Old School

My brothers love to tell over a memory of a time they went shopping with our grandpa.

Important note: Grandpa was a larger than life person who projected an image of power and success in every aspect of his life – even though we found out later much of it was a complete show.

Strolling into the Toys R Us like he owned the place, Grandpa’s booming voice let it be known to everyone that: “Grandpa was here with his twins to treat em to something special.”

With a majestic sweep of the arm, Grandpa announced:

“Go ahead boys! Pick out whatever you like!”

Spying a goofy, acne-faced clerk, Grandpa quickly pulled him in with a firm arm around the shoulder and said, in his version of a whisper:

“Anything ten dollars or less.”

Our schools have a lot in common with Grandpa.

In their advertising and public messages they proudly proclaim:

We are…

“The school whose mission is helping each individual student shine and bring out their unique qualities and strengths.”

“A warm, friendly place that captures the family spirit.”

And when you’re out of earshot, they whisper conspiratorially:

“Provided you do exactly what we say, love sports and don’t challenge our teachers.”

Any wonder why I hate paying tuition?

I was hoping that at least some common sense would prevail in the administration of the camp where our NLD son has attended the past two years – a camp that is operated by his school during the summer months.

I guess I’ve also got a learning disability – I’m stupidly optimistic.

It’s essentially a day-camp, but to give it more of a “real” camp feel, they offer an end-of-session “big trip” to some exotic locale or activity. This year the boys were given choices to decide between tubing down the Potomac, horseback riding OR (or so our NLD son told us) bike riding.

Did I mention that at age thirteen, he still does not know how to ride a bike?

Whether by design, freak accident or just plain old weariness on our part, we never saw the official camp statement that gave all the details of the trip. I should have been a bit suspicious when, two days before the big trip, our son asked where to find one of the family bikes. I should not have accepted his lame explanation that: “my counselor told me that even if I don’t plan on riding a bike, I need to bring one along anyways.”

Did I mention that at age thirteen, he still does not know how to ride a bike?

Just checking.

It was a combination of many things that allowed me to believe our horseback riding son would be hunky-dory dragging his flat, rusty ill-fitting bike along for the ride. It’ll just sit on the bus and he can walk if he so pleases – right?

So maybe I shouldn’t have been too surprised when I arrived to pick him up around 11 PM that night and was confronted by an irate head counselor.

“Did you know your son had no intention to ride a bike?” He shouted.

“I was under the impression that his activity of choice was horseback riding,” I replied.

“Well, didn’t you read the notice we sent home?” A vein now clearly visible on his face as he took on a slightly deeper shade of red. “It stated that all boys would need to ride their bikes back to the buses!  That’s why we insisted they bring them along.”

“I don’t recall seeing a notice, and anyways, my son told us his counselor requested he bring it even if he was not planning on riding.” Now I was getting angry. What kind of grand trip is this where you have to bike ride? What if a camper was wheelchair bound? Aren’t there laws against that?

Did I mention that at age thirteen, he still does not know how to ride a bike?

Oh yeah, I did.

I didn’t want to get into a shouting match late at night, so I left it at that.

The following evening I needed to leave a message for the head counselor about another matter, and here is how I began:

“Thanks again for another great summer (Hey, this is our second time around with you. Don’t you remember a similar incident and my explaining to you about his communication deficits?). With G-d’s help, I’d like to make the time to sit down so I can share with you the challenges of raising children with emotional and learning handicaps (unlike your freakishly driven, high-octane, overachieving children)….

Should I be surprised he hasn’t called me back yet?

It’s Your Turn to Share: So….How’s the system working for you and your kids? Do people really get that these children have different needs, or do they mostly hope that if they ignore them, they will go away on their own?

LJ

Why Johnny Can’t Write

I must have been fooling myself to think that people would have noticed that I haven’t posted in more than a month.

So far, the only person inquiring about my blogs have been my mom, and even then, only to let me know that she can’t find them (because she can’t remember how to spell my name? Not sure.)

So to no one in particular – I’m back!

Thank you, thank you!

It is probably pathetic to write a post about the reasons for not writing regularly. Or worse, it might come across like I am plagued with a guilty conscience or hopelessly insecure . But I’ve learned a few interesting things over the past five weeks that I think are worth sharing.

Occupational Incompetence:

Ever notice how quickly the guy or gal with all those great ideas becomes a complete idiot the day after he/she’s finally given the responsibility to fix what they’ve been complaining about?

So that kind of happened to me. My blog generated interest beyond my loyal circle of readers (mom and her Mah-jongg group), and I was contacted by a representative from a marketing firm that signed me to a deal (hooray!) that would give me a shot at reaching a global audience.

Don’t get excited – there’s no money crossing hands here; its like an internship I suppose.

Just like that, the pipeline closed down. Nothing. Not a shred of an idea.

Overnight I went from Hero to Zero.

The Blah Days of Summer

The second interesting thing is something that isn’t happening. Specifically, my fifteen year old Asperger boy is spending his summer doing absolutely nothing. Oh, we tried to enroll him in college courses, tried to get him to camp, tried about everything short of enlisting him in the Bolivian Army, but nothing seemed to fit “just right.”

And so, he spends his days in front of my computer playing Runescape – one of the many “Second Life” variants that give those with less than perfect social skills a chance to shine and live a life of riches and power beyond their parent’s feeble ability to provide.

I think he’s like a gazillionaire with mighty hoards of beasts slaving for him – What does that say about his future career interests? Maybe Bolivia is too tame for him?

I literally trip over him when I come home for lunch, when I come home for dinner, and when I get ready to go to bed.

My whole groove has been thrown off . I need my room to be my room if I am going to write. I’ve come to appreciate that the writing experience is so much more than pen and paper (or keyboard and screen) – it requires a mindset and a degree of comfort with your surroundings.

On another level, the experience of  just seeing him there, practically limp and lifeless, without so much energy as a potted plant – it just does something to me. I feel repulsed maybe? Disgusted with the whole computer thing? Like I’d rather do something else instead?

So what’s changed for me now that I have suddenly rediscovered the “magic?” I’m not sure. Maybe I’ve grown accustomed to this depressing scene and it doesn’t bother me as much anymore?

I have yet to complete my first post for the big guys and I am beginning to wonder if I might be frightened at the thought of putting my kids on display to such a large audience.

It’s Your Turn To Share: How do you recapture your ability to open up and communicate when things seem to be shutting down?

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

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

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

The Buddy System

I am going to confess that I have not been staying on top of the latest literature nor following the hot trends in the exploding ASD world. In the event that what I write in this post is actually consistent with what others are finding; well to you I say: “No Duh!”

Most every book we own on the subject of raising children on the spectrum devotes a chapter or two (or three….sigh….or four) to talking about dealing with, re-mediating and compensating for social deficits. It is one of the defining characteristics of this condition.

I can’t point to a title by name nor quote chapter and verse, but I know that the books we’ve had lying around since the late 90′s contain language that impart more than a passing notion that the ASD child is a “cripple” who, with proper training, might be able to learn how to “walk” with just a slightly noticeable limp.

This is one of the difficulties reading books written by experts and not parents of children with the “disorder.”  Professionals seem to expect their readers to humbly submit to their superior knowledge and empirical data, whereas parents bring to the table a gritty no-holds barred approach that pits mind over matter: “Don’t you tell me what my kid can or cannot do!”

Personally, I think it is healthy to look for the middle ground. You need to know what it looks like from the perspective of one who has seen hundreds of cases, but you also cannot forget that your kid will always be different, even slightly, and to not give up exploiting whatever strengths you know to be there.

Which brings me to today’s happy tale. Its been just a little over a month since he turned thirteen, and I am beginning to notice the emergence of something special in our NLD boy. He has always been incredibly sensitive to his surroundings, a gift that explains his incredible gift for music and drawing. But making friends and understanding the behaviors needed to create a friendship, those have been a real struggle.

The other night we were readying ourselves to leave synagogue and walk home together when he lets go of my hand and hangs back. I turned to him to ask if he forgot something and, with a sheepish look on his face he simply said: “No, I think I would like to socialize a bit.”

I looked around the room for the telltale sign of kids huddling together, whispering in their own secret language, but to the best of my ability, I saw nothing remotely interesting going on.  Not sure if he was joking or if he thought he might carry on a conversation with the wall, I shrugged my shoulders and walked out the door.

About a minute or two later he comes puffing up behind me, catching me as I arrive at our yard. With a huge smile of satisfaction he tells me the name of his new friend.

This is what he tells me, verbatim: “I figure that now that I am a Bar Mitzvah, that means I have the responsibility to be a member of the community. I saw someone who I had not noticed before and wanted to wait for him to finish praying so I could introduce myself and ask him his name.”

Is that cool or what?

Remember that it may not be an actual deficit of ability as it is a lack of understanding the rules of the game.

Its Your Turn to Share: Where have you found expert advice to be just plain wrong?

LJ

Missing Inaction

I was recently doing one of my favorite things – rereading old posts – when I noticed an anomaly: My archive section makes a mysterious jump from January to March.

And then it hit me… I had gone the entire month of February without posting an entry! How could that possibly be?

It certainly wasn’t for lack of ideas. With two major snowstorms and the kids out of school for eight days, there were plenty of interactions to share and learn from. Did the shortness of the month suddenly rush up at me and blow by?

As a perfectionist I know this little blot is going to bother me more than most. I am not the sort of person who just shrugs off the little stains of life and says: “Its okay, I can always buy another,” or “nobody will notice anyways.” I began to get anxious and wonder if maybe there was some way to roll back the WordPress calendar so I could cover my tracks.

But no, I don’t have those sort of hacking skills and so the hole will just have to stand – a glaring omission telling the world that I am not as disciplined and as on top of my game as I would hope to be.

I guess that pretty much sums up my parenting experience too (and, I suspect many can relate).

How many “Februarys” have slipped through my fingers as they came and went quickly catching me off-guard or unprepared?  Prime educational moments that I totally blew and will never be able to get back.

How many “Februarys”  have been lost in the time vortex because I chose a course of inaction hoping that maybe the problem will solve itself on its own?

How many “February’s” vanished not because I don’t love my kids, but for a thousand other reasons that have to do with my own personal stuff?

And so on. Its the dad’s lament.

But you know what? Despite my inadequacies and failures, they are really doing great; even the boys with AS and NLD. I think my kids are actually better off for my having been absent or “negligent” with my duties. I know I can be a bit of a control freak (it has to do with that perfectionist thing), so it could be a true gift that their dad is not always there to breathe down their necks at homework time.

And maybe its better this way for me too.

It used to be that every time I walked through the mental health section at Barnes and Noble I would feel uneasy to see another two or three books about families struggling to raise a child on the spectrum. I know they are just trying to help, but it seemed like everybody was doing more to help their child and I felt guilty and terrible. (I suppose that’s why I would often start in the mental health section and wind up in self-help)

People were extolling the merits of special diets and chelation therapies that supposedly “cure” autism; how they triumphed at getting that coveted IEP; tips on how to get big bucks from the government by having your child declared “disabled” (yechh), and so on.  Me? If I can finish up a long day and still have enough in the tank for a smile and a warm remark, that is saying something.

I guess a lot of those feelings are to be expected when we live in a super-programmed generation where every parent is looking for that angle to help their child get an edge on the competition. Which is interesting in itself when you consider that most of the people we consider successful got there by overcoming obstacles, not having them leveled in front of them by someone else.

Its your turn to share: Kids are far more resilient that we tend to give them credit for. Share with us a story where you found you got more by giving less.

LJ

This is going to hurt me more than you

My dear son.

Last week I stood in the doorway watching you and your classmates celebrate the Bar Mitzvah of a friend. I am relieved you did not notice me behind the glass; you would have not understood the tears in my eyes.

The room was filled with light, laughter and excitement. Boys were dancing, singing, screaming, grabbing the microphone from the DJ and belting out the latest tunes – having a roaring good time.

You were not among them. You sat in a chair looking lonesome and forlorn. Your suit was not sharp looking, your tie had a huge grease stain straight down the middle. I would learn later that you were hungry. You couldn’t bring yourself to try the Chinese food, even though it meant causing yourself pain and discomfort.

I observed a classmate come over to you and grab your hands in vain as he tried to pull you into the circle of activity. You quickly and forcefully slammed yourself back down into your seat, rising again only to mope around the room with a sad look on your face.

When the party ended and you sat down in the car, I listened as the other boys chatted excitedly while you heaved one deep sigh after another.

My sweet son. Life is so confusing for you; there is so much you do not understand. My tears were not shed in disappointment; they flowed from a place in my heart that feels the deepest pity and compassion. For your life is like mine, and in your pain I remember my own.

They say that the longer you live, the more you begin sounding like your parents. For me, the more involved in my children’s lives I become, the more I understand why my own childhood was so frustrating and dangerously unfulfilling.

I recall the parties that always ended with a broken heart; the feeling that people were laughing at me and not with me; the envy of those smooth operators who always had something funny to say or knew how to dance and be the life of the party.

Those days were so heavy with meaning and dread that with each failure my world was crashing down around me. The smell of each of your sighs is laced with that same anxiety, the same feelings of hopelessness.

I want to look you in the eyes and tell you: “Do not despair young man. I too didn’t know that what made me so different then would one day put me on a path to finding real meaning and achieving great things.” But I don’t know if, in that tangled NLD mind of yours, if you can really hear me or understand that I am standing here alongside you, crying with you, reliving and tasting the old pain.

I will tell you anyways. You may be angry with me. You might do as you often do when I try to give words of comfort; scream and yell that I don’t understand you or don’t care. Watching you suffer is painful enough; watching you go at it alone would be even worse. One day you will understand.

Love,

Dad

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