and girls besieged and overwhelmed by it.

Recently, special needs families have been disappointed again.  Continued at What to Expect…

On the Failures of Triage: When Mom’s in Short Supply

I found this in Bronwyn's room one day after school.

I found this in Bronwyn’s room one day after school.

Triage tri·age (tr -äzh , tr äzh ) n. 1. A process for sorting injured people into groups based on their need for or likely benefit from immediate medical treatment. Triage is used in hospital emergency rooms, on battlefields, and at disaster sites when limited medical resources must be allocated. 2. A system used to allocate a scarce commodity, such as food, only to those capable of deriving the greatest benefit from it. 3. A process in which things are ranked in terms of importance or priority. -thefreedictionary.com

When it comes to loving, nurturing, and meeting the needs of one’s children, the term “triage” doesn’t come to mind. No mother holds a sleeping baby in the wee hours of the night and ever imagines a reality in which that child’s needs rank below another’s. I certainly didn’t.

I know differently now.

On the battlefield, triage is a necessity. It’s a cruel necessity, but it saves the greatest number of lives. When there aren’t enough medical personnel and beds, you simply have to determine who needs care the soonest. But, like all the hard decisions in life, the truth is that triage – being subjective – sometimes fails. Sometimes, the fellow you thought could hold off for a couple of hours has a heart attack in the waiting room while you are tending to a trauma victim.

When you have a special needs child and typical children, triage becomes your new reality. No, it isn’t triage in the life-saving sense, but it is in every other way that matters. If you must choose between gymnastics lessons for one and speech therapy for the other, you pick speech. And, if your typical child is having problems organizing her room, that problem gets trumped by the autistic child’s penchant for throwing household objects. No, it isn’t fair. It just is. In the ER, the limited resources are beds, imaging, and experts. In the special needs family, they are mom, dad, time, money, and energy. You’d like to think that – as a mother – you are limitless. But that’s a lie we tell ourselves. The only thing a mother has without limitation is love. Unfortunately, children do need more than love.

My little girl is six years-old. Bright, enthusiastic, silly, and sweet. And, because she loves playing with other children and left kindergarten reading at a third grade level, I thought she was okay. Yes, I knew that her father has ADHD. I knew that it is statistically more likely in siblings of autistic children. I knew that she is described by so many as “high energy”. But – compared to our autistic child’s global developmental delays, meltdowns, and busy therapy schedule – her issues didn’t seem like problems.

But they were.

This past summer, it started to become obvious something wasn’t right with her. Removed from her structured school schedule and cooped up in the house most of the time, she became a child who was very difficult to live with. She began to throw tantrums that were off the scale. Our household became a very stressful place to be. It was as if she had a motor attached to her that never needed recharging. When she spoke, she shouted. When she sang, she screamed. Her play was frenzied. She demanded constant attention – to the point of deliberately annoying us to get it. And she couldn’t attend to even the smallest task by herself. What began to really worry me, however, was that she seemed oblivious to the reactions of her same-age friends. She was annoying them with her outbursts, and she didn’t even realize it.

At first, I thought she was just feeling neglected and acting out. I made a concerted effort during the summer to take her on mommy-daughter days out, trips to the library without her brother, extra time spending the night at her grandmother’s, and anything I thought would make her feel extra-special. I even had her tested for gifted, knowing that some gifted characteristics can seem like hyperactivity. But the days out became unpleasant memories of pulling her off of store displays, repeated pleas to lower her voice or stop kicking someone’s chair, and more tantrums. Her grandmother began to voice concerns about Bronwyn wearing her out. She couldn’t sit still for the gifted screening. And the library? [Insert hysterical laughter here.]

I waited until school started to see if it would help. It didn’t. And then the notes started coming home. Red cards pulled. Trips to the principal’s office. Sitting out at recess to finish assignments. She was coming home sad, angry, and confused. And, as soon as she walked in the door, she bounced off the walls – almost literally. One day, she came home upset. She said that two of her friends now didn’t like her. Apparently, her jumping around knocked over one little boy and made him angry. Her constant kicking of her friend’s desk lead to “I’m not your friend anymore.” She didn’t want to go to school in the mornings.

The rule of thumb with regard to medication and ADHD is usually, “When it begins to affect a child academically and/or socially, it’s time to intervene.” Academically, she was fine. But I realized that she was hurting socially. It was time to have the ADHD talk with her doctor.

That talk went really well. I was worried that Bronwyn would behave like a complete angel during the visit. (You know –in the same way one’s car stops making that sound when you take it to the mechanic.) Yet, bless her little heart, she sang loudly, ran around the room, and even displayed her tendency to talk so fast she has to stop to take a deep breath before continuing. The doctor saw it, and she gave us the required questionnaires for her teachers and us to fill out. (I was so happy that she showed all her ADHD tendencies in one visit that I took her to Baskin-Robbins afterward. Yes, I did.) It was interesting to compare the teachers’ perspectives to ours. I was pretty relieved to see that – when you held the forms up to one another – the ratings were almost identical in every area. I confess that part of me is still suspicious about ADHD diagnoses. As a teacher, I’ve often felt that too many kids are diagnosed and on meds. Yes, it was a relief that others saw what we were seeing.

She began ADHD meds three weeks ago. I didn’t expect to see results very quickly. But she came home that day – and every day that week – with a green (good) card. She finished all her work. She told me it was easier for her “to be good”. (Which I’ll admit broke my heart a little. In truth, there is no such thing as a bad 6 year-old.) And, when we took her to speech and occupational therapy, the therapists came out and reported that she “was a different child.” Later that day, she came home and sat at the dining room table working on a marker masterpiece – for three hours without moving. It’s kind of surreal. When she is on that medicine, she has good days. She comes home happy and proud of herself.

Things still aren’t perfect. Right now, she takes just one dose per day that seems to wear off. When it wears off, it’s just as bad – if not a little worse. She spent a few nights waking way too early, but that seems to have eased a bit. She has afternoons when she is quite emotional and unreasonable. And she has become more finicky about food. We have already adjusted the medication once. I’m hoping we can tweak things a bit to help with those issues. But, overall, I’m amazed. I’ve had a couple of folks tell me that you can tell it’s a genuine case of ADHD sometimes by how instantaneous the response is to the meds. I hope that’s true. I hope we are doing the right thing. It feels right. But self-doubt still wakes me in the middle of the night and haunts me during the witching hours of anxiety.

It isn’t the only thing that haunts me. I’m haunted by the knowledge that my baby girl sat too long in the waiting room. That – while we have been obsessed trying to meet the needs of our son – we delayed meeting her needs as well. I wonder why it all wasn’t completely obvious to me. I know how to love them equally – and endlessly. But I’m not at all sure there is enough of me to go around.

Last night, while snuggling, she asked me how much I love her. Before I got to the part about “all the way to the moon and back”, she said, “I know you love me a lot. But you love Callum just a little bit more don’t you? Because he’s special, right?” A little part of me died inside. I quickly corrected her. Tried to find the right words. Prayed she’d never forget them. It was a great many more words I can’t and would not quote verbatim. But their essence was, “Before you were born, I dreamed of you. Just you.”

I hope she believes me. I hope that one day they know I did the best I could. I hope they will forget all the ways I could have done it better and will remember all the ways I loved them instead.

And I hope they know that while triage is a necessity of the world – it has never been recognized in the heart of a mother.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity. It dares all things and crushes down remorselessly all that stands in its path.”

- Agatha Christie

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 

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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…