Food For Thought

Every industry has their own version of the insider joke. In fact, its probably a good measure of how deep you’ve integrated into that new culture when you can sense the joke or prank coming from a mile away.

During my thirteen year tenure in Miami Beach,  I was determined to live as frugally as possible (okay, okay, so the fact I was also broke most of the time didn’t help me neither). That meant no Jai Lai, no greyhound racing and, stunning as it may seem, not a single round of golf.

But as we all know, you can take the boy out of the country, but you caint take the country outta the boy. I fell for deep sea fishin, and I fell hard. Before I knew it I was spending forty or fifty bucks on day trips for tuna and dolphin (Mahi Mahi – not Flipper. Duh!), and a tad bit less for these ridiculous late night bottom-fishing trips where the customers easily drank ten times more beers than the number of fish the entire boat would catch.

Of the hundreds of dollars I sank (or better – drowned) into this hobby, I have only one fish to show for it – A Bonito.

Like its name, it is a lovely piece of fish…but that’s about all.

After my eight-pounder had been gaffed and hauled aboard, I giddily danced around the boat looking for that good ole first-mate who I heard does a great job of filleting if you’re willing to slip him an extra fiver.

“Yeah?” he grunted.

“I caught it! I caught it!” I half cried/yelped.

“So you want to eat it, do ya?” He asked me.

“Is it good?” I looked up, my face filled with hope. (Bonito are not kosher, so it was pretty irrelevant anyways – but I was intoxicated in the moment [with joy, not beer])

“All right then,” he said. “Let me tell you what you need to do. Go get yourself a foot-long piece of hickory wood and lay that Bonito on it. Cover it with olive oil, basil, tarragon, rosemary and a pinch of dill. Preheat your oven to 350 and then roast it for twenty minutes, turning after ten.”

Out of the corner of my eye, I spied a few people with wide smiles. I guess they were remembering their own delicious Bonito dinner. I was salivating and thinking of the right white wine to go with it.

“And then,” the mate continued, “when its done, let it cool for five minutes, throw away the Bonito and EAT THE WOOD!”

Har Har Har! The boat exploded with laughter as the newest initiate earned his Sea Dog stripes, accompanied with back slaps for having given them a grand old time.

Recently, while back home from school, my eldest son turned up the pressure on his Asperger brother, determined to unlock the secret of his picky eating habits. After a few days he came back to us with the following break though.

Our son explained to him that when people say the word “Chocolate” (one of the few things he eats) – in his head he hears “Food.”

When people say “Grapes” – he hears “Grapes.”

Apparently, he has either become conditioned or is hard-wired to not associate these things as being edible, hence the lack of desire and actual disgust when they even come within inches of his plate.

My wife is very skeptical. She thinks he made that up to get us off his back. But I am willing to continue exploring this new idea, and will report back as we come up with ways of testing it for authenticity.

Its Your Turn to Share: Got any ideas for us how to conduct this test? If he is right, how do we go about reprogramming him to think differently?

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

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?

Scratch and Sniff

I love medical terminology, especially the Latin ones. Rolling those ancient sounding words off your tongue is the closest most Jew-boys will get to an authentic Catholic service. “Ipsum Forum Rectum Glutius Maximum,” or something like that.

By far, the best feature of this taxonomy is the comfort it brings knowing that someone else took the time and trouble to catalog your weirdness and peculiar interests. Somewhere in the DSM IV, there must be a chapter devoted to Geekus Draconius Loserus: a childhood malady where the sufferer loses touch with reality brought on by playing endless sessions of Dungeons and Dragons. (Fortunately, there exists a simple cure: Discover girls. But that is for another time.)

When I wasn’t busy throwing a ten-sided die, my other favorite childhood activity was overloading on sensory input. Back in the day, nobody had heard of Sensory Integration issues, but if they had, they would have entered me as a case study.

When you have ADHD, many co-morbid issues tend to be masked by the outrageous behavior brought on by the HD component. So, for example, when I would forcefully express my displeasure with certain odors, or spazz out if the lights were too bright (two things that continue to this day), the response was simply: “Whoops, time to up the Ritalin.

A personal highlight was shopping for dress pants. Nothing tests a mothers’ love and patience than watching her boy squirm in every stinking pair of wool pants they’ve got in the store. The only way to close the deal was to have each leg lined from top to bottom in silk or satin. Add in some alterations to fit a lanky, gawky teen and watch the price nearly double. It was like air travel on USAir, except there was more legroom (and it was a little less expensive.)

In the months leading up to our son’s diagnosis with Aspergers we were first told that part of what was going on with him was a lack of Sensory Integration. This, they said, explains why he only ate Cheerios (after five thousand bowls these were anything but cheery) in a green bowl, and why he lisped so pronouncedly. As we read more on the subject, the conversation slowly turned to something like this:

HER: “Honey, take a look at this article. It says ‘sensitive to touch, sounds and smells; struggles to sit comfortably in seat…’ Sounds like anyone we know?”

HIM: (Squirming in chair) “Grunt.”

And of course, at first I thought of my dad. Did I mention that as a teen I used to live in fear of turning the TV on after 11 PM? Mind you, my bedroom was in the basement, three stories down. The old televisions used to make this whisper-soft “Boommmpf” sound as they powered up, and even with the volume turned off, dad would come bolting down the stairs and yell at us to go to bed. Honest.

But of course, she meant me. The guy who starts to come apart when the temperature climbs above 73. The guy who walks into the house and can smell dirty diapers upstairs, in the bathroom, on the LEFT.

Great. So now I have ADHD, that Geekus thingamajig (I keep a copy of The Hitchhikers Guide by my bed) and now Sensory Integration. What next?

The obvious point of all this  is to go on record with the following: Over the past twelve years or so there has been a lot of talk about the role vaccines play in bumping up the incidence of Autism (CDC estimates one in one fifty) with no conclusive evidence either way.

I am no scientist, but I have to tell you that of the many people I have met with children on the AS and NLD spectrum, these kids did not appear out of nowhere. If you look closely you will find what I call Shadow Traits that seem to solidify with each successive generation until, Whamo! You’ve got an AS or NLD on your hands. A little OCD here, a little SI there, mix in some anxiety issues; they make for an interesting gene soup.

Its your turn to share: Am I right? What do you think? Is your AS or NLD child a “freak accident of nature” or the result of a natural progression?

LJ

Trial By Fryer

One of the defining characteristics of our Asperger son is his food anxiety. There is a lot to write about this topic, but for this post let me provide a fairly thorough listing of what he eats, and how it must be prepared. The challenges are obvious. Yehuda eats:

1. Candy – most any kind (not helpful)

2. Chocolate Chip Cookies and Muffins. Mom loads them up with weird sounding things like Lignins and Wheat Germ to add nutritional value. Muffins MUST be wrapped in paper towel (NOT paper napkins), and heated up in the microwave for 25 seconds.

3. Cholent – Meat, potatoes, beans and barley stew served on Shabbat. BUT will not eat meat, potatoes, beans or barley separate or in another dish. No steak, burgers, franks, chicken, etc.

4. Microwave Popcorn made by Ki Tov (Lite – only, NO butter flavored) to which he adds a handful of salt (unless we catch him first)

5. French Fries – McCain brand, REGULAR CUT ONLY, NOT Steak Cut or 5 Minute Fries (emphasis added by Yehuda)

6. Chocolate Balance Bars – However, he will only eat these in private.

And that’s it.

It’s not too hard to figure out why we almost never take family vacations. Let’s see…can’t eat in restaurants, need microwave and fridge, etc. That eliminates most of the affordable options like camping and Motel Six. Oh, and spending the night at a friends house or summer camp? Totally out of the picture.

Yesterday Yehuda was hankering for his beloved french fries. He waited patiently all day for me to come home and take him out to Shoppers to pick up a bag. For some bizarre reason, not a single supermarket stocks up on this one type of fry. Either that or there are plenty of other Asperger kids who hog them for themselves. So it came as little surprise that, once again, we would go home empty handed.

And then Yehuda did something out of character. He agreed to try a substitute brand. No explanation given, just a shrug and an “I suppose.”

Ten minutes later the excitement in the kitchen was building as Yehuda lovingly flattened out the piece of aluminum foil that holds his fries on their journey through the toaster oven (add that to the list of items we need to bring on vacation – where do we put the clothes and water noodles?). He did this with such care that I asked him if he is planning on making a tombstone rubbing, which got me a sly grin.

He opened the bag and I watched his shoulders sag and heard a plaintive groan.

“What’s wrong?” I asked

“They’re small!” He replied.

“Small?”

“Yes! Look Abba at the package! The picture makes them look big and tasty, but look at this!” His voice is trembling with emotion.

I look inside the bag and, sure enough, they are shoestring fries.

“Let’s sue the company for misrepresentation!” Yehuda shouts as he stomps out of the kitchen leaving me to twist-tie the bag and shove it back in the freezer.

“Yehuda, maybe this is a good time to work on being flexible? After all, they may taste fine.”

Yehuda launches into a soliloquy decrying all things new and explains how he can TELL they WONT taste good. He even offers that he can judge by how foods SMELL that they are going to be unpleasant (He might have a point there).

Here we go again.

Two pediatricians have told us that he is healthy and not to make a real stink about what he eats. Once we took Yehuda to a psychologist who was sure he could “knock some sense into him” -  uh oh. That was a clue we were headed for disaster. Six months and $800 later Yehuda triumphantly bested the Dr. and smiled as we drove away from his office, never to return.

Asperger children are not the only ones with picky eating habits although in our case, there is some anxiety issue at work and not just a matter of preferences.

Its your turn to share: What solutions are there for us to help him broaden his taste buds? There are some who have suggested taking away all his foods and “starving him till he comes to his senses.” Kind of like a “Scared Straight” tactic. Is that immoral? Does that even work?

LJ