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!?

 

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Today is the first day of the rest of your life…

Well, it has finally arrived.

It’s May 18th.

First day of no-school forever.

FOREVER!

How ready are we?  What option do we have but to BE ready?

We have done all we can do, and we will take it from here with a grain of salt.  The BUS and BACKPACK PECS are put away.  The new order of things will slowly take root.

J is ready, I think.  He knows what’s up, and maybe he’ll be in denial for a while, but we’ll figure out how to help him adjust.

It isn’t like we haven’t experienced a lot of change over the past five years.  We were a four-boxing glove family.  We were a Rasta hat and scrum cap family.  We were a Risperdal family.  We were a Slinky family.  We’ve reeled in the bells and whistles and are left with “sleep with them” boxing gloves, “wear to bed” Rasta hat and scrum cap.  No Risperdal.  Slinky…well…Slinky’s a “person” to J, and I’m sure he’d quote Lilo and Stitch if we tried to ditch Slinky.  Slinky is part of J’s ohana

We’ve made progress.  Little by little we have reclaimed some semblance of “control,” and we are pretty firmly set on the parts where our lives function very well.  But change is inevitable.  We cannot control change unless we opt for absolute stagnation.  And stagnation is not something we encourage.  School had to end.  J’s teacher wanted to stretch it out a little, but I knew if we fell into that trap we would just be going against all our preparation for the transition.  All that “it’s until the 17th!” and the countdown would have been for nothing, and J would be confused.  So I said no…let’s stick to the plan.  Change is necessary.

Change, however, seldom comes in singles.  Another relocation is in the cards for us.  Health issues that, thankfully, have been discovered very early in the game are on the calendar.  So transition is the name of the game, and change is the card we drew from the pile…

We’re old pros at this, so we’ll do what has to be done.

J left yesterday morning with his THANK YOUS and his little gifts for aides and teachers.  He had a good day except for a brief portion during which Voldemort (the one person who gives him grief) made his life miserable.  It passed.  It was too important a day to let anxiety linger, and the situation was managed.

At 3 PM I sat on my usual spot, and waited for the bus.  The same lady that usually parks in the middle of the road (blocking the bus driver’s view and thus preventing J from walking independently from bus to mother) parked in her usual spot.  Here I was, one last time, trying to reinforce “you can walk without me,” and there she was doing the absolute opposite for her neuro-typical child.  Here’s the kicker: she drives to the school, makes sure he gets in the bus, and then dashes home to wait for him.  He’s five.  I get the concern, but…this was the one last time to reinforce the “walk towards me…I’m here…you’ve got this!”  That I had to navigate around her car and (several times in the past) cars pulling into the neighborhood’s shared driveway nearly hit me is inconsequential.  But I digress…

Change is in the air.  OK…change is cramping our shoulders, making us frown, giving us pause.  We know as we get older this process of perpetual readjustment and fine-tuning will be more difficult, but we understand that the world we live in is one of constant change.  Gone are the days when people were born, grew up and died in the same town.  We are so far from “home” that it never ceases to amaze us.  Oh, the times we’ve stopped and said “HOW did we get HERE???”  And now it seems we’re on the way to doing it all over again.  The only plus-side we’ve come up with so far is that we no longer have to agonize about school district suitability, but services, etc. are still important.

Last week our main concern was today, and now we’ve added several more things to the list.  But J is happy.  J is taking it all in stride.  J will, like water, fall into whatever container we pour him in, and that’s a good thing.  We will choose a good container; we will, as always, make him a priority.

So here is today…a few hours ago it was just tomorrow. And J is happy with the way this particular morning is going.  Dreary, yes, but a good morning nonetheless.  It is raining and it is gloomy, but we are both in our pajamas (don’t judge) and Dada’s off to work.

Our plan today is simple: he’s already  made his breakfast (with less than 45% guidance and assistance from me,) and then we’re going to do our chores, exercise, and learn the fine balance of not getting into each other’s hair on a more permanent basis.  School breaks, in hindsight, look like piece of cake now…but we’ll learn…we’re going to figure this “we’re all grown-ups sharing a home and with very little to intervene with our day-to-day routine thing.”

The rest will fall into place, right?  Eventually?  With a modicum of stress?

As with birthdays (after a certain age or stage in life) today we don’t feel at all different from yesterday.  That might be a good thing.  Maybe it wasn’t meant to be a monumental shift.  Maybe it’s just like going to the optometrist and finding that one lens makes the images crisper…

Yeah…

I think that’s it…

Let’s go with that…and let’s put the “comfort item” snow boots away…

shall we?

One week…

I could, given the proper encouragement, spew a long list of imprecations that would colorfully fill in the spaces created by our anxiety over the (seemingly) sudden arrival of May and, with it, the official, irreversible and final closing of J’s school years.  Don’t encourage this, please, I’ve become more descriptive and uncouth as I’ve watched the clock tick towards this moment.  Our Webster’s Third New International Dictionary sits on the desk, waiting for me to dig through its pages to find a new BIG WORD to send through the air, cleaving my nervousness in half.

I know it sounds like I’m thinking this is D-Day, or like I’m about to embark on some tremendous undertaking…like Mount Rushmore, the Suez Canal, the Pyramids, Machu Picchu, or the Great Wall of China.  I’m just transitioning an adult from school to no school.  Piece of cake…not a box-mix cake, but piece of cake nonetheless…

Whether you attribute it to Flaubert, van de Rohe, or Warburg, the whole “God is in the detail” comes to mind right now.  And then it morphs into “the Devil is in the detail” because little monkey wrenches keep being thrown into the gears, and we realize that each task completed and refined is the springboard to another.  Every day brings another thing we “forgot about” to our list.  It’s the little things.  It’s the stuff that we wouldn’t normally expect to have to address…

As I work my way through the normal schedule of MY day, my mind keeps popping with ideas of things I have to do.  Is the schedule board good enough?  How do we phase out the smaller boards that used to address getting ready in the morning, after-school activities, packing our school bag?  How do we translate the contents of his lunch box into the panorama of eating at home every day?  This will not be a big-scale social activity (well, as big as the scale can be in a SpEd classroom,) and we have to figure out a better way to integrate socializing into J’s at-home world.

A step in the right direction has definitely and firmly been taken.  J now puts his new friend, MedSchoolGirl, on the board without prompting.  He likes her.  They still are a bit hesitant around each other, but that’s the way these things work.  (Cue Getting to Know You from The King and I.)  The people down at Five Guys welcome J every Saturday like Elvis has entered the building; he likes that…it’s like Norm and Cliff have entered Cheers at the same time.  If this is Saturday, it must be Five Guys…after Kroger, of course, but the sea of people is greater there, and J goes mostly unnoticed.  Tuesdays we see the baby and his mom, an exercise in reliving the toddler years with a lot more exhaustion and a lot less strife involved.  J and his nephew continue to dance around each other, trying to figure out how they feel about each other’s presence.  So far so good…

The search for a gym buddy continues.  TGG is out completely.  If we see him once a month we consider ourselves lucky.  He doesn’t call.  He texts.  We’ve grown accustomed to the new status quo and, quite honestly, we don’t think that J would feel the same comfort he used to feel around his brother.  That is strange to us, and yet it seems a lesson in how we all are -to a degree- expendable to this person who lives in such a limited world.  You fill a need, you have value.  You leave, your job is passed on to another who will take it.  It’s not that J doesn’t love, but J doesn’t have time for wallowing in thoughts of abandonment and loneliness.

I know he is trying to figure out why there is a sense of loss surrounding these next few days.  There is a saying-goodbye quality to all the planning, and it is not the saying-goodbye he has learned to live with over the years.  There is no “we’ll see you at the end of summer,” and no “you’ll see some of us at summer school.”  There is “we’re going to miss you.”  There is “time has gone by so fast!!!”

In the meantime, I am working on different conversations from the ones we’ve had over the years when he got off the bus.  I no longer will have to ask “how was your day?”  I probably will because I’ve always had very good customer service skills, and I want to know how J has felt about what we’ve done and the way we’ve done it.  And I will keep tweaking the processes and fine-tuning the routines.

We know each other pretty well.  We are, and I hate to say this because I’ve realized that it’s not ENTIRELY true, a close-knit bunch who try to be there for each other.  We know a lot.  We are not so tightly-woven together that there isn’t room for surprises, but we’re also not oblivious to the idiosyncrasies of each other’s fears, strengths, hopes, concerns, aspirations.

J simply doesn’t want to not be a part of something.  I know this about him.  He is happy being by himself, but he doesn’t want to be lonely.  He is happy at leisure, but he doesn’t want to be bored or useless.  He knows how long days are, and how long they can feel.  This is true of all of us.

So we are down to the wire.  It’s the bottom-half of the ninth inning, bases are loaded, two outs…

It’s been a long, good season…

 

 

 

 

 

 

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.