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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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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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A New Article is Live: Take the Scare Out of Dental Care

  • Posted on March 9, 2012 at 8:00 AM

It’s great when you get to write from a position of authority and learn at the same time.  If you’re struggling with providing your children with a positive dental experience, then please check out my article, Take the Scare Out of Dental Care, published in MetroKids.

Thanks!  And enjoy!

:)

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How to…Survive the Smearing (Morning with School Edition)

  • Posted on March 7, 2012 at 8:00 AM

I’m trying a new theme this month.  One thing I write as a professional is how-to pieces, and considering the number of times I’ve been asked “How do you do it” in reference to raising three children with autism, I thought maybe a “How to…” theme would be a better fit than a music theme.

So, as the mother of three children with autism, I have to admit one of the hardest things to cope with, for me, was the smearing of feces.  It has been, by far, the most disgusting aspect of my children’s childhood.  To wake up in the morning, ready for the rush of getting the kids on the school bus, and to peek into one of the boys’ rooms…

The first thing that hits is the smell.  When one of the boys starts the morning off with a stinky diaper, that’s bad enough, but when the contents of that diaper is smeared across the walls, rubbed into the carpet, and worn like war paint, then the smell fills the room, hitting me as soon as I open the door with near-physical force.  My gag reflex kicks in almost immediately.  If I’m not careful, I’ll throw up.

It’s important to set priorities.  Cleaning the mess is a huge task, especially if you have a bus to catch.  The advantage of that bus, of course, is that you get the kids out of the way—which makes cleaning easier, at least once you get to it. 

So, the first step is to remove the “war paint.”  I accomplish this with a quick, but thorough bath.  It’s not the fun, lingering bath the boys love.  It starts with a rough scrub.  Fill the tub with only enough water (hot, but not too hot) to cover the child’s hips when seated.  Scrub off all the visible poo.  While you might be tempted to use an old washcloth, be sure to use one with enough texture to make for a good scrub.  It also helps to have a nail brush, because the poo gets under those (frequently long) nails and doesn’t come out in a soak, let alone a quick scrub down.  Scented soap—like lavender nighttime babywash—also helps cover any lingering odor.

Then, once all the visible poo is gone, let the water out, but keep the child in the tub.  Rinse both child and tub thoroughly.  Then, fill the tub again, this time with the usual amount of water you use and a daytime soap (you don’t want them to be drowsy).  Use a new washcloth.  Wash thoroughly.  Hair, face, arms, back, hands, everywhere.  Rinse and let the tub drain.  Then, since you’re short on time (at least, you will be if morning baths aren’t your usual routine), get the child dried and dressed yourself.  This is not the time to work on self-care skills.  If at all possible, keep everyone—including yourself—out of the offending area.  I set out the morning’s clothes the night before, outside the bedrooms, so this is pretty easy for me.

Next, finish the morning routine, making sure all kids get to their buses on time (or, if you have to drive them, that you make it to the schools in time).  This is rough on everybody, because the normal routine is shot, but there’s not a lot you can do to help that.  Try not to make it too different, because such breaks in routine can be traumatic and that will make your job harder.

Once the kids are out of the house, go back up the room.  Wear cleaning gloves if you have them.  Use disposable cleaning supplies (wipes, paper towels, ect.) whenever possible.  Have designated poo supplies for those tasks that require less disposable cleaning tools (brushes, buckets, ect.).  I also recommend using one kind of disinfecting cleaner for poo (and possibly vomit) and one for everything else.  If you or anyone in your household is sensitive to smells, then that smell, even though it’s a clean smell, is going to be associated with poo smearing in, and you don’t want to associate regular cleaning tasks with poo smearing if it can be avoided.  I used liquid Lysol and to this day (years after the last major smearing incident, which, by the way, means they just might grow out of it!) I can’t smell liquid Lysol without gagging.

Start with the carpets or floors first, because you have to walk on them to reach everything else and you don’t want to step in it.  Start with the spot closest to the door.  Work your way into the room.  Be careful not to kneel (if possible) in a spot you’ve cleaned.  Check the whole floor.  Don’t rely on what you notice first.  Check the floor thoroughly, every spot, even under beds and other places that are easier for your child to reach than they are for you.  Then, move on to the surfaces.  Scrub the cloth surfaces (anything that can’t go into the washing machine) first.  Then move on to hard surfaces.  Check all surfaces.  Then, move on to walls, doors, and don’t forget the doorknobs.

I recommend piling the soiled laundry in the tub until you’re ready to deal with it, but unless you know you have two loads, don’t start washing laundry until you’re done cleaning other things—you’ll want those rags in there, too.

Once you’re sure you’ve cleaned everything in the primary room, and gotten the soiled laundry out, check the surrounding areas.  Search for poo, especially in the bathroom.  When you’re sure you’ve gotten it all, wash the soiled stuff in the washing machine.  Use bleach or OxyClean, but not both (they don’t mix well).  Put it through a full wash—all the soiled stuff together, even if you wouldn’t usually wash them together.  Then, take them out of the washer, check for stains, smell for lingering odors, use Febreeze on those items that still smell and use stain remover on anything stained, and then sort them with whatever other laundry you have.  Wash them again.  Don’t forget to go back and clean the bathtub, too.

By now, the room should be a bit drier from the cleaning.  Use paper towels to soak up lingering dampness.  Then use Febreeze on the whole room.  Every cloth surface that can be sprayed with Febreeze should be sprayed with Febreeze.  Wait for that to dry, and then vacuum.

If you have to throw up, go ahead and throw up.  If you have to cry, go ahead and cry.  In fact, I recommend crying, because crying acts like a release valve, letting off the “steam” of frustration, tension, anger, and other negative emotions that would otherwise get pent up and build until they explode.

Once everything’s clean, take a shower.  Scrub yourself thoroughly.  No matter how careful you were not to get any of it on you, you’ll still feel dirty—at least, I always do.  After you take a shower, since now your bathtub is clean, feel free to take a nice, soaking bath.  That, too, can help heal the trauma of having to clean up after smearing.

Maybe even treat yourself to something nice.  I recommend a non-food treat, like maybe an episode of your favorite television show (if you don’t have DVDs, try Hulu or the website of the station that airs the show) or movie.  Yes, I know, you don’t have time—you’re schedule is already way off track—but, really, make the time.  Surviving a smearing is more than just cleaning the mess.  You need to cope with the trauma, too; and it is traumatic, it is disgusting, it is frustrating.  Give yourself time to recover, and then let it go.

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Technology at a Touch

  • Posted on February 27, 2012 at 8:00 AM

Between smart boards, iPads, and our Kindle Fire, Alex is used to technology that he can simply touch to make things happen.  I haven’t decided whether I consider this a good thing or a bad thing.

On the one hand, this puts more kinds of technology within Alex’s reach.  This is very good.  He likes technology and he likes what he can do with it.  So do I.  Traditional computers, the ones that require a mouse, are very difficult for Alex to use.  First, he has delays in fine motor development.  He’s getting better, but it’s still hard for him to make his hands do what he wants when it involves small tasks.  Second, his eye sight is not so good, but he still doesn’t have glasses that he’ll wear.  Between the two of them, using a mouse is hard work and touch technology makes it much, much easier.

On the other hand, because using a mouse is so difficult for him, he’s stopped trying.  He’ll watch someone else while they use our at-home computer, but he’ll only use the Kindle Fire, which involves touch technology.

I’m considering upgrading our computer to one with touch capabilities, but I’m worried that this will simply reinforce the notion that he doesn’t have to learn how to use a mouse.  And I’m worried that that will limit him in the future.

So, I’m still undecided.

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What Can We Do?

  • Posted on February 17, 2012 at 8:00 AM

On January 31, the Autism Society of America and the Autistic Self Advocacy Network issued a joint statement condemning the proposed changes to the autism spectrum disorder diagnosis in the DSM-V.  Along with this united statement, I’ve read articles, posts, and other statements that have convincingly implied (or stated outright) that the proposed changes are motivated by politics, not science.

I’m not going to rehash these arguments in an effort to try to convince those who support the proposed changes not to do so; nor am I going to try to convince those who are undecided to stand against these politically-motivated changes.  Plenty of people are doing that already.

What I would like to do is act.  Unfortunately, I’m not sure what can be done.  So, instead, I’m going to ask:

What can we do about it?

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