Concrete (part two of three)

“It seems that for success in science or art, a dash of Autism is essential.  For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways, with all abilities canalised into the one specialty.”

Hans Asperger

It’s important for me to say that I really quite admire my brother.  He has a lot of ingenious abilities (like breaking and entering:).  And one of the results of watching his Autism (undiagnosed, although my dad’s working on that again now), over the years, is that I’ve been quite privileged to suspect that my own children with Autism, in spite of peoples’ tendency to underestimate their abilities, are actually quite smart.

A doctor once told my mom that he couldn’t figure out why my brother didn’t have the physical characteristics of mental retardation.  “Ummm,” she answered, “maybe it’s because he doesn’t have mental retardation.”

Were they just complete idiots thirty years ago?  They couldn’t recognize Autism even when they were staring straight at it?  Sometimes this makes me so mad that I think my head might explode.  Because at the same time the doctors were sitting around wondering why my brother didn’t have the physical characteristics of mental retardation, my brother was at home trying to figure out a cure for H.I.V.

“You know, Jessie?” my brother said to me (he was about ten years old at the time), “H.I.V. multiplies itself in the blood, making lots of little viruses.  That’s why they can’t isolate and destroy it once it’s in the blood stream.”

He’d been obsessed with this for awhile already, but I stopped whatever it was that I was doing and listened to him anyway.   

“Viruses can’t survive freezing temperatures though,” he continued, “I wonder if they could do a surgery in which they pull all of the blood out of a person’s body, freeze it, then warm it up and put it back into the person again.  That would kill all the little viruses.”

I, who had probably spent the morning trying to figure out what to wear to school the next day, thought that this sounded rather important, so we went and explained my brother’s idea to my parents.  My parents explained to us that H.I.V. infiltrates all of the body, however, not just the blood.  “Good thinking, though!” my mom said to my brother (who then spent the next two weeks trying to figure out how to freeze a whole person without actually killing them, before finally giving up).

Later that year, my mom saw something on the news about how someone had contracted H.I.V. via a blood transfusion.  Blood banks, as a result, were stepping up measures to make sure that all collected blood was frozen before it was used.  My mom came back to my brother after this and told him that his idea was very good.  “They actually do freeze blood in order to kill all the little viruses!” she said.

In spite of the holes in my brother’s knowledge, I think that he had a fairly good understanding of H.I.V. for his age.  The part that’s always bothered me, however, is that he was flunking his science class, which was where he was learning about viruses in the first place, at the time.  It seemed like he was always flunking his classes, in fact, in spite of his sometimes ingenues little mind.  And this was always very confusing to me.  I eventually grew to realize, however, that it’s not that the information wasn’t getting in.  He just couldn’t always get it back out in the ways that could bring good grades.

My son, Cale, is another example.  Cale is six and a half years old now and is still actually non-verbal.  The doctors have always told me that he is the developmental equivalent of an eighteen month old, but I have often suspected that he understands more than people think he does.  He just can’t talk. 

I’ve chosen to believe that this is the result of a disconnect in Cale’s “wiring” rather than a result of his intelligence.  And this disconnect seems to be in the area of his brain that deals with communication in general.  In other words, there’s more to it than the “not talking.”  His brain doesn’t seem to tell his brain to initiate communication at all, in any way.  That particular “wire” appears to be severed.

Not only has Cale not learned how to talk, but, until recently, he hadn’t learned how to communicate in any way other than smiling or screaming and crying (like he did in order to get his needs met as a baby), in spite of a countless number of hours of intensive behavior therapy (giving him lots of “motivation” to initiate communication), and in spite of nearly constant attempts to teach him how to use words, pictures, and sign language.

I have driven myself absolutely wild, at times, trying to force communication solutions for Cale.  And not only had nothing ever worked, but I had honestly given up hope of ever finding a form of communication that he’d able to use successfully.  I had come to accept that we’d have an intelligent child, who couldn’t communicate, with all of the accompanying frustration and harmful behavior that results, forever.  Just recently, however, the state of Montana (God bless you people) bought Cale an iPad. 

We’ve put photographs of all of Cale’s favorite items and activities on this iPad, and all he has to do is push the picture (push which item or activity he wants) and the iPad says the words for him.  “I want bacon,” it says, in a mechanical little voice.  

I have to admit that I was skeptical at first.  In fact, I didn’t get my hopes up about it at all.  And it did take him quite a little while to catch on.  “Honestly son,” I’d say, tamping my hope back down into my stomach where it apparently belonged, “All you have to do is push the damn button.”

He didn’t get it.  For awhile, I pushed his finger into the pictures myself.  Then I gave him whatever item or activity I’d made him push.  Cale’s speech therapist worked on this with him a whole bunch as well.  And one day, to my surprise, the tips of the severed wire seemed to actually touch.  Cale pushed a picture on his own.

Now Cale laughs out loud every time he pushes a picture of what he wants and the iPad says the words for him (and if we could just get his little head to stop twitching in the process, we’d be in good shape:).  He’s able to communicate whether he wants apple juice or grape juice, for example.  He’d never had a way to make choices before.  He’d only ever been able to pull me to the fridge and cry and hope that the juice of choice was in there.  Now he’s able to specify grape juice, whether it’s in the fridge or not, and I’m able find grape juice (even if I have to go to the store to get it).

Words, themselves, are bringing Cale what he wants now – what he wants specifically.  Just a couple of weeks ago, in fact, Cale started pulling my arm and I thought that he wanted to take a bath (he hadn’t had one yet, and he likes to have one every day after school).  We decided to give him the iPad, though, just for practice, and he pushed, “Circle sausages.” 

“Circle sausages” are what we call turkey kielbasa.  We didn’t realize that Cale particularly liked “circle sausages,” but Shane went ahead and made him some anyway.  Cale giggled the whole time that he was eating them too, like this was the single best thing that had ever happened to him.  And I would’ve put him into the bath tub and wondered why on earth he was crying. 

Then, just a few days ago, Cale started pulling my arm.  I was feeling lazy and didn’t particularly want to get up, so I said, “No, no Sweetie, Mama’s busy.”

He went away.  A couple minutes later, he came back and started pulling my arm again.  I gave him the same response, so he went away again.  A few minutes after that, he came back with the iPad.  He had gone and stolen it from Alden, who had been playing a game on it. 

Cale thrust the iPad onto my lap, pulled up the screen with all of his pictures on it (all by himself, which is a several step process when it’s in the middle of a game), and pushed on the picture of himself in the bathtub.  “Take a bath,” it said, in it’s eerily Stephen Hawking-ish voice.

That’s when it really hit me, I think.  I cried all the way to the bath tub.

Even if Cale never learns how to actually talk, he’ll always, at the very least, have this form of communication.  And now that he’s initiating communication with some things, I’m having my suspicions confirmed that he really does understand a lot, maybe even as much as any other six and a half year old.  Now I can tell the doctor that compares him to an eighteen month old to shove it.  

We’re expanding our “picture vocabulary” on the iPad already (I’m currently trying to figure out how to photograph physical sensations so that he can tell me how he feels on his medications), and I have no doubt, now, that Cale might even be able to learn how to type some day.  I had always thought that he was in there somewhere.  Now he can work on getting out.  

I’m currently reading a book called The Complete Guide to Asperger’s Syndrome by Tony Attwood.  Tony Attwood is a clinical psychologist with over twenty five years experience in working with people with Asperger’s Syndrome.  And he has a positive approach, I think.  Whenever he has to tell somebody that they have Asperger’s, this is what he says:

 

“I usually say, ‘Congratulations, you have Asperger’s syndrome,’ and explain that this means he or she is not mad, bad or defective, but has a different way of thinking.” 

He discusses how some of the person’s strong suits are probably actually due to the person having Asperger’s syndrome, and he goes on to list examples of the sometimes savant like traits that occur alongside the difficulties associated with the syndrome.  He uses a brilliant metaphor actually.  He says to imagine the developing brain as a clearing in a forest, with different brain functions represented by emerging trees. 

He says that if the “tree” associated with “social reasoning” doesn’t develop first and become dominant, thereby actually restricting the growth of competing trees, that the other “trees” (or abilities) may become stronger.  In that case, there’s not only a potential for highly developed abilities, but these abilities might not ever be overshadowed by “social reasoning.”

I had somebody ask me, one time, what the difference between a psychopath and somebody with Asperger’s is.  I mean, both struggle with empathy, right?  It’s a silly question, in my opinion.  But here’s what Tony Attwood says about it, “A psychopath usually has a superficial charm and a previous history of ingenious and intuitive ways of exploiting and manipulating others.  They are the ultimate human predators.  The person with Asperger’s syndrome is socially naïve and immature, and usually at the opposite end of the predator-prey spectrum.  Both have problems with empathy, but for different reasons.”

I would also argue that psychopaths probably aren’t capable of (or have no interest in) developing empathy, whereas people with Asperger’s are, and absolutely do, throughout the course of their lives.  Just because the “tree” associated with “social reasoning” is underdeveloped compared to the other “trees” (or abilities), doesn’t mean that it’s not there.  It might actually even grow to be quite healthy.

If you want to see kind of a good (although quite sensational), Hollywood portrayal of someone with Asperger’s going up against a psychopath, see Girl With The Dragon Tattoo.  The author of these novels gives the main character (Lisbeth) Asperger’s syndrome and a very traumatic childhood, which is why (as he explains in the third novel in a conversation between Lisbeth’s old guardian and Mikael) the label of “Asperger’s syndrome,” alone, doesn’t explain everything about her (not that it does anyone else either).   

The author did his home work on this one, I think.  In fact, I even have to wonder if the author has Asperger’s himself.  I say this not only because of his apparent insight into the syndrome, but also because of the complexity of these stories.  The first two novels were actually quite readable, but did you read the third one?  Shit!  I’m a person that can usually analyze a story to death, right in my own head, and never forget the details of it (my husband likes to tell me that I can analyze the fun right out of anything), yet even I had to make a hand written flow chart of characters and associations in order to get through the third novel.   

The author gives us a few of the more common, possible idiosyncrasies of someone with Asperger’s in Lisbeth’s character (the stiffness of her body, the lack of sustained eye contact with strangers, the way that she eats, and the way that she prefers not to be in certain kinds of clothing, etc.).  And while we can see the alleged Asperger’s in Lisbeth’s “special abilities” (her photographic memory and computer skills), we can also see it (along with the effects of a traumatic childhood) in every one of her social interactions throughout the story (which is the interesting stuff to me). 

Compare her reaction to being victimized, for example, to the much more classic victim response of Harriett Vanger.  And, when you finally figure out who the psychopath is, do compare the psychopath’s social intelligence to Lisbeth’s (I didn’t know who the psychopath was until they actually solved the case, but I had Lisbeth pegged as Asperger’s the moment we met her). 

In addition to the more conspicuous comparisons, pay attention to Lisbeth’s social idiosyncrasies in relationship to the idiosyncrasies of the less intense characters.  Take one of the components of Lisbeth’s relationship with the journalist, Mikael, for example. 

One of the subtle realities of Mikael’s personality, I think, is that he has boundary issues with women.  I don’t think that he’s a womanizer in the traditional sense (in other words, I don’t think that he intends to hurt women).  His relationships with women just tend to be complicated, or real simple, depending on which way you want to look it.  And I think this is partly because he’s actually unsure, at times, about his own boundaries.

Maybe a better way of putting it is that Mikael’s boundaries seem to be movable (the women reading are probably saying, “Yeah, I’ve known a few men with ‘movable’ boundaries in my day too.”).  But I think that what the author is actually trying to portray, in Mikael’s character, is someone who loves women in general (which I suppose doesn’t come without it’s flaws).  So Mikael isn’t as firm in setting boundaries with women as he is with men.  And people with Asperger’s are notorious for pushing, and sometimes not even recognizing, boundaries, especially when the other person isn’t crystal clear about what they are and quite firm in the setting of them.    

There are repeated demonstrations of this between the two characters (besides the sex), the smaller power struggles ranging from her smoking inside to her getting into his computer right in front of him, etc., and the most conspicuous of which happening when she asks him for nearly all of what’s left of his life savings. 

Now, because Lisbeth doesn’t know what it’s like to have “boundary issues” with anybody (you’re cringing right now if you’ve seen the movie, because not only does she know precisely what her own boundaries are, she’s also extremely firm in the setting of them) she has no way of knowing that this is what might be going on with Mikael.  Instead she interprets his lack of setting boundaries with her to mean that he really likes her (which he does, loves her even, it’s just not quite in the way that she would like).  It’s an absolutely brilliant combination of main characters, in my opinion, without which the story really couldn’t have unfolded the way that it does. 

If you do see the movie, I would also encourage you to pay attention to Lisbeth’s motives in general (the things that seem to motivate her).  She’s intensely loyal to a few, yet fairly indifferent to everyone else.  There’s serious integrity in her adherence to right and wrong (even though she has her own ideas about “right” and “wrong”).  And there’s a childlike pureness of heart about her, in spite of the sometimes violent idiosyncrasies in her “social reasoning.”  It’s a very good movie, but it’s definitely not for the faint of heart.  In fact, don’t think that you can enjoy a bucket of popcorn, at all, while you’re watching it.

Well, that was an interesting tangent.  Oh my GOD, I can analyze the fun right out of anything.  Oh well, at least I’m writing.  Where was I?  Oh yeah.

“The brain is wired differently, not defectively,” Mr. Attwood says about Asperger’s syndrome, “The person prioritizes the pursuit of knowledge, perfection, truth, and the understanding of the physical world above feelings and interpersonal experiences.  This can lead to valued talents but also vulnerabilities in the social world, and will affect self-esteem.”

While I was helping my daughter get ready for bed last night, I heard her whispering to herself, “I’m stupid, stupid, stupid, stupid.”

Sometimes this kind of stuff just shreds my guts.  I actually held back tears as I said to her, “Don’t say, ‘stupid, stupid,’ Sweetie.  Say ‘I’m smart, smart, smart, smart.’”

“But Alden says I’m Autistic,” she said. 

“You’re one of the smartest little girls in the whole, wide world,” I said, “And do you know why?  It’s probably, at least in part, because you’re Autistic.  You’re gonna be able to do anything you want in life.  I know it.”

“Really?” she said, “Can I stay up?”

“Okay, almost anything,” I smiled.

Concrete (part three of three)

“If the world was left to you socialites, we would still be in caves talking to each other.”

Temple Grandin

I’ve been thinking a lot about a church camp that my brother and I attended when we were growing up.  This is for a couple of reasons, I think.  Just before my recent bout with wondering if I’m making it look like there’s something wrong, instead of different, about my brother, I had been writing about some of the experiences that my brother and I had at camp.  Then, just a few weeks ago, a friend of ours, who went to that camp with us, was killed in an accident.

It stopped me in my tracks.  I mean, I hadn’t seen or talked to the guy in probably twenty years, but there’s still something about this kind of thing that makes you re-evaluate what’s important.  I hugged my husband and kids extra hard, e-mailed a couple of other old camp friends, and was seriously distracted by how unimportant something like selling my house actually is.  This might’ve been okay, too, if I hadn’t been in the middle of having an open house on the day I found out about the accident, with people asking me questions about really stupid things, like maple floors and plumbing, all afternoon.

I wanted to go the funeral and say good bye, not only because it would be my last chance to, but also because I thought it might be a comfort to this person’s family (his brother, in particular, who also went to camp with us) for as many of us as possible to attend.   

There were several of us that I knew that were planning to go, so it’s not that I thought my own presence would make much of a difference.  I guess I don’t know, exactly, why I felt so strongly about attending.  I just did.  The funeral was going to be held in another town, however, about a five hour drive away from where I live. 

I have friends that live in that town, so I didn’t have any trouble arranging a place to stay.  But Shane and I only have one vehicle, and Shane didn’t want me to leave him and the kids without a vehicle all weekend.  So I called my dad and asked him if I could borrow one of his vehicles.  My dad told me that he’d locked his vehicles in his garage, however, before leaving for Arizona, so that my brother wouldn’t be able to get to them while he was away.  And I should mention that my dad’s garage isn’t just a garage.  It’s more like a maximum security penitentiary for man “toys.”

“My garage is locked up really tight,” my dad said.

“Oh really?” I answered.

“I think I put all the keys to it in my safe, though,” he continued, “I can give you the combination so you can check, but you’ll have to get yourself into the house in order to get to the safe.  Maybe you’re brother could let you in the hou… hey, wait a minute!”

My sense of relief was so complete that it actually hit the bottoms of my toes.  “He could break straight into the garage for me,” I finished my dad’s thought for him.

“Yes, he probably could!” my dad laughed, “And to think that I actually locked up the garage in order to keep him out of it.  That was rather silly of me, wasn’t it?”

“No,” I said, “What’s silly is that I got mad at him, not all that long ago, for his breaking and entering abilities, yet now I may need him to use them for me.”

I ended up not going to the funeral anyway.  It was right before Christmas and I had family coming into town that were, unbeknown st to me at the time I was making arrangements to leave, scheduled to arrive at my house on the day of the funeral.  It was also because the roads were supposedly going to be bad.  And because I had recently spent all of our money on Monster High Doll stuff and games for the WII for Christmas.  And what were the other reasons?  I know that there certainly seemed to be an overabundance of them.  Whoops, do I sound irritated about this?

“You’re a good friend,” somebody said to me later, “that you’ve would’ve dropped everything, had you been able to get away with it, to go and say good-bye.”

“No, I’m not,” I said, “Because I didn’t actually do it, did I?” 

I had the strangest dream about these camp friends of ours a couple of weeks ago.  Only I never got to actually see them in my dream either.  It was kind of like one of those showing up someplace naked dreams, only the other way around.  I can’t remember the details of it, exactly, but I know that we were up at the college in town here, and that my friends were scheduled to arrive there later that night.  Just before they arrived, however, I realized that I hadn’t showered, or done my hair, or put on any make-up, or anything.  I looked in the mirror, and I looked terrible.  So I left. 

I spent the whole rest of the dream trying to get home, get ready, and then get back up to the college again.  And, of course, every possible obstacle was in my way.  First, I couldn’t find my car, so I had to run home.  At home, I couldn’t find any of the things that I needed to get ready.  Everything had literally disappeared off the face of the planet. 

That’s when I realized that I didn’t want having to look any particular way to keep me away from my friends, so I left home and started trying to get back up to the college again.  Not only would I show up without any make-up on to see people that I haven’t seen in years, but I’d also be all sweaty from running.  Lovely.

On the way back to the college, I got lost (yes, somehow, in my own dumb home town, I got lost).  I ended up in a parking garage (on foot), at one point, that was like a giant maze.  I ran up and around, and up and around, and up and around some more, and there never was a way back down, or out, or anything.  I ran into one concrete wall after another, one road block after another, and, before I could actually get back up to the college, Shane woke me up and told me that it was time to get the kids ready for school.  

It bothered me all day long.  I figured that it was just a reiteration of how I felt in trying to get to that funeral, however, until it occurred to me why I’d left the college in the first place.  That was the disturbing part.  I mean, why would I have cared what I looked like?  God himself couldn’t keep me away from that college if those people were there, much less not having any make-up on.  So what was that about?

I finally figured out that the dream wasn’t to be taken literally (duh).  It was more of a metaphor instead.  You see, worrying about what my brother thinks, or what my kids think when they grow up, or what anyone, for that matter, thinks of my writing, is sort of akin to having to have make-up on.  It’s about wanting to look good, or wanting to be liked, or wanting to be acceptable, or whatever.  And that’s powerful stuff.  It actually had the power, in my dream, to get me away from what really matters. 

The thing that matters in my writing, and in my own life, is my own truth.  I clearly need to quit worrying about what that “looks like” to others, and worry only about whether or not it’s acceptable to me.  But that got me wondering, is it acceptable to me?  Obviously it isn’t yet, otherwise I wouldn’t have been afraid to show it to my friends in the dream.

I wrote a paper, one time, when I was in college.  In it, I talked about accepting peoples’ differences.  “We should accept the differences in people with disabilities,” I explained, dryly.

The professor, who had a sister with Down’s syndrome that he liked to talk about, was an absolutely gorgeous sixty year old man (seriously, I had never seen a body like this on someone past the age of twenty five – I’m just saying).  He wrote on this paper of mine.  And, because I had a little crush going on, I think, I couldn’t wait to get home and read what he wrote. 

“Accept the differences?” he asked in disgust, “That’s the lamest thing I’ve ever heard in my entire life.”

“Oh, SHIT,” I thought, but then I read on.

“How about celebrate the differences?” he asked, “We should be celebrating the differences in all people, with absolutely everything in us.  That’s the only thing that brings true unity.”

So, I should be celebrating my brother’s breaking and entering abilities?  I should be celebrating the fact that my daughter’s mantra is, ‘I’m stupid’?  I should be celebrating the fact that my son can’t talk, and that he’s twitching involuntarily?  I should be celebrating the “always-ness” of all of the damn “somethings”?    

Can you see where I’m going with this?  My own “truth” clearly needs a little shower.  The one story about my brother breaking into my house is, again, a perfect little example.  

When I needed my brother to break into my dad’s garage for me, I felt like I did while watching Girl With The Dragon Tattoo at the moment when Lisbeth saves Mikael (after we’ve spent the whole movie mistrusting Lisbeth, to some extent, yet all of a sudden we’re saying, “Oh, thank GOD she is who she is!” - because we all know, at that moment, that she’s not just the right person for the job, we also know that she’s going to get it done).  My brother was suddenly the most beautiful person on the face of this planet.

I’ve been thinking about the fact that my daughter’s mantra might become, “I’m smart, smart, smart, smart.”  I’ve also been thinking about my baby Cale and his little green iPad.  And I’ve realized that yes, there is an “always-ness” about the “somethings.”  But sometimes the “somethings” are absolutely amazing. 

Autism brings some heartbreak, there’s no doubt.  But it also brings all of these gorgeous little gifts - gifts that I wouldn’t be receiving if I didn’t have people with Autism in my life.  And these things aren’t just acceptable.  These things are worth celebrating with absolutely everything in me.  It’s all about deciding what kind of experience I want to have. 

The more I go along, the more I realize the sheer pointlessness of putting things into the categories of “good” and “bad” or “right” and “wrong.”  It’s best to clump everything into the category of “It is what it is” or “they are who they are” instead.  And this doesn’t necessarily mean that I have to tolerate bad behavior.  I can kick a person out of my life if I can’t accept what it means to be with them.  But what I can’t do (or, rather, what it’s pointless to do) is sit in the relationship and attempt to change who they are.

I’d like to take a moment here and commend my camp friend for the recent change in her relationship status.  Emotionally unavailable men are just that (unavailable).  And there’s no earthy reason why you should accept such a thing.  I’m glad you sent the last guy on his not so merry way.  That took guts that not a lot of people can muster.  And I’m delighted beyond description that you eventually found somebody else, someone who’s able to reciprocate your own gorgeous availability.  You’re an amazing person.   

My brother can be exasperating for sure, because he may break into your house and not see anything the matter with it.  But I’ve decided to keep him (and my kids too, for some odd reason:), for all of the exasperating, and things worth celebrating, this means.  But I think that my writing is the strongest when I’m coming from a place of love instead of irritation.  You know?  And maybe that’s all that all of this has been trying to tell me.  Just come from a place of love.  It really is that simple.

On the morning after I had that dream, as I was driving home from the gas station, I saw my brother walking down the street (my brother doesn’t drive - but that’s another story).  He was meandering down the sidewalk slowly, smiling at the ground, and kicking clumps of snow into the gutter as he walked. 

“Want a ride?” I yelled out my window.

He didn’t, particularly.  But, in an effort to be polite, he said, “Sure.”

“How’s Dad?” I asked him as he got into my vehicle.

My dad came back from Arizona a couple of weeks ago, so my brother no longer has my dad’s house to himself.  “He’s good.  He has company right now, though, so I’m just heading over to the coffee shop,” my brother answered.

I wrestled with it all the way there, and couldn’t even bring myself to say it as my brother got out of my vehicle at the coffee shop.  I had to call him later instead.  “Alright!” I said, “You can go to my house any time you want (and I gave him a way in).”

Good Lord.  No wonder my brother thinks “normal” people are nut jobs.  I felt a whole ton better though.  I mean, I know full well that nothing’s going to come from my brother being at my house. Actually, I should rephrase that, because one of the neighbors saw my brother going into my house a couple of nights ago and called the police.  We managed to talk the police officer off the ledge about it, however, and they left my brother alone.  So what I should maybe say, instead, is that nothing’s going to come of it that I can’t handle. 

I should also mention that within three days of letting my brother back into my house, I got two offers on the place.  It’s inspected well, the appraisal was done yesterday with no issues, and we should be closing by the end of the month (just in time).  This one, small, seemingly unrelated act of love, was apparently just the stool softener that my life needed:)  God bless.

Snow

I visited with Isabel’s speech therapist for awhile last week, who is helping Isabel “build social communication skills.”  After we chit chatted about our move, which is coming along slowing but surely by the way, she asked me if people ever have a hard time believing us when we tell them that Isabel has Autism.

The reason that we’re not asking for help moving yet is because we’re leaving most of our furniture at the other house until it sells.  It’ll look nicer for the open houses with furniture in it.  We’re just moving the little stuff into the new house now so that we can stay in it.  That way I won’t have to spend all of my time cleaning the other house up after my kids in an attempt to stage it.  We’ll ask friends to help us move after the other house has sold.  Where was I?  Oh yeah, the speech therapist.

“I think people sometimes do have a hard time believing us when we say that Isabel has Autism,” I answered, “People tend to tell me how well behaved and seemingly normal Isabel is, unless, of course, they spend much time with her.”

“Well she presents so typical!” she said, “She’s so polite with the “please” and the “thank you” and the “you’re my favorite therapist in the whole wide world.” 

“I know,” I answered.

“In fact,” she continued, “I even had a hard time believing it until I put her through the testing required to determine her therapy goals.  It’s a test that gets increasing more difficult as you get the answers right, so you begin to experience failure rather quickly.”

“Uh oh,” I said, “What happened?”

“She began to cry when she started getting the answers wrong,” she answered, “so I explained to her that this is what is supposed to happen.”

I rolled my eyes.

“I explained that this is how I’ll know what to work on with her in therapy,” she continued, “but she didn’t seem to hear me at all.  And when she got the next answer wrong, she started pulling her own hair out by the handful and slamming her head onto the table!  It came out of absolutely nowhere!  And I thought to myself, “Oh my GOD!  Here it is!  Here’s the Autism!””

“Yup,” I smiled, “Sounds like my little peanut.”

“I was so scared of what you guys would think when she came out of her therapy session with bald spots,” she continued, “I mean, she was literally ripping handfuls of hair out of her own scalp.”

“Oh, don’t worry about bald spots,” I assured her, “We know our Isabel.”

This therapist, luckily, wasn’t intimidated by Isabel’s behavior at all, “I was able to get her back right away by returning to some of the questions that I knew she’d get right.  Then she reverted right back to the “This is so fun!” and the “Did you know that you’re my favorite therapist ever?””

We both laughed out loud.

“But it really got me wondering how often you guys struggle with people not believing you,” she concluded.

I never have this problem with Cale.  Cale, in this one tiny way, is easier than Isabel.  People take one look at Cale and know beyond a shadow of a doubt that he isn’t anywhere near “normal.”  But high-functioning Autism, especially with the introduction of psychiatric medication (Isabel is on two of them now), really can present quite “typical,” almost to the point where one might wonder why on earth a kid like this would need help at all.    

I was thinking about this as I walked Alden and Isabel to school this morning.  It was cold out.  Snow hovered over head as we walked, clinging to huge black tree branches, and threatening to drop great fat puffs of itself onto our heads.  Ice crunched under our feet.  And our breath hung in the air in front of our faces anytime we dared exhale outside of our scarves.  We all stayed warm enough though, as I had insisted on everybody wearing every snow time item - heavy coats, hats, scarves, gloves and snow boots.  And I was feeling rather proud of myself about this until I started humming the Lord’s Prayer on my way back home.

I have this tendency to think that if I can just control everything, just keep everybody safe and happy and comfortable, that everything will be okay.  But as I hummed, I was struck by the realization that just because I make my kids wear hats, doesn’t mean that snow isn’t going to fall onto their heads.  It never ceases to amaze me just how little control I actually have.

I always imagine that we were in church when it happened, singing the Lord’s Prayer.  The congregation at my church could sing the Lord’s Prayer like nothing less than a choir of angels.  Well, angels with head colds maybe.  It didn’t actually sound very good, but the passion was there.  The passion was alive.  The passion could’ve sparked a thousand fires, in fact, during all that wailing.  And, for some odd reason, these are the sounds that go through my head whenever I find myself thinking about it.

My brother was in the eighth grade the first time he made a friend at school.  He’d never known how to go about making a friend, so he asked my mom how he could to do it.  My mom told him to get the boy’s phone number.  And, the very next day at school, he did it.  He actually asked the boy for his phone number.  And the boy actually gave him his phone number.  

This was a big deal at the dinner table that night.  Besides being happy for my brother, and happy about how excited my parents were about this, I was surprised at how much it relieved my own mind to know that my brother finally had a friend at school, because this friend hadn’t been chosen for my brother.  It wasn’t me, or the child of one of my parents’ friends, or somebody that he’d been forced to group up with at Sunday school.  This boy was somebody that my brother had chosen for himself.  His name was Chris.

I think my brother may have chosen Chris because the other boys at school picked on him too.  Well, “picked on” is a rather nice way of putting it actually.  Every single day, and often multiple times per day, groups of boys would encircle my brother and/or Chris at school, and push them back and forth between themselves like human-sized beach balls.  They’d show them knives and laugh and threaten to kill them, all while knocking them down, waiting for them to get back up, knocking them down again, etc.

They did it in the mornings before school.  They did it at lunchtime.  And they did it in the afternoons after school.  They did in the hallways in between classes.  They did it in the bathrooms.  And they did it in the parking lot outside.  They did it anytime and anywhere they ever happened to get my brother and/or Chris alone. 

Chris only put one bullet in the gun before spinning the chamber.  Then he put the gun into his mouth.

“Give  uuus  this  daaay

Our dai –ly bread,

And  for - give  uuus  our  tres - passes

As we forgive those
Who trespass against uuus,”

The gun didn’t go off.  He smiled and spun the chamber again.

“And lead us not

Into temp - tation,

But  de-liver  uuus

From  e - vil.”

The gun didn’t go off that time either.  He decided to give it one more try.

“For   Thiiiiine

Is   The   KING – DOM!

And   The   PO-WER!

And   The   GLOOO – OORY!!”

I leaned over, looking past my parents who were sitting in the church pew beside me, at my brother who was sitting on the other side of them.  He looked back at me and smiled politely for one split second before the big climax, littered with at least eleven out of tune old lady voices peaking at top volume, “forrr – EEEEEEEEE – everrrrrr!!!”

The gun had gone off that time.  The church organ hummed, “hum hum hum hum hum huummmm.”

Softly now, “Aaaaaa - aaaaaa – mennn.”

It happened on a Sunday.  My brother had gotten Chris’s phone number on Friday.  Then he went to school on Monday and learned about Chris’s game of Russian Roulette.  Chris had died.

People sometimes ask me how important it could really be for a child with high functioning Autism to have help in building “social communication skills.”  And by “social communication skills” I don’t mean,

“How are you today, Isabel?”

“I’m fine Mrs. Smith, how are you today?”

Those kinds of social skills require little more than simple imitation.  My daughter, and my brother for that matter, both have that crap down pat.  What I’m talking about is how to actually read people, and how to make sure that others can read you.

I read somewhere one time that people with high-functioning Autism tend to bring out one of two instincts in other people – either the maternal instinct or the predatory instinct.  My brother, obviously, brought out the predatory instinct in others most of the time when we were growing up.  I really wish I could say that those bullies felt a shred of guilt for their contribution to Chris’s death, and that they then stopped picking on my brother.  But they didn’t.  In fact, that was only the beginning.

My mom used to say she felt like she was throwing my brother to the wolves every time she sent him to school.  And this was years ago.  But I know people who, even today, struggle with allowing their children with high-functioning Autism to attend school.  And I get why.  I also refuse to have any kind of opinion about whether or not a child with high-functioning Autism should attend school.  Some parents can handle it, and others cannot.  And they’re perfect either way in my opinion.

I want Isabel to attend school, even though she struggles with it greatly, because I want her to get intensive practice living in this world.  This may sound awful, but my hope is that she won’t have to live me with for the rest of her life.  I’ll probably already have Cale living with me for the rest of his, so I’m hoping that Isabel will become a self-supporting adult some day.  Therefore, I throw her to the wolves.  And I know full well that this may or may not make any difference.

It’s not that I feel I couldn’t provide Isabel with appropriate academic replacement at home.  It’s just that I think the social skills she needs for success in this world will more likely be developed at school (with therapy support) than at home.  And, again, the social skills that I’m talking about are, well, here are a few examples:

1.      How to figure out what others are thinking and feeling.

2.      How to factor those things into my own actions.

3.      How to get my own needs met, emotionally and otherwise.

4.      How to get through doing things that I really, really, really don’t want to be doing.

5.      How to be a team member.

6.      How to be a friend.

7.      How to recognize a bully.

8.      What to do when you encounter a bully.

9.      What to do when you encounter ten bullies.

10.  How to get revenge on bullies.

What?  Oh, alright.  We’d better scratch that last one.  But these are the kinds of things that children practice at school on a daily basis just by being there.  For some, these things come rather easily.  For others, however, they come with much torture.

I must admit that when I think about what my daughter goes through at school, or, more importantly, what she’ll probably go through at school as she gets older, I sometimes find myself wondering if it would really be so bad to have her live with me for the rest of my life.  And I often find that these kinds of things have more to do with what the parents can live with than anything else.

Isabel, being a girl, will hopefully see more of a maternal instinct in other girls as she grows up than my brother saw in boys.  I don’t know though.  I’ve seen a pretty hefty predatory instinct in certain girls.  But I’ve also seen boys (not many, but a few) turn their own predatory instincts onto predators and protect my brother (Hi church camp friends!  I love you!).  How people react to stuff, I think, can be pretty idiosyncratic.  But most of the time, when it comes to my brother anyway, I find the reactions of others fairly predictable.

My brother never got help in building “social communication skills.”  He got help with a lot of other things, but they really didn’t know to target the social skills arena in high-functioning Autism thirty years ago.  In fact, they didn’t even know to call it high-functioning Autism thirty years ago.  Not only did my parents struggle with people not believing them, or, at the very least, peoples' continual tendency to minimize my brother’s problems, but they didn’t even have a name that they could call it.

I can tell you that Autism, even high-functioning Autism, doesn’t go away just by waiting long enough.  And I know that “building social communication skills” sounds pretty damn trite compared to what it actually means, but I’ve also seen the repercussions of missing this important piece.  I'm not even entirely sure that it would have made any difference for my brother to get help with "social communication skills."  And I obviously can’t go into all of this in a short blog post, but that’s why I’m putting it in my book.

My brother’s experiences are a blessing for me, in a way, in that whenever I find myself tempted to believe that Isabel doesn’t really need all of this extra help, I find myself haunted by the Lord’s Prayer on my way home from the school.  But they’re also a curse, in a way, because I find myself haunted by the Lord’s Prayer on my way home from the school.  I have learned one gorgeous, valuable, irreplaceable thing though.  I’ve learned how to not be so afraid.  And this isn’t because I’m tough.  It’s because I’m able to tell you about the things that haunt me.  And somehow, when I do this, they lose their power to dominate my decision making.

I guess I put hats on my kids because that’s the kind of mom I want to be.  And I’m grateful for the ability to recognize that this is where my power ends.  The results are then up to God.  And I guess I insist on my daughter getting therapy and going to school because that’s the kind of mom I want to be.  And I’m grateful for the ability to recognize that this is where my power ends.  The results are then up to God.  And when the snow falls, I’m grateful for the ability to trust that it’s just a communication that it’s time for something else - another idea, another tool, or another path.  But sometimes I think I just need to know that someone can be okay with a cold neck.  

I don’t always get to know the reasons for things.  But I, thankfully, don’t have to.  I do quite love not being God.  And I absolutely love living walking distance from the school!