My middle name is Joy.

Today I got the first comment I’ve gotten in a really long time on this blog. I haven’t really been avoiding blogging on purpose, but I’ve never been a “regular” blogger anyway. Writing happens when something rises up and demands to be written. For me it has never been a practice or a “have to”: if I made it into that it wouldn’t serve its original purpose which is some kind of personal catharsis. For the past two years most of my writing energy has been going into term papers and the only things that have been rising up aren’t exactly edifying for anyone else but my professors, and maybe not even for them.

One of the things that came of writing this blog was “meeting” people and building community. I have to say that I really do miss my bloggy friends! Had that comment not come in this morning I might not have even popped in here, especially since it’s Lent and what I’ve chosen to forego this year is the internet. Of course I’ve found that to be more difficult than I’d anticipated since the whole world practically runs on it now, but it really has been a time of renewed spiritual growth for me, which is why I will just pop in here and pop right back out to be with the flesh and blood people in my home.

I’ve created a space to continue blogging as I have time- but the new space is more fitting for where I am in my life journey right now. I’ll always keep In the Kiln because it’s special to me. After all, it’s all full of little snippets of the growth of our family documented in black and white. Blogs become sort of virtual scrapbooks, don’t they?

My hope is that you will come see me at My middle name is Joy too. I’m at a place where I need to claim my middle name and make it mine in a new way, but I would still love to commune with my same bloggy friends.

Maybe your middle name isn’t Joy, but I think if we practice joy together and it multiplies. Who knows? If we all practice joy together you might just need to add a new middle name.


There is no mother.

Did you ever see Ghost Busters? (Stop here if you haven’t- you probably shouldn’t read this blog as you will never get half of my stupid jokes.)

Remember that part where, “there is no Dana- there is only Zuul”?

Well, if you live within ear shot of our house (that would be about a five-mile radius in this particular circumstance), you probably heard this really scary voice screaming, “There is no more nice mom! NO MORE!” And lots of wailing from children. Maybe even enough wailing to make you feel a wee bit concerned.

Yeah…that was me and my kids. Confessions of a mother who is not afraid to admit the occasional Zuul possession. And I am also openly confessing that the next time my children dare to open the fridge, that instead of the Trader Joe’s yogurt they are depending on to save them from supper, they see a vast, scary thunderstorm scene with an evil-looking creature in it. Bwa-hahahahaha!

We’ve battled the sleep battles and won. We’ve softened rigidities around toy placement. We’ve worked on tone of voice, reading facial expressions and keeping your honest but not-socially-acceptable running commentary inside of our mind rather than belching it out onto your unsuspecting neurotypical friends. We’re still working on all of those, but each of those goals is coming along nicely. The whole sustaining life by eating a variety of healthy foods? Not so much.

It’s interesting to stand on the other side of being possessed by Zuul and yelling at your children in such a way that your husband looks afraid and slides the windows shut. You start to realize that even though your kids might have extra challenges in the eating department, your own wimpiness has worsened their problems and now you are solely responsible for sorting them out. It’s like a big piece of karma pie, which sounds deceptively close to “caramel pie”. Caramel pie, if such a thing exists, sounds really yummy. Karma pie? Not so much. As parents of spectrummy children we really do need to pick our battles in order to preserve our own sanity. At the same time letting a battle linger on the sideline for about five years makes it a much harder battle to fight. Transitions stink in the world of autism, and especially the kind of transition that means launching away from a safe shore that has sheltered you for years on end: in my case, The Shore of Excuses to Self.

The excuses sound something like this: “But what if this is a genuine sensory issue? I don’t want to make my children throw up on the table!” “What if they decide not to eat at all and I am setting them up for some scary eating disorder?” “It’s so nice to eat in peace. Soooooooooooo nice. I think I will just worry about feeding them something other than hot dogs and frozen pizza tomorrow. Or maybe the day after tomorrow…” Unfortunately my children have unknowingly fed off of these excuses like so many sugary gum drops for years, and now we’ve got a nasty situation on our hands.

Although I am not in the least proud of allowing Zuul to inhabit my body, and tonight as we prayed during tuck-in I asked forgiveness for my nasty way of handling a problem I had a heavy hand in creating, I still feel a little Zuulish. I think I’ve been able to re-frame the whole thing as Warrior Mom (aka Zuul) vs. Lame Excuses. I’m sailing away from The Shore of Safety into shark infested waters with a devil-may-care kind of resolve. It’s kind of like the mom in Basketball Diaries who refuses to give her son more money for drugs, but instead it’s me- physically dragging screaming children away from the refrigerator and back to the plate I set on the table with the steamed carrots on it. I know that one day the fact that I did it will serve them well.


It’s beautiful.

ImageThere are a handful of values I want to weave into my children’s world view, and one of them has to do with beauty.

We live in a time and culture that supposedly teaches us to be “multi-cultural”, to accept difference rather than reject it, and to try to understand those who think differently than we do. We’ve been singing, “We are the world,” since the 80s, but although we preach “tolerance” (which is really not the loftiest goal, is it?) it feels like the strides we’ve made exist more on the surface than at the core. We say we aren’t and act as if we aren’t: sexist, racist, homophobic, afraid of disability and disease, but when the rubber meets the road we all have bias.

We all think something is beautiful. In the quest to teach children the difference between fact and opinion let’s not forget to teach children the truth:

Beauty is an opinion, not a fact.

God sees beauty in all creation, but God is the only one who can claim subjective truth when it comes to beauty. As far as humanity goes, as soon as people started trying to judge good and evil for themselves they started declaring some things beautiful and some things ugly.

It would be easy to think that beauty is a no-brainer if you look at the culture at large. Its a fact, right? Lady on the billboard = beautiful. Lady with warts that have hair growing out of them = ugly. Babies = beautiful. Wrinkles and love handles = ugly. Right?

Understanding the subjectivity of beauty and modeling that value for others is part of making sure that the beauty in our children with autism is seen. It’s also key in helping our children with autism to see beauty in things beyond their own interests so that their joy expands. Aside from those benefits, if people come to understand that beauty is only an opinion (when it comes to people) and not a fact (unless we’re talking about Someone with wholly true integrity) they will be able to look for the beauty in people they once thought of as worthless or ugly and that just makes for a better world all around.

If our children learn that beauty is an opinion, not a fact, they will be able to roll with the punches when another person sends them the message that they aren’t beautiful. They will know that there is God, who treasures them as beloved, and that there will be people who recognize the same beauty in them as God does.

Today my daughter and I saw a homeless man standing on the corner in our local shopping area. It’s one of those shopping areas where you feel odd if you didn’t dress up to go there. There aren’t rusty cars. Most of the women look as if they must have a hair dresser and a manicurist on staff hidden in the servant’s quarters somewhere. And here stood this man in ripped pants that appeared to have been white at some point in time, a T-shirt with the sleeves ripped out, hair that hadn’t been washed in quite some time. He was standing in the the only shade around- under one of the perfectly spaced, manicured tress, holding a sign that simply said, “homeless vet”.

He was the most beautiful thing in sight. So much more beautiful than the pretentiously detailed expensive lumps of metal with wheels. More beautiful than than the people who pay someone to eat the wrinkles off their faces with acid. More beautiful than the perfectly manicured landscape. Why? He wasn’t trying to be anything other than what he really is. He was humble enough to put aside the tempation to pretend that he can still do it alone.

As we drove past he smiled. Not at anything or to anyone in particular that I could tell, but his smile was so peaceful that I had to wonder if he was appreciating something beautiful.

 

 


The Definitive Guide to Deciding the Difference Between Good and Bad.

I once heard a pastor preach about the creation story with a take on the whole thing I’d not considered since childhood. I remember sitting in Sunday school, listening to the whole serpent, tree and Eve thing and thinking, “Why was the ‘bad’ tree called The Tree of the knowledge of Good and Evil?” What is wrong with knowing the difference between good and evil?

**Friends who are non-religious, please hang in there with me and just use the reference as an example rather than immediately deciding this post is “bad” because it contains a biblical illustration. Thanks! I love you, and am not being facetious.**

The pastor at our old church put this idea out there: God never intended us to have to decide what was right and wrong. When we took that into our own hands, judgement began, and that’s where the root of sin lies. We simply aren’t the ones who should decide what is good or bad-that’s God’s job. Yet we take that job into our own hands all of the time. People band together into groups and decide “The Others” are evil because they don’t think the same thoughts or have the same opinions as the comrades in their own group. Our pastor had another sound point pertaining to the same topic:all day long, what we do is look at things and judge them good or bad. Try monitoring your own thoughts sometime and you’ll find it to be true. You run into your friend. She’s your friend because she’s “good” (in other words, she mostly thinks like you think so that when you get together you can each take turns patting each other on the back for being “right” and that feels nice). We run into the person with whom we vehemently disagree at the grocery store and when we see her our stomachs clench, anger rises and our hearts pound. She doesn’t think like I do. She’s “bad”. Obviously I am making it more simplistic than it truly is, but isn’t that the truth at the heart of the matter?

How does any of this relate to autism? Here’s where the whole thing turns on its head. Often, people with autism tend to see issues in black and white. Something is good or something is bad, period. Gray? There is no gray. People with autism also tend to be extremely rule-bound and are well-known for the tendency to try to control everything and everyone around them in order to make the world more comfortable for themselves. It’s also quite common for people with autism to have an incredibly hard time understanding that other people might have thoughts that are different from their own. Typically it’s quite difficult, once a person with autism made up his or her mind, to persuade him or her to do ANYTHING different from he or she had planned. Picture screaming, hanging onto objects with all limbs and crying to the point of exhaustion.This stuff sounds “bad” doesn’t it?

This is why there must be gray. Although throughout history we’ve seen many, many (would it be too much if I added another “many”?) individuals and groups of people behave exactly as the stereotypical person with autism described above (think dictators, ‘republics’ where the people aren’t actually represented…just to name a couple), we’ve also seen that it simply doesn’t work. Why? Well, when dealing with masses of people, flexibility is key. Something rises up in the human spirit when anything or anyone other than God tries to fastidiously control it. Proof positive: when we meet someone who puts herself on a pedestal, declares that she holds the one-and-only truth, doesn’t listen to the perspectives of others, what rises up in us? Well, most people want to knock that person right off of her own pedestal.

Now it’s going to seem like I am leaping to a completely unrelated topic, but many of you are mothers of people with autism, so I bet you can handle it. If Miss Manners failed for an entire year to write one single thank-you note, as she continually exhorted others to always write thank-you notes for all occasions, would that be good or bad? If your best friend (to whom you forgot to write a thank-you note for the wonderful birthday gift) forgot to send you a thank-you note for the gift you’d spent so much time carefully choosing, would that be good or bad? Exactly: it’s not black and white. GRAY DOES EXIST.

Unfortunately when people start to judge us and control us in all kinds of nit-picky ways, our reaction is that we want to do it back. We want to see them fail. We want to see them held to their own standards. Why do we feel these things? I would say it’s because in our gut we know that person is making him or herself into a god when he or she is really only a person. I love my children and don’t want people walking around being annoyed at them (and maybe rightly so) for making themselves into mini-gods. Therefore I must teach them about the GRAY. They don’t have to love GRAY but they need to know it exists and gently, firmly be made to understand why it exists.

Is autism good? Is autism bad? It’s not either. It’s both. That woman you ran into at the grocery store who you’ve been envisioning as the spawn of evil? She’s both. Your very best friend? She’s both. Dictators? Both.

THERE IS NO DEFINITIVE GUIDE TO DECIDING THE DIFFERENCE BETWEEN GOOD AND BAD ON THIS EARTH.

People have tried for thousands upon thousands of years to create one. It’s much more comfortable to navigate through life when you can simply open a handbook, read the rules, follow them, and insist that everyone around you follow them too. The problem is, it’s not realistic. Eventually even the person who drafted the handbook, if he or she is a human being, will find him or herself unable to comply with his or her own rules. That’s where grace comes in. The problem is that we are much more likely to treat people with grace when those people are humble enough to admit that they can’t live up to the ideals in the handbook either. When people see the world in black and white, hold tightly to their own ideals and can never say (even to themselves) that they are wrong, then the people around them have a harder time handing out grace.

So, on the agenda for today: find ways to teach my children how to humbly admit when they are wrong, teach them to listen- really listen- to the people around them, remind them to be malleable and flexible so the messiness of life does not break them, and let them know that they probably shouldn’t put themselves on pedestals in order to prevent the pain of being pushed right off. When I’m done with that, I’ll do the dishes. All in a good day’s work!

Life can’t be black and white. It’s a messy, messy shade of gray. For my own part, I am glad to have God to accompany me on the journey through the mess.


Pathological Rigidity

When we hear the words, “Driven, goal-oriented, focused, perseverance,” we get this image of strong, able person aglow with success. Unfortunately all of these same words are only a hairline away from becoming terms like, “fixated, perseverative, single-minded and anal retentive”. Not such a nice image anymore, is it? What is the difference? Some would say it has to do with pathological rigidity.

pa·thol·o·gy
   [puh-thol-uh-jee] noun, plural -gies. 1. the science or the study of the origin, nature, and course of diseases. 2.the conditions and processes of a disease. 3. any deviation from a healthy, normal, or efficient condition.

Often as parents we end up asking ourselves, “What is ‘normal’? What is ‘healthy’? Would somebody please define ‘efficient’?” The truth is, there are no clear-cut answers to any of those questions. What is true is that neurotypical people seem to have some sort of sixth sense that tells them when someone in the group is not quite “right”. Then they have to make up official-sounding diagnoses in order to help themselves define what exactly is “not quite right,” but all the while they just know when somebody is different. It’s a little like the autistic kids who can walk into their bedrooms and immediately identify anything that has changed. Neurotypical people sense differences in people. Autistic people sense change in patterns and things…and people. Only the people part often takes a bit longer, and sometimes it’s challenging for them to define the change.

As loosely defined as it may seem, we do know when “something is not quite right”. Lately I’ve been thinking about this a lot. Why? Well, like it or not, I’ve been thrown into a life in which I often need to calmly and gently help the people around me adjust to change. Change is not easy for people with autism. It’s so easy for me to look at my children from the outside perspective and think, “Really? Why do you have to be so upset because we drove a different route today?” or “Give me a break! Who cares if your little brother uses a toy for a purpose other than its intended one?” But when I really try to put myself in their shoes I do get it. When you expect something to happen one way and it turns out differently than the image you had in your mind, it’s really hard. When you deal with pathological rigidity on a daily basis you easily identify it wherever it pops up. You learn the beauty of flexibility and see its inherent value in a new light.

When we see somebody who has a dream and have the opportunity to cheer her on as her eyes are fixed intently on that goal and she runs toward it unwaveringly- blocking out any annoyance or distraction-our hearts rise to cheer her on in her pursuit. It is nothing short of admirable. So why is it such a problem when someone with autism does the same thing? Why don’t we cheer them on as they set their minds in stone and focus only on the goal of…say…knowing all there is to know about every species of reptile that has ever existed on earth? One could say, “Well, it’s just too much,” or, “That’s not a normal goal.” I think it’s more than that. I think that because we live in a society that is interdependent, when anybody (autistic or not) focuses on a goal so intently that she is willing to ignore and/or offend the very people who might be instrumental toward helping her reach her goal, her focus has become pathological. The root word “pathos” means suffering. Pathology really has very little to do with absence of normalcy. It has more to do with causing suffering. Who suffers most: the person with the pathological rigidity or those around her who are disregarded as she presses single-mindedly toward her goal, not seeming to notice as she runs over the people who are cheering her on?

As parents of children with autism it is our job not to change our children into different people from the ones they were created to be, but to nose out pathological rigidity and lovingly shape it into something that no longer causes pain. While in the short term it is difficult to see my children struggle as I insist that they be open to change and formation; that they experience change that might cause discomfort just in order to learn that the change won’t kill them, I know in the end it is worth it. Short term discomfort in lovingly supported doses is much better than a lifetime of pathos.

In our home we often remind our children that we don’t always know what will happen next, but no matter what it is we can make it through it. There are so many uncertainties in life and if we can’t roll with the punches we’re going to shatter, plain and simple. We try to teach them that for any problem there is a solution, and that things don’t always turn out exactly the way we planned them to be, but that doesn’t mean the end result will be a bad thing. Different than once imagined does not equal bad. It’s just different.

Today my five year old daughter looked me square in the eye and said, “Mom, I shared my toy with Little B. I didn’t want to but I know I can be flexible.” It was one of those moments when you want to cry with relief because you realize your kids do really hear you despite the fact that they look like they are running around in circles and ignoring you as you teach. Flexible has become a household word. How beautiful!

Learning to be flexible is a life-long pursuit, and a worthy one. We certainly don’t have that goal cinched just because we’re “grown-ups”. We’ve all seen plenty of adults (including the one we each see in the mirror every morning) having a temper tantrum when things don’t go the way they’d imagined. Which one of us hasn’t, much like a giant toddler, tried to insist that everyone think as we think or do as we want them to do? Which one of us hasn’t protected some scene we so carefully set up to the point that we’ve created a little pathos of our own? The only answer then is to have grace for ourselves and each other, be ready to roll with unforeseen changes and learn to laugh with each other and even at ourselves along the way.


Love is a good thing

Here comes Valentine’s Day! Truth be told, not my favorite holiday by any stretch of the imagination. While I appreciate the sweet gestures, I’d much rather give or get a spontaneous sweet gesture as opposed to one gently encouraged by cheesy commercials which feature things like men buying their partners teddy bears. Really? Are there grown people who want teddy bears for Valentine’s Day?

What I do love about Valentine’s Day is the fact that the featured topic is LOVE. I love love. Not the corny, sappy kind. I love real love. The kind that was described by C.S. Lewis when he said,

“Love is not affectionate feeling, but a steady wish for the loved person’s ultimate good as far as it can be obtained.”

Or when he said,

“To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket- safe, dark, motionless, airless–it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable.”

It’s true, isn’t it? When we carried children who were still getting ready to be born, we already loved them. Then they were born and at some point we saw that they maybe weren’t what we had expected. At that point love became a choice. We either chose to love what was really in front of us wholeheartedly, or we chose to continue loving what we thought our children should have been.

Love is a good thing, but it’s often the hardest thing we’ll ever do. True love is giving our all to foster the healthy development of our children. It’s not about trying to change them to fit the mold of the dream we might have had for what they would be. It’s taking what they are and finding ways to use the way they learn best to build in the skills they will need to live the lives they were meant to lead. It’s conveying to them that they are precious “as is”. Not everyone can truly love a quirky kid, but you can, and in the process you will teach others how.

True love is also taking care of our relationships and ourselves so we have something left to give our children.

Love is so much more than the phrases printed on pretty conversation hearts.

Earlier this year a friend introduced me to the music of Andrew Peterson. Andrew has a song called, “Love is a good thing,” and I think it’s about the truest love song I’ve ever heard.

That about sums it up, doesn’t it?


Borderline Inappropriate

Sometimes our children make us giggle. Sometimes they make us draw deep, worried sighs. Sometimes they test our patience to the point that we want to scream. Sometimes we do scream (well, those of us who are sane and honest, anyway).

At times they make us want to die of embarrassment (like the time my C announced, “Mom! Look at that man! That is THE FATTEST, BIGGEST man I have EVER seen in my LIFE!”- and I will shamefully admit underneath my wanting-to-die-embarrassment I thought, “Wow! That was great inflection and her body language matched. Yeah!”)

Then there are the times they make you want to roll on the floor with laughter.

And here comes the part where I am going to share something borderline inappropriate but incredibly hilarious. It’s kind of TMI and part of me hesitates to share it, but the part of me that has benefitted from hearing other mothers’ incredibly funny and borderline inappropriate stories knows this will make someone somewhere laugh until she cries and for the kind of moms and practitioners who stop by this blog once in a while, laughter is the best medicine and I am happy to provide a dose. Plus I am hoping these kind of discussions happen in other families. If you are willing to share I would love to hear yours here.

But, by the way, if you know me in real life I probably don’t want to discuss this story in person. Even if you are my own mother. Just sayin’.

Today is Saturday and we’re having a lazy day. The kids are still in their pajamas. Dh is running errands. I am going through that pile of paperwork on the counter that grows into some kind of scary, living beast that appears in my nightmares if I don’t go through it at least once a week.

In the middle of this scene, my 3 year old Little B (who is not on the spectrum, by the way) crawls up into my lap, puts his hand lovingly on my chest, looks straight into my eyes and says, “Mommy, I love you.”

Sniff, sniff- right? So sweet.

Then he says, “Mommy, your breast-es are…fat. You have big breast-es. I love them.”

AAAAAAAAAAAAAAAACK! I mustered up my best straight-forward, dealing-with-borderline-inappropriate-things-my-kids-say voice and said, “Well, Little B, breasts are private so it’s not really OK to talk about them in public. And it’s not OK to touch them…unless they belong to your wife. But you aren’t married. So please don’t talk about people’s breasts out loud.”

He took it in matter-of-factly and without missing a beat said, “Mommy, I hafta whisper something in your ear.”

He pulled my head close until his little mouth was almost touching my ear and whispered in the quietest voice he could, “I like your breast-es because they are cute.” Then he pulled his head back and looked, looked me in the eye and said in a normal voice, “Like that, mommy? Is that how I can talk about breast-es?”

Bwa-ha-HA-ha-HA-hahahahahahahaha!!!!!

I guess social skills training isn’t only for kids with ASD, huh?


Autism- A Family Affair

It’s been pretty well established that the predisposition for autism is genetic and that environment plays a big part too. Which exact environmental triggers turn a genetic predisposition for autism into diagnosible autistic tendencies is still unknown, but I have a theory:

I’m pretty sure that holidays are a large contributing factor.

Here’s the way I see it. Any time you throw a bunch of people in the same house who have genetic predispositions toward being very rigid, feed them a bunch of sugar, keep them up well past bedtime, force them to sleep in beds that aren’t their own, then expect them to have even better manners than usual….

Ta-DA! You end up with a bunch of perseverating, stimming people who seemingly have very little control over their own emotions and cease to care about the effects of their behavior upon one another in favor of simply surviving the day.

Think about it: when do perfectly mature adults suddenly rigidly insist that children sit in neat little rows, silently waiting to open brightly colored packages and subsequently *lie* and say they love each thing inside of the packages? Only at the holidays, right? My theory is that holidays create stress, which causes all of the adults to lose their minds and go into sensory overload, which causes them to be extremely rigid and demand unnatural behavior from everyone around them just to make themselves feel better. Sound familiar?

Try to name another time when we insist that we all go to church on that certain day (but it’s the 24th! We have to! Even if it’s past the children’s bedtimes!), even if we’ve already been there on Sunday, then only sing *certain* songs and tell *certain* stories. Perseveration, anyone?

All jokes aside, when we take two to three weeks, remove the constancy of our regular schedules, start eating all kinds of things we never eat at odd hours of the day, and jam ourselve into rooms with far too many people, we all start demanding strange things from ourselves. The bows MUST match the paper! The gift MUST be extra-specially thoughtful! The children MUST have rosy cheeks and wear frilly frocks! The frilly-frocked, rosy-cheeked children MUST be polite to old ladies who want to pinch their cheeks even though we’ve kept them up past their bedtimes, stuck them in cars for hours and hours and hours and fed them candy canes and cookies until theyve nearly thrown up.

Yes,our kids have been melting down over little things during this school break. Dh and I notice that when they do that, we tend to get rigid. Who cares if the kid wants to eat a sandwich for breakfast? (We do.) BUT IT’S NOT A BREAKFAST FOOD! YOU MUST CHOOSE CEREAL OR TOAST. Really? Who’s being inflexible now? Sometimes when I step outside of myself and listen to myself parenting my children, I sound hauntingly like Dustin Hoffman insisting that he must purchase his underwear at K-Mart.

If you find yourself sounding hauntingly like Dustin Hoffman too, these are good times to wear your pajamas all day and sit around reading facts about your favorite things to calm yourself. We’ve noticed that calmly talking to ourselves out loud helps too, especially if we repeat the same sentence over and over in a lulling voice. As does the occasional bout of locking yourself in the bathroom and remaining unresponsive as the people on the other side of the door yell your name. People? What people? I’m in my happy place, thank you.

Sometimes I think dealing with my children’s autism-related challenges overwhelms me. Other times I realize I can learn a thing or two about self-calming from them. As they old saying goes, if you can’t beat ’em, join ’em.


When Little Chickens Attack: Thoughts on Peckers

Sometimes words rise up in my mind and take on a life of their own, insisting to be recorded somehow. They sit there in the background, begging for recognition as loudly as my children do. Right now I am supposed to be writing an 8-12 page final paper for one of my classes, but it feels like I have to get this mess of words out before they will quiet down and allow me to think clearly enough to dive into writing a paper.

Here you go, words. You’ve been clamoring to be written down all week. Enjoy your time in the limelight, then please leave me alone.

It’s been a bad autism week. Sometimes the gifts that autism brings are all wrapped up with a pretty bow and I can truly be thankful for them. This week the challenges autism can present have slimed me and I’m working my way out of the miry pit. At the same time as I claw my way back out, I am overwhelmed with gratitude for the people I have in my life who love me and support me while I am still in the pit. Friends are one of life’s greatest blessings, but ironically it’s that very truth that turned the week to muck in the first place.

Since my spectrummy kids were very little I’ve tried to prepare myself for the worst and hope for the best. This tactic isn’t always as helpful as the Girl Scouts might tout it to be- at least not for me. Those of us with very vivid imaginations tend to conjure up the most obscure, terrible worst case scenarios possible and at times we get sucked into living that reality instead of looking at what we have in front of us square in the eye. In my forays into the world of “what if” I’ve often gotten stuck on this one, “What if my children find themselves feeling fundamentally flawed and are intensely lonely?”

One part of my brain says, “Really? What about the parents whose spectrummy kids are institutionalized, incontinent into adulthood, impossible to take into public, may forever be pre-verbal and self-injurious? You are worried about your kids!? What right do you have?” I am blessed enough to have good friends who remind me of this truth: The greater suffering of another does not lessen one’s own suffering. So true.

Earlier this week I rather innocently began a conversation with my BigB and C about recess. I was using recess as an example of a time when it might be challenging to transition from play to work. When I looked at BigB I noticed emotion rising in him and I asked what was wrong. “It’s just that,” his little chin began to tremble and his big brown eyes brimmed with tears as he choked out, “I don’t even like recess. At recess I am all alone. I just stand there and watch everyone play and it’s sad and lonely.”

Whoever made the quote about having a child being akin to letting your heart walk around outside of your body was dead on. Ouch! Hearing this from him instantly made me feel as if someone had taken my beating heart out, tossed it on the floor and stepped on it. I asked him, “So, I wonder if we could find somebody for you to play with? It must be awful to be lonely.” The tears spilled over as he sobbed out that nobody wanted him, that he couldn’t ask anyone to play because they didn’t want him to play with them. He told how at the beginning of the year he’d played with a group of kids from his class and he thought that they liked him, but the following day when he tried to join in, one of the boys pushed him up against the chain-link fence and told him, “Not you. Bad BigB!” He’d told an adult who had brushed it off. The boy was never confronted, and since that day he’d never played with anyone again. Instead he’d just stood at the sidelines feeling lonely and inadequate.

By his outpouring of emotion I could tell that he’d internalized those words and accepted them- I am bad. I am unlikable. I am alone.

I’m ashamed to say that after I tried to comfort him and give him some tools to the amend the situation, I found myself wishing that his autism was a bit more disabling. The sad truth about kids is this: if they can see that a peer has a disability they are much more likely to give that child grace. When the “odd” child looks and seems typical in many ways, his or her peers have higher expectations for typical behavior. When the behavior isn’t typical, the lowest part of the human race rises up. It’s the part of us that is closer in intelligence to a chicken than a human–the part that says, “Peck the ones who are different. Peck the ones who seem weaker.”

When BigB recounted his story I realized exactly when it had happened. A couple of months ago he’d come home from school with a large, bloody scratch on his arm- in fact I can still see the scar it left. When I asked him where it had come from he’d told me that he didn’t remember. Savvy enough to lie and save himself from divulging the shame he felt over believing a different lie that a kid with a chicken brain had told him about himself. Not savvy enough to read facial expressions, tone of voice and body language, which are the very skills that would help him to blend in with the brood and save himself from becoming a pecking target for chicken-brained kids. Turns out that the scratches on our skin aren’t the only kind that leave scars. The thing about chickens disguised as people is that they peck at hearts as well as bodies, and that kind of pecking leaves scars that hurt worse than the kind left by being pushed against chain-link fences.

I wish I had some awesome, encouraging, hope-inspiring thing to say to resolve the whole thing. The truth is, I don’t. I’m not sure what to do next. BigB is who he is, and we love him entirely and unwaveringly but he needs more than that. He needs peers who will love him too. Unfortunately I can not inject myself into every home and teach other people’s children empathy. To be a typical eight year old boy is to be a chicken. You peck around the playground–you either peck or get pecked. The cry of my heart is that my child wouldn’t have to be one of the ones who gets pecked; at the same time I don’t want him to be the one who does the pecking either. In the end I can’t control any of that. The truth is, the world is full of a bunch of peckers. (Pun entirely intended–but next week when I am in a better place I will probably emphatically deny it.)

I can’t think of a nice way to wrap this one up. Autism moms and spectrummy friends–I pray for you a pecker-free week. May you and your children be loved for simply being the very amazing people you were created to be. May you be surrounded by people who will affirm you and lift you and your children up. And may God continue to do his work with people who prefer to think like chickens rather than the human beings they were born to be.

Amen.


Thanksgiving IRL

Recently I found myself remembering way back when I started learning my way around cyberspace. When I was first married I happened upon a message board for women and my “virtual friends” there became very near and dear to my heart.(Yes, yes, I know–for all I know they were pot-bellied middle-aged men posing as young brides. If so they certainly did their homework.) I treasured my time spent with my virtual sisters and I learned so much from these women- from their joys and their pain and all the parts of their lives that they were willing to share.

I also learned a lot of internet jargon.

IRL (for those who haven’t had the good fortune to stumble upon it yet) means, “In Real Life,” and the slightly ironic part is that it’s a term that was developed by those who spend a good deal of their time living a virtual life. While I (obviously) have nothing against the internet, as a self-proclaimed information junkie at times I allow the internet to steal too much time away from my real life: my flesh-and-blood family, the voices of my children, the tasks of living, experiencing a quiet mind.

This year my life has intersected with friends, neighbors and loved-ones who are battling cancer, nursing gravely ill spouses and parents, in the midst of divorce, healing from abuse, grieving the loss of a child, facing the difficult and unexpected task of raising disabled children. It’s hard for me to think how these friends could feel thankful. At the same time, they are some of the most thankful people I know.

Once a long time ago my grandma said to me, “Someone always has it better, and someone always has it worse.” In the years since she declared it, this saying has proven true in my own life experience.

The more trials we experience and see, the more thankful we are for the beauty in life. At one level we could look at others (who have it worse than us) and think, “well, at least I don’t have to deal with that,” but that’s not what I’m talking about here. What I’m talking about is when you move across the Other People Line. You know the one: “Other people have kids with autism,” or, “Other people lose their children,” or, “Other people get divorced,” or, “Other people go through round upon round of chemo,”…once you move across The Line, you realize it could be you standing on the other side of any one of those lines.

Realizing this grows your gratitude for what you have *now* because you know you might not always have it. Loss is funny like that. In comparison to the gaping hole and the subsequent scars that loss can leave, everything beautiful just becomes more beautiful. You learn to listen to heartbeats more intently, to treasure the sound of someone’s voice, to remember the warmth of someone’s hand in yours. Your empathy grows. Sometimes you know that you are more fortunate than others, but you know that could change at any moment so you don’t feel guilty about it; instead you learn to hold it loosely and treasure it when it’s there. When you see someone less fortunate than yourself you care in a different way- instead of fearfully pushing their pain away and thinking of them as “the others” you recognize them as “one of us”.

You learn to give thanks IRL.

How many of our families look like the Norman Rockwell scenes our culture often idealizes? Not many. Ours doesn’t. (Well…it might if we took lots and lots and lots of pictures and happened to catch all four children smiling and holding hands…but that would mean us standing around with a camera for a full four hours or so just so we could post it on fb to show the world that we are Norman Rockwellish. That sounds really painful, so I think we’ll skip it.)

In the middle of real life- the life in which our children will be wrinkling their noses in distaste at the feast we’ve spent hours preparing, fighting over places at the table and then deciding they’d rather run circles through the livingroom and diningroom than sit in the spot they fought for- we’ll be thankful IRL. And we’ll be raising our glasses to toast those who are in their homes being thankful IRL too.