From the Mouths of Babes

The piece that follows was written by my 12 year old who has a NLD. The ironically titled: “I Get It” is a beautiful illustration of how he doesn’t get it. He cannot admit fault when there is a perceived lack of fairness. It never occurs to him that the problem here is a very self-centered point of view.

A little context: He was caught skipping gym on Monday (“That is not called cutting class! Gym isn’t a class!!!) and was given an assignment to pinpoint three key areas.

1) Which of the school’s core values he failed to follow. 2) What he would have done differently (the rewind button). 3) What he has learned for the future.

There was a momentary debate whether to let him turn this in or not, but my wife and I felt it beneficial for the administration to understand just what we are dealing with. (The Dean of Students let me know that she laughed so hard, she could be heard across the building.)

Its so brutally honest and snarky – this is what life with him is like, each and every day. Enjoy.

‘I GET IT’ ASSSIGNMENT

I did not display the value of responsibility because I was not where I was supposed to be. Instead I was sitting on a rock not thirty feet away from around eight other kids who were playing football in the baseball field without a teacher. It is important that I am responsible because it is very dangerous to be within the grounds of a school that has proofed its security in past years.

If I had a rewind button and I could go back, I would not go into the building to check on the time because that is how I got caught. Or I would just stay near those other kids who were playing football without a teacher. Or I would go to the gym and be so bored I would probably faint and cost the school hundreds of dollars in medical bills. Or I would go in the building through a different door so I wouldn’t get caught. Or I would run  away so I cant get caught and get in trouble.

I would improve by not going in to the building so I wouldn’t get caught. Or I would improve by trying to do something during gym and be kicked out of every game because I don’t usually play sports. Or I could try to write or draw during gym and have all the noise crowd my brain and leave no room for ideas. Or I would just hang out with the other kids who don’t do what they’re supposed to be doing and not get caught because all the trouble revolves around me; right?! If I work on this value, I would be able to do all the wonderful things in paragraph 2.

Funny? Tragic? Rude?

Your thoughts….

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

Can We Talk?

Remember what you were doing when you heard JFK was shot? Where you were when Elvis died? How about the first time you heard the term “Active Listening?”

What? You don’t think that last one belongs on the list? Try doing a Google search for each term and you get these results: Elvis – 5.3 million, JFK – 12.8 million, Active Listening…… a whopping 24.8 million hits. We love our celebrities, but we love ourselves even more.

If you happen to have been on assignment living among the Aborigines for the past ten years, active listening is what people before the technology revolution called…listening. In other words, paying attention to someone and not checking your Blackberry at every pause in the conversation to see who else is interested in hearing your brilliant thoughts.

Active listening requires mastery of certain key phrases, sounds and gestures aimed at getting the point across that: “I feel your pain.” Some Earth-shattering tips for success are:

Look at the person when they are talking.

Nod your head and say: “Uh huh.”

Make sure your body language communicates interest.

Occasionally ask for clarity with phrases like: “So what I am hearing you say is…is that correct?”

If this doesn’t strike you as odd, mechanical and somewhat disingenuous, chances are you have already been through a course on conflict-resolution or are a lawyer or politician.  I am not denying that it works. It is maddening how well it works when done naturally. But watch a new parent put it to work and you’ve got an afternoon of low-cost  comedy:

[Cue the scene - Child throwing a tantrum in the store]

Mom: “Oh my, you are feeling angry!”

Child: “Waaaaaaaa! Give me ice-cream!

Mom: “So what you are saying is that you want ice-cream. Is that right?”

I am not making this up.

The effectiveness of active listening is built on two assumptions:

One – That the person doing the speaking has an ego.

Two – That the speaker possesses enough insight and is communicating as a means of better clarifying their feelings, thoughts and emotions.

Uh oh. That spells trouble for Aspies and NLD children.

Boy does it ever.

Take, for example, this recent incident.

Our Asperger son caught his NLD brother (sigh, again) reading one of HIS books without permission. He angrily erupted spewing verbal insults aplenty (see the piece titled “Mr. T”) which culminated with a few punches thrown. Ding Ding! Round over – everyone to their corner for a time out. Here is how the conversation went:

Dad: “He must have made you really mad to go and hit him.”

Son: [Stares murderously at his feet]

Dad: “So you’re pretty angry huh?”

Son: “He took my book….AGAIN!”

Dad: “And that makes you angry?”

Son: “He took my book!….Don’t you get it?”

Dad: “Am I understanding correctly then: He took your book so you hit him?”

Son: “He took my book!…He deserved it!”

Dad: “So people who take other people’s things deserve to be hurt physically? Is that right?”

Son: “Dad, you don’t UNDERSTAND! He always takes my books!”

Dad: “I understand that he always takes your things and that makes you feel angry. Does that mean he should be hit for doing that?”

Son: “The next time he takes a book of mine, I am going to smash one of his Lego sets and lock him out of the house.” [Son sulks away leaving the conversation unresolved.]

He really doesn’t get it. No amount of empathy, logic or role-playing will make him understand the imbalance in this equation.

He’s not psychotic and he’s not stupid. He is just super-zoned into his own world, his own thoughts and his own pain. When he talks, his ears close down and his mouth opens up.

We’ve seen the truth in what the books say:  To create a learning moment you need to let the emotions dissipate, and then give firm, direct instruction for the future. It’s not exactly what we would call a meaningful conversation, but that’s how it goes. If we look for the same kind of connection we have with our other children, we are just going to walk away hurt and disappointed.

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

Mr. T

Most people are familiar with the phenomenon that a camera can add between ten to fifteen pounds. Far fewer know that it can also stretch (or shrink) five to ten inches on/off your frame.

Adulthood has been mostly about overturning treasured myths and fantasies from my youth. One of the more shocking revelations was learning that neither Rocky Balboa nor Clubber Lang broke the five-foot-ten barrier (Stallone is maybe 5′ 8 after a spinal adjustment).

Through clever manipulation of angles and specially designed elevator shoes, these Hobbits were turned into towering icons of good and evil. When Rocky looks up into T’s menacing face, it might have been the one real moment in that 120-minute fairy-tale.

Lately, our home has been resembling a boxing ring with some serious pummeling going on that leaves mom and dad feeling TKO’d as they crawl into bed following each exhausting day.

The change was slow to come and was picked up first by my parents back in August. Parental visits have become the litmus test for how well we are coping with the situation. After a few years of: “We had the best time ever! Can’t wait to come back’s!”, the last trip earned us a “see me” on the report card. Our Aspie boy’s new-found love for recreational criticism and overall negativity was an unavoidable feature that plagued the visit.

It wasn’t until a few nights ago that I hit on what is going on. Our two boys were in their beds and talking with me when the younger asked me if I thought a young piano prodigy (a girl!) who he discovered on You Tube was Jewish. Both their faces blushed and a light went off in my head. Welcome to puberty!

If you think cameras distort reality, wait until you see a teenage brain on Testosterone. It all makes sense. He is hoping out of his mind with synapses firing like they’ve never done before. He is scared, overwhelmed (more than usual) and just trying to put everything back to normal. And he is doing it in a uniquely aggressive, Aspie-way. That he is ripping others down to size for walking the wrong way, chewing too loudly or just plain being in same the room is of little consequence to him.

Friday I sat him down for our first “Man-talk” to explain what is going on with him and what is likely to come. I think he was moderately interested. I told that while we understand what he is experiencing and will be supportive, he must understand that we will not permit him to steamroll his siblings in the process. We reached an uneasy pact that has held up for the last couple of days. Might it be time to reinstate time-out for this one? We will see.

For now, “I Pity Da Fool” that gets in his way!

Its your turn to share: What are some of the big puberty pitfalls to watch out for with an Asperger child?

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?

If I Had a Hammer

There is this great story that seems to make its way into every motivational speakers’ repertoire. It goes something like this:

I once met a plumber who had nothing more than a hammer dangling from his tool belt. I asked him: “Friend, where are the rest of your tools?” To which he replied: “Every problem I see requires only a hammer to fix.”

Whether you sell vacuum parts, build houses or practice Reki you run the risk of developing a condition known as “occupational psychosis.” Suddenly for every problem there is a simple solution, and that is: “Plastics, Ben.” Or whatever.

One can say that raising children on the spectrum has a similar pitfall. When you eat, breath, drink and sleep Aspergers, you quickly come to the conclusion that EVERYONE has AS to one degree or another.

I recently found myself doing it again while attending a back to school night. I was talking with a friend about his children and he confided that one of his boys shuns public activity, preferring instead to play with his Legos alone in the basement. It must have been the words “alone” and “Lego” that rang the Pavlovian bell for me. I launched into a series of probing questions certain that at the end of the line I would find yet another closet Asperger boy just waiting to be unmasked. What else could it be?

While it was relatively easy to catch myself playing Dr. Aspie in this setting, I worry that I may not be so adept at turning off the Aspi-adar at home.

Am I treating my non-AS children as if they too were on the spectrum? Is that why we allowed our “no computer during on school nights” policy drift into oblivion? Is that why our kids eat only four or five things that are not pizza and hotdogs? Is this why they are so brazen and shout us down whenever we say something that runs contrary to their wishes?

Now, it may be that they behave in this manner as a reflection of what they learned from their two spectrum sibs; but are we unwittingly reinforcing this by unconsciously treating them similar to their AS brothers? How do you pull back from the AS Zone and communicate like NT do?

Its your turn to share: Its one thing to make sure your challenging child doesn’t monopolize your time, how do you make sure they don’t monopolize your brain?

A Wine-ing Attitude

Despite their proclivity to obsess and hyper-focus, AS children do not always act in a predictable manner. Friday night we witnessed one of the strangest and most bizarre behaviors and are still puzzling out all the implications.

We were sitting around the dinner table and our AS son was in a particularly agitated mood. He has taken lately to criticizing every movement his siblings make that does not meet with his approval. Nature abhors a vacuum, and in our family this means that everything must be commented on – no silence allowed.

I don’t remember if he was upset with something someone said, if he was upset that once again he needed to “rescue” his baby sister from his younger brother (adeptly done by slugging him, all the while holding onto the baby – how’s that for safety conscious?) or if he was just being plain ornery. Whatever the case, the nasty zingers were flying out of both sides of his mouth at breakneck speed and I knew in my gut that if no intervention was made the situation was going to go nuclear very quickly.

It is so incredibly difficult to weigh the proper response for situations like these. The other children deserve to see their parents standing up for them, but how to do that without making a spectacle and embarrassing the offender whose wiring is shorting out to the point that he is no longer aware that his behavior is only ratcheting up his emotional meltdown?

Because he is so verbal, we typically fall into the trap of thinking that explaining to him why he must stop will get him to pause long enough to reset. On goes the professorial cap, and out rolls an intensely logical dissection of what he is doing and the harm this causes the family. This of course never works and only increases his aggravation and hostility.

On really bad days we combine the lecture with a fair amount of righteous indignation, especially when we are tired and just at the bottom of our barrel. And that is what happened this time.

“WHEN WILL YOU FIGURE OUT THAT YOU ARE TEACHING THEM THE VERY SAME BEHAVIORS THAT YOU ARE RAILING ABOUT?”

Oh boy. Good job dad at showing your son how adults communicate.

So he sat there as he does when he is being criticized, with a completely blank look on his face. A look that says: “If I say nothing, they will just vanish into thin air.”

And then, he reaches over to the wine decanter in the middle of the table, pours himself a glass and begins to drink. This is the same boy who will not eat his muffins if they are heated on a napkin instead of a paper towel. The boy who has not tasted bread, pizza, chicken or pasta in nine years; and somehow manages to chug down a big swig of wine (an expensive Cabernet, mind you) in one gulp. Weird.

What was he trying to do? Self-medicate? Be defiant?

Was this his way of letting us know that: “I am an adult and I don’t have to listen to you? (he is all of fourteen).”

We were frozen into stunned silence and, thank G-d, both of us came upon the same reaction right away. We said nothing and did nothing except to remove the goblet when he got up to sulk away. We just moved the conversation on to something else. Later, when comparing notes, we both agreed that it was best to not give him any satisfaction from whatever this was about.

Who knows? Maybe the wine will help unlock his taste-buds and the next time we sit down to eat he will grab a plate of Fettuccine to go with it?

Its your turn to share: What do you think was going through his head? How would you have handled the situation?

LJ

Madam Im adaM

Our eldest son and HD Blue Ray both promise “A Totally Immersive Viewing Experience.” He sits close to the screen, turns the sound up, darkens the room and for the next two hours, don’t you even dare talk to him!

He is so intense that when the family rents a film he is hot to see, he no longer sits with us, preferring to view it separately, later in his room. He says that the silly questions and comments his siblings make interfere with the whole fantasy experience.  “I want to believe that what I am watching is true and real,” he once confided to me. I don’t think he even stops for bathroom breaks. Now that is dedication!

While I don’t share his ability to get that lost in a film, I am guilty of a lot of counter-transferrence of a different sort.  Dazzling special effects and eye-popping visuals are far less important that the authenticity of the characters and tightness of the plot. If I can’t see myself struggling alongside them, if I think the climax is wrapped up a little too neatly, if I think the dialogue is a little too perfect I lose interest. I’m not interested in a Disney-like finish where everything comes out nice with a cherry on top (but I do have a special place in my heart for the first Pirates of the Carribean film.)

That is why I am somewhat hesitant about rushing out to see the new Adam film which opens next week in Baltimore.  Nobody said it more brilliantly than Robert Downey Jr. in Tropic Thunder: “You never go all-out Retard!” Right-on brother! Its a matter of picking the right hue to portray a genuine AS person and I really hope they get it right.

Just a few thoughts based on the trailer and an interview I heard on Fresh Air with the writer/director Max Mayer (Follow this link to listen)www.npr.org/templates/story/story.php?storyId=111732938

1. I am keenly interested in the setting because I wonder all the time just how my son will date, fall in love and marry, if ever. If they can keep the focus on the couple and not let it devolve into another sappy romance: “But daddy! I love him!” sort of thing which pits Gen-Y values against the old “you can’t possibly be happy” mantra; maybe we will walk away having learned something valuable.

2. It is understandable that Adam should be the hero of the film, but selfishly, I wish they wouldn’t have killed off the parent right away so more attention could be paid to the hero who got his son to the point of independent living. The most likely character for me to identify with doesn’t even survive the first box of Raisinettes. Thanks a lot!

3. How will the audience connect with Adam? Will we see how deeply emotional AS individuals truly are, and how they struggle to connect the right response with the right context? Or will we fall in love with Adam because we find his outrageous behavior to be so endearing?

4. Will people seeing this film feel better about letting their daughter date my son or will they smile, shed a tear and say NIMBY?

Its your turn to share:

LJ