Who is the One with Problems?

One of my favorite films from my youth was Berry Gordy’s The Last Dragon.

Part Bruce Lee spoof, part blacksploitation – the film follows the development of a young man on his journey to become The Dragon Master, defeat his evil nemesis (hysterically named:  Sho`nuff the Shogun of Harlem), and win his sweetheart’s love.

If you didn’t see it, check out the recent Kung-Fu Panda – same film only animated and with lots of cool tie-in merchandise.

The climax of both movies is the moment where the learner discovers the ultimate truth to becoming the Grand Poobah of Kung Fu is simply: to believe in yourself.

It’s an old saw, but: “The journey to the greatest discoveries so often lead you right back to your own doorstep.”

I think too often we fail to accept what we already know to be true when it comes to raising our children. Instead of moving forward and making sensible changes, we keep hanging on like some sort of “thrill of discovery” junkie who simply “cannot believe” that boy has “gone and done it again!”

Take for example a recent episode with our NLD son. In the past month he has made it to school less than forty percent of the time, and even then often arriving very late in the day.

It dawned on me that instead of wondering what’s wrong with him that he isn’t motivated to go; perhaps I should be asking myself a different question. “Should it come as any surprise that a child with a super high IQ and with his sensitivities should be able to pick up on the things about this school that drive us crazy?”

This is not to say that his reason for not going is because he hates the school. Until he opens up we will never know what us going on inside his head. But at least remembering the obvious should make it a whole lot easier to tolerate him and not see him as some sort of “problem.”

Another example:

While he is technically our fourth child, in many ways he has become the eldest in our family and, I believe, is suffering from an inability to place himself in any context.

For the last four years his oldest brother has been at a boarding school and only comes home for a total of eighty days a year; hardly enough time to forge a relationship. Not to mention that our firstborn isn’t the type to place a random call to just schmooze with his siblings.

His next most senior brother is our Asperger boy who, though he is probably unaware of the intensity of his comments, emits such waves of hatred towards him that he cannot possibly be the big brother he craves.

Our eldest is a wonderful daughter, but she is pretty “useless” to a Lego digging, Gameboy loving, Tolkien reading self-proclaimed “geek”. She plays a mean game of Banannagrams, but she’s not going to whip your tail in a lightsaber duel anytime soon.

So is it any wonder he feels lost all the time?

And despite knowing all this, I struggle to keep this information front and center. Instead of a heart overflowing with compassion for the tough life this kid has endured, I find myself trigger ready, set on edge waiting for his next obnoxious comment or refusal to cooperate.

Tackling these thoughts head-on does not seem to work. I know what I am supposed to feel, but all the baggage makes it very hard for the message to sink in.

You know what I really need? My own Mr. Myagi to coach me on accepting this child.

I think I need a thousand: “Make his bed” or “Put treat in lunch” to start softening up those hardened attitudes.

LJ

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

Lets Put That in Writing

So many things in life tend to be a double-edged sword – its all in how you look at it.

I recently stumbled upon an insight that is actually the by-product of a deep seated fear and self-loathing which, now that I think about it, just may be the key to breaking free of some of the unhealthy behavior patterns in our home.

But first, some background history:

I can never forget an eventful dinner in our home shortly after I assumed the position of high school principal. My parents were in town and shared an evening with us and one of the influential couples on our board.  You can write the script for me. If anything could go wrong….

At some point my mother cornered me in the kitchen and asked: “Aren’t you embarrassed to have these people here watching your kids kill each other? How are they supposed to trust you to know what you are doing with their children?”

If I had been more mature, I would have shrugged it off and returned to the mayhem with a song and slight smile dancing across my lips. But as a very insecure, newly-minted professional with people to impress, I took it as a valid question. What is the answer to that one? Who was I fooling? What kind of expert educator can’t get his own children to sit at the table for five minutes? What kind of home is this where nobody has a nice word to say to one another?

I felt naked and exposed, and dove headfirst into a tailspin that had me questioning my whole career path and usefulness to the trade.

Cue an eight-year montage as we fast-forward to last month’s epiphany. Whizzing by us are scenes of unbelievable pain, hurt and anger. Meltdowns that last hours, doors slamming (and breaking) and miles of footage of mom and dad humbly apologizing to teachers and administrators while pledging to keep our child in line so: “it won’t happen again.”

With each mistake, with every heartbreak and disappointment came a ringing reminder that: “You’re no expert. You don’t know what you are doing.” Every trip though the aisles of Barnes and Noble, every new book on Aspergers that I didn’t pick up to read further hammered home the message: “What sort of parent are you anyways?”

It was getting really bad. I felt like running away. I wanted to start all over again. Deep down I wanted to become an expert. No, THE expert; but I just couldn’t see myself as anything but the guy stuck in his habits and poor routines.

One night I was listening to Sportsline and heard an interview with Curt and Shonda Schilling about their son with Aspergers and,….well how about that? They’ve just published a tell-all book. Curt, do you really need this “trophy” to go on your shelf with that famous bloody sock and set of World Series rings?

Don’t get me wrong, I am not begrudging the guy the right to keep his name in the spotlight, but I just know that a guy whose life revolves around a 162 game schedule, has no concept of what I go through every single day. What makes him such an expert any more than me? Because he’s a celebrity?

That is when I decided that my wife and I have got to write a book. On top of everything we’ve had to deal with, we’ve got a perspective shared by a precious few. Most families with ASD children stop having kids once they’ve discovered their lives are about to change. We, on the other hand, took the “road less traveled” and continued to have another four (seven in total).

From the moment I let it slip from my mouth, the most amazing thing happened. I stopped seeing my children from within the trenches. As I explained to my wife: I’ve begun to think of us as scientists who’ve been handed these cases to study and write up reports. At the end of the process there will be a supervisor [G-d] reviewing our performance with the expectation of our uncovering findings to share with the rest of the “scientific” community.

That is all it took. One minute I was hopelessly lost, mired in the daily grind, and the next, vaulted to the heights of professional observer with all the tools I need to Git Er Done. With this small change in perspective I was suddenly able to see just how much I had learned these past fifteen years; how much I had grown through incremental steps.

It was like Pat Morita tapped me on the shoulder and said: “Ahhh but you always knew you were the Dragon Warrior – you just needed to Believe!“

It’s your turn to share: What is your key to maintaining perspective? Where does your confidence come from?

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

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

If You Teach a Boy to Fish…

Some days I wonder if NLD really stands for “Not Learning?…Thanks Dad!”

When your children are handsome, clean cut, really smart, funny and creative, it makes the disconnect between what you think they should be able to do, and what they actually do, all the more stunning. It is not a pleasant thing to say, but when your child is tied to a wheelchair with CP, there really is no temptation to shout: “stop dropping your food on the floor!”

I look into my sons eyes as I repeat the instructions as I have done the day before and the day before and even before that, and I wonder:

Maybe today is the day you will connect yesterday’s “Get dressed, brush your teeth, put on your shoes, come to the table….no, put your baby sister down and take care of yourself first…” with what I am saying .

Maybe tonight when I call him to the table for supper, and he arrives thirty minutes late and flies into a funk because the food is all gone, maybe tonight is the night he will finally learn that he needs to come when called.

Maybe this time around when the book report is assigned, maybe this is the time he will do it on time and not get upset with us when I take away all his games and privileges twenty-four hours before it is due.

I look into those deep brown eyes of his and, like the Looking Glass, I want to fall right into them; to reach into his brain and tie dendrite to dendrite to ensure connections are being made. I so much want to just love him and laugh at the silliness of the whole scene. I want to validate his uniqueness and be accepting of his totality, including his absurd disconnectedness.

But now we are rushed and everyone is late because he is still arguing about some long ago point that the rest of us have moved past, and the tension is rising and the threats are flying and now there is yelling and Iwant to just say STOP! Remember, this boy doesn’t GET IT…but all understanding is lost in the craziness of nine lives converging on a single moment.

He stomps off in a huff of anger, his siblings are shouting at him and slamming doors, my nerves are frazzled and frayed and my stomach is knotted with guilt. It is almost as if his NLD condition is contagious; now nobody in the house is GETTING IT.

WILL EVERYONE PLEASE STOP THIS INSANITY!!!    HELP!!

Whoa…. Hang on a minute…. Time to take a breath….Okay, I’m better.

The good thing about NLD is that, most often, he doesn’t remember these blow-ups. Red Dawn at Morning actually makes for Sailor’s Delight come the Night. Its so weird; almost like he’s got something in his throat that needs coughing up.

Whoops. I would love to continue this post, but I need to go remind him its time to eat (-sigh -).

It’s your turn to share: What is a technique you have found helpful for creating a routine that keeps everyone on task?

LJ

Full Court Stress

Great basketball teams are those who are able to score big points in transition. In the blink on an eye, players make dramatic shifts in positioning and momentum and try to throw the other team out of sync and cause errors in judgment. As the errors compound, frustration builds and yields more mistakes. Two tomahawk slam-dunks later, you can literally see the spirit go out of the defeated players as their egos are battered into submission.

Its not a perfect analogy, but in many ways this is a lot what mornings are like in our home. When you have children on the NLD spectrum as we do, the morning wake-up and get out of the house routine is anything but. From bedroom to classroom there are dozens of transitions that need to be mastered and executed flawlessly.

1. Get out of bed 2. Go to bathroom 3. Freshen up 4. Return to bedroom  5.Take off pajamas  6. Put pajamas back on bed   7. Select clothing to wear (and remember to change undergarments!)   8. Put on clothing    9. Leave bedroom   10. Come down to kitchen   11. Select breakfast food   12. Eat breakfast…..etc.

A non-NLD child is able to string these together and develop a set pattern. Our twelve-year old has not been able to get on track after more than five years of day in, day out scheduling. His morning often looks like this:

1. Get out of bed   2. Go downstairs and bother someone   3. Stomp back upstairs to use bathroom   4. Come back downstairs (still in pajamas…the clock is ticking!)   5. Complains that he doesn’t know what to eat for breakfast 6. Is led back upstairs and directed to take off pajamas and put on clothing   7. Comes downstairs in pajamas to play with favorite toy (tick – tock)   8. Is marched upstairs to change clothing    9. Comes downstairs and can’t remember where sneakers are   10. Carpool arrives and he hasn’t eaten breakfast yet   11. Goes to basement to play with toy (honk honk!)   12. Is hauled upstairs, book bag dumped on shoulder, muffin stuffed in hand and walked out of the door….WHEW.

And the best part is – we get to do this all over again tomorrow. Every day is Groundhog Day - so put your little booties on, cause its cold outside!

If we had one child, it would be challenging enough. Now try doing this with five others to dress, feed, sign homework, pack lunches and still get to work by 9 AM.

The worst part of handling these transitions is watching the frustration build in the child and everyone around them. Back to our basketball team for a moment: At least there are players on the bench who can sub in and put their fresh legs to use to try to turn this thing around. An NLD child drains EVERYONE in the house. It is nothing short of amazing to maintain calm and send each child on their way with a kiss and a smile.

There are probably hundreds of things we can do to make our mornings less stressful. One very helpful tool we’ve gotten good as is to maintain a calm and steady voice. Just like an animal smells when you are scared, the kids all pick up when mommy and daddy are tense and that can derail everyone from their routines.

Let me hear from you: What is your morning “routine” like? What do you find works well? How do you divide your attention between the children to keep the action moving with minimal delays?

Have a less stressful day!

LJ