Monthly Archives: April 2012

Flappiness Is to “I Wish I Didn’t Have Aspergers”: #AutismPositivity2012

A few days ago, you or someone like you googled, “I Wish I Didn’t Have Aspergers”.  I have thought about you ever since.  Wondering what is happening in your life to cause you so much distress over something that is simply a part of who you are.  For I know there must be something, and it is obviously hard.  No, I don’t know your name.  I don’t know where you live.  I don’t know how the world has treated you.

But I have seen the pain in the eyes of my students on the spectrum.  As a teacher, I have witnessed the aftermath of your peers’ indifference, amusement at your social missteps, and even cruelty.  I have watched you try so hard to fit in to a world that doesn’t understand you any more than you struggle to understand them.

You try to make small talk, but it isn’t received as you intended.  You share your opinion in class, and are bewildered by their laughter.  Even some of the teachers and other adult staff sometimes seem annoyed.  There are all kinds of unwritten rules about what to say, what to do, how to look — and no matter how hard you try to get it right, you always seem to get it wrong.  The thing that people don’t seem to realize is that – inside – you are just a person who wants the same things everyone else does.  Friendship.  Respect.  Fun.  To share your interests and experiences with others.  Perhaps to meet someone special.

But right now I’m guessing you don’t have many of those things.  And you’re probably wondering if life is always going to be this hard.  If there will ever be a place you belong.  If you will ever be able to sit among a group of people without a running dialogue of worry, embarrassment, and checklists of those unspoken rules running through your head.

Clearly, you want to be “normal”.

Well, I just so happen to be someone you would consider “normal”.  (Whatever that is.  I’m here to tell you that I’ve known a lot of “normal” people.  Quite frankly, we’re all us strange – this mixed bag of humanity.)  But I make friends easily.  I understand those confusing social cues that seem to elude you.  And I have never lived in daily fear of being bullied and antagonized.  So, no, I have not lived your life, and I don’t know what it is like to be you.

But being what those in the autism world call neurotypical, I have made my own observations of the differences between people on the spectrum and people like myself.  One of the things autistic people are characterized by is having an affinity for detail.  Many of you notice so many things that neurotypicals never will.  It’s a really cool ability.  We NTs, on the other hand, aren’t as observant.  We tend to be blind to those who are different.  And, even when they are pointed out, many of us still fail to really see them.  A kind of emotional blindness, if you will.  And, it really is not intentional.  It’s just that it sometimes takes an extraordinary experience – such as parenting, loving, knowing, teaching, or working with someone on the spectrum for our eyes to be opened.  But without that experience, far too many of us remain blind to those right in front of them – their differences, what they share in common, what they need to navigate the world just a bit easier, and what they have to contribute to our world.

Yet some of us have had that extraordinary experience.  Some of us now have a new set of glasses with which to see the world.  As one who counts herself among them, I am so very grateful for that.

I’m so sorry that so many of us still have not had our eyes opened.  I’m sorry for the frustration and hurt that we have caused you – that would make you wish you were somebody other than who you are.  Yes, you do stand out.  But you know what?  So do some stars.  Some are just brighter, more colorful, and more interesting than all the other not-so-remarkable stars in the universe.  When I think of you, of others I have known like you — and my precious amazing boy, also autistic – I see stars.  And to me, and other NTs like me – whose vision has been strengthened – you are beautiful.

Right now, you may be looking around you and wondering where the heck we all are.  Are there people who will accept and appreciate you?  And are there others like you who have gone on to happy and fulfilling lives, having survived the very difficult years you are enduring right now?

The answer, I am so very pleased to tell you, is yes.  We are all over.  We are in this country and others.  We are in large cities and small towns.  We are universities and the workplace.  Churches and advocacy organizations.  And you may be too young to have an opportunity to break away from your small corner of the world to meet us all.  But we are here.  And we have our hearts, minds, and arms open and waiting for you.  As the saying goes, “It gets better.”  You just need to hang in a bit longer, learn as much as you can, and then step out into the world and begin bridging those connections.

In the meantime, you may be surprised to know that there is an entire online community and autism/Aspergers blogosphere already available to you.  Autistic/Aspie youth and adults, sympathetic NTs, and experts.  Websites, blogs, chat rooms, forums, support groups, Twitter, Facebook pages, and much more.  You would be surprised at the warmth, friendship, and understanding available right now — today — if you will just log on and seek it out.

For more messages of hope to you from the autism blogosphere, please visit the Autism Positivity Flash Blog.

It’s a big world out there.  And you haven’t even seen 1% of it.  There are happy and successful people just like you who are all too happy to tell you that there is a lot to look forward to in life.  Seek them out.  Connect to them.  Follow their advice.  And, hopefully, one day you will be in their shoes — proving to a young person just like yourself that there really is a place for him/her in the world.

For it is there — waiting for you to claim it.

If you would like to read more messages of hope from people in the autism community, please visit the Autism Positivity 2012 Flash Blog.

Are You Kidding Me?! Why Autism Positivity?

There’s been a lot of fussing and name calling in the ASD blogosphere of late.  It is centered not upon vaccines or biomedical treatment but on the call by some – including Thinking About Perspectives, a blogger group I am a member of – to bring a positive light to autism.  A lot of folks are embracing this view, but there are many who are frustrated, sad, and angry who are feeling alienated because their feelings don’t quite match up with all this positivity.And that makes me sad.  Because I hate the thought that people are out there, once again feeling like others are negating their own emotions.

Speaking for myself, I don’t think autism positivity is about denying the very real challenges being autistic or raising a child with autism presents.  If it were, then I’m afraid I would have to side with those who are against it.  The cold hard truth about autism is that each person affected by it is dealt a different set of cards.  And some of those cards are poor hands indeed.  What I mean by that is that life is certainly going to be easier for those who can communicate with others.  It is obviously going to be more pleasant for those whose sensory issues do not overtake them in a vicious assault every time they leave the house.  Of course it is preferable to be toilet trained than not, to be able to read than not, and to have the ability to make your own choices.  Yes, I want those things for my child.  I’d be crazy not to.  Yes, I am terrified he might not.  Because not having the freedom to direct your own life is a loss – and one I would have every right to grieve.  Without some sanctimonious autism cheerleader telling me how very happy I should be about it.

Which brings me back to my point.  Autism positivity is not a vast conspiracy to make everybody autistic.  It is not an attempt to discourage therapies that might improve the quality of lives affected by autism.  And it is not a movement to create guilt in parents who are struggling with very real issues related to the most severe cases of autism.

Yes, some of the hands dealt by autism have been tough.  But not all of them.  We call it a spectrum for a reason.  There are a very large number of people on that spectrum whose lives are fulfilling and happy.  People who have learned to navigate the neurotypical world.  Children, students, parents, spouses, coworkers, teachers, family, and community members.  People whose very unique perspectives and talents have contributed to our world.  And even some extraordinary minds who have helped to make it a better and more beautiful place – scientists, artists, engineers, and other great thinkers.

And here’s the thing. Those folks have to walk around hearing about epidemics, cures, gene therapy, social dysfunction, and disappointed parents.  They have to endure public discussions on their sexuality (or lack thereof) and answer personal questions on whether or not they understand the concept of love.  They know that perception of autism runs from people equating it with mental retardation to thinking it a “soft” condition that doesn’t even exist.  And the only people representing them on TV are geniuses or superheroes.  Given those roles from which to choose and identify with, can you blame them for wanting to present their own view of autism?  To want to shout from the rooftop that they are proud of who they are?  That they like themselves just fine?  That it is okay to find humor in their differences and to enjoy some of the perks of being autistic?  For there are perks.  And they have a right to like those perks.  They have a right to like themselves.  They have a right to not feel like a walking tragedy.   And they have a right to demand the world not treat them like one.

I joined the Autism Positivity 2012 Flash Blog Event because I want to send a message to the young people who are still fighting in the trenches of acceptance.  Those kids who get up every day and battle loud, smelly, crowded hallways just to get to classrooms filled with students and teachers who don’t understand their differences and don’t appreciate their contributions.  I have seen those tears throughout my years of teaching.  I have hid them in back rooms of the library to cool off tear-stained faces with cold cloths.  Kids whose peers, teachers, and even family don’t begin to understand how very brave and tough they have to be to function in what is a daily battlefield for them.  All while being told that there is something terribly wrong with them.

Yet I don’t even know if my child will be “high functioning” enough to even have this to look forward to.  I hope.  And, yes, I pray.  But his cards are still face down on the table.

No, I am not in denial.  I have seen severe autism.  It is still way too early to know what choices my son will have available to him.  But even if the dreams I have for him are not realized, I refuse to not take joy in what I have in him.  I refuse to not be amazed by the wonders of his mind.  I refuse to allow my own grief –which I confess to experiencing every day – to cast a shadow on his love for life and his pride in himself.  Every human being on the planet deserves to be celebrated and cherished – not matter what challenges they face.

For I know that the roots of his self-worth are reflected in my eyes.  Mine.  And, no matter what, I want him to like what he sees.

If you would like to participate in the #AutismPostivity2012 Flash Blog Event, please visit our page.  You don’t even have to be a blogger!  🙂

To “I Wish I Didn’t Have Aspergers”: An #AutismPositivity2012 Flash Blog Event

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog.  We do know the searcher clicked on it in an attempt to find what they needed.  And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking.  What would we say to that person?  What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance?  What if it were a person who might never stumble across the amazing voices speaking for autism acceptance?  What if that person thought himself/herself all alone?  What would we say about the present?  What would we say about the future?  What would we say about happiness?  And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for “I Wish I Didn’t Have Aspergers”.  But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

We are asking every blogger in the autism community to write a message of positivity to “I Wish I Didn’t Have Aspergers”.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

And – for those of you who do not blog but wish to join in – please post your positivity message to http://autismpositivity.wordpress.com

Please join with us on the last day of Autism Awareness/Acceptance Month – April 30th – in a flash blog of autism positivity.

To participate:

  1. Publish your post on April 30th in the following title format:  “[Your Blog] to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012”.
  2. Share your post on Twitter and Facebook, using that hashtag.
  3. Add your link to the Autism Positivity website and grab the badge:
  4. Share/reblog this message to your blog, page, etc.

This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue.  We are:  30 Days of Autism, Outrunning the Storm, The Third Glance, Aspie Kid, Flappiness Is, Quirky and Laughing, Life on the Spectrum, Fairy Tale Forgotten, The Aspie Side of Life, and Inner Aspie.

A Very Fine Pickle Indeed – Telling Tales Out of School

Hindsight is a funny thing.  The clarity that comes with it is elusive when you need it, but it never fails to show up and smirk when you don’t.

Last year, a Facebook acquaintance ambushed me at a retirement party and suggested that I pursue real writing rather than concentrating my creative energies on Facebook statuses.  Appealing to my vanity, he told me I had a “distinctive voice”.  Yeah…you know I just ate that up.  But after years of uninspired resume, application letter, and obituary writing for friends and family, it occurred to me that I needed an outlet.   I had tried blogging before, but it lacked a focus and I soon abandoned it.

In the spirit of “writing what you know”, I went and looked up autism parenting blogs.  I found Babble’s top autism blogs, checked out a few, and found that I suddenly had a lot to say.  And realized with chagrin that I had been saying it, but to people who weren’t particularly invested (friends and family not directly affected by autism).  I had been blabbering away about my experience without a willing audience and needed to give my poor friends a break.  After reading a few blogging tips, brainstorming a name, and creating Twitter and Facebook accounts to find some readers, I created an account on WordPress, wrote my first post, and timidly entered the autism blogosphere.  My goal was simple.  I wanted to build up a readership of about 75-100 people (similar to a friend of mine’s beer blog) and meet real people who have been in my shoes and were willing to talk autism.

Imagine my surprise – and I confess my delight – when, after four days of blogging, my “Apology” post took off.  Not like those hilarious treadmill blooper videos, mind you – they’re totally awesome.   But 56,000 hits in a single day.  Which, for a four-day old niche blog, is pretty viral.  A couple of weeks after that, “Dear Shopper” took off as well.  And, in almost surreal timing, the following day “11 Things” was “Freshly Pressed” on the WordPress.com homepage.

Suffice it to say, it was a most extraordinary experience for a newbie blogger.  Suddenly I had hundreds of comments and emails—encouraging me, sharing their own stories, wanting me to guest post, asking my opinion, or offering me an “opportunity” to sell their product.   Yep, my Warhol-allocated 15 minutes was something else.  Now that they’re over, I am relieved.  Statistically, it is unlikely I’ll get any more.  And mine were a good 15 minutes – unlike those unfortunate souls whose minutes came while dangling on a ski lift with their pants down.  One really must practice gratitude when one can.

Had that hindsight been present, I would have spent more time thinking about the implications of blogging than social networking or a name for my blog.  And I would have changed my name – not merely going by my maiden name, but changing it altogether.

You see, I’m in a very fine pickle indeed – of my own making – and there’s really nothing that can be done about it.    Well, I could dramatically post a notice from a relative that I had been hit on the head by an asteroid, but that would make me unhappy.  I happen to like blogging.  I love interacting with this community of parents – who understand the value of support so much as to offer it to strangers they will likely never lay eyes upon.  Every parent would walk through fire for their children.  But you guys-along with every parent of every child who has been vulnerable in an unforgiving world – have actually all gotten the call to suit up. We come from all walks of life, but we share this one thing in common.  Nope, I’m not giving it up.

But going by my own identity was probably a less than stellar idea.  Some might think I’m saying that due to the sinister nature of the internet.   They’d be wrong.  Because it isn’t that I don’t want any of you to have my name, it’s that I wish everyone I knew in real life didn’t!  In a large enough city, it wouldn’t be a problem.

But I live in a small one.  We have one high school.  I personally know all of our local candidates for superintendent. Almost all of our school level administrators were born and raised in this county.  And, having been employed here for 15 years, I have taught with, trained with, worked for, or attended high school with most of them.  You don’t have to play six degrees in this town.  Usually two will suffice.

My point is this:  the day will come when we have a concern or complaint.  It just will.  (And I am one of the least rock the boat natured women you’ll ever meet.)

And I will have to think about whether or not this teacher or that therapist or which administrator is related to somebody else and whether it might be a problem. We have awesome people in my school system, and I do have faith that most of my colleagues want the best for every child.  But if you work for the same people you might one day have to petition, you’d be a fool to be unaware.

All this would be bad enough for any special needs parent, but then I had to go and start blogging – using my real name.  It wasn’t that it was a secret really.  My friends and family knew. I just wasn’t making an effort to promote it to whole city.   But someone saw “Apology” on the Autism Speaks site and it got out.  Now some folks are interested and asking me about it.  Which is certainly no big deal.  But at some point, someone who works with him will see it as well.  And, considering how careful and sensitive teachers of special needs kids already have to be, imagine how thrilled they would be to hear the mom in the IEP is an autism blogger.  Add to that the abundance of lawyers in my family, and I’ll be surprised if meetings with me aren’t recorded and legally represented!

In short, there are many opportunities here to royally infuriate someone with the power to make my life miserable.  And, yes, I know the First Amendment (barring stupidity or slander) will protect me.  But that isn’t really the point, is it?  I have to live and work in this town.  I happen to like most of these people.   I need my job.  But, most importantly, I don’t want anyone resenting or avoiding my child because they fear I might go and raise a stink on my blog.  I’m not going to do that to anyone who works with my child period.  But I wouldn’t blame them for being a little leery about it.

If I had blogged about, say, stamp collecting, it would have been alright.   If that one post hadn’t taken off, it would have been okay.  But the internet is an unpredictable thing.  And I have recently learned it is a very small world after all.

So here I am, blogging away while attempting to analyze every possible consequence of each post.  Who might read this?  How might they interpret it?  Does it suggest anyone’s identity?  Will a family member or friend be inadvertently offended or affected?  Might the school system see this as criticism?  And – if I attempt to minimize negative ramifications – am I remaining true to me?  Censoring myself is hardly therapeutic.

So, yes, I’m going to continue what I’m doing.  (Mainly because I’m lazy and all other autism advocacy seems to involve running several miles in unflattering clothing.)  I’m still going to talk about what I need to talk about or say what I think needs to be said.  I’m simply going to continue to look very carefully at how I say it.

No, I didn’t think about any of this beforehand, and I should have.  So those of you who are thinking about writing your own blog, be forewarned.  You really have only three options when blogging: use a nom de plume, write pure fluff that will offend no one, or grow thicker skin.  The first two options won’t work for me.  So I’m working on that third one.  While repeatedly looking over my shoulder.  And maintaining possibly the largest unpublished drafts folder in the history of blogging.

Sometimes I am not so smart.  :/

“I always feel like somebody’s watchin me and I got no privacy. Oh oh oh…”  

-Rockwell

Giveaway Winner(s)!: I Wish I Were Engulfed in Flames

So I dropped all of the commenters names into a bowl and drew one.  That lucky winner is:  SortedMegaBlocks!  Congratulations.  The publisher will soon be sending a brand new copy your way.  🙂

But then I got to thinking about the copy I have.  And, being a librarian, I’m all about sharing the love when it comes to books.  So, I drew again.  And, if he doesn’t mind a copy with a few bent page corners (Please don’t turn me in to the Librarian Police.  They’re sure to be tougher on one of their own.) , that copy will go to:  Jim Reeve!

I’ll be emailing you both to get your addresses.  🙂

Somebody’s Knockin’

Yesterday, four people stopped to ask if I was okay.  Four.  I wasn’t sick.  I wasn’t crying.  And I had even done up my hair and worn makeup — something I get increasingly bad about doing as the school year begins to wind down.   And though the question was nothing but kind concern, the expression on their faces was unsettling.  Cocking their head and silently taking me in, as if they were seeing something not immediately obvious.

I think I said I was just tired.

But one of them looked a little more and asked again.  And I could tell she was really seeing what I was trying hard to not reveal.  She herself has lived years of worry and grief for her own child – for different reasons, but the effect is much the same.  She didn’t put what she saw into words, but I knew what words they would be.

There is an expression that can be seen sometimes in the eyes of parents of special needs children, parents whose children are drug addicted, and parents whose children have died.  In short, any parent whose dreams for their children have been significantly altered or ended.  I think you can’t fully see it – every nuance – until you are able to recognize it in yourself.   It’s not even there most of the time.  But, some days you look and it’s there again.  And it isn’t a look of anguish – as some might expect.  No, it’s a look of…nothing.

Today I feel like a walking place holder.  My body goes to work, but not my enthusiasm.  I eat the food.  But I’m not really hungry.  I laugh at people’s jokes, but I’m not sure that they are funny.  I smile at my children’s antics, but I am somewhere else.  And, because I don’t know where that is, I can’t seem to call myself back.

It’s funny how differently people handle a crisis.  There are some who fall apart during the crisis.  They rage and hurt and grieve — and then accept it and move on.  I’m of the opinion those folks fare best.  There are those who disappear.  They can’t handle it and never do — never realizing that stopping and taking a good look at what’s following them is the cure for what haunts them.  And then there are the autopilots.  They announce the crisis, put together a crisis team, make a plan, and oversee its implementation.  These folks appear to be doing wonderfully — and lots of folks congratulate them for their strength.  I’m one of those.

The problem, of course, is when the immediate crisis is over.  The support team is no longer on red alert.  Others think they are fine.  And those seemingly limitless  reserves of adrenaline are now empty.

That’s how I feel right now.  Empty.  Numb.

It seemed like I was working toward some very specific things this school year — Callum starting daycare, increasing therapy, his turning three and getting a diagnosis, his entering public school, the IEP, etc.  And, suddenly, all of those things have passed.  I gotta tell you –it feels a little anticlimactic.

Perhaps it is simply the realization that there is no finish line.  It’s the long haul.  And my tank – at least today – is empty.  Heck, it’s so empty I don’t even have the energy to try to fill it back up.  I’m just plain tuckered out mentally.  Content to sit in my stranded state and look at all the people passing by.

But the thing about motherhood is that I don’t have the option of doing that for long.  Melancholy is so much easier to wallow in before you have two little souls depending on you.  And I’m realizing that there is only so much longer I can go before middle of the night insomnia is going to take me down.

So I’m giving myself two weeks.  If I haven’t shaken this off in two weeks, I’m going to see the doctor.  I think I’m also going to try to get away for a day or two by myself.  To sit in a hammock, read a book, and stop this incessant …thinking.

For I have allowed all my worries — the what-ifs, the what-will-bes, the attempts to explain, and the guilt of not being able to be everything that my son needs– to stir up a cacophony in my mind , in endless repeating cycles, that are now attacking because everything I was previously so focused upon has come to be.  And yet little has changed.

If I were a computer, I’d give myself a hard reboot.

I’ll be okay.  Because I have to be okay.  Because these sweet little babies I love require me to be so.  The trick, I guess, is to figure out how long you can sit back and decompress before you begin to atrophy.   Before melancholy is no longer just an unwelcome visitor continuing to knock on your door — but one whom you invite to come inside and sit down a spell…before never leaving.

And to remember that all of these feelings, thoughts, and worries are not to be given permission to steal my joy.  I am very aware that I am blessed and very grateful for this sweet little boy whose future I keep obsessing over.  He is not the cause of this melancholy.  That’s me.  My head.  My giving in to fear.

And there is nothing to do but work it out.  To stand up and begin going through the motions — until, like walking, mental muscle memory takes over and every little thing  isn’t a major effort.

This journey?  No, it’s definitely not for sissies.   But that’s okay.  I’m tougher than I look, and I’m stronger than I feel.

And I’m not opening that door.

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” 

-Kahil Gibran

(Giveaway!) Book Review: I Wish I Were Engulfed in Flames by Jeni Decker

Note:  I contacted Jeni Decker a couple of months ago to request a copy for review of her book I Wish I Were Engulfed in Flames, having heard about it on various social networking sites.  Her publisher sent a review copy and will send another free copy to the lucky giveaway winner.  Other than the review copy, I have not received or been offered any sort of compensation or blog promotion for my review.  

Okay, kids.  Let me preface my review of I Wish I Were Engulfed in Flames by Jeni Decker with a warning.  If you are rendered insensible from frank discussion of topics such as homosexuality, masturbation, and poop, please gather your belongings and locate the nearest exit.  Because, though I adore and value you as much as any of my readers, there is no point encouraging you to read a book that will upset your constitution.  Each and every one of us have preferences in our reading material.  If you are offended by these topics, think mothers should never share potentially embarrassing stories of their children, or are a stalwart social conservative who can’t take a little liberal ribbing – by all means find another book to read.  (This is not to be construed as a political stance of my own.  I have friends all over the political spectrum and am quite happy to remain that way.)  Jeni Decker is unapologetically true to both herself and her opinions and does not mince her words.  Some of you might get offended.  Those of you with more relaxed literary tastes, however, should remain for the rest of my review.

(Jeni Decker should kiss me for that warning, by the way.  It’s enough to tempt curious souls, don’t you think?)  😉

I Wish I Were Engulfed in Flames is parts memoir, manifesto, and poetry all rolled into one.  They come at you in separate bursts that end up telling the story of Jeni Decker’s admittedly chaotic life.  Decker, mother to two children on the autism spectrum and wife to a husband in renal failure, is a woman struggling to deal with the challenging hand life dealt her while managing to pursue a successful writing and film making career.  That she manages to do it with such humor and unflinching honesty is to her credit.  But she does — and all while maintaining a healthy perspective of “Well, why not me?”.

And all prior teasing about shocking content aside, spectrum kids do have real issues with socially acceptable behavior.  Shocking content is often in the job description of parents of ASD kids.  My child is too young to worry about that right now, but I have taught spectrum kids before.  I remember how horrified I was the first time one such child demonstrated a lack of awareness of sexually inappropriate behavior. I was caught between really not wanting to address it, pity for the oblivious child who had to have it gently explained, and a sense of duty to do so anyway.  Puberty, suffice it to say, is rough on kids with autism.  And rough on the parents/caregivers who love them.  Many of Decker’s funnier stories are related to her kids attempts to make sense of the sexual world, its nature and mores.  They, in the direct way of the ASD child, ask uncomfortable questions that Decker feels no more ready to answer than any of the rest of us.  So, she does it in the only way she knows how – being herself – with often hilarious yet touching results.

Interspersed with her irreverent humor are glimpses into Decker the woman – an artistic soul deeply in love with and committed to her children, yet passionate in her beliefs and individuality.

“I am one person with many facts, each one as important as the other, and I don’t believe one facet negates the other.”

If you share her politics, you’ll get a kick out her humor.  Even if you don’t, try to overlook those jabs and appreciate the book for what it is – a brutally honest portrait of the life of a parent with multiple children on the spectrum.  Lightning often does strike twice in autism families.  (It struck three times in mine.)  We need to hear these stories and share these perspectives.

What impresses me more than Decker’s wit, however, are the subtle yet poignant moments demonstrating the very real differences in thinking between autistics and neurotypicals.  In one chapter, Decker tells the story of an impossible dream of her son’s and his attempts to have a particular company contact him about his idea.  He perseverates on it, and she must endure months of his asking for mail every day.  At one point, Decker even wrote the company herself – begging them to respond to her enthusiastic but oh-so-different little boy.  They never did.  She relates notes home from teachers about disastrous school days for her children.  Days that obviously hurt the mother inside even while Decker maintains a brave and defensive stance.  And strewn throughout her narrative are her son’s touching, often unintentionally moving journal entries and poems.

“I wonder if there are hidden colors in the world?  There just might be hidden colors in the world…” 

I liked I Wish I Were Engulfed in Flames.  There are moments throughout the book that took me by surprise in their heartfelt rendering of the uniqueness of the autistic mind and the complexities of preparing these children of ours for the perceptions of the world.  I left it thinking how, though similar in our joys, frustrations, and fears for our children, we are all actually very different in our individual journeys with autism.   We all have stories to tell.  And we must be fearless in hearing them.  Decker says it best here:

“There is a difference between resignation and acceptance.  You have to eat what’s on your plate, not shove it around until it resembles something else.  But you’ve really made it when you can find the good that comes out of the pain.  Pain and joy are equally necessary in life — without one, you wouldn’t be able to recognize the other.  What I’ve learned about life is that it’s about getting from point A to point B but everyone does this differently…With each living person, history is left to judge what their contribution to the world might be.  Labels, supposedly, inform who we are, but the beauty of life is that it enables us to accept or reject them at will.  We can allow others to define us, or decide for ourselves who we really are.”

To enter for a free copy of I Wish I Were Engulfed in Flames, please leave a comment below.  I will announce a winner on April 18th.  Good luck!

If you would like to check out Jeni Decker, you can locate her on Twitter, her website, or Facebook.

For more reading by parents of multiple spectrum kids, check out Adventures in Extreme Parenthood by Sunday Stillwell. 

A Taste of Normal

Callum having a ball on the porch swing.

“Nobody realizes that some people expend tremendous energy merely to be normal.”
Albert Camus

One of the first things my good friend Christy shared with me about being a special needs mom is that it is isolating.  It’s isolating for so many reasons.  There is the obvious one – that no one seems to know exactly what you are going through.  And then the reasons you can’t anticipate until you experience them.  The not being able to sit down to enjoy yourself so why bother going?  The  emotions you don’t really want to claim but still exist – the pain of watching typical children having fun, the irritation listening to the parent of the typical child bragging about every little thing you would be too if only you were in her shoes, the anger toward others for daring to have the all-too-human reaction of curiosity, pity, or fear of your child.  Oh yeah, it’s isolating, no matter how much your friends and family still love you and want your company.

People who haven’t experienced it don’t get it.  And, to be fair, “don’t get it” is a popular phrase used in our community to describe everyone not us, but it isn’t really fair.  It’s not my fault that I “don’t get” what it is like to be a POW, cancer patient, or natural disaster survivor.  I simply haven’t experienced it.  And neither have they experienced what we have.  It just is.  I suppose twinges of resentment toward those who don’t get it probably just are as well.  Neither good nor bad – just there.  I think what makes it hard, however, is that people don’t understand just how traumatic the experience can be.  At least in the early days when the future is hazy at best, when you are still attempting to bargain with God, when you aren’t at all certain Fate knew what it was doing assigning this seemingly overwhelming job to you.  There are increasing numbers of parents of special needs children being diagnosed with post traumatic stress disorder.  The same disorder that affects victims of violence and disaster.  But it is invisible in a special needs parent.  After all, to the rest of the world, nobody died.  And the people who like and love you quite naturally want you to be the same person you were.  But you aren’t.  You aren’t your normal self.  Because normal no longer applies to any facet of your life.

This weekend, I had an extraordinary experience.  We took our little family of four to visit a high school friend of my husband’s, Matt.  Matt was in town for Easter visiting his parents at their home.  He brought his 4-year-old NT child Gavin with him.  His sister was there with her 14 month old little girl as well.  Matt was not able to bring his wife or their oldest child Deacon- a sweet little 9-year-old boy with severe autism.  Deacon doesn’t travel well right now, so this was just a quick visit to see his family.

We arrived for dinner.  And I didn’t have to launch into a long explanation for why my son wouldn’t eat their food.  We went into the play area of the living room.  And I didn’t have to endure the seemingly endless attempts to engage him with toys.  When I told them he likes to bat at things on a string, they took it in stride.  Matt’s dad and mom were not at all afraid to touch Callum, yet at the same time knew to go about it slowly.  And they delighted in him, talking about how much he reminded them of their grandson.  Soon, Matt’s dad had Callum on the back porch in a swing.  And my child, who normally is happy but fairly mellow while visiting, was shrieking in giggles and enthusiastic vocalizations.  Soon, he had Callum and the other children loaded up for their first tractor ride.  Matt’s sister and mom weren’t fazed by Callum at all.  And Matt’s 4-year-old Gavin didn’t even once look at my son strangely.  In fact, that precious little boy – upon listening to me repeatedly direct Callum to communicate what he wanted with a sign – actually walked over to me and, in all seriousness and concern, informed me, “He can’t talk. He can’t tell you.”  And then, satisfied he had taken up for Callum, ran off to go play with my daughter.

I even got to sit down and chat for a while.

Before we left, Matt’s parents invited us to bring Callum any time we needed a break.  “We know how to do this.  We’ve done this before.  Seriously, anytime”,  Matt’s dad offered.

It was the most…normal visit with friends and family we’ve had since beginning this journey with Callum.    If you have been on a similar journey, then you know exactly what I’m talking about.

First "tractor" ride.

I don’t mean normal in that I’m calling my child abnormal.  He isn’t in the least abnormal.  He is a just a little boy who smiles, gets excited, laughs, giggles, loves, and plays like any child.  He just expresses all of those a little differently.  I mean normal in that I wasn’t the least bit on edge.  I didn’t need to explain or apologize.  I wasn’t the least bit worried my child would be misunderstood.  You know — normal.  And, though Callum is only three years old, I hadn’t had a taste of normal in what seemed like forever.

While hanging out at the lake with Callum, Matt asked Sean if he knew any other autism dads in our area.  Now I know why.  Now I know why our local CARD holds family days.  Now I understand why there are autism play groups.  Because not only do we as parents need moments of normalcy, so do our special needs kids.  Callum is normally a happy little boy, and he loves being wherever we take him. But around perfect strangers?  I’ve never seen my son so all out happy before.  It’s so easy to think that, because he seems oblivious, he is oblivious.  Yet, clearly, he is not.  He instantly responded to those who knew how to interact with him.  He got a little taste of normal too.

And it got me thinking about how the world could be.  If only those who haven’t experienced our reality for a little while could.  If people were educated about autism in their schools, churches, and communities.   If all of our sons and daughters could be brought out to join the world with no fear of being stared at or feared.  If autism awareness/acceptance became normal rather than some idealistic dream.

If only.

 “You may say I’m a dreamer.  But I’m not the only one.”  

-John Lennon

You might also like:
“Dear Friend Whom I Haven’t Seen Much of Lately” 

“Dear Friend Hesitant to Interact with My Special Needs Child”