Tag Archives: aspergers

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.

Bell’s Palsy: My Tour Guide to Autism

bp2In the past couple of years, some clever people have created online autism simulations. Autism simulations attempt to sensitize neurotypical people to what those with autism experience on a daily basis. When you play an online autism simulation video, you’re immediately bombarded with confusing sensory input – loud and discordant sound, bright lights, and camera movements that cause vestibular discomfort. Voices and background noise become one, and the busy world suddenly becomes an unpleasant place in which to reside.

But it’s just a video. Two minutes of noise and visual chaos, and you’re done. I’ve watched them. And, while I appreciate what the creators aim to accomplish with them, I’ve understood that I wasn’t greatly enlightened by the experience.

Bell’s Palsy changed everything.

Four months ago, I pulled into my workplace, got out of my car, and attempted to smile at a co-worker. That’s when I realized half of my face wasn’t working. I walked inside, looked in a mirror, and decided I was having a stroke. After a quick trip to the ER and a brain scan, it was determined that I had simply come down with Bell’s Palsy, a form of facial paralysis resulting from damage to the facial nerves. Relieved that it wasn’t something life-limiting, I returned to work and attempted to feign a positive attitude about my now jarring facial expression.

As it turns out, I had a pretty bad case of Bell’s Palsy. Within a day, my face became overly sensitive. The slightest touch of a fingertip was painful. A fan blowing on my face made my head ache. Because my left eye wouldn’t close properly and I couldn’t squint, bright light became problematic. I could barely see upon stepping outdoors, and bright indoor lighting was disturbing to me. My eyes blinking at different times upset my vision.

But the worst was yet to come. Within two days, the Bell’s Palsy had worsened. And, because I had complete facial paralysis, the muscles that normally dampen sound ceased to work. The condition is officially called hyperacusis, but I called it Superman Hearing. Suddenly, I could hear everything – the filter on the fish tank, the ceiling fan in the other room, the pop in my husband’s jaw as he ate. But it wasn’t simply a matter of hearing everything. The problem was that it was all at the same volume. So, everything became too much. I nearly went into a panic at work. The school bells were painful to me. A pencil dropping on to a desk made me jump. I had to ask everyone to lower their voices, and I couldn’t tolerate radio or TV. I donned headphones and tried not to cry. But my voice amplified inside my head with the headphones on, so I couldn’t tolerate speaking with others. All I wanted was to curl up in a ball in bed in the dark and wish the world away. Because the world? It hurt me.

And – although I’d comprehended that sensory integration issues impacted my autistic child – I now look at him with all new eyes. Because of this experience, he’s even more amazing to me. Amazing in that he walks through life experiencing this (though I’m certain it’s probably not exactly the same) every day. Whereas I shut down for a few days and hid out during the worst of it, he isn’t given that option. He’s 5 years old, and the world is attacking him. When I’m alone with my thoughts and consider that, it steals my breath. And when he curls up in a ball and hides out from the world for a few minutes, I find myself understanding in a way I couldn’t have before.

Did Bell’s Palsy make me autistic? Of course not. Do I now have a complete understanding of the autistic experience? Nope – not even close. Because Bell’s Palsy did not affect my ability to communicate. It didn’t alter how I perceive others. It didn’t change the way I process new information. I still think in words and not pictures.

But Bell’s Palsy did act as a tour guide of sorts. It took me to a place I’d never been and pointed out some key areas I wouldn’t have discovered on my own. It gave me an experience merely reading about couldn’t afford me. It allowed me to see my son and his reactions to the world with a different lens. It isn’t often that we get to live as others before returning to our own lives. But when we do, we are changed – forever reminded that our own perceptions are just that, perceptions. When you realize that your perceptions aren’t necessarily facts, then all manner of truths and possibilities open for you.

So, despite the residual paralysis, pain, and hearing and vision issues I’m still experiencing, I understand this lesson to have been both painful as well as a gift.

Of course, the most valuable lessons in life usually are.

 

Best Picture Books about Autism

A few weeks ago, I was asked if I might be willing to come in and talk to a group of kindergarteners about autism. Of course, this isn’t just any group of kindergarteners. It’s my autistic son’s peers. So, I wanted a read aloud or two, and I wanted them to be good. Being a school librarian, I know that there are an awful lot of children’s books out there. So, I asked the most qualified people I know –my readers — to offer their suggestions on my Facebook page. I got a lot of them.

I couldn’t afford to buy them all, so I ordered several that seemed to fit the age group and read them all in one sitting. No, I didn’t like all of them. I’ve included only the ones here I’m recommending. Simply because I don’t find negative reviews useful to an audience of readers who already have limited time. I tend to shy away from the preachy ones, believing that children are much savvier readers (and listeners) than we give them credit for. And I like books that are a bit subtle and lend themselves to fruitful discussion. Because that’s where you reach hearts and minds.

1. Looking after Louis by Lesley Ely, illustrated by Polly Dunbar

lookingLooking after Louis is the story of a little boy, Louis, who is autistic and is a student in a regular elementary classroom. His friend, an unnamed little girl, narrates the story as she and her classmates try to understand Louis and some of his unusual behaviors. Louis repeats what others say. He colors pictures that others don’t understand. He runs about through the children’s soccer game. Though the children are sweet and generally accepting of Louis, they do begin to notice that Louis is allowed to do some things they aren’t – and point it out. But then a moment comes along in which everyone recognizes Louis’s effort to communicate something special to him. That leads another child to invite Louis to play with him, but it isn’t recess. His teacher, understanding that this is a teachable moment, allows them to go outside with Louis’s aide. The little girl at first resents what she views as special treatment, until her teachers gives her a moment to consider her opinion. Ultimately, she decides that sometimes it’s okay to break rules and expectations for special people – thus supporting the idea of inclusion in the regular classroom. It’s okay that some things are different for students who require it, but everyone can be friends.

I really liked this little story, mainly because the range of emotions for these children is honest. At times, they are encouraging of Louis. Sometimes, they are bewildered. And others they are a little resentful of what they view as unfair. However, because of their teacher’s open and accepting handling of Louis, they learn about the true spirit of inclusion. This would make a great read aloud that could lead to a productive conversation about differences. Instead of telling, this book shows what a tolerant and welcoming classroom should look like – a point in its favor and one that distinguishes it from preachier special needs children’s literature. Recommended.


2. Andy and His Yellow Frisbee by Mary Thompson

andyAndy and His Yellow Frisbee is the story of Sarah, a new girl at Andy and Rosie’s school. Sarah has noticed Andy, who is autistic, each day at recess, spinning the same yellow Frisbee over and over. She decides to try to connect to Andy by inviting him to spin her pink Frisbee, which she has clearly brought from home in an effort to engage him. Andy’s sister Rosie, playing soccer nearby, faithfully watches over him. She becomes concerned when she sees Sarah sit down next to Andy, knowing that others do not always understand him. She leaves the game and comes over to observe them, seeing Sarah’s gentle effort to interact with Andy and her acceptance that perhaps he’ll choose to do so on another day. Sarah and Rosie decide to play Frisbee together.

I loved this subtle story of acceptance, probably because Sarah reminds me of my daughter. Between Sarah’s effort and Rose’s calm but protective wait-and-see, this story gently conveys to typical children that there is no magic formula for interacting with someone who is autistic. What’s important is to realize that effort does make a difference, even if there isn’t an immediate reward. Andy did notice Sarah’s Frisbee offering, though he continued to play by himself. Sarah’s acceptance of that is beautiful and will serve as a model for typical students wanting to interact with their autistic peers, but unsure of how to do so. Andy and His Yellow Frisbee isn’t what I would choose as a first read aloud when introducing the concept of autism to typical students, because its focus is narrower. But I think it’s ideal as a follow-up later to reinforce lessons on differences and to help students learn to engage with their autistic peers. It is also a lovely story for protective siblings of children on the spectrum. Recommended.

3. Ian’s Walk: A Story about Autism by Laurie Lears, illustrated by Karen Ritz

ianIan’s Walk is the story of siblings Julie, Tara, and Ian – who is autistic – and their walk to the park. Julie initially doesn’t want Ian to tag along, but gives in when he whines. Her mother admonishes Julie that she must be sure to keep a close eye on Ian. As they head out on their walk, Julie observes the different ways that Ian hears, sees, smells, and feels things. Even though she makes these observations, she finds herself frustrated with the inconveniences of Ian’s differences and loses her patience. When the girls stop to get pizza, Tara reminds Julie to watch Ian. But Julie is distracted and suddenly realizes that Ian has disappeared. The sisters race about, frantic to find their vulnerable little brother. Then Julie focuses and decides to think and experience their surroundings like Ian – where would he be? Sure enough, that’s how she finds him, making the big bell at the park gong back and forth. Julie is so grateful he is safe that she now has a new perspective on their walk back. This time, she allows Ian to enjoy the walk as he wants to experience it, allowing him to stop and immerse himself in the sights, smells, and sensations he loves.

Ian’s Walk is a beautiful story with a simple plot, but one that conveys the complex sibling relationships inherent in special needs families. It’s an obvious story to share with siblings of autistic and special needs children (or even in support groups for such). But because the story also describes so well many aspects of autism and sensory integration disorder, it would also be a great introductory read aloud for the topic. My 7-year-old loved this story and recognized both her brother in the story as well as her own emotions in it. Recommended.

4. My Friend with Autism, Enhanced Edition with CD by Beverly Bishop, illustrated by Craig Bishop

myfriendwithautismMy Friend with Autism isn’t a story so much as a narration by a peer, who tells readers about his friend, who is autistic. It begins with an explanation of all the things his friend is good at – hearing, seeing, touching, tasting, being smart, etc. For each thing his friend is good at comes an explanation of how that affects the friend (examples: extra-sensitive ears that hear before others but cause him to sometimes cover his ears). This part is a positive outlook on autism, but matter-of-fact. There is a shift about halfway through when the narrator explains that – while his friend is good at many things – there are some things that are difficult (talking, understanding feelings, sharing, etc.) What’s good about this part is how the narrator makes suggestions of what can be done to help the friend when these things occur.

My Friend with Autism is a practical and positive introduction to autism for typical students. It treats autism as something children shouldn’t worry about and conveys to them that they really can be friends with their autistic classmates. This enhanced edition comes with a guide for adults that includes factual information about autism as well as tips for working with children on the spectrum. The CD includes coloring sheets of pages from the book for children to enjoy after the read aloud. I would suggest this book as a first read aloud for an inclusion classroom to be followed by one or more of the other stories in this list.

If you have shared any of these wonderful books with children or students in your life, please comment below.  I’d love to hear from you.  :)

Note to publishers and authors: I’m happy to update this list over time, should you wish to send me a review copy. I’m interested only in picture books. I simply don’t have the time right now to read and review novels. Send queries to: flappinessis@gmail.com.   

 

The SPECTRUM Alert: An Autism Elopement Protocol for Schools

elope1edit_edited-1On October 4, 2013, Vanessa Fontaine’s worst nightmare came to life.  Despite having warned her autistic son’s school that he was prone to wandering, her son ran right out the door of his classroom – past cameras and a security guard – and vanished.

 

Her son Avonte’s remains washed up from the river three months later.

 

In May of 2014, a nine year old autistic child from Bellevue, Nebraska, left school – unnoticed, surprising –and frightening–his mother by walking in the door and asking for a snack.  Her son functions at the level of a 5-year-old and crossed two busy streets to get home, with no understanding of how to do so safely.

 

Again, in May of 2014, another nine-year-old child on the autism spectrum left his Oakland Park, Florida school early and walked 12 blocks home.  He was found trying to get into his home through a window and later described chatting with a complete stranger along the way.

 

These aren’t the only incidents of autistic children wandering from school (commonly referred to as “elopement”)..  Following such stories, we usually hear school districts “express concern” and pledge to “work with parents to ensure their child’s future safety.”  I’m sure they mean it and will probably try.  But what do they say to mothers like Vanessa Fontaine?  Her son’s school can’t work with her now.

 

The vast majority of U.S. schools do not have an autism elopement protocol.  It’s not because they can’t afford it; an effective protocol like the one I will propose here is mostly free.  The reason schools don’t have one is simple — they don’t realize they need it.

 

In the not-too-distant past, many students on the spectrum would have attended special needs schools.  Such schools usually have a depth of experience with elopement.  But mainstream schools usually do not.  Inclusion has been a big thing in American education, with autistic students now attending class now with their typical peers.  However, these students do not always have the support they need.  Teachers and staff rarely receive autism-specific training.  Human beings make mistakes.  Doors get left open.  And, in the chaos and panic of discovering a child is missing, bad split-second decisions are made in the absence of an effective plan.

 

Today, one in 68 children is diagnosed with autism. Statistically, half of them will elope, and more than a third cannot effectively communicate their name, address, or phone number. (An even higher percentage will struggle with communication beyond this.) And autistic children are often drawn to water. Of the children who are found dead as a result of elopement, 91 percent will be found in water.

If a school district’s plan to address autistic elopement is merely to wait for it to happen and call police, they are planning for tragedy.

 

After consulting with members of law enforcement, here is a protocol I’m suggesting to my child’s school district.  I’m calling it The SPECTRUM Alert for Schools.  The important thing to remember is that this alert/code will necessarily look different for each school.  To be effective, it must be planned by individual schools based upon their location, size, design, proximity to water, etc.  The SPECTRUM Alert is not a ready-made plan, but a roadmap for designing one .

 

S  (Search grid)    In conjunction with law enforcement, the school and surrounding community should be mapped out on a search grid.  If the school is fenced in, there should be a perimeter walk to determine any areas vulnerable to elopement.  From there, the grid should expand outward a mile or two, taking into account any and all bodies of water, dangerous intersections, train stations, parks, playgrounds, etc.  School personnel not directly supervising students should already know and have practiced reporting to their assigned search areas.  Note:  Water should always be searched first.  No matter what.

P   (Pre-identification)    Each child prone to elopement should have on file a Quick Reference Sheet.  This should be compiled by the school with the assistance of parents and possibly personnel who have worked with the child previously.  It should contain the following information:

1. Child’s identifying information

2. Presence of GPS tracking technology

3. Current photograph

4. Child’s current level of communication

5. Child’s documented interests, behaviors, preferences, aversions, etc.

6. Health considerations

7. List of possible locations the child might go within the search grid

E  (Law Enforcement liaison)    One person’s job should be to call law enforcement immediately.  This should happen while the search begins – not following it.  In addition to contacting 911, this is the person who should contact parents immediately.  The liaison could also commence activating a “phone tree” already set in place by parents.  That phone tree might include friends, family, and neighbors willing to assist a search.  The child is likely to know these people well and may respond to them more easily.

C  (Code)    Typically, schools have alert codes.  In my district, they are based on colors and represent different emergency situations.  Students and staff know how to respond to each code.  A code should be called on the intercom.  This will keep students out of the way of the search party.  Teachers should be instructed to quickly look into the hallway and out windows and alert the office if they see the child in question.  In upper grades, it might also be possible to have students assist in a search in teams on school grounds.

T  (Training)    All school personnel and school resource officers should receive training in autism.  Such training can often ward off elopement incidents to begin with. That training should include information in sensory integration disorder, social difficulties, literal thinking, common triggers for meltdowns and elopement, law enforcement considerations, food aversions, bullying and autism, self-stimulation, and more.  It would be a good idea to consult an organization like CARD (there’s usually one in your area) and a behavior analyst in planning this training.  A 15-minute after school meeting isn’t going to suffice.

R  (Relationships)     Law enforcement, school personnel, and school resource officers should be encouraged to develop positive relationships with autistic students, who are often very literal in their thinking and may fear the police, based upon what they may have seen on TV.  Classroom visits in non-emergency situations should occur so that in an emergency ,these children will not fear police and jeopardize their recovery.  As soon a child prone to elopement enrolls at the school, the faculty and staff (including cafeteria workers, bus drivers, etc.) should be notified.  They should see the child’s photo and learn his or her background information.

U   (Understanding)     Common triggers that distress students on the autism spectrum should be understood by all staff, including substitute teachers and volunteers.  By stressing the Understanding component of this plan, schools can often avoid the situations that might prompt an autistic student to elope from school.  Because special events in gyms, auditoriums, and cafeterias are often painful to the senses of autistic students, there should be a careful plan to avoid subjecting these children to trauma.  A trigger for elopement could easily go unnoticed in the chaos of an activity day.   This component is the most powerful part of this plan, though the least understood if effective training of staff doesn’t occur.

M  (Media)     Radio, television, and social media are powerful when it comes to locating missing children.  A media strategy should be considered by the school district and law enforcement for use with autistic elopement situations.  Facebook would be a particularly useful tool in small cities.

 

Ideally, the SPECTRUM Alert will not be confined to the school.  Local law enforcement could enhance this alert system by allowing special needs families to pre-register a vulnerable child with the department in the event of a wandering incident outside of school.  Schools with personnel that could be made available to police departments for autism training would make this even easier.

 

The SPECTRUM Alert protocol would cost a school district little to no money.  Most of it involves planning with personnel already on the payroll.  It’s simply a matter of a school making the choice to plan for an elopement incident and putting it into practice.

 

Human beings are by nature inherently optimistic creatures.  We tend to go through life not prepared for the worst out of a self-protective need to believe it won’t.  But schools cannot afford to do this with regard to autistic elopement – any more than we can afford to not prepare for fires, tornadoes, or armed intruders on campus.  As educators, are in loco parentis.  It’s the prime directive for our profession – to do for our students what we would do for our own children.  Including the most vulnerable ones –like mine.

 

It’s time for every school district in this country, without delay, to adopt a SPECTRUM Alert for Schools.

(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.