The not-so-lost art of negotiation…

Today we had a few errands to run.  Well, technically, we had three errands at two different places, but this still required negotiating with J.  If you have been reading about J for a while, you know we’ve come a long way in this area.  We’ve progressed from adamance to hesitation to outright quid pro quo to two-way-street meet-in-the-middle negotiation.  It is very comforting to not be dealing with someone who will cling to a doorframe with nails and teeth.

Of course, this has not been an easy thing to achieve.  J does know when he wants to be open to something, and when he is simply and irrevocably against it.  There was a time when I felt that winning the argument was necessary, but now I’m more concerned on trying to learn how to get to where we want to be.  This doesn’t necessarily mean that I am willing to cave in, but it also doesn’t mean that I won’t.

Every single day we negotiate something.  Some things are minor (no, you’re not having your pepperoni and cheese snack today; you can have it tomorrow,) and some things are major (no, I am NOT going to walk around without my glasses just because you don’t want me to see what you did in the laundry room!)  We negotiate anyway.  We negotiate whether we’re going to check the mail at 11:00, or if we want to wait until 4.  We negotiate whether we’re running with the Wii, or using the elliptical.  We negotiate whether we are going to take a bath at 3:30, or if we’re doing it before bedtime.  Timers are negotiated.  Snacks are negotiated.  Bedtimes are negotiated.  We have figured out that if J wants something he will be willing to find a way to let us know, and we will find a way to get him to wait for it.

For the most part it works.  J has attempted to throw a tantrum, but the close proximity in which we function these days has taught him that I know we can’t just succumb to hyperbolic behavior.  Last Thursday J was spectacularly angry, threw a significant tantrum, and then apologized and did his Wii run while arm-in-arm with me.  All because I said “I will accept that you’re pissed off, but I will not accept that you’re being an asshole about it.”  The whole incident lasted ten minutes; the apology was heartfelt and extended for an hour.  We were friends for the rest of the weekend.

Yesterday evening, after J made it clear that it was entirely too hot to leave the house all day, I explained that I had a doctor’s appointment today, and that he and Dada would be going to the DMV to get his ID done.   He looked anxious, but he trusted that I was telling him the truth.  We had to repeat ourselves twenty times over before bedtime, and twenty times over on the ride between here and the hospital (2.5 miles away,) but J accepted the scheduled activities.  I went into my appointment and, for the very first time, sent J off to do something long, boring, and public with just Dada.

You know how DMVs are on a Monday morning.  The line was long, Dada said.  The wait was boring, Dada said.  J was only upset when they took his old ID away from him, but the clerk allowed him to keep it after invalidating it.  An hour later (yes, I know…a minor miracle) they were on their way to meet me, and we headed out to J’s destination of choice: Target.

This is what I have learned about my son over the past two months: he is good company, but he likes his space and time to be under his control.  He is kind and charming.  He is funny and helpful.  He likes being around me, but he also likes being by himself.  The biggest lesson, however, has been that I’m perfectly OK with that.

We have good days.  We have days that, in hindsight, could have been better.  We have days that are definite scrap-pile material.  We try.  Today we succeeded.  In small increments, but we succeeded.  There’s not much else we can aspire to on a day-to-day basis.

We’re fine with that.

 

 

 

This just in…

https://www.theguardian.com/us-news/2016/jul/21/florida-police-shoot-black-man-lying-down-with-arms-in-air

Let us, for the time being, put aside the very real problem we have (in America) with people being shot by the police, and the police being shot by people.  Either way, it is a problem.  Police officers have a job to do, and it is a dangerous job; in the exercise of their obligations, they carry weapons, and -regrettably- there have been several instances of preventable deaths of innocent citizens at the hand of police officers discharging those weapons.  People have reacted to this viscerally.  I don’t just mean by protesting -which we are entitled to do because the Constitution guarantees us the freedom to do so- but by killing and wounding police officers who have been exercising their duties during public protests, or simply while doing their jobs elsewhere.

I am not going to address that aspect of the gun violence that permeates our lives because I feel that this is not the place to do it, but I will address an issue that -as the parent of an adult individual who is firmly placed in the more severe end of the Autism Spectrum- gives me daily pause.  I want to address the issue of training.

Now, if you read this article you will see that the authorities were responding to a 9-1-1 call that stated there was a man in the street threatening to kill himself with a gun.  The young man in question is a 23 year-old in the Autism Spectrum who had wandered off from his group home.  He had a toy truck with him.  A white toy truck.  The young man, obviously, looks like a 23 year-old; he is burly, tall, dressed in the usual jeans and t-shirt outfit that many men his age select in the morning.  He has facial hair, and he looks like a dude…just a regular dude.  He is sitting in the middle of the street, and appears to be paying attention (but not particularly understanding) what is happening around him.  His stance is not aggressive or apprehensive; he doesn’t seem anxious.  He is not crying, yelling, expressing distress in any way.  He is, basically, sitting there with his toy truck in his hand, and we assume that his behavior therapist has caught his attention and was trying to negotiate with him up until the moment the police showed up.

I have been there.  I am sure many of you have been there, too.  Our child (whether young or adult) is determined to do one thing, not really resisting, and we are trying to gently but firmly persuade them that it’s time to do something else.  The person we are trying to communicate with is calm, but won’t budge.  Sometimes they react loudly, and wave their arms to keep us at a distance.  We are trying (sometimes when internally on the brink of tears) to keep calm and do what needs to be done.  Sometimes we are doing this while people stare and judge, and comment amongst them.  If the circumstances allow it, and the child (or adult) is not at risk, we take our time so as not to make the situation worse.  We are thinking of the child (adult,) and we are trying to comply with the demands of the place and population that surround us.  Have I picked J up (when he was light enough for me to do so,) and dragged him away from a dangerous situation?   You bet your sweet ass I have.

I also have patiently sat and waited until I could persuade J to move when it was clear that forcing him would only cause him, me and the rest of the planet severe distress.  The internal dialogue that takes place at those moments can be emotionally draining.

When I look at my son I see a 21 year-old man who weighs over 230 pounds, is over 5’9″ tall, has a mustache and a goatee, has powerful legs and arms.  I think he is handsome, and imposing.  I think he has a lovely smile.  I can tell when he’s about to do something mischievous.  I know he has ASD, and I see it in the way he moves and walks, scans the view while flapping his hands or waving his arms.  He dresses like an average guy; shorts, t-shirts, a hat…

I know the world sees a big dude who can crush them, and he has a weird attitude.  I know this because the world doesn’t stop to think maybe there is something extraordinary about my son.  People have told me they thought he was my husband, boyfriend, brother, or gay friend.  (Yes, someone thought the way he walks indicates that J could be my gay BFF…which I found interesting.  Not insulting, just interesting!)  There are several reactions that come with meeting J: awkward silence, hyperbolic enthusiasm, brief acknowledgement followed by a change of subject, and genuine acknowledgement followed by discreet questions about him.  The last category is not as frequent as it should be, but one hopes that this will change over time.

In spite of our best intentions (and, trust me, we’re just brimming with those,) J can be disruptive and/or difficult to manage.  Sometimes it’s not the right day to walk on a wet surface (the wet surface being the street or sidewalk;) at times it’s the direction of the wind.  There are days when dogs are a bigger problem than others, and -of course- there are flying insects, birds, and that pesky problem known as airborne seed dispersal.  Yeah.  That can make a good day not so good.  I’ve had to escort J home from the pool because a dragonfly touched the surface of the water…and he started screaming.  That J’s data bank includes the dragonflies in Mickey and the Beanstalk…well….

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The point is that I KNOW what I’m dealing with when I’m dealing with J.  I know what strategies to use when he needs refocusing, calming, disciplining.  I know when a situation is under control, and when it isn’t.  I know when to ask for help, but I don’t always know who to ask for help because people are either distrusting, fearing, commenting amongst themselves.  I worry that someone is going to look from a distance, make assumptions, and I will not have the ability (or opportunity) to explain to authorities that become involved what it is that is truly happening.

I have wanted, many times, to call the local police department and ask how they train their officers to interact with individuals with ASD.  I wouldn’t even begin to know how to start. It’s not that I don’t think the police would listen, but I don’t know if they would consider this being approached by an overcautious, busybody private citizen.  I don’t know if there would be eye-rolling taking place.  Some people, regrettably, believe that this would fall under “special treatment,” and think we’re angling for something because we think our kids are “better” than the average member of the community.

All parents worry about their kids.  All parents have fears and concerns.  All parents have something that they mull over from time to time, and then discuss with their kids.  This is true of parents that belong to minorities, parents who live in high-crime areas, parents who are not home when their kids get out of school, parents whose children walk home from school.  It is not less true of parents of adults with ASD.

During the day, school age individuals with ASD are in a more-or-less controlled environment.  When we take our children out shopping, or dining, or walking, or to the doctor, or to the bank the environment is less controlled; we are the ones who are the first intervenors if an unexpected situation arises.  When the school organizes an outing, the people who work with our children assume the role of first intervenors.  I don’t know of a single parent who wishes ill for anyone who works with their child.  If the aides, teachers, therapists, drivers cannot count on being listened to when they explain a situation, what would that mean for the children themselves?

I understand that our social mores are stilted and broken.  I understand that law enforcement officers have a right to be concerned about their safety in the current emotionally-charged social climate.  I understand that private citizens have a right to be scared.  Fear is the overwhelming factor, and it is -more often than not- propelled and supported by ignorance.  Whatever reasons have led us to where we are, my friends, the place where we’re at is bad.

I don’t know how this should be addressed, or if it can be fixed.  I just know that I am feeling a little more trepidation when I step out there.  People are scared enough to confuse a toy truck with a gun so imagine what they would “see” if J is wearing his wrist brace because “it’s a bad day?”

Yeah…

 

Seventeen days in…

Habemus groovus…  Or, in plain English and not that freakish attempt at Latin, we have a groove!  It’s not the best groove, and I’m sure it will be fine-tuned further as time goes by, but it’s a groove nonetheless.

J’s newest obsessions are simple and vaguely familiar: organizing MY closet, saving electricity at all costs (to the point of people suddenly finding themselves showering or shaving in the dark,) and making sure Dada is out the door without fail on days when he’s supposed to be heading to work.

The binder with the breakfast selections is a hit, and we’ve only had issues one morning when Dada was in charge and J got yogurt and pear chips for breakfast.  To hear Dada tell it, J gave him the most amazing WTF look ever.  That’s what happens when mother has a headache and stays in bed until her Tylenol kicks in…

J now has his own apron and chef’s beanie, and he happily dons them when it’s meal prep time.  He has opinions, too.  It’s a little like having Christopher Walken in the kitchen…61659035

This applies to things like mushrooms, garlic, cheese, basil, and chicken pieces.  Pasta, also, elicits a hand movement that beckons greater amounts to the cooking pot.

We have discovered that he sometimes doesn’t want to go out.  It’s not that he’s upset, but he wants to stay home.  Maybe he’s just happy in his lounge pants, or maybe he doesn’t want to be hassled by getting in and out of the car and sitting in traffic.  Sometimes he’s just happy doing whatever it is that he has decided to do.

For the past three days J has been sorting a two-cup container of glass and resin beads.  He does it his own way, and it’s more efficient than the way I showed him for doing it.  He watches movies or listens to music while he sorts, and he lets me come in and look, and then he benevolently waves me away.  When he’s done with that container, there’s a second one of equal size filled with a greater volume of smaller beads.  I don’t know if that will make him happy or not, but we will find out soon enough.

We are learning a little more about how to navigate this post-school world each day.  Some days are easier than others, and some days our nerves are frayed while other days we seem to be fine regardless of the difficulties.  Some days things are truly overwhelming for all of us because, well, it’s three adults living in the same house, and some of us are parents while one of us -in spite of being an actual adult- cannot always be left to make his own decisions.  Other days we deal a lot more easily with the limits that have to be set to make things function properly.

Life is complicated.  We try to find balance at home and things start unraveling elsewhere. We have always been an independent unit; we have not really had a network of relatives and friends supporting us every step of the way.  Yeah, people ask…  Yeah, people call for the holidays.  Yeah, we get an e-mail here and there, but people don’t “get” what this is like here.

Take, for example, a recent family event.  One of Dada’s nephews got married, and I had to repeatedly explain that no, we weren’t going to the wedding.  A) It was out of state, B) if we couldn’t manage to travel as a family for my father in-law’s funeral, why would we then make arrangements for A PARTY, and C) J wasn’t invited.  What are we supposed to do in that case?  Not take J and leave for a few days so we can partake of some social event?  Or take J and find someone to watch him for us while we go to the wedding?  When we said no, we weren’t going, the next question to arise was “well, isn’t Dada coming?”  My reaction, basically, was this…

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I asked Dada anyway.  His reaction was this…

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We sometimes wonder (I mean REALLY wonder) why people don’t “get” why this is not a practical request.  We have actually caught ourselves sitting around at the end of the day pondering this…

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We’ve reached the sad conclusion that people are just not that invested in us.  Not that they have to be, but it would be sort of nice if they put just a teensy weensy bit of thought into why traveling 2500 miles each way might not be something ONE of us wants to do just to attend a wedding.  Seriously, how would it look if my husband of seventeen years hopped on a plane to go to a black-tie wedding at a ridiculously expensive venue with an open bar while I sit at home single-handedly taking care of our 21 year-old disabled son?

It’s not that he can’t, mind you.  He’s had to travel before.  His father’s illness, the funeral, work…he is OK with doing that because, well, how can he NOT go…but do we REALLY think he’d want to go to a party without me?  This is the man who asks me if I want to go to the hardware store with him because we can grab a coffee on the way back, we can talk and hang out.  He wouldn’t enjoy being there stag when he has a wife who is at home trying to negotiate with a person who uses an iPad to communicate his wants and needs.  In what world is this logical???

People KNOW we won’t go.  We really are not particularly social (hello?  I’m the one who waited for the bus wearing a t-shirt that reads “Do I Look Like a People Person?”,) and when we do go to a party we tend to stay together, chatting with each other, basking in the opportunity to not be wearing yoga pants/track pants/t-shirts/slippers.  We HAD to get invited (ah, social obligations…they will be the death of us…just send us an announcement and we’ll send you the same exact gift as if you’d sent us an invite, thank you,) but did they have to NOT add J’s name in there?  Do we really seem like we would show up with Brother Kong wearing a tux and making a spectacle of himself thus ruining everyone’s expensive good time????

Come to think of it…it does have its appeal, doesn’t it?

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So, in conclusion, people don’t GET it.  We don’t live like they live.  We don’t have the luxury of hopping on a plane and showing up for a wedding just because there’s an open bar.  For one: how easy would it be to find a truly trustworthy person to take care of a 21 year-old developmentally disabled individual for a whole weekend?  For another: how would HE feel when suddenly thrust into the care of others so we can disappear for a few days?  It’s bad enough that we have to arrange for someone to help watch him while I’m in the hospital for an outpatient procedure…can you imagine for a weekend????

We are falling into the groove.  We are making this work.  We are figuring it out.  We are still surprised that people are so clueless, and we can’t help but feel comfortable in our isolation.  Explaining, obviously, doesn’t work.  People don’t get IT…

The sad thing is we are starting to think they’re really not supposed to after all.

 

 

 

I might have created a monster????

The new board is a no-go.  We gave it the old college try, and it resulted in such tremendous confusion for J that we threw our hands up in the air, called it a good-enough attempt, and returned to what was familiar and comforting to him.

Call us chicken shits.  We’re fine with that.

The truth is that the old board worked just fine, and we were trying to reinvent the wheel.  J doesn’t want to know what he’s doing today…J wants to know what he’s doing………..

So I simply went back to the drawing board on the organization of his PECS, and -seeing the old board set up with MORE options- it was good for him.  One minor, and yet annoying, crisis averted.

In the past week J has learned to lurk around the kitchen as mealtimes approach so that he can jump in and be my sous chef.  This is working just fine.  Of course, he is left-handed and I’m right handed so I have to remember to work across from him so he copies what I’m doing in a way that makes sense to him.  (I tried turning things around and he didn’t like that…we do what we have to do to make it easier for him.)

Like every other kid who is done with school, J would prefer vegging, but it’s just not in his nature.  As much as he wants to be idle, he can’t stand the idea of US being idle, and so he springs into action.  He leaves the comfort and relaxation of his TV lair to make sure that we are doing something worthwhile, and -upon finding us, egads, being idle-ish, he springs into action to make us bolt into action.  This is, my friends, how at 9:07 this morning I find myself with a clean kitchen, a load of laundry in the wash, another in the dryer, and four (count ’em!…FOUR!) clean bathrooms.

Today is not supposed to be Laundry Day, but autisme oblige and here we find ourselves…filling time with a task that is supposed to fill time tomorrow.  I’m not saying this is more difficult than I expected, but there are glitches in our plan.  And surprise, surprise, right?

I made J a cookbook.  It’s a simple book with laminated instructions for making meals he enjoys.  Our maiden voyage was breakfast, and J felt empowered and happy.  He wants to do EVERYTHING in the kitchen…chopping things is the trickiest task because, sadly, I’ve found a pair of chain mail gloves that will guarantee my son doesn’t slice his finger off while slicing mushrooms, but they won’t be here until tomorrow.  Until then we will exercise extreme caution, but it seems that J is so keen on being in the kitchen that he actually doesn’t want to do anything that might get him banished.

J has started to figure out that slicing mushrooms is something he enjoys, especially since the person that slices the mushrooms pretty much controls how many mushrooms are going into each dish.  Sautéing the mushrooms and sprinkling other ingredients into the pan makes him happy…oh, a little pancetta here, a little onion there…is that fresh basil you’re giving me?????  Well…thank YOU!  And so we end up with these fantastic forays into the world of “cooking is fun, please wait until I’m in the room to do it, mother.”  At this point, I cannot boil water without assistance.  Yesterday J spent five minutes looking at two packages of pasta to determine if he wanted spiral-shaped pasta or rigatoni with his turkey bolognese.  I don’t think I have to go into detail about how he has discovered that garlic bread, when made at home, provides the opportunity to do more things in the kitchen.

This morning, my friends, J almost sang with joy when he discovered that we were having breakfast burritos for breakfast.  He scrambled the eggs, sliced the leftover chistorra (if you’ve never had it, excellent Spanish breakfast sausage!!!,) stirred the eggs until it was viable to add the leftover potato-mushroom concoction from Sunday evening’s meal, and then sprinkled cheese on top with the same sort of flourish a magician uses to pull a bunny out of a top hat.  I don’t know if he enjoys eating because he’s learned to enjoy cooking, or if he’s enjoying cooking because he enjoys eating.  Either way, this is now J’s main source of entertainment.

Laundry, bathroom cleaning, arts and crafts, gardening…menial entertainment.  They pass the time.  They fill a space.  Cooking, on the other hand, is fun and exciting.  And those “chain mail” gloves can’t get here soon enough.

So that’s where we are…I am now the mother of Remy from Ratatouille.  If J enjoyed drinking wine while cooking, we’d be in trouble.  It’s bad enough that Dave Brubeck permeates the room as we’re tossing things in a skillet…that emboldens my assistant.  He wants the volume turned UP!  And he announces this with arms up in the air while smiling at the ceiling fan.

Now, if you don’t mind, I have to come up with something we can cook together this weekend.  The weather might allow for outdoor paella cooking, or we might throw down some Argentine empanadas…that will give him a chance to make dough.  Or a quiche for Sunday breakfast.  Or seared scallops…  Mac and cheese just doesn’t cut it anymore.  The board is full of other minor events, but mealtime prep is where we get creative and excited…

Who’d’ve thunk it!?

 

Fifteen days…

Well, I would like to say that I’m closer to being ready than I was five days ago, and I am…but not as ready as I thought I would be.  Life, as usual, intervenes with the progress of all my preparations, and I find myself fine-tuning even as I go along.

J is happily oblivious to all the planning and re-planning that I’m doing, and he basically ignores all grown-up conversations that relate to the upcoming transition.  Granted, this is in part due to the fact that we have not once used the word SCHOOL in our conversations regarding the matter.  We have become the masters of word substitution.  We have even taken to quoting Pooh’s Grand Adventure: The Search for Christopher Robin and imitating Owl when he says that Christopher Robin “has gone to S-C-H-O-O-L!  [gasps]  Skull!”  In short, we’ve become ridiculous.

J knows something is about to change significantly, and he has decided that, for the time being anyway, he will not let go of wearing his snow boots.  They comfort him.  We’re not going to press the issue because it’s not worth it.

Yes, I know…life cannot always be comfortable for J, but…this I’m willing to give him leeway for.  It’s just snow boots.  If he steps on us, yes, it hurts, but that’s a relatively small price to pay for a little comfort for our son.

While we have not really seen TGG more than three times since he moved out (and, believe me, the times we HAVE seen him have been far from pleasant,) we know that J has acclimated to this change.  The first few days were rough, but we’ve found the balance, and now we can actually mention TGG’s name without eliciting negativity or anxiety in J.  That, my friends, is progress.

Another plus is that we now have a J-sitter…or a J-companion…or a presence that allows us a brief respite here and there.  Well, technically, we have TWO.  A neighbor recommended her dog walker as a potential helper, and -after a brief interview- we invited her and her husband to dinner.  Our helper is a young, pretty med student.  She is barely a year older than year, and we wanted to make sure that both she and her spouse would feel comfortable with the arrangement.  When you are looking for a babysitter, the requirements are of one sort; when you are seeking for a person who will keep your adult son company while you have some “me” time, the requirements are different.  We wanted to make sure that both our helper and her husband knew that we care as much about their comfort with the situation as we care about J’s.

And that’s how we ended up with two companions rather than one.  That is: one afternoon a week, SHE comes over and helps with J, but if we’re going on a “date night” they BOTH come over and hang out with him.  We leave dinner ingredients, and they cook and eat.  It was tremendously comforting to find J sitting at the table eating balsamic chicken and couscous with chard in a totally relaxed and happy mood.

To be frank with you, we had been planning an escalation of food bribes if the first outing didn’t work out: duck, crab, veal, lobster, leg of lamb…  Yes, we are shamelessly in need of a break here and there, and we’re not afraid to go to any gastronomic lengths to achieve it.  We can tell that J is a fixture wherever we go because when we showed up at the bookstore on a Saturday evening without him the booksellers were saying “hey!  You’re on your own tonight!!!!”  We felt compelled to explain that J was at home and happily hanging out with people closer to him in age than we are.

And so we reach fifteen days to the last day…

The list of things is still long.

The level of chaos waxes and wanes.

We’ll figure it out.

Eventually.

Of course.

Twenty days…

J’s school career has 20 days left…

This isn’t, of course, a crisis, but it is important.

Calendars are being re-designed.  Schedule boards are being refurbished.  Schedules themselves are undergoing a major restructuring.

The change won’t be bad.  It will, however, be change.  Transitions are never easy, and we don’t expect this one to suddenly break away from the existing and well-established pattern.

I am letting you know because you’ve been peeking into this page for a while.  Actually, you’ve probably stopped altogether.

Life has been hectic.  Life has been more interesting than usual.  We have grown accustomed to all this.  We are, after all, veterans of transition, alteration, reinvention, crisis, chaos, maturity, regression.

So…

Twenty days…

Not counting weekends and an election day when schools are closed, we will sing the Yellow Bus Song twelve more times.  Ok, it’ll be more than that…we all know it’s necessary at least ten times each evening preceding a school day.  We will sing the Bus Song at least 120 times…on twelve separate evenings.

The PECS for BACKPACK, BUS, IPAD BAG, LUNCHBOX will be retired.

The PECS for teachers and aides and therapists will be phased out.  J’s new occasional companion has been added to the mix, and he now sees her on Tuesday afternoons until we start adding hours.

A new way of living our day-to-day life is being initiated.  We will do it on a trial-and-error basis for the first few weeks, and then we’ll have the new, and more permanent, groove of everyday from here on end.  No, it won’t be set in stone.  Parents of kids in the Spectrum know that what is stone today can become dust tomorrow.  So we will make adjustments to a new groove as we go along.

Twenty days…

A minimum of 120 Bus Song performances between now and then…

Life out of the system…

Life as a household of three…

Life without the net of “it’s only for the summer,” and “Christmas break lasts only a couple of weeks.”  From here on end, and until a permanent slot appears in a program for developmentally-disabled adults, this is the way it goes…

Twenty days…

and lots and lots and lots and lots to do before then…

Dear Bobby and Grace…

A lot has happened in the past month and a half, and I’ve been -I admit- cocooning and trying to navigate the changes.  My father died on a Thursday in mid-February, and the world has been a whirlwind of unexpressed grief since then.  TGG moved out to start his life as an independent household elsewhere, and that hasn’t made matters less complicated.  We’ve managed, mind you.  We don’t think TGG’s absence is a bad thing for anyone, but helping J adjust has not been the easiest task to handle.  Absence, it seems, has been the operative word lately.  My father’s absence from this world (although expected,) and TGG’s absence from our household (although anticipated) have brought on change that requires emotional fine-tuning.

I’ll say that J has gone through several stages of grief.  He skipped Denial because there was no denying TGG had packed up and left without having a conversation with his brother; the Anger went fairly well.  Target (the last place where J had seen TGG working) became an Angry Place, and we suddenly (and, thankfully, briefly) relapsed into impatient tantrums when at the store.  Never mind that it was J who wanted to go there; grief doesn’t really make sense at times, and our reactions to it don’t have to make sense either.  The Bargaining came in the shape of a very strict flight plan when visiting Target (even at J’s request.)  Depression, like Denial, was skipped and we went straight into Acceptance.  After a month of not seeing TGG, J felt awkward and uncomfortable when we got home from an errand to find our oldest packing things up into his car.  The hug was similar to Michael Corleone kissing Fredo Corleone…the lines had been drawn, and TGG now knows that J felt betrayed, not so much by the “moving out” as by the not having a conversation about how things were going to change and why.

Let’s say that TGG doesn’t owe J explanations.  Explanations, however, would have been nice.  TGG made the classic mistake of thinking that J wouldn’t understand, and J -obviously- felt slighted and will take his time in finding a happy medium between the way things were, and the way things are now.  He is, however, finding a new “normal” here, and we live in a household of three quite contentedly.

Change looms over us.  It hasn’t been easy, but it’s getting done.  We are looking at the brighter side of absences.  My father, I tell everyone, is no longer suffering the overwhelming helplessness caused by a stroke.  The last few months of his life, within the framework of the last two years, were grueling for him and his wife, and there is a strange sense of peace that comes at the tail end of loss.  No, I’ve not yet reacted to it, thank you.  I’ve almost  caught myself about to crumble, but day-to-day life suddenly takes over, and I refocus.  It annoys me that I have to refocus, and I have promised myself that I will let go of the need for some control soon, but it keeps getting re-scheduled due to the impending end of the school year (the last school year ever,) and the re-structuring of our home life.  I have been trying to make sure that J understands that “being us three” is not a tragedy.  It’s just different…  This takes a lot more effort and energy than it would for a “regular” family.

I tend to introspect about that, as you well know.  I think about the whole “regular” family idea, and I try to make sense of how it would be “easier” for us to be one.  The conclusion I reach, again and again, is that I don’t know how it would be if we weren’t as we are.  We don’t know what life without Autism would be.  We’ve never really lived that way, but we’ve seen it done.  Take away the minivan full of kids being carted to and from extracurricular activities, the sleepovers, the vacations at Disneyland, the hopping on a plane to go on a family trip, the Christmas mornings, the once-a-year visits to the doctor, the tantrums at the store because a Lego isn’t being purchased, and you have our life…  Well, leave the tantrums at the store.  They don’t usually have a reason, but there are store tantrums…and they are judged like the tantrums of the neuro-typicals aren’t because, in our case, they are obvious reflections of a distinct inability to parent.  (It couldn’t possibly be a disorder that affects neurological development that causes them, could it?)

On Friday I read, with the same interest as anyone else who has a child in the Spectrum, that Robert De Niro and Grace Hightower have a child in the Spectrum.  I read this in the context of Mr. De Niro asking to include, for the first time in the history of the Tribeca Film Festival, a documentary called Vaxxed: From Cover-Up to Catastrophe.  The documentary was directed by Andrew Wakefield, and Mr. De Niro was hoping to start a conversation regarding what is a very personal matter to him and his family.

The backlash didn’t take long to start.  I admit I was not particularly impressed by Mr. De Niro’s willingness to give Wakefield yet another platform from which to spread his views.  Having Mr. De Niro, who is respected and admired in his field, give credence to a documentary of this nature would support the arguments used by the anti-vaxxer movement to justify skipping immunizations.  Pulling the documentary, after reviewing its content and finding fault with it, supports the conspiracy theories espoused by the anti-vaxx community.  It has become a damned if you do, and damned if you don’t quandary.

This is what I want to say to Mr. De Niro and Ms. Hightower…

Dear Bobby and Grace,

We know how you feel.  This unexpected bomb of inscrutability was dropped in the midst of your lives, and you’ve been trying to figure out why since then.  We’ve all been there.  We all wonder.  Some of us blame it on one thing; some of us blame it on another.  We are all being, whether we realize it or not, judged by people who don’t have this situation, and there is -even if it’s not called THAT- a pointing of fingers because we vaccinated our kids, fed them gluten and casein, had a glass of wine before we knew we were pregnant, lived near contaminated water, didn’t feel overjoyed when we realized it wasn’t the flu but rather a baby we were not yet ready for, and so on and so forth…

We all want to have the conversation.  We all have, in one way or another, tried to have the conversation.  I don’t know about you, but I have often been questioned as to why my son is in the Spectrum.  People often have offered explanations and reasons they have read/heard/surmised from other sources.  If you’ll notice, a lot of these people who have all these opinions don’t have children in the Spectrum.

It’s hard, I know.  Your child, whether people realize it or not, becomes a poster child for what you wouldn’t want your own child to be.  They don’t vaccinate “because of Autism.”  That totally sucks, you tell yourself.  You’re wondering why there can’t be a conversation and you realize that it’s because of the anger.  People who don’t have children in the Spectrum are angry that they might end up with one if they prevent communicable childhood diseases.  It’s a “conspiracy” because we, the “dissatisfied,” “burdened” parents of “damaged” kids, don’t want to be the only ones.  Big Pharma won’t rest until it makes ALL OUR KIDS damaged.

I don’t know you, or your son, but I know he’s not “damaged.”  He’s just the way he is, and it could be that there IS a link between a hereditary sensitivity to certain environmental factors, or that it’s just hereditary, but he’s your kid and that’s all that matters.  If he is, as the press has speculated, 18 years old, your work is about to change.  I’m sure your resources provide opportunities for him that are not par for the course with other individuals and families.  Still, the game is changing for you, too.  Your life, I know, hasn’t been the same since you were “told.”

We out here know.  You have resources we don’t have, but we are all the same when it comes to this “thing.”  We worry about the same exact crap, even if it is to different degrees.  Your heart, Mr. De Niro, was totally in the right place…because, like the rest of us, you want to know, and you want a conversation, and you feel like your hands are tied a lot of the time.

We know.  We hear you.  Our lives, just like yours, are full of constant route recalculations, fine-tuning, what-ifs, oh-nos, uh-ohs, unexpected alterations, quirky developments, head-scratching moments.  We live to the fullest, and some days it’s not in a way others -who don’t have “this” in their lives- can comprehend.

We are not less.  We are not bad parents.  We are not to blame.  We do our best to open a door that will help others understand, but…the world is designed for other things.  We have, in a way, adjusted our behavior, our worldview to that of our children, and we discover that we sometimes can’t quite communicate in a way that others understand.

You are getting flogged for one thing, and thanked for another.  You chose the give a quack a platform and you were slapped for it.  You are now being thanked for pulling that rug out from under Wakefield’s feet.

Yet, this morning, your day was just as it usually is with your son.  You have navigated, negotiated, tried to help, tried to encourage, tried to follow whatever goals you and your son’s team have decided to work on…

Life goes on…hobbling some days, and bouncing others.

We know, Bobby and Grace.  We know.  We are now listening to you.  Tell us what you think.  Help us say what we need to say about these young adults in the Spectrum…

You can totally do this, guys…