Category Archives: My Soapbox (Shame on Somebody Somewhere)

10 Keys to Success in Working with Special Needs Parents

IMG_4722Every now and then, I come across articles giving suggestions for interacting with parents of special needs children.  Usually, they’re written by an educator or a special needs parent and are well-meaning.  But I’ve noticed that they’re usually missing something.  Either they don’t have a clue what special needs parents go through or need.  Or they don’t have a clue what the real life of a teacher is like or the precarious position they are operating from when advocating for students and advising parents.  So, the suggestions are incomplete because they’re either unrealistic or coming from a place of not knowing.

I’ve had the unique experience of sitting on both sides of the IEP table.  I’m both a veteran teacher and the parent of a high needs child with nonverbal autism.  And that gives me insight that’s both helpful as well as painful.  It’s difficult to sit in on an IEP now – either my own child’s or someone else’s – knowing what I know.  I want to jump in and say things that might not be welcome.  I want to fight for services I know there is little money for.  I want to bang my head on the table, knowing all too well how what I’m hearing will come across to the child’s parent.  I want to lash out, because I know when I’m being “handled.” I know, because I’ve been – and am – in their shoes, both the educators’ and the parents’.

Here is what I wish my colleagues knew about how to forge positive relationships with parents of special needs students:

  1. Assume nothing. Over the years, we meet a lot of parent types.  And like everybody else, we tend to categorize them.  We quickly infer whether they have an education, are likely to help their children with homework, or if they know anything about their child’s disability.  We then react or condescend accordingly.  Be careful about that.  I’ve met highly educated parents who know little about their child’s differences.  And I’ve known poor parents with terrible grammar and threadbare clothing who’ve researched their child’s condition tirelessly. People will surprise you, so make no assumptions based on appearance, community standing, or diction.
  2. Understand that the child you work with isn’t the child they live with. You’re seeing just a snapshot of that child in an environment that can be stressful, unfamiliar, and unforgiving.  The child you believe to be distant may be quite loving at home.  The child you believe won’t communicate at all may very well communicate with his siblings.  Remember that no one is the same in all settings. Not even you.  Once you learn what a child is capable of outside of school, work to create a similar comfort level in the school.
  3. Give them a chance to talk. Special needs parenting can be a lonely affair.  While friends are posting about baseball wins and science fair prizes, our children’s successes aren’t easily appreciated by all.  But parents of children with disabilities have the same need to brag on our children, to voice our fears, and to soak up all the little stories you can share with us.  It matters.  And this meeting with you may be the only chance they have all year.
  4. Ask for their insight. Just because they might not be fluent in educational or therapeutic terminology (or they may be), it doesn’t mean they don’t have unique insight into their child.  Listening to how the child functions at home and in the community can inform how you approach instruction, behavior management, etc.  There’s no lab quite like living with a child with a disability.  Respect their experience, and benefit from it when you can.
  5. Reward their child. Often, special needs kids aren’t recognized in front of their peers and their community.  This is defeating to everyone. The students need their accomplishments celebrated. Even if they aren’t cognitively capable of understanding the award being given, everyone can benefit from applause now and then. Peers need to learn to appreciate different kinds of success.  Parents need a moment to feel proud and take pictures.  Our communities can always use a smile.  Don’t forget your special needs students when it comes time to celebrate.  You may have to come up with creative and unusual rewards.  But do it.  And do it up big.
  6. Give the gentle nudge, and then walk the first step with them. If you want the parent to register with an autism center, special needs athletics, or a parent support group, take it one step further beyond merely mentioning it.  Facilitate an introduction, if possible.  Send a link by email.  Ask for a flyer and personally hand it to them.  Sometimes the daily life of a special needs parent is overwhelming.  You intend to do things, but other stuff gets in the way.  If you can, help them get started in things you think might benefit them and their family.  It might be just what they need but don’t quite have the energy to initiate.
  7. Offer support services for their other children. Alicia Arenas gave a wonderful TED Talk about “glass children” – the children of special needs siblings.  These kids have their own needs that are often unmet.  They may go years without ever being able to speak to anyone who knows where they’re coming from.  Start a support group for siblings of disabled students right in your school.  Give them a place to share their experiences.  This will support the entire family and earn you brownie points with parents who worry just as much about their typical kids – but, by necessity, must focus more attention on their siblings.
  8. Surprise them with positive emails and text messages. It’s funny how many school districts frown upon this sort of thing.  But they’re foolish to do so.  There is nothing that will put a parent in your corner quicker than to send random positive pictures and texts home.  I don’t have time to talk on the phone.  But a text in the middle of my day showing him participating in circle time with a “He did ____ today!” melts my heart to goo.  A teacher or aide taking time to do that convinces me he’s loved – which will go a long way to forging positive parent-school relationships.  Learn how to use the little emoticons and apps that will cover other kids’ faces from the photo and text happy things about your students.  It’s a sound investment.
  9. Help their peers to interact with and understand their children. Teach acceptance.  Talk about differences.  Start a lunch buddy program.  Read stories aloud that will foster empathy.  Push, cajole, and fight for the emotional well-being of their children in school.  Not only will this do much to increase parents’ confidence in the school, it will have a direct impact on the child’s school performance.
  10. Tell them the truth. If you know that services they want for their child will not be approved by higher-ups, do not lie and say they are unavailable in your school.  Technically, there is no such thing as “not available” – if a student with a disability requires it to learn.  Tell the parent to call for an IEP meeting, make your recommendations to the staffing specialist/ESE director/principal, etc., and make the higher-ups address the request.  Yes, advocating for students and not incurring the wrath of administrators is a balancing act.  But by playing a part in dishonesty, you are ultimately perpetuating the cycle of students in your district not getting needed services.  And that’s not why you became a teacher.

IEPs and some interactions with special needs parents aren’t always fun.  Lack of funding and awareness are to blame – although the system pits parents and schools against one another.  But it doesn’t have to be that way.  My son’s IEP team laughs, shares cute stories, celebrates successes, speaks honestly about expectations and struggles, and generally functions beautifully.  But that didn’t happen magically or overnight.  In the end, positive school-parent relationships are key.  Invest in that, and you invest in both your students as well as your own happiness as a professional.

Letter to the NEA: “On the Chronically Tarded and Medically Annoying”

k11878021Recently, a speech by NEA President Lily Eskelsen Garcia on what teachers are expected to do each day flooded social media.  While many shared the clip and applauded some of its excellent points, it didn’t take long for outrage to set in.  When discussing the challenges inherent to differentiating classroom instruction, Ms. Garcia listed a series of learning disabilities that ended with the phrase “the chronically tarded and medically annoying.”  That didn’t go over well with a lot of people, including me.

Setting aside my initial dismay at her choice of words, I was further disappointed by your response to the controversy.  First, there was a delay.  Now, this video went viral.  I personally saw it dozens of times in my Facebook and Twitter feeds.  Had I been her, the moment I realized I’d thrown out the word tarded, I wouldn’t have waited to correct it.  I would have immediately raced to my social media accounts and begged forgiveness for my verbal blunder.

She didn’t do that.  A month following her speech, she tweeted to the effect of it was an error (“stepping on a word”) combined with a poorly conceived joke.  (I’m guessing social media’s negative reaction to those tweets is why she deleted them shortly thereafter.)  I confess that like other advocates for special needs, I’m having difficulty with her explanation.

chillThat’s because the rest of the speech was fantastic. She channeled her inner Winston Churchill in a way that was well-considered, thought-provoking, and passionate.  At first, I was cheering her on and enjoying that feeling of “Yes, she’s speaking for us!”  Then came the tarded and annoying line, and my jaw dropped.

I have no idea whether or not she accidentally tripped over the word tardy or not.  I could have bought that and probably would’ve with a prompt and dignified apology – were that the only problem with her sentence.  But it wasn’t. It was followed by the phrase “medically annoying.”  She explained that was a badly worded joke, triggering a real “What you talking about, Willis?” moment for me.  As I said, the rest of her speech was excellent.  And, see, stirring speeches don’t happen by accident.  Churchill’s iconic rallying words weren’t extemporaneous and neither were hers.  She obviously took some time with it. It was the kind of speech or essay a writer goes over and over, picking out the weeds, because you know it to be truth, and you want that truth conveyed.  I find it difficult to believe she wouldn’t have questioned her joke.  Since all of the other items in the series preceding it were a legitimate, non-humorous list of learning disabilities, it doesn’t even make sense to have the last two be jokes out of context. And the second one is a play of words on a phrase used to describe children who are hooked up to tracheostomy tubes and portable oxygen.  How could that possibly seem like a good joke?

Next, she posted her video apology and elaborated on the same explanation.  I’ve already stated why many of us are unsatisfied with it.  However, I wasn’t lining up with those demanding her resignation.  (Since I don’t purport to know where her heart was when she wrote that line, I’m not willing to sign a petition for her removal.)  But her apology video is where things got worse.  She laughed.  She laughed about a controversy that – whether unkind or simply ill-conceived – had a lot of people believing she made fun of disabled children.  While serving as the president of the nation’s largest teacher’s union, a powerful group of people one would hope would be sensitive to the needs of special education students.  Special needs students who have families who love them dearly.  Families who struggle more than most to prepare their children for an uncertain future.  Mothers like me, up at 2AM writing to you on a laptop in the dark, awake with an autistic child who suffers serious sleep issues. And, instead of apologizing in a respectful manner befitting the high emotions surrounding this controversy, she laughed.  I hope it doesn’t come as a surprise that many of us did not share her amusement. There’s a…not-so-subtle tone of censure in her laughter for any of us crazy enough to believe that was her intention. Perhaps it wasn’t her intention to say those things. But since she did, she fails to see the onus is on her to prove it – not giggle about it.

But even that’s not what’s most upsetting.  Now, I’ll admit I’m not familiar with the inner workings of a large advocacy group, but I cannot imagine an organization as big as the NEA doesn’t have a team on this.  Not solely dedicated perhaps, but I’m guessing you folks at the very least held a meeting on this drama.  A meeting staffed with some highly educated people in the education profession.  Since I doubt she prepared, produced, and posted the video all alone, that means that other people in the top seats of the NEA also thought the response to be an appropriate one.  That’s what’s really bothering me.

You see, not only am I the parent of a special needs child, I’m a teacher.  I am also a fellow NEA member.  I am one of you.  And today I’m embarrassed to be associated with you.

No, I’m not calling for anyone’s resignation. There’s entirely too much of that sort of thing these days, and I’m sure you’re probably perfectly nice people who’ve made some errors in judgment. But I want you to know – because it matters – how your handling of this situation has disappointed our profession by further damaging already shaky perceptions parents of special needs children have about public education. Not by a simple mistake, but a series of them – highlighting your (and, by association, teachers’) insensitivity and lack of respect for the very people we seek to serve.  Children.  Since you are teachers, I shouldn’t have to remind you of the higher standard to which we are held.  Simply put: The “largest labor union committed to advancing the cause of public education” either inadvertently or intentionally insulted our most vulnerable students.  And then voted to post a video laughing about it. 

 What you’re supposed to do when you hurt people is apologize, quickly and respectfully.  You’re supposed to be forthright in your explanation.  And if you are a major policy leader, you’re supposed to shout your dissatisfaction with your actions and commitment to improvement from the rooftop.  That fact that all of you couldn’t see to do that doesn’t speak well for your advocacy for special education students and teachers in this country, who are presumably included under the umbrella of your mission statement.

I sincerely hope you hold another meeting.  I hope that you don’t choose to chalk this up to a culture increasingly easy to offend.  You are the National Education Association. I implore you to understand that more is and should be expected of your leadership.  What we do and whom we serve are too important for flippancy.

Teacher, teach thyself.

 

8,915 total views, no views today

A Little Girl Laughed Today: On Special Needs Feel-Good Shares That Don’t Feel So Good

download (4)Today, I saw a scene that would have stopped you in your tracks, if only you knew what preceded it.  I witnessed a moment I wouldn’t have imagined in darker days for this girl.  I won’t tell you how I know her story, because I know her parents aren’t looking to make her famous. There were no photographs.

What matters is what happened.  And what happened stole my breath.  Because this girl has been picked on — badly.  She has suffered enormously with triggers causing behaviors that are alienating and confusing to others.  She has no friends.  

But today was amazing.  Today, some kids who took the time to get to know her a little – kids who have no knowledge of autism, but don’t really require it because they are innately kind and cheerful – made her laugh.  And watching her laugh made them laugh and smile and laugh some more.  They were three kids just cracking up laughing over something that was pretty funny in a slapstick kind of way.  She laughed for a long time.

It was beautiful.  Not in that “How sweet and heroic of him to take the autistic girl to the prom” kind of viral sweetness that draws you in, despite the lingering questions over what kind of romantic hopes the girl might have on Saturday morning.  Not in the way that whispers, “See what a wonderful person I am? I’m kind to someone you’d never expect.   But I did this amazing thing.  Let’s tell everyone about it and make her one day possibly reflect on how she is so different that only one selfless person wanted her company.” 

I cringe over these stories.  I do think that what many of these kids, celebrities, and strangers have done has been well-intentioned.   It’s the way we share it that’s bothering me.  It’s the way we gush over it and make special needs people famous for a day — because some person did what others would have considered unthinkable.  My problem isn’t the action taken.  It’s the echoes left behind after we’ve marveled so publicly.  The questions the girl may have about her own worth as a person — if the whole world went crazy over somebody being kind to her.  

A little girl laughed today.  I don’t have a video to share of it.  But I can describe it for you.  An autistic girl who rarely smiled and interacted with others – because of cruelty and the nature of her disability – laughed with other children today.  A child who had need of friendship, shared interests, fun, and laughter like every other child— but who was plagued by sensory overload and a lack of awareness and acceptance – laughed with other children.  Giggled and snorted even.  How I wish I could’ve recorded it – not for you nice folks, but for those who love her.  They would’ve cherished it.  

And she laughed because some nice kids took a genuine interest in her.  It wasn’t to make a point or get praise; they just think she’s interesting and wanted her company.  And she thought they were worth knowing and laughing with.  It’s a triumph for her.  I’m the only person who saw it, and that’s perfectly okay with me.  Because they know it, and she’ll remember it.  She made friends.  They were happy for her and for themselves.  And that means she’ll likely try it again.  I sure hope so.  I hope that she laughs a lot more in her life.

Mostly, I hope that her friendship skills continue to grow and that she makes the kinds of friends who will be nurturing and a pleasure to spend time with.  The kind who aren’t looking to make a public statement, but who intend to value her friendship beyond the viral tweets and shares.  I hope that one day nobody sees her as a surprising candidate for prom date — and instead just wave at her as they dance by.  I want her to hear messages that aren’t “Yay!  You’re here! We’re so surprised!” and are instead “Of course, you are here, because you’re one of us, and it’s where you belong.”

These are my hopes for her.  And my hopes for my own child.  The circumstances and events may change, but I hope for the same thing for all the kids not yet on the playground.  

A little girl laughed today — and took a few steps closer to those in her world.  Every day, I pray that others will meet her halfway — only without looking over their shoulders for the camera.

Because I don’t ever want her to see that camera and wonder why it’s there.     

There’s Still Time: Love and the Autistic Child in Your Life

windowOnce upon a time there was an autistic child. He wasn’t “easy.” He didn’t talk like the other children in the family. He didn’t play the same games. He wasn’t interested in going to the same places — hot festivals, toy stores, and noisy restaurants. His family loved him, but he often wasn’t included. He wasn’t invited for sleepovers. He didn’t get the same special outings as his siblings or cousins. Initially, he didn’t notice. But as he grew older, he did. When they came by to pick up his siblings, he wanted to go too. When everyone left without him, he stood at the window and watched them drive away. But his family believed his parents understood– that he was too much to handle.

But he wasn’t. He was a joy. The outings he enjoyed were simple — rides in the car, trips to the grocery store, splashing in the pool, playing in the mud, swinging in the park. But, for whatever reason, he was never invited to do any of those things – the things he could do and enjoy — and kept being passed over for the children in the family who, presumably, were more fun to spend time with.

He continued to learn, develop, and grow. Eventually, he knew. He knew he was different. But what he didn’t know was what the family had assumed he would — that  he was loved equally. That’s because love isn’t what’s declared. Love is what’s done. It’s easily identified in any language – or lack thereof. And when dispensed unequally – and obviously — it denies both the receiver and the giver.

He knows. You know.  And there’s still time to do it differently.

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…

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…

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.

Letter to the Family of Mikaela Lynch

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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.

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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. :)

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.

He Proved Me Wrong: On Autism and Presuming Competence

mirrorOne of the phrases that you hear a lot in the autism world is “Always presume competence.”  If you haven’t heard the saying, it’s a simple concept.  Autism is a neurological issue in the brain –not a mental illness or intellectual disability.  Yet, some people assume that it must necessarily coincide with an intellectual disability.  (Which is just an incorrect as assuming that everyone with autism is a genius– another autism myth.) Autism exists in persons with widely different intellectual abilities.  From the intellectually disabled to the average Joe to geniuses.  So, because we currently lack the ability to assess the intelligence of the severely affected, we don’t know what is happening in their minds.  It might be that a perfectly intelligent person is hidden behind his or her autistic traits, and we simply don’t know how to interact with them.  And it could also be that an autistic person may be intellectually disabled and lack – to varying degrees – the ability to comprehend what is happening around him.  But, in the absence of knowing for certain, then we simply must give such persons the benefit of the doubt.  I would certainly hope that – if I were in their shoes – the same would be done for me.

But “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.

My smart little stinker is proving me wrong. And I’ve never been so happy to be wrong in my entire life. I worried that he would lack the capacity to advocate for his own needs. That worry ate me alive inside. It haunted me. I was stuck, and I couldn’t get unstuck. It wasn’t that I didn’t believe in my head what others were saying.  But faith is hard in the absence of proof.  My fears for him have been impacting my perception of what he knows and can do.  That has led me to an important realization.  I must tame my fears.  I must accept that fear is nothing but a good survival tool.  Like every emotion, it has a purpose.  It makes us run from danger.  But the only danger with regard to believing in his abilities is the off-chance I’m wrong and suffer the disappointment.  And my fear of disappointment is a selfish reason to give in to worry.  Not disappointment in him, of course, but disappointment that he might not be able to direct his own life.

I have always been a believer in “Prepare for the worst, and you’ll never be disappointed–only pleasantly surprised on occasion.”  Which is a very good motto when building bridges and skyscrapers.  Unfortunately, it isn’t such a great motto when raising developmentally delayed children.  For, like all children, they see themselves reflected in our eyes.

Callum CheeseToday, 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?