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Weight of the World

  • Posted on April 11, 2012 at 8:09 AM

Sometimes I wish Rachel had never drawn my attention to the incendiary issue of Autism and Empathy.  It’s not that I actually prefer ignorance.  It’s just that I have enough to grapple with in trying to understand the ludicrous human phenomena known as prejudice in its most general sense.

How can anyone think that the set “people with autism” fits inside the set “people who lack empathy?”  Why should they come in to the arena with this assumption?  Why should they work so hard to try to prove themselves right through science?  Obviously, they never met my son Willy.

He’s thirteen years old and he carries the weight of the world on his bony little shoulders.  The “autists lack empathy” camp would have you believe that because he is atypical in his social and communication development that he lacks empathy.  Yet, he feels so strongly for others that, if anything, his reactions are inappropriately grand.  Willy’s quick to apologize for the slightest wrong he does, even if that “wrong” was not of his doing nor his responsibility to do.

On the other hand, there’s our fifteen-year-old.  It’s not that he’s not empathetic, but he tends toward the irresponsible.  In short, he’s a teenager.  He lives so much in the moment that he doesn’t consider the consequences until they catch up with him.  By the time they do, he’s often at a loss for how problems got so big while he wasn’t paying attention.  We have to lay it out for him.

Easter Sunday, after a week of blowing off his family and his responsibilities in order to spend time with a friend (or complain about being bored when he wasn’t), things came to a head when our fifteen-year-old announced he was going over to the friend’s house—that he had to.  On Easter Sunday.

Mark’s reaction was explosive.  Brandon’s counter-reaction was equally explosive.  I was downstairs with headphones on when Willy came running to tell me, with tears streaming down his face and sobs heaving his chest, that “Daddy and Brandon are fighting.”

So, I go upstairs, assess the situation, and help put things into perspective for Brandon.  Tears and repentance and forgiveness followed.  All’s well that ends well, right?

Except that wasn’t the end.  Not for Willy.  Willy carried that fight with him throughout the long day, bursting into tears any time the memory flitted through his mind.  He took the guilt for what Brandon had left undone on to himself—“If only I had helped Brandon…”

The toxicity of a relatively brief fight stuck itself inside Willy’s mind and heart.  The memory itself was enough for him to feel how badly upset his father and his brother had been as if it were still happening.  And it hurt him and he bore the guilt of it, even though none of what happened had been his doing or his responsibility.

Now, for us, the lesson is that we really need to do better about the fighting.  Beyond that, though, this makes me wonder anew how anyone could claim Willy lacks empathy for any reason, let alone because he’s autistic?  I find the claim completely unfathomable.

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Googling Metamorphosis

  • Posted on April 2, 2012 at 8:00 AM

Who knew “Googling” could prove a point.  I knew the results of “Googling” could prove a point by helping you find the information and resources you need.  But the act of “Googling” itself…?

Ben is a smart little boy who’s interested in learning.  He’s not so interested in being taught, but he’s interested in learning.  He really likes National Geographic, specifically GeoKids.  The videos, that is.

After watching one snippet of video from a video we’ve never actually owned (thanks to the copyright infringement that’s rampant on YouTube), he decided to visit Google.

What did he “Google?”

BUTTERFLY METAMORPHOSIS

(What can I say?  In Ben’s world, all letters are capitalized.)

He even spelled it right.  (Btw, I didn’t do quite so well on my first try in this post.)

When I mentioned this at his last IEP meeting, his teacher agreed that finding out just how much Ben knows and how much he’s ready to learn—setting aside our expectations and finding out just how high those “splinter skills” peak—is a good idea.

Because Ben not only CAN “Google” to learn about metamorphosis; he chooses to do so.

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Thriving and Flying

  • Posted on March 30, 2012 at 8:00 AM

I feel kind of like a baby bird pushed out of the nest by its mother, forced to fly and fend for itself.  The analogy doesn’t quite fit—I’m not a baby and this isn’t the first time I’ve been on my own—but the feeling lingers despite the obvious discrepancies.

Last week I took Alex and Ben to the Feeding Clinic.  Brief recap:  For years these two little ones have struggled with below-the-charts growth, severely limited diets, inadequate nutrition, and the threat of “failure to thrive” diagnoses.  We took them to the Feeding Clinic to “fix” this, and apparently we’ve succeeded.

My boys are hardly weighty fellows.  They’re on the growth charts now, but the 90/10 trajectory (in Alex’s case) persists—that’s 90th percentile for height and 10th percentile for weight, or tall and skinny in lay terms.  Ben isn’t quite so tall, but he’s on the skinny side.

We’ve done all we can.  They’ve maintained their own growth trajectory, we’ve succeeded in introducing needed nutritional supplements (meaning they actually consume them), and they’re all-around healthy.

All good things.

But now the visits to the Feeding Clinic are at an end.  They’re not needed any more.  The great, supportive team that has helped us so much and have supported us so well, have succeeded and are no longer needed.  And I know it’s time.  It’s just that…

I’m going to miss them.

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How to…Get Some Sleep

  • Posted on March 28, 2012 at 8:06 AM

When my boys were younger, they had a lot of trouble sleeping.  Our current problems with sleep seem insignificant in comparison.  I remember getting three hours of sleep a night.  It went something like this: Willy would be wildly awake until he fell into a brief, exhausted sleep that lasted maybe five hours.  I fell down and slept as soon as I could.  A few hours later—three or four usually—Alex would wake up, eager for morning.  By the time Willy’s sleep schedule normalized (more or less), Alex was where Willy had been (difficulty falling asleep) and Ben was where Alex had been (waking up very early).  Now, both Alex and Ben are (more or less) in sync. 

It might seem ill-advised for me to do a how-to on this topic, since it’s something we still struggle with, but it’s that “still” that has modified our techniques for more effective solutions.

Personally, I advise against medicating children unless absolutely necessary.  But, sleep is necessary, and there are more natural solutions than the kind of sleeping pills adults so often rely on.  Here’s what’s worked for us:

1) Melatonin

Melatonin is a hormone produced by the body to control your sleep/wake cycle.  “Normally, melatonin levels begin to rise in the mid- to late evening, remain high for most of the night, and then drop in the early morning hours,” according to WebMD.  But sometimes this natural production doesn’t work so well.  Luckily, it can be supplemented without druggy side effects.  There are both pills (which are safe to be ground up) and liquid forms of melatonin you can dose your children with to stimulate sleep.

2) Lavender

Lavender is a flower (as well as a color and a scent) that can be reduced to its essential oils.  Natural lavender (the flower or the essential oils) can trigger relaxation, which can translate to sleepiness without the druggy side effects.  Just be aware that you don’t just want a mass produced lavender scent (candles and other smelly products).  You want something with real lavender oils in it.  Natural food stores often carry the essential oil products, and a few drops in the bath, rubbed over the chest, or sprinkled under a pillow can make a world of difference for a good night’s sleep for those who are so revved up they can’t calm down, even when tired.

3) Staggering

Anything you use can be overused.  The body can get used to it, requiring higher doses to the point that it gets dangerous—even homeopathic oils and natural supplements, like melatonin and lavender, can become dangerous with high doses.  Instead of upping the dose, take a break from the product.  The break should be long enough for the body to adjust; a few days are usually enough.  Then start again.  Start by using one product (melatonin, for example) for a while.  Then, start up with the other product (lavender, for example).  Overlap for a night or two.  Then, stop using the first product for a several days (maybe as long as a week).  Use only the second product.  Then, switch again, following the same pattern.  This should help you and your child(ren) get some much needed sleep, without overusing or overdosing.

And don’t be afraid to dose yourself.  Your body gets used to the rhythms of your children, so you might need the extra help getting a good night’s sleep even after you’re sure your children are getting the rest they need.

Some other natural products you might want to try include:

  • Chamomile
  • Valerian
  • Relaxation techniques (think yoga, and there are yoga programs for kids)
  • Light therapy (for those who are responsive to the change in seasons)
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Quick Breaths

  • Posted on March 26, 2012 at 8:00 AM

I’ve been taking something of a break during this gap between courses.  It’s not that I’ve stopped.  I rarely stop.  If I stop, it’s because I’ve crashed.  But I’m going more slowly, pushing myself less hard.  I’ve noticed, though, that I still hear a lot of people telling me to take it easy.  (What, this isn’t easy?)

It can be a challenge, keeping up.  I don’t mind it, really, except for the paper work, the documentation.  If I could avoid that, I would, so I procrastinate until it’s so urgent it must be done.  Other than that, I like to stay busy.  I like the sense of accomplishment, especially when I know there’s so much more to accomplish.

But when I do slow down, when I remember to breathe, to relax, to enjoy.  I like that, too.  It just doesn’t last and I’m not ready to make that leap that will make it last.  There’s too much to do.

I’ll take this quick breaths, then I’ll plunge back into the fray of too much work and too little play.  What else can I do?

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Summer’s Here

  • Posted on March 23, 2012 at 8:00 AM

It’s March, and yet it feels like the beginning of summer.  Maybe it’ll last, maybe it won’t.  But it’s wreaking havoc on my children’s delicate systems.

Spring equinox is always hard.  Is it the pressure systems bearing down on us while they blow through?  Is it our changing proximity to the sun?  Or is it the daylight savings nightmare?  I don’t know, but the boys struggle—especially with sleep.

For a while now, we’ve been doing the melatonin thing.  For the most part, it helps.  A lot.  Until it doesn’t.  Then, it doesn’t help at all.

We’re there now.  I tried upping the dose.  They’re regularly at three milligrams, which seems like a lot, since we started at 1 milligram.  I tried bumping it up to 4.5 milligrams, or a pill and a half.  But it didn’t work.  It’d only take them an hour or two to go to sleep (after lights out).  But they’d wake up a few hours later, revving for daylight.

So, we took a break from the melatonin.  It took them two + hours to get to sleep, but they slept through the night and woke up kind of tired.  We’ll see how long this lasts.

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How to…Go Shopping with an Autistic Child

  • Posted on March 21, 2012 at 8:00 AM

Taking a dysregulated kid into a store can be a hellish experience.  On the one hand, you have the child who is uncomfortable and in need of care.  You also have yourself, usually frazzled, at the end of your rope, struggling to accomplish something with a child who isn’t cooperating.  On the other hand, you have the people around you who are oh-so understanding and helpful.  Ideally, you would be able to ensure your autistic child was comfortably regulated every time you go shopping, or you would be able to go alone.  But let’s face it, sometimes the shopping needs to get done, you need to take your child, and your child can’t really handle the experience all that well.

So, how do you do it?  How do you get through this shopping trip in hell with your child, yourself, and your personhoods intact?

1) Come prepared.

In this contemporary age of on-the-go moms and dads, we’re all probably familiar with the diaper bag.  You can even get chic diaper bags that don’t look like diaper bags, unless of course you’re familiar with chic diaper bags.  We learned to pack diapers, wipes, bottles, formula, a change of clothes, a sippy cup of juice, or whatever.  We might pack a blanket, sun screen, hat or other weather-appropriate extras.  We usually stuff in various forms of snacks and toys, or other distractions.

With an autistic child, you might need all of that or not, depending on their age and development, but you’ll also need some other items.  In particular, you should bring sensory-friendly or sensory-soothing items that help a dysregulated child get regulated, or at least stay within the bounds of self-control.  Chewies are good for this, at least for my boys, and colorful fiddles with different textures.  A set of sound-dampening headphones if you’ve got them.

Unlike when my kids were little, now we have the added advantage of iPods, iPhones, iPads, Kindle Fires and similar technologies which can act as an escape mechanism—a set of comfortable headphones or ear buds and you’re just about golden.

2) Keep it short.

Sure, you’re busy, and you want to get as much as you can so you don’t have to come back later in the week.  It’s a strong urge, but you must resist.  Keep your list short.  Get what you need, what can’t wait, and get out.  Really.  Trust me.  It’s not worth it to wander around leisurely and pick up anything you might like, no matter how much you might enjoy the experience.  The meltdown’s a-comin’.

3) Practice that look.

People will offer unsolicited commentary and advice.  People will criticize you, harass you or your child, make disparaging remarks.  Foster a facial expression that will stave them off and keep it handy.  For me, it’s a slight tilting of the head and a raised eye brow, with a firm mouth and a slight flaring of the nostrils.  I’ve been told by those who it wasn’t directed at, “I didn’t see anything.”  But those who it is directed at know.  They see it.  And it’s a form of challenge.  Most people back down.

4) Prepare a statement.

Perhaps you want to take the opportunity to educate people in your community.  Perhaps you want to tell them to mind their own business and move on as quickly as possible.  The look will stave off a lot of comments and questions, but it won’t catch them all.  Have a statement ready.  If you don’t, you might freeze or say something you regret.  You don’t want to be forced into a position where you find yourself apologizing for your child.  Being autistic is nothing your child did wrong.  You’re not wrong for taking your child into a store.  You have just as much right to be there as anyone else, both of you, and you can’t ever forget that.  Your child is listening.

5) Be prepared to drop everything and leave.

Sure, you’re only here because you have to be.  Sure, you came because you need something and you really don’t want to leave without it (or without paying for it).  But it might happen (not the without paying for it part, please; that will cause problems and those bleeping things won’t help your child).  Your child may be more dysregulated than you think.  Things can spiral out of control pretty fast sometimes.  It happens.  No matter how prepared you are, no matter how much you think you have things under control, sometimes things will be suddenly very much out of control before you can even take a breath, let alone prevent it.

Be prepared to pick your child up and your bag/purse and get out of there.  Leave the cart, the merchandise, and everything else for the staff to take care of (they get paid for it).  If things get out of control, don’t try to force yourself to finish.  Just get out of there.  It’s not worth it.

Shopping with an autistic child can be a wonderful experience, but it has to be the right time, the right mood, the right regulation, and the right store.  Otherwise, it can be hell, but you can survive it with you and your child and your personhoods intact.

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Artistic Expression

  • Posted on March 16, 2012 at 8:00 AM

Both Mark and I have artistic talents.  For Mark it’s singing, and some drawing and some photography (though, he’s never pursued those); for me it’s writing, obviously.  Our boys, all fours of them, have artistic talents as well.  Brandon, Willy, Alex and Ben all draw.  They do it for fun, but each has enough talent that they all could pursue it as a hobby or a vocation.  They all love music, too, though Brandon is the only one who wants to take that interest beyond personal pleasure, at least so far.  Willy has developed an interest in cinematography, though he doesn’t know the word.  He likes to watch and make home-made videos, particularly a kind of video called “Let’s Play” on YouTube.  Alex is mostly interested in drawing/coloring variations on Veggie Tales themes.  Ben’s interests include drawing a variety of images he picks up, mostly from movies or videos.  He’s even getting to the point where he can tell me a little about what he’s drawing.

Art as Communication

Right now, the younger boys (including Willy) mostly use their art as means of entertainment and expression, but art is also a form of communication.  They communicate their interests and their thoughts with what they draw.  Alex shows his peculiar vision, distorting, instead of recreating, some of the images within the pictures he colors, which I find fascinating, though I have no idea how to interpret these works.  Willy draws what interests him, what he’s fixated on.  For example, when Willy was obsessed with crying, he drew a lot of his characters with big crocodile tears.  Now, he’s drawing them in grids, showing their ranking—competition is a big focus for him now.  He wants to know where people stand.  Ben’s drawings vary from the various Dreamworks logos he’s seen to scenes from video segments he likes.  He doesn’t communicate what he wants so much as what he has watched; whereas most of Alex’s scenes are created from memory, and if you put the associated video on, he then tunes into the video, at least for a while, instead of stimming over the opening sequence.

As their skill with artwork advances, I expect they’ll be able to communicate more complex thoughts and emotions (I’m seeing some of that already).  Unfortunately, visual art isn’t my medium, so I’m a bit worried that my inability to interpret or understand their work is going to be a stumbling block for us.  Perhaps it already is.

Art as Vocation

One of my hopes is that, when the boys come of age, they’ll be able to pursue careers that interest them, that utilize their skills and talents—careers that they can be successful in despite their disabilities.  It is my belief that everyone should have the right (or perhaps the privilege) of trying, though not everyone will succeed.  My confidence in this regard is strongest with Willy, who (currently) is the least limited by his disabilities.  Because Willy is recognized by influential members of society (currently consisting of teachers and other school staff) as being capable, his disabilities are not used to limit his potential.  He’s “allowed” to pursue his interests.  Whereas Alex is limited by his disabilities.  Despite my best efforts, Alex’s capabilities tend to go unrecognized by those influential members of society; his future is seen as being limited by the services and supports that are provided to people with his disabilities.

I look to a future in which my boys—all four of them—can pursue their art as a vocation, as a career.  I look to a future in which Alex, especially Alex, is provided the services and supports he needs to pursue the career he wants for himself, not limited to the work tract that is expected and available to someone with his disabilities.  I’m still not sure how to bring that future to fruition, but I’m determined to make it possible.

The Art of Autism

And that’s one reason why, when I recently came across The Art of Autism via LinkedIn, I took an interest in the work they’re doing.  I’m already a fan of The Autism Acceptance Project.  I know it’s possible, and I know I’m not the only one who sees potential, instead of limitations.

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How to…Survive the Smearing (Kids at Home Edition)

  • Posted on March 14, 2012 at 8:00 AM

Last week I wrote about how to survive the smearing of feces when your children can be sent to school.  As you might imagine, things get a bit more difficult when you have a smearing incident while the kids are home.

The key word is containment.  When the kids are gone, you can contain the mess with relative ease.  When the kids are home, you must contain the mess and contain the kids, and clean up the mess, simultaneously, all without going crazy.  Believe it or not, it’s not as easy as it sounds—and, yeah, I know it doesn’t sound particularly easy.

The difficulty here is that kids who have no problem smearing their own feces have no problem (usually) stepping in it and tracking it all over the house—even after you’ve bathed them.

The actual cleaning steps, assuming you can contain it, are virtually the same.  The problem arises with the containment factor.

IF you have a situation where:

1) You can safely put the kids outside to play…

2) You can have another adult take the children to the park or somewhere equally out of the way…

3) You can have someone responsible (an older child who’s responsible enough to watch them while you’re there, but not while you’re gone) watch them in a dedicated room, perhaps with a video…

4) Or any other alternative where you don’t have to be babysitter and maid simultaneously…

THEN, use this opportunity to focus on cleaning the mess.

But, really, honestly, how often do we really have that kind of help?  Maybe it’s just me (probably not), but when my kids were smearing and were home, I was usually the only person available to deal with the situation—not always, but often enough.

IF you are alone, you can’t single-mindedly focus on the cleaning.  And there’s no good news.  You will have to go back and forth from the cleaning task to caring for the child(ren), and there is a risk of cross-contamination if the child enters the messed up are, which is to be avoided as it makes a difficult situation even more difficult.  So, vigilance is required.

Do the best you can.  Forgive yourself for the tears, the frustration, and the harsh words you might not be able to hold back.  I’m not actually advocating being mean to your kids to vent your negative feels, but sometimes it happens.  Apologize to your child(ren), and forgive yourself.

Then, find a way to let it go.  Maybe after the mess you should do something fun with your child.  Maybe by the time the mess is cleaned up someone else will be there so you can take that hot shower, followed by a lingering bath.

Whatever happens, remember: This too shall pass.

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Reliving the Moments

  • Posted on March 12, 2012 at 8:00 AM

I love being a writer.  I’m glad being a writer gives me the means to share my stories and to advocate for my children.  But, honestly, sometimes it sucks, because impacting the lives of others requires sharing my own, especially the painful moments.

I’m working on a book that I describe as a “persuasive memoir.”  It’s more than a typical memoir, but it relies on sharing my experiences to show how I got to where I am.  I’m also collaborating on a book about special education, and this first one that we’re working on focuses on what parents need to know when they’re just getting started.  It seemed, from the conversation I was having with my collaborator, that he thought I sort of knew what I was doing when I first entered the world of special education.  But I didn’t.  So, I had to put into context for him what my entry into special education was really like.  And then, he wanted me to write up that story for the book.

It hurts.  Even though I’ve moved on from these moments, even though I understand the importance of sharing them, it hurts to write them down.  Part of my process in writing is to immerse myself in the moment again, to capture how it felt and what was going through my head.  I’ve come a long way since these moments, but going back to them still hurts.  Perhaps it always will.

But this is what I do.  It’s what I need to do.  By sharing my experiences, I help those who are living them now to know they are not alone in those experiences, and that there is a time after those experiences when things do get better.  It’s about humanity and hope; it’s also about helping others to get the information and wisdom that I lacked, that I wished I’d had, without having to come the long way around to discover it.

And sharing my experiences with a professional of the caliber of my collaborator also benefits me.  I’m still learning.  The curve is steep, and I’m still climbing.  Every new bit of information, every trick, every technique helps me to serve my own children better.  Sharing that with others helps them to serve their kids better.  And, in the end, the world will be a slightly better place for the work I’m doing.

That’s worth doing.  But that only makes the pain worthwhile, not less.

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