Private Screening

I have written a few times about the screen addiction issues that dominate a good deal of the interactions with our spectrum boys. On any given day the noise in the home is punctuated with some or all of the following:

The annoying – “Can I play?” (Put on a whinny voice, and remember, the questioner is a child with no sense of boundaries who gets right up in your face and whose breath practically shouts – “Hey! I haven’t brushed my teeth in what? A month now?”)

The banal – “Just five more minutes?”

The manipulative – “I’m almost at the end of the level (Translation – I need another 20-30 minutes)”

And the sure-fire tantrum bomb – “It’s not fair! How come he ALWAYS gets to play?”

If you seek a textbook definition of a love/hate relationship; this is the one.

It would probably make for good reading to compose a laundry list of all the pros and cons of “screen time,” and there are quite a few good points to argue in both directions. For today though, I would like to share one of the most pernicious challenges we face, and bring it to light through a conversation with my 13 year-old NLD son, which in itself tells a cool story too.

On a recent day, out of the blue, he got hung up on the disparity he has seen between himself and his older brother. As he correctly noted, the fifteen year old is pretty much given free reign on the computer. Whereas the other children rarely play during the school week and even then, no more than 45 minutes, he plays every night for an hour and a half.

As is his nature [the thirteen year old], he persisted in asking no less than fifty times, with each iteration his voice dropping more into that monotone that tells us he is slowly melting down.

Because he is hyper-sensitive to anything that smells of criticism, I knew that he would react poorly to my pointing out that his older brother is an exceptional student who has learned to strike a balance between play and getting his work done. While a more sensible child would take this as a challenge to do better so he too could earn this right, an NLD boy hears this as a put-down and that this is “all my fault!”

Here is what I told him instead:

“I am going to share with you some personal information about your brother, and you cannot repeat this to him. This is between you and me. While your brother is very smart, he possesses none of the gifts you have. He doesn’t write stories, he cannot draw, he does not play an instrument and he has a difficult time making friends.

Imagine what your life would be like without these outlets. How would you feel? How would you fill up the time without friends or hobbies?”

He sat quietly and listened as I laid this all out to him. Under normal circumstances I should have left off there and made this a pitch for compassion; but sadly, there has been so much bad blood between them, that I felt I needed to up the ante and really drive home the point. I continued:

“When your life is pretty empty, you have to find things to fill in the gaps or else you will go crazy. And what happens when people go crazy? They lash out and hurt people. The computer is your brother’s drug – its what keeps him from whupping the daylights out of you. You may not like it, and really, neither do we, but if he doesn’t have this, he will turn on you in a second and then your life will really be miserable.”

Amazingly, he got it. Since that conversation he has not shared this information with his brother (significant for someone with poor impulse control) and he bought into the concept that the computer is for his brother what Adderall is to him – a tool to assist in maintaining balance and focus.

Beyond this insightful moment is the very real challenge we face dealing with this “drug” addiction. He [the fifteen year old] has such a narrow focus of interests and no hobbies  that it makes it very hard to fight giving in. On the other hand, if it is an addiction, shouldn’t we be doing more to help him overcome it and discover hidden talents (he’s got to have them)?

For another conversation.

Its Your Turn to Share: How do you deal with sibling rivalry? What works best in your home?

LJ

SPED-dar

Note: My usage of some common pejorative terms is likely to offend readers. If you can think of a more delicate way to put it, please let me know.

It is probably safe to assume that most everyone has heard of Gay-dar.

MOT (Members of the Tribe) are fond of their J (Jewish) dar ; especially when it comes to ferreting out celebrities (contrary to common assumptions, Harrison Ford and Billy Joel are still unconfirmed by those in the know).

I recently discovered that my fifteen year old Asperger son has a highly refined SPED-dar. What on earth is that, you wonder?

SPEDs  is the offensive nickname given to those children who require SPecial ED modifications. (While totally unproven, I suspect this may have been the precursor to the even more disgusting SPAZZ moniker which, yours truly once wore with a mixture of aplomb and shame.)

“Birds of a feather flock together,”  or so you would think. While he is not the only boy in his grade with EQ deficits, and not even the only one who legitimately falls in the syndrome, he will not associate with these kids, not even so much as to speak with them. One of the boys happens to also be an avid Runescape player, yet despite this, my son has no interest in befriending him. Wow! That has gotta hurt when even your online avatar is weird.

I don’t believe this is an act of snobbishness, but an interesting statement about his ability to quantify different levels of normalcy and choose something that closest represents himself.

His self-proclaimed best friend is a wonderful young man who is not spectrumized, but who shares his common love of Calvin and Hobbes, Medieval fantasy genre books (the bloodier the better) and Sudoku.

I know what you are thinking- Yup, they’re Nerds.

Because spectrum kids come in all flavors and colors I can’t generalize from his specific world view, but I have learned from observing him that he has a pretty solid sense of who he is and who other people are. He may still see people as “objects” or “things,” but he understands that there are subtle differences. He knows who is cool and who is not, and is able to place himself somewhere in the middle and select his friends from among the group slightly to the right of himself.

What I find even more interesting is the way he responds to questions about his choices. I have inquired many times why he doesn’t reach out to those boys, especially the Runescape kid who obviously shares one of his passions. He will never say anything negative, only sigh, shrug his shoulders and offer a: “well, you know.” Which is not to say that he doesn’t know how to criticize – just ask his younger brother.

It might be that sensing something is off with them makes him uncomfortable with himself. I don’t really know because he doesn’t offer to explain.

Its your turn to share: With all the talk about poor Theory of Mind, have you too noticed that your child can classify and discriminate between different groups of people?

LJ

Stinkin Thinkin – First shots

Alcoholics have this term for describing totally illogical thought processes; its called Stinkin Thinkin. While it shows itself with many different faces, they are all a variety of the following simple example:

Its hot outside, I’ve got new clothes on… sound like a good time for a drink!

You have never seen the depth of illogical thinking until you’ve spent a night under the same roof with an NLD or AS child. I must note that they aren’t exactly the same challenge, as will be seen shortly. To be fair too, they do operate on a logic system that makes perfect sense to them, but it is absolutely maddening to everyone else. As an aside, for those out there who are scientifically inclined, it might make for some fascinating research to examine PET scans of alcoholics and Asperger brains to look for similar patterns.

I’d like to give you a glimpse into what its like under that roof. These next two posts will be divided into chapters (or shots…I can’t resist) with the first demonstrating how an NLD child thinks and the second, our Asperger boy.

Exhibit A

Who doesn’t love a good story? Apparently, not someone with an NLD. While driving my sons carpool on Friday I told over the beautiful act of humanity demonstrated by Detroit pitcher Armando Galarraga who, just one day after being robbed from the record books, had the courage to shake hands with the umpire who blew the call and give him a gentle pat on the shoulder.

My son couldn’t understand why I felt this was important. Knowing that he doesn’t understand the finer points of the game, I explained how some pitchers perform well for their whole career, yet never enter the Hall of Fame, whereas the perfect gamer might post the worst record ever and still be enshrined for this one deed. This was a big deal to lose out, and an even bigger deal to have dealt with it “like a man.”

He: “No it wasn’t” he retorted. “Its baseball and baseball is stupid.”

Me: “Well, yes, that might be your opinion about the game, but this isn’t a story about baseball, its about someone doing the right thing.”

He: “Aren’t there plenty of other examples out there that don’t have to do with baseball that you could have chosen from? Why did you have to waste our time with baseball?!”

Beg your pardon?

I have this vague recollection of a short story I read in fourth grade about a boy whose grandfather’s obstinacy was so compelling, he actually had the ability to will things into non-existence because they simply couldn’t possibly be. They had to tread real carefully around him lest he issue a challenge that would cause a global disaster. Those are the same kid gloves you need to wear talking to someone who really, truly, honestly…doesn’t get it.

Exhibit B

Imagine that tomorrow is Monday and you have a book report due. Actually, it was due four days ago but you never remembered to tell your parents about it and never once brought the book home; conveniently forgetting it in your locker, under a desk, on the playground, etc.

Mom and dad are not pleased and so they ground you from all electronic forms of stimulation until the job gets done.  You respond by:

A) Buckling down and grinding it out the rest of the afternoon, not resting until its done

B) Dividing up the day so as to work on it in intervals so you can take breaks and still have fun, but get it done in the end

C) Throw a fit, complain how much work you get, blame your parents for taking everything away from you, cry, slam doors, cry some more, complain how much work you get, taunt your other siblings, throw things around to make sure your parents are really angry, finally cave in around 7 PM after wasting NINE HOURS and knock the stupid thing off in under two hours…but then throw a fit when you learn that its now too late to play on the screens as much as you had hoped, and then blame your parents for being so mean and unfair?

Nuff said.

To be continued…

LJ

Mother of all Meltdowns

It has now been about a month and a half since IT happened. We’ve had bad experiences before but this was the first time I seriously considered calling 911 for help. I’ve never seen anyone have a nervous breakdown, but I cannot imagine it being far off from our MELTDOWN.

IT began as most things in our home do, as a small incident that most kids would have shrugged off. I don’t really know who started IT and can’t remember if IT was a push, a nasty comment, an annoying noise – whatever IT was; our twelve year old stormed over to the table where we were dining with guests and demanded that we put a stop to IT. We’ve become very focused on helping him disengage from sticky situations before they escalate out of control, so we invited him to join us at the table where his talents would be appreciated by the adults.

I must have blinked because in an instant he was gone again, somewhere in the house, up to no good.

Moments later the happy banter at the table came to a crashing halt as the kitchen exploded with violence. Hidden from view we could only surmise what was transpiring.  We let a full thirty-seconds of punching, screaming and general pandemonium pass by before launching an intervention. A helpful rule of thumb in homes like ours is: “no reaction till blood flows.”

You can never know who threw the first punch, so when in doubt, you always go for the one who was “out of place;” the one who had been told to keep away but, like a fly to vomit, couldn’t hold themselves back.  As I smiled weakly to our guests my wife dragged the twelve year-old kicking and screaming up to his room for a lengthy time-out.

No sooner had she closed the door than his bedroom exploded. We could hear him knocking over bookcases and shredding sheets from his bed as he howled in fury. With a final nod to our company I muttered: “I guess there really isn’t ever a good time to lose your mind,” and hustled off to see what was left to salvage.

I found him in a pile on the floor hyperventilating to the point that I was really scared he was going to stop breathing altogether. His glasses lay in a twisted heap of metal and cracked plastic; an early victim of his rage. A quick survey told me that this was the worst of the damage, save for this poor young man who was writhing uncontrollably, practically seizing with misery.

I held him in my arms for thirty-minutes while he calmed down. As is typical for him, he was unable to see his role in any of this. He kept wailing that nobody loves him, that he is always to blame and that we never punish his older brother for making him so angry in the first place that he has to punch him.

I was really, really scared. Scared that we might need to call an ambulance, scared that he had completely lost his mind, scared that I was to blame for not getting him serious, deep help long ago. I know the worst thing you can do for your child is treat them as if under the watchful eye of the neighbors, but this might be one allowable exception – I am worried what they might think if we didn’t do SOMETHING. Yes, we are turning the wheels to get him and the whole family into some serious therapy.

As we were calming down together I planted a seed in his head which as yet has not shown signs of taking root. I tried to validate how hard it has been for him to live with an older brother who has such a difficult time being nice to him. I almost went as far as to mention the Asperger word, but as we have not yet revealed that to the fourteen year-old, I witheld myself from doing so. I often say about this younger son that as much as he has issues of his own from his NLD, he is also likely suffering from PTSD.  

Its your turn to share: What was your scariest moment with your AS or NLD child? How did it turn out?

LJ

Blockhead!

Our fourteen year old has a problem. Well, many really – but of recent concern is his vast, but now useless Lego empire.

For the better part of the past ten years, every dollar, every ounce of birthday money has been poured into building a one-of-a-kind collection of Star Wars vehicles, Harry Potter play-sets, castles and space-age vehicles cast in those ubiquitous plastic bricks.

Its not an exaggeration to say that an entire room of our home has become a  shrine for his completed pieces and many of the colorful boxes they came in. He wont touch them anymore, nor does he let anyone else get within ten feet of the room – especially siblings. I don’t think he even sits in the room and looks at them with any warm feelings. It is really tragic and weird.

One of the saddest moments in a parent’s life is that day your boy packs up his Legos and trades them in for… well, you fill in the blank. Up go the muscle car pics, the SI spreads and glowing homages to the guitar gods, and away goes the innocence and simplicity of youth.

We watched our eldest NT child make this transition with grace and class. Thanks to his generous spirit and big heart, his room has become a cherished goldmine where younger siblings spend hours sifting, analyzing and claiming new treasures to add to their own hoards.

Not so for our AS son. He has constructed an intricate series of rules and laws about who may touch his Legos and who has been forever banned, it rivals the US Tax Code in complexity. And don’t even bother to engage him in a discussion about what to do with this collection unless you want to relive the Passion (Gibson version).  His mind is so limited by these rules that he simply cannot see a way out. Try this on for size:

Dad: “You could just give them away to your brothers. That would be a nice thing to do”

Son: “They are not touching my stuff. NEVER. And they might break or lose them and I would be angry.”

Dad: “Well then, why don’t you sell them to your brothers at a discounted price? At least you will have gotten paid for them and might not care so much?”

Son: “No, I don’t want their grubby hands on my stuff.”

Dad: “Why don’t we put an ad in the local penny-paper and let some other boy enjoy them?”

Son: “Because I am not sure I would get the best price.”

And so on.  I am not saying he is being completely unreasonable. There is logic to some of what he says. The problem here is a total lack of creativity and willingness to look at all the possibilities and maybe stitch together a composite idea that would satisfy his needs. We know that if left to his own, these Legos will still be sitting on their shelves long after he has moved out of the house and into his own place (please G-d, one day).

There is stubborn, and then there is Aspergers. We want to teach him how to problem solve on his own, but we also want this stuff gone so the room can be useful again.

Its your turn to share: How long to we let him try to work this out before we step in and make a decision for him?

LJ

Keep Your Eye on the Ball

Some people see life like a connect-the-dots picture. Before they begin they have a pretty good idea what the result will look like, they only need to follow the numbers to reach an anti-climactic finish. Neat, boring and predictable, unless you choose to draw crazy lines and break the rules.

Life has never been so simple for me. When I put crayon to paper I never know what the end result will be. I think I know what I am aiming at, but somehow seem to take a hundred invisible detours and arrive at a very different destination.

For example: Returning to school after the summer I turned 16, I discovered that my best friend had spiffed up his look with a host of preppy new clothes. He looked very collegiate , back when a bottle of brew and a hangover weren’t the “in” thing. Everyone, especially the girls,  were taking notice.

No self-respecting, hormonal sixteen year old would let such a territorial challenge go unanswered, so I schemed a way to lure my mother to the mall, credit card in hand, to put her boy back at the top of the heap. And this is where things got interesting.

I knew clearly what I was looking for: Plaid shirts, khaki pants, a rope belt, maybe a knitted tie or two and Docksiders (ugh, sounds so nerdy, but this was the Eighties). When the shopping day drew to a close and our credit line out of steam, what I walked away with was this:

Two pairs of gray parachute pants (complete with zippers to nowhere – thanks MJ!), several large, bulky cable-knit sweaters (one, a bright shade of fuchsia), a red paisley print shirt two sizes too large, and a dark-red sleeveless, mesh-knit “hunk” shirt.  No, I am not gay.

I was aiming for Michael J. Fox….

 

 

 

 

 

 

 

 

 

….and came out looking like Howard Jones!

 

 

 

 

 

 

 

 

Whoa whoa! whoah, whoah.. whoah… whoah…whoah…things can only get….better?

Frankly, I never did. Career, marriage, family, you name it; what I’ve got today bears no resemblance to the mental picture I was working with. Oh, I am not at all upset with how things turned out. I love my wife and kids (and sometimes, career), but it comes at a price of always looking back and wondering: “how the heck did I get here?”

With time, the micro-changes and small adjustments become clear. There has always been a pattern of thinking differently and looking at something for what it could be rather than what it is. My sense of taste and style are not contemporary…I am just not sure from what epoch they arise.

While there are many advantages to living an “Apple life,”  having insight that is light years ahead of the pack can doom you to a life of irrelevance if you cannot integrate that with what is current. Like the saying goes, the difference between Genius and Eccentric is a few million dollars.

Perhaps we could say that the difference between Eccentric and Aspergers is flexibility or lack thereof? We share common fantasies and an innate sense of justice and fairness, but while I can negotiate what is with what isn’t, he literally cannot imagine any vision other than the one in his head.

Its your turn to share: When is normal not normal anymore?

LJ

Out of My Mind

In an earlier post I shared my personal theory about where Autistic children come from. It’s not the environment, it’s not vaccines, its not the economy stupid…its you.

Why this should come as a surprise to anyone is a real mystery to me. Nobody (let’s leave Trial Lawyers out of this) blames cell phones when they have a Down’s Syndrome child, nobody points a finger at acid rain and puts Dow Chemical in a choke-hold if their child in unable to see or hear, so why the urgency to play the blame game with this one?

Maybe it’s because the disability is so secretive – there are no misshapen body parts, no cranial implants, no tapping canes and dark glasses. Perhaps there is a sense of embarrassment, a need to explain why this perfectly normal looking, handsome young person is fascinated by grammatical rules and the periodic table. Nerds are supposed to look like nerds.

Its true that there is ongoing research that points to certain environmental factors such as “white noise” (see the amazing book titled The Brain that Changes Itself – by Norman Doidge M.D.) that may damage the initial wiring of the brain, but I think to leave out a genetic component is to do a real disservice to the child and the parent caretaker.

In my own circle I have noticed a progression of sorts, what I call Shadow Traits, that point the way to producing an Autistic child. Parents who are obsessive compulsive, right-brain thinkers, prone to sensory integration issues and hyperactive seem to be the most likely candidates. I don’t know in what proportion the mix must be, or if that matters. What I do know is that you don’t need to look too closely at mom and dad to find them; its pretty obvious to most everyone.

Just looking at my own crazy “shtick” is proof enough of this point. Don’t touch me with wet hands, leave my desk exactly the way you found it, sit me down if you really want me to focus on what you are saying, don’t send me shopping without a list because I’ll get lost in the islands of pretty colors and packaging (la la la), and by all means, don’t fry fish within ten hours of my coming home!

We all know people like this. Smart, busy, sensitive to touch and wildly creative – almost to the point of “marching to their own drummer,” but not quite. Over and over again, I am hardly surprised to discover that they have a child who falls smack in the syndrome.

While I do not have Aspergers, I have no problem taking ownership for the traits that would one day give rise to not one, but two boys with those characteristics. This doesn’t make handling the daily episodes of groaning, head-banging and illogical tantrums any easier, but it does allow me to develop a better emotional bond with them, and find the patience to give them as much love and attention as possible.

Autism can be hell, but so can ostensibly “normal” children. In a certain sense, I see my boys as a real gift because they have taught me so much about myself, far more than I would every have learned from a wind-up-and-go family.

Its your turn to share: How do you handle life’s setbacks? Are they obstacles to go around or mountains of opportunity?

LJ

Mindful Matters

Think about this mind-blower for a moment: Chances are, as you are reading this post with your eyes, you are also “hearing” an internal narrator project words in your head. If you are lucky the voice you will hear is your own. If you aren’t so lucky, she might sound like that annoying woman who lives in my GPS.

While not universal, I think the majority of people on the planet think in this manner. Some might see pictures flash in their head, Daniel Tammet sees colors, but more or less we interpret our world experiences through some conversion process. You can call it a stream of consciousness or an internal dialogue if you like, although I am not certain this is exactly the same thing.

Ever wonder how an infant learns anything without the tool of language? Like, when they see a banana for the first time, how do they comprehend what they are looking at? How is intelligence formed in the absence of this most basic building block? It freaks me out just thinking about it.

The concepts of time and space do not seem to be instinctive to the human mind either. I remember learning the reason why an infant cries when its mother steps out of the room: It does not yet comprehend where she has gone and is gripped with fear that she may never return. Out of sight isn’t out of mind – it’s just gone. Only with repetition is it learned that things are not so concrete as they initially appear.

Now imagine if you will, being born as a fully-grown teen, yet with an infant mind. You think watching a Friday the 13th film-marathon is scary? Think of the 24/7 horror of walking the halls of school desperately trying to make sense of what is happening. You have no comprehension of the concepts of cause and effect, no context to understand speech and language, body cues are a complete mystery and you are totally overwhelmed by the seemingly limitless smells and senses coming at you from every direction.

Everyone on the Asperger ice-cream truck experiences this to some degree, each according to their own flavor. (Our house is clearly Rocky Road or Triple Nut Job)

It’s probably one reason why these kids seem to gravitate towards science fiction and fantasy. They can  really relate with the experience of the fallen alien stumbling out of his capsule or the renegade, misunderstood Dark Elf who lives a life of self-imposed exile.

In the technical mumbo jumbo this is called: “lacking a Theory of Mind” and it is more than just going through life with blinders on. If men are from Mars and women from Venus, then Aspergers are from a completely different solar system. It is easy to think they are just being stubborn, stupid or not paying attention. It’s not that at all – their brains are hardwired to see the world a particular way and they cannot imagine how anyone could possibly see it differently.

Tim Page’s latest book about his own experience as an Aspergian features this gem from director and vogue-meister John Waters. In his approbation, John wistfully observes that: “I wish I had a touch of Aspergers in me.” Ha! Could’ve fooled me John. Anyone who knows the weird world view of John Waters can readily appreciate what life looks like through the lenses of someone on the spectrum.

Stay tuned for more on this topic in an upcoming post called: Out of My Mind

Its your turn to share: Have you ever had an out of place experience where you just couldn’t make sense of what was going on? How did you feel and what did you do to compensate or correct that feeling?