The pitfall of inscrutability…

As I type this, J is sitting on the couch listening to Luis Bacalov’s soundtrack for Il Postino.  He is doing this while watching Babe.  I don’t know -because my son lacks the ability to explain the choice of music and movie- if this is a sign of sophistication or the equivalent of an autistic I-can-fart-with-my-armpit joke.  I can reason through this (I did, after all, earn a Master of Arts in Liberal Arts from a college that relies heavily on discourse as opposed to lecture…ergo, I can b.s. with the best of them) and say that both Mario Ruoppolo and Babe the Pig are underdogs, intrinsically poetic beings with an outer shell that is quite pedestrian.

Yeah…that sounds about right…or it’s just that J likes Bacalov’s use of the bandoneón (similar to the concertina,) and Babe the Pig’s happy mien.  I don’t know…but he’s completely happy with this combination right now.

The day didn’t start off that well.  In fact, this morning I was dealing with J’s absolute lack of enthusiasm and his pitch-perfect imitation of a tuberculosis patient at a sanatorium circa the late 1900s.  The only thing missing was the intermittent coughing, but he had the Greta Garbo wan and pale look down pat.  I was almost 100% sure that he was going to be sick.  You may ask why, and the explanation might or might not ring a bell with you: J was on the couch, the full length of his not particularly compact body extended, head on pillows, legs covered with a blanket…you get the picture.  The last time J did something like this, he had such a nasty cold that he wouldn’t even eat…that was YEARS ago.  J sits on the couch.  J perches like The Caterpillar.  J only lies down when it’s time to sleep or when he’s sick…otherwise, he is sitting…perhaps with his legs stretched out casually in front of him, but he never lies down unless it’s one of those two instances I’ve mentioned before.

Imagine, then, my concern when I saw J (all nearly 5′ 10″ of him) stretched out on the couch with a blanket over his legs.  And because nothing says “you have every reason to be worried, Mother” like the appearance of nausea, J did his best to look like he was about to hurl.  Every house should have (and ours does) an item we refer to as the hurl-bucket, and the only reason I didn’t pull it out of where we keep it is because I suspected a lot of J’s emoting was because school is out.  If he’d turned one shade of green, I’d have had that thing lined up in front of him faster than you can say “bleh!”

So the morning went by with J acting like I should be worried, me being worried, Dada e-mailing and asking for updates on J’s condition and TGG blissfully unaware of the “drama” because he didn’t go to sleep until 3 in the morning and why bother waking up before noon?

J insisted on a walk at 10 a.m.; at 10:30 he insisted on doing his Wii; at 11:00 he sat back down looking like death warmed over, at 11:15 I told him he was going to take a bath.  At 11:45 he sat on the couch and, since he was clean and his socks were not yet on, I rubbed his feet.  The look on J’s face was akin to what Handel was trying to convey with the Hallelujah Chorus…and that was the end of the moping and prostration.  If I had known it sooner, I’d have rubbed his feet while he was still in bed.

Since then we’ve started rolls for dinner, re-arranged the family room furniture (you entertain your kids your way, I will entertain mine this way,) finished the laundry and observed the workers preparing the road behind our townhouse for paving.  We also watered all the plants, moved a praying mantis from the green beans to the yellow squash (because of aphids,) and gathered some peppers and herbs.  This morning’s slippery slope has been conquered…or, better yet, we’ve planted our feet solidly and have managed not to slide all the way down in an uncontrolled free-fall.

In other news, J’s iPod is full.  Eight giga-bytes aren’t what they used to be…sigh.  So I’ve told Dada that it will be best to get him his iPad before the end of the year.  That way he has his iPod for portability, and his iPad for everything else…  Since J won’t be using the iPad for much else other than the few apps that are useful to him, the iTunes and very little else, he should be able to carry a lot of music there.  What he has now, sadly, isn’t enough for him.  Partly my fault, of course, because he knows where our CD collection is and I let him go through it and listen to things that he’s never tried before.  He then falls in love with something that isn’t already in his iPod and we are in a quandary…

Another piece of news: after a mild winter and an unusual summer, our own little (ok, not so little) groundhog is announcing a harsher winter.  J has declared that outdoor season is all but officially over, he has put aside his shorts and sleeveless shirts (and wears them only when insistently enticed to do so by his mother,) and is keeping the blankets handier than he has since we moved here.  In light of his telegraphed announcement (because J’s inscrutability is something that we can sort of unravel at this time,) I have measured the space in my room to see if I can move the computer to the warmer levels of our residence.  This winter, thank goodness, TGG will be working during the day, so J will not have to be in the frozen tundra to allow his brother some peace and quiet for well-deserved rest.

Of course, who knows what Mr. Garbo will decide…but I’m ready to move things at a moment’s notice!!!  And I’ve also researched prices for down coats…one never knows if I’ll have to weather another winter in the basement with the fans going full blast!

Unexpected additions to the Christmas present list…

Between yesterday and this morning we discovered, much to our delight, that J is not only very skilled with hammer and screwdriver, but he also LOVES putting furniture together.  Who knew???!!!!

It was rainy yesterday.  No, correction…it was cloudy and definitely-not-outdoor weather yesterday, so J and I spent the day reorganizing the closets in the basement level, and then I decided (because he was starting to show signs of wanting to check the mailbox for the fourth time) that perhaps he would enjoy helping me with one of the cube-organizer units we had bought the day before.

In a nutshell -and I’m glad I set up the video camera for this, or Dada and TGG would have doubted my story- I ended up assisting J rather than the other way around.  He put the whole piece of furniture together with some help from me…such as pointing out to which page of the instructions we were supposed to be following.  At first I tried to be a little more hands-on, but then I realized J would have preferred me to leave the room and let him work in peace.  Because tools were involved, of course, I couldn’t just walk out and leave him unsupervised, but I basically just made sure I supported the pieces he was working on, and I handed him the tools required at the right time.

In half an hour J had put together a six-cube unit…today it took him 45 minutes to put together a 9-cube unit.  You’re probably thinking that I just wanted to get out of doing this myself.  To that all I have by way of a reply is: you have NO idea how much I love putting furniture together.  My husband will tell you that, over the past thirteen years, he has often found himself simply handing over things as I steamroll him out of the way when it’s time to assemble things.  Yesterday and this morning were exercises in patience for me, not because J was taking too long or was doing the job poorly, but because he was taking away my fun.

As I mentioned, I filmed J putting together the 6-cube organizer yesterday, and then I had the pleasure of watching Dada and TGG watching the video.  I wish I had taken video of them.  Classic!  None of us had any idea that J could use a hammer so well, much less while working on a 1/2″ wide piece of compressed wood that, sadly, can easily split and chunk off if one hits it with even the slightest of glancing blows.  For a person with rather large hands and fingers, J did all this delicate work without any help, and not once did he hit his thumb, miss the nails or harm the piece of furniture.

J’s ability to complete this type of task is a very pleasant surprise, but the even greater and even more pleasant surprise is that he LOVES doing it!  The smile on his face, the giggling…priceless!  Once he was done, he happily helped me stack the unit on top of one we already had, and then he helped me move books from another side of the room to the newly assembled piece.  This morning, when I told him to help Dada carry the other package to the basement level, J was skipping and laughing…he clearly takes after his mother.  (Lord, help us…if my track record is anything to go by, the kid will go into a lifelong pattern of giddily assembling things and then giddily re-arranging rooms.)

What does this mean?  Well, for one, when his new headboard arrives on Wednesday or Thursday, J will be the one who puts it together.  Furthermore, my plans to replace the old pine shelving units can now slowly be set in motion.  That is: I can purchase the kits and leave them in storage until J’s Christmas vacation rolls around and, on each snowy day when he is in the mood, he can put one together.  The old units will, for the time being, be stored in the garage until TGG is ready to move out and they are handed to him (as has been promised over the years.)

I am adding to my list of “things to get J for Christmas” a very simple set with hammer and screwdrivers, etc.  Needless to say he will be supervised and all safety precautions will be taken into consideration, as usual, but this is quite an interesting development.  He handles tools, nails and screws well, with such dexterity and self-assuredness that we are impressed and happy.  Another thing I’m adding to the list: wood project kits.  This, of course, will take research and planning, but I’m sure we’ll be able to find things J can work on and enjoy.  The prospect is exciting!

From the large basket where I keep all the PECS that we have not yet used because they haven’t been germane to our circumstances, I’m fishing out the HAMMER, NAILS, SCREWDRIVER, and so forth.  I’ve already sought out and learned the signs for these words…and our vocabulary and skill-set keeps growing…and growing…and it makes us all very happy…

Tomorrow, Sunday, we will take some time to work in the “garden.”  The weather has not been conducive to enjoyable outdoor time, but we will be taking advantage tomorrow.  As of Monday, J and I will entertain each other as best we can now that the four hours of summer program are finished.

I’m sure we’ll be ok.  I think we can now dare to push the boundaries of our comfort zone.  Very exciting indeed!

 

 

The fine (and elusive) art of teaching social conventions to the intrinsically antisocial…

Yesterday afternoon J and I had a difference of opinion.  He thought that, in spite of the report that he’d thrown a colossal tantrum at school, I should be happy and I was convinced that I should remain disappointed and upset.  From the time J stepped off the bus and I was told of his head-banging ways (with his fist, on the wall,) I launched into a calm and measured speech about how the behavior was inappropriate, how he had scared his aide and how I was not particularly pleased to hear that Water Fun Day had turned into a disaster because of HIS attitude.

J is nothing if he isn’t The Little Engine That Could turn that frown upside-down.  At least, he THINKS he has the ability to elicit a reversal of mood with one simple action.  The action of choice on this particular occasion was the Sheldon-Cooper-Fake-Smile.

No, he wasn’t trying to make me laugh (although I will confess that I very nearly did, and that it took all I have in me to control the urge,) he was simply faking a smile to see if it was contagious.  It wasn’t.  I did have to take a moment to hide in the bathroom to suppress a giggle, but I was determined to show J that inappropriate behavior is something I will not tolerate.

The whole incident stemmed from a change of clothes.  Yes, you read right…a change of clothes.  Apparently, J didn’t want the bathing suit I packed for him so he decided to channel Godzilla long enough to get his way.  Instead of saying NO, which would be the abrupt manner in which to address the issue, he decided that emoting would be the best course of action.  In his defense (half-hearted defense, believe me…I don’t think he was in any way justified,) there might have been more insistence than he can handle, but throwing a tantrum is not the proper response.

So…what IS the proper response?  If I could have any wish come true right now (not having to do with financial comfort, tip-top health and happiness for everyone) I’d choose for J to understand the intricacies of social interaction.  “Would you like to change into this bathing suit?”  “Well, no, thank you; I would rather not.”

OK…that’s elaborate, but you get the picture.  I would love for him to understand that he can decline to do something without making it look like he’s just been offered a pact with Satan and he’s vigorously against it.  A simple no, thank you would suffice.  I know this is one of the great difficulties faced by autistic individuals…the fine line between “no” and “no, thank you.”  Since J is non-verbal and, for all intents and purposes, has the mental age of a two year-old, this is even more difficult to convey to him.  While I was upset with him yesterday for not reacting in a way that wouldn’t scare his aide, I was also upset with myself for not yet mastering this social convention.

NO has a finality to it that means to dissuade the other person from any other approach.  NO, of course, doesn’t work as well as one would like when J releases his barrage of rat-tat-tat COOKIES, CHEESE, CRACKERS, NOODLES, etc…  Even I get tired of the inconclusive finality of NO in those instances.

Modeling no, thank you is what we need to do, but HOW????  While modeling this behavior is not impossible, the practical application doesn’t often present itself around these parts.  J is learning to accept that he has options (for breakfast, for snacks, for activities,) but he hasn’t yet realized that no, thank you and yes, please are options, too.  To any parent of neuro-typical children this probably sounds rather hare-brained…how can a kid not KNOW that he can say ‘yes’ or ‘no’ to something???  Well…welcome to the wonderful world of autism, I say.

We walk a high-wire, and often without a net, when we try to teach our kids what is second-nature to others.  Our children -my lovely, blessed J- live without that filter that helps people interact with each other in a more or less balanced way.  We are the filter.  We have to be ever-vigilant of what new thing will crop up that we haven’t addressed.  Some of the things that crop up seem, well, esoteric to the autistic individual they are being presented to…like code words that only a few people will “get.”  NO, J thinks, is the preferred term for him…NO, you can’t have cookies; NO, you can’t run out of the house naked; NO, don’t hit your head, and so forth ad nauseam.  When he doesn’t think NO will do, he lets the wild rumpus begin, and the wild thing he turns into is neither benevolent nor cute.

A few months ago, while shopping, we saw a mason jar with a “butterfly” in it, press a button and off the butterfly goes, flittering about until the timer on the button runs out.  J was both fascinated and scared when he saw this.  He will sit on the back porch step and watch butterflies flittering back and forth, short distances between turns, rises and dips in their flight pattern.  He loves butterflies, and he doesn’t know that it often feels like I’m trying to get one to fly in a straight line when I’m dealing with him.  In cinema, J and his peers (his real peers, this population of kids whose parents often have to resort to Plans B, C, D, E…and AA, BBB, ZZZZZZ) would be the equivalents of Manic Pixie Dream Girls…defined by Nathan Rabin as “bubbly, shallow cinematic creature that exists solely in the fevered imaginations of sensitive writer-directors to teach broodingly soulful young men to embrace life and its infinite mysteries and adventures.”  A lot of people out there, who don’t know better, think WE -the parents who try to rein in and make blossom these wonderful, difficult creatures- are dealing with something created by our own anxiety, our reaction to a diagnosis.

All I can tell you is this: I eventually sat J down and told him he had to apologize to his aide, and that THAT would go a long way to make me happy.  I got the Sheldon Cooper smile again, and I responded with a legitimate one of my own.  I also am making a point of generating more “no, thank you” and “yes, please” opportunities around here, peppered into the barrage of NO we usually experience.  But, like I told my husband yesterday as we drove sans J to the store, unless we all end up in a barren, post-apocalyptic wasteland, social conventions are never going to be easy for him.

Ah, yes…something to look forward to???  Egads!

Tsk, tsk, Joe Scarborough…thanks for nothing!

Original statement:

“You don’t want to generalize,” MSNBC’s Joe Scarborough said today before saying that James Holmes, the suspected Aurora, Colo., shooter, was “on the autism scale.”

“As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale,” said Scarborough, whose son has Asperger’s syndrome. “I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected.”

Subsequent clarification of comments:

During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.

The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently.

I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.

Quoted from Dylan Byers on Media at Politico.com, July 23, 2012

Dear Mr. Scarborough,

I know you have since clarified your comments, but I’m neither satisfied with nor mollified by your follow-up statement.  What, exactly, did you think you were doing when you opened your mouth and blurted out this particular gem?

Couldn’t you refrain from throwing Autism into the mix of something that is already tremendously horrible?  Couldn’t you help yourself and pull back before planting the minuscule seed of doubt and prejudice in impressionable people?  Don’t we have enough to contend with as is?

Oh, I know your son has Aspergers.  I hope he, too, has thanked you for saying what you did.  Not everyone will wonder if he’s going to go ballistic and kill people, but some out there will.  Those who will are called IGNORANT PEOPLE.  Perhaps in your financially well-off and socially sophisticated circles you don’t have many of them, but those of us out here who shop at the same department store week after week, and live in a community where the average student doesn’t attend the likes of Choate Rosemary Hall in hopes of then attending Yale or Harvard or getting a Fulbright Scholarship to go to Oxford or Cambridge, well…we operate in the real world.  That world, by the way, doesn’t generally understand that our children are not social misfits.

Our children, Mr. Scarborough, are not disconnected from society…they are disconnected even from us, their parents and siblings, and we work pretty hard to help them overcome certain hurdles so that people out there will not judge them based on ignorance and misinformation.  Now, thanks to you, there will be those out there who think that an individual in the Spectrum, who has finally learned enough life skills and self-help skills to live on their own, might…just might…perhaps…collect weapons and kill innocents because of their social disconnectedness.  You have, in public and for all to hear, made SOCIOPATHY synonymous with AUTISM.

Thanks for nothing.  Thanks for opening a window of doubt regarding what my son is capable of in the small minds of people who will take your word as gospel or who will say “hey, that Scarborough guy should know because his son has Aspergers.  He works with Autism Speaks, doesn’t he?  So he MUST KNOW!”

Look, Mr. Scarborough, J walks around with boxing gloves.  What do you think people have been wondering about that all this time?  If I had to explain before, now I have to explain more.  J has had behavioral issues, and he was self-injurious and frustrated and grunted like a wounded animal.  The weird looks we get are not going to get any less weird because now you, Joe Scarborough, have laid the groundwork for those who want to think that our children are potential sociopaths.

I hope your son’s mother yelled at you.  I really do.  I couldn’t yell at you because I don’t know you, but I would have.  I hope she was mortified by your insensitivity.  I hope you are getting a barrage of e-mails and phone calls.  I hope your son’s psychiatrist, therapists, teachers, and so forth call you and tell you that what you said was unfair and not very helpful.

Perhaps in your “brewed by Starbucks” world, your son doesn’t feel different from his peers.  Perhaps you don’t have to jump through hoops to help your child adjust and adapt and learn and integrate to the surrounding community.  You are, perhaps, lucky that way…your son is -what was it that you called it?- “young, white male, probably from an affluent neighborhood, disconnected from society.”     

The thing is, Mr. Scarborough, that not every autistic individual is young, white, male, from an affluent neighborhood…a lot of them are just run-of-the-mill folks from different walks of life, ethnic backgrounds, ordinary neighborhoods.  That they are “disconnected from society” is part of their condition, not a personal choice.  Most of our kids go to public schools, and not in fancy school districts…just in regular ones.  You know which ones…the ones where you have to send extra paper towels, toilet paper, boxes of tissue and maybe even reams of copier paper to help sustain all that stuff that goes on in the classroom.  Our fundraisers are not so the kids can go to Europe in the spring…they are so we can get extra equipment for the classrooms…

The people impacted by Autism, at least the ones in this household, would appreciate if you shut your trap and didn’t think yourself an expert.  None of us are, sir, even though we sure as heck try to learn as much as we can…

Going back to the Real World now…

Two thoughts (brief) on two events…

Friday morning wasn’t fun or easy for anyone watching the news.  No sooner had we turned on the TV that we heard about the mass shooting at a midnight screening of The Dark Knight Rises.  The questions “why?” and “really?” hung in the air all day.

As a mom, I was left to field questions.  TGG, who was less than 2 weeks away from turning 8 at the time of the Columbine Massacre and who was not-yet-eleven on September 11, 2001, once more came to me, wide eyed and heavy-hearted.  I would have said “buck up, buddy!” if I didn’t remember clearly the events that unfolded at the Munich Olympic Games when I was not yet 8 years old.  One never learns to not ask “why?”  One becomes a parent and one is asked for an answer…

The boys had planned (quite enthusiastically) to see the movie on Saturday morning.  J was, of course, oblivious to the goings-on.  There are times when one thinks “well, he’s blessed that way,” and at other times one thinks “he isn’t even savvy enough to see something like that coming.”

TGG was horrified, and scared.  On the one hand, I am glad he still has the ability to be scared and horrified.  On the other hand, I -as a parent- have to push him and remind him that life, while precious and ephemeral, has to be lived…existing is all well and good, but living in fear is crippling.

On Saturday morning they went to the theater.  They watched the movie.  Ever vigilant, of course, in case some other person thought “oh, well…let’s copycat this violent act.”  We were relieved to see them come home, and then our hearts crumpled because it made us realize that there are 12 families who will never see their loved ones walk in through the door after going to a movie…

I don’t know how to handle this.  It doesn’t get easier because your children are older or because they don’t understand.  It is horrific and senseless, and the more one hears about the person who felt compelled and empowered to walk into a theater and start shooting, the more one’s heart crumples.

I understand weapons.  I’ve fired guns.  I learned to respect them.  I felt powerful and I was humbled by the experience.  I made sure that my kids know they’re not toys, and while I respect the rights granted by the Constitution of the United States, I also understand that people no longer respect each other to the degree that is necessary to value life.

That’s my take on it…

Second event:

Sally Ride, the first female U.S. astronaut to go to space, passed away today.  She was only 61.  She died of pancreatic cancer  17 months after being diagnosed.  Sally Ride was a personal hero.  She was an amazingly intelligent woman, and she was brave and blazed a trail for many girls who, until she arrived on the popular consciousness, wouldn’t have dreamed it was possible to go to space “with the boys.”

My mother in-law, another personal hero, died from pancreatic cancer fourteen years ago a few months before her 67th birthday.

She was a wife, a mother, a home-maker.  How can two such different women be my personal heroes?  It’s very simple: each in their own fashion proved that one can do what one puts one’s mind to…each blazed a trail in her own way.  Sally Ride proved that you can be smart and bold, and do what the boys do…even if History leaves you a longer wait-time to make your mark.  My mother in-law proved that what I now do is an honorable and worthy job.  I am thankful to Sally Ride for making being brainy a worthwhile pursuit, and I am grateful to my mother in-law for raising an impressive man who respects what I do.

The world can be a horrible place.  Friday morning proved that.  The world is also full of possibilities, and it is up to us to put as much as we can in to make it better.  I will never go to space except in my imagination, but I am helping J explore the world and getting him in touch with all its possibilities.

Let’s not let people who feel less than respect for us crush us into a corner.  Let’s not be afraid.  Like I told TGG Friday morning when he curled up on a chair (looking all of 8 years old) “we don’t know when our number is up, but we can just sit and wait to grab a ticket…we have to get on the ride and do all we can so that we leave the world different, and preferably better, than we found it when we got here.”

To Sally Ride and my mother in-law: thanks for making the world better, for the example.  To all the families and loved ones of the people killed and wounded in Aurora, CO…this has changed us, and we carry your hearts in our hearts.

 

A territorial dispute…and a philosophical quandary of sorts

The weather, in all its rainy glory, has encouraged J to occupy the family room.  He has brought reinforcements.  Any incursion on our part is repelled by Madeline and company, Bette Midler and Rosemary Clooney, Queen and J himself.  I know it sounds absurd, but once Barry Manilow starts accompanying Bette Midler in On A Slow Boat to China for the, oh, tenth time in a row…retreat is the only option.  (Surrender would imply being taken prisoner and no one wants to be stuck in the family room listening to that song for hours on end.)

I am not complaining about the rain.  The only thing that bothers me about all this is that J hasn’t had much outdoor time since last week.  We still walk to check the mail, and he’ll help me with the garden, but he hasn’t really sat outside and listened to his music since we had that horrible heat wave a while back.  With the rain, going to the pool has been impossible so here we are, listening to music and doing the usual housework.

We have put together an Animal Album with pictures we printed and clipped to size.  We are working on learning how to sign all these animals’ names…all fifty-one of them.  To reinforce this we have taken out a plastic tub full of plastic animal figures J has amassed over the years.  The combination of plastic animals and pictures sent me scrambling to google to find how to sign some of them.  Never in my wildest flights of fancy would I have imagined I’d learn how to sign OPOSSUM.  We see enough of them run over by cars on the side of the road (poor dears…looking every bit pathetic) to justify knowing this word and signing.  Of course, since most of the opossums we see are dead, I’ve learned to sign DEAD OPOSSUM for J.  I don’t know how well he understands the concept of DEAD, but I’m working on it…considering that one of our cats has obviously met her doom and is no longer around, you’d think he gets that she’s, well, dead, but I think he just assumes she’s not here and that’s that.  The sign for LOSS has failed to convey the cat’s situation…

Next week is the last week of summer program for J.  Wednesday is Water Play Day, and a change of clothes has to go with him to school.  They will also have a cooking-day for which I’ve been asked to provide a child-friendly recipe that is “typical” of our cuisine.  That they think our cuisine is Mexican or New Mexican is beside the point…I could try to explain that we’re really Puerto Rican, but I get the feeling it would be confusing to them…”well, you see, we are from Puerto Rico, but we learned about Mexican cuisine in California and New Mexico where we also learned about New Mexican cuisine which is inspired by Mexican cuisine but adapted to…and Puerto Rican cuisine differs from Mexican and New Mexican cuisine in this way…”  And cue the blank looks…we get them all the time.

I figured I’ll send J to school ready to make quesadillas, which are kid-friendly, easy and non-comittal in terms of which cuisine they belong to because, in essence, they are a grilled cheese sandwich with an alternate kind of bread.  (And I’m rolling my eyes…I know I’m taking the easy way out here.)

Next week I have to get ready for J’s real vacation…that time between end of summer program and the beginning of the school year.  I know that, to a degree, he’s ready for this break.  He hasn’t stopped enjoying going to school Monday through Thursday, but he sees on the calendar where I’ve written “end of ESY” and it doesn’t bother him.  I’ve told him there are things we’ll do starting next Friday, and I think he’s looking forward to them.

That TGG has been offered a daytime shift at work is good news.  We are now in a position where J will have to get used to another schedule for his brother, but it’s a small adjustment to make.  Instead of seeing TGG leave at 10 P.M. on nights he works, J will now see his brother spending more time awake during the daytime hours.  Perhaps we will even see him at the dinner table more frequently than we have been, and seeing TGG up early in the morning will not mean “crap, we’re going to the doctor!!!” to J.

Every forecast for tomorrow morning says we will be able to go to Market as we do on Saturday mornings.  I am hoping we can, but I am not holding my breath.  All we need, really, is one hour to go to town and then we’ll come home and work on different things with J.  Tomorrow I plan to take advantage of the rainy day to help him clean his room and figure out what, if anything, we can put out next weekend for the neighborhood’s garage sale.  So far we have very few items; so few, in fact, that it might not be worth it to participate, but we’ll see…

Ah…time to scoot…Freddie Mercury has been placed on “center stage” and I am pretty sure this means we’re going for a Bohemian Rhapsody, Bicycle Race or Fat Bottomed Girls marathon.  Since I forgot to buy Tylenol this week, I need to vacate the premises no later than the second round of whatever song J’s going for…otherwise I will have a splitting headache no matter how far from Queen I sit.

It’s a small price to pay…he’s pleased with the furniture layout and he’s not curled up on the couch looking at the rain while listening to Chopin (one of the saddest things you can listen to while watching it rain…)

Off to work on all the things I need to prepare for the coming days-at-home J has on the calendar…I still have to figure out how to explain DEAD to J.  I mean…shouldn’t everyone understand that type of finality?  Feel free to share your thoughts on that…

He is so fluent in body language that he picks up even the most regional of slangs…

Whatever you do, keep your knees and elbows relaxed.  Not to the point where you look like Goofy ambling down the road, but relaxed enough that you don’t resemble a Rock’Em Sock’Em Robot.  J does NOT need a phrase book to figure out what the stiff spine and set-in-stone jaw mean, and -like a hypersensitive smoke detector- he will react to what he senses entering or leaving the room.  By “react” I mean he will soak up the mood like a sponge and then he will mimic it in varying degrees until, by some miracle (or titanic effort on mother’s part,) it will peter out and disappear…

While it is not like walking on eggshells, it is necessary to carefully consider one’s reaction before exposing J to it.  While individuals with autism tend to have difficulty reading facial expressions and such, J seems to -over time- have become an exception to this rule.  Tightly squared shoulders send him, hand extended in offer of a handshake, towards the person who looks less than relaxed.  The round of handshakes can be interminable when more than one person is in less than a good mood…

No one meant to be upset this morning.  Things just evolved in a way that translated in J’s mind to “something is not quite right.”  I woke up early and started the coffee; I then came downstairs to do my yoga and strength exercises while Dada finished up preparing our breakfast.  When it was time for J’s med, I jumped in the shower, leaving Dada in charge.  I’ve learned to let go of things because, honestly, I am aware that I cannot control everything, but this is only effective when people heed my advice…if I say “ask if he wants THIS or THAT” it isn’t unusual for people to say “do you want THIS?” or “do you want THAT?”  Instead of putting J in a position to choose so that he has to accept what he has selected for breakfast, only one option was given and the whole Universe (yes, I know I’m being hyperbolic, but you’ve had THOSE mornings too, haven’t you?) was thrown off-kilter.

While I was showering, which is something I usually do AFTER J leaves for school, J poked his head into my bathroom and, because one plus one equals two, he assumed I was showering because we were going out.  Just like I spent countless, mentally-painful hours trying to reason out why a “variable” couldn’t be whatever I wanted it to be in Math, J doesn’t always get that a change in the routine isn’t necessarily leading up to what he suspects it’s leading up to…  So I made the mistake of showering in the morning and leaving J to field the issue of breakfast with Dada.  (Notice, please, that I implied J was in charge…not to underestimate or undervalue my beloved husband’s ability to handle this, but…well…he doesn’t really LISTEN all the time.)

By the time I was on my way back to the kitchen, J was muttering to himself and Dada was trying to negotiate a sudden change in menu.  “J you chose WAFFLES so you can’t now ask for something else.  You asked him to pick, didn’t you?,” I asked Dada.  With a slightly defensive tone creeping into his speech, Dada replied “he said WAFFLES!”  J’s eyes darted from Dada to me, and I asked -very calmly- “but you offered him the two choices, right?”  J squinted and crossed his arms, turning towards Dada.

That body screamed -in very measured tones- WELL, ‘FESS UP, DADA!  My husband, with a sigh of defeat, admitted that no, he had not offered choices.  He had simply done what I always tell him (and TGG and anyone else who will be in a similar position with J) not to do…he had said YOU WANT WAFFLES, RIGHT?  J smiled, feeling vindicated and knowing that his mother, channeling Solomon, would make a clear judgment call in mere seconds.  “He gets both, then.  Sad to say, but he was not given the choice so we now have to negotiate with him,” I said.  I sent J to work on sorting the recyclables and packing his snack for school.

Not twenty minutes later, Dada stomped down the stairs.  The excuse for the intensity of the walk and the tone of voice he used was “I want to make sure I don’t forget anything.”  The body language screamed “I can’t believe you disagreed with me. I can’t believe you called me out in front of J.”  J, sitting at the kitchen counter eating his waffles, sat up very straight when he heard the steps on the stairs…

No, it was not a threatening stance.  It was not anger or outrage, it was merely the normal reaction of an adult who feels mortified because a mistake that can be easily resolved with a neuro-typical child is not as easily resolved with an autistic individual.  A regular, run-of-the-mill kid can be told “well, you’re not getting that and that’s that.”  Heck, in fact, a regular, run-of-the-mill kid will get whatever they want for breakfast and, as long as it’s not ice cream, chocolate bars, anything with ketchup or barbecue sauce, we probably wouldn’t give it a second thought.  I remember, in adolescence, having a can of Pepsi and a frozen Snickers bar for breakfast, and my mother never really noticed or was bothered by it.  Am I appalled now?  Yes.  I’m not proud of my ridiculous eating habits then, but I’m trying to do better with my children.

Anyway…

I got closer to Dada and said, in a soft, kind tone, “your body is saying you’re anxious and J is picking up on it,” and -forgive me for this- being a guy, he decided to say “no, I’m just trying to get out of here with everything I need.  Is TGG going to want to go for our walk this morning?  These early morning walks are a hassle.  Has he called yet?  It’s almost seven-thirty.”  Out of the corner of my eye I could see J, and I could tell he was picking up on the nerves suffusing the room.  “Hey, he’s got his interviews today…I don’t think…” and cue the front door.  TGG walks in looking (and don’t tell me God doesn’t have a sense of humor) rather stormy.  “My stupid cell phone didn’t have a signal and I tried to call and couldn’t and I didn’t know if we were going walking today and…”

“J, can you go get the snacks for your snack box?  We forgot to fill your snack box!  Can you go do that?,” I said to J who was staring at everyone in the room, shoulders tight and neck even tighter.  He walked away, snack box in hand, looking over his shoulder every two seconds.  Once I heard him reach the bottom floor I looked at the other two grown-ups in the room.  “WHAT the (insert expletive)?  Do you have any (insert expletive) idea how you’ve upset J?  I know you’re both upset for different reasons but PLEASE control the urge to spread it around IN FRONT OF J!!!!”  Cue fast paced argument flying in ten different directions, excuses and reasoning that makes no sense, and then CREAK on the bottom step and even faster arguing until I say SH! and, two seconds later, J walks in.  Eyes wide like soup tureens (a bowl just won’t do for this simile) and mouth downturned, J brings the snack box to me…and I chirp…

I chirp!  I friggin’ chirp!  I turn into Pollyanna!  I suddenly beam and bounce, and butterflies and bluebirds fly around my head.  I have, in a second, turned into Snow White and Grumpy and Grumpier are just standing there, mouths agape, staring.  “J!  It’s time for you to make your bed and get ready for school!  Go!  Go!  Go!  I’m right behind you!!!!,” I trill.  Up the stairs he goes, a hint of doubt in his step, but he seems to be buying the chirpiness that has spread like wildfire over the room.

I hear the door click and I turn towards husband and oldest son.  Well, no…Zuul possesses me like it possessed Sigourney Weaver’s character in Ghostbusters, and I bark at both of them “keep your nasty moods to yourselves!”  I wish I’d been wearing a cape because it would have made turning and swooping out of the room a lot cooler…

In the end, I managed to convey to J that everything was cool, alright, fine, dandy, and such.  We walked to the bus happily singing our “bus song.”  We practiced our colors, body parts, greetings, and so forth…and the bus came…and he hopped on as if he was taking a ride to an amusement park, waving happily as they drove away…

I sound like a lunatic, I know.  I am not bipolar, though the world (and you) might now think so.  The truth is that I know what anxiety costs J, and how it can burrow and nest deep in him, slowly taking over and tainting his being.  I don’t want to turn my family into a bunch of hypocrites, but I do need to make sure that we all take into consideration J’s well-being.  Like I told Dada and TGG this morning: they get a chance to leave and expend their mood away from home, while J and I are a little more invested in being here and grabbing all sorts of bulls by the horns.

If J comes home in a bad mood, that’s for us to deal with…there’s only ONE of him and it’s a lot more manageable.  Sending him to school in a bad or anxious mood that could have been prevented with a little bit of conscious forethought, however, is something that would be unfair.  The teachers and mentors deal with more than MY kid, and I shouldn’t shrug off being considerate of that fact.

For the record, peace has been re-established via e-mail.  The argument, anxiety, anger, mortification could have been expended in the same fashion.  Now, if you’ll excuse me, I have to go starch my halo and feed the butterflies and bluebirds…they  might be necessary again later.