What’s a little plateau among friends????

“Begin at the beginning,” the King said, very gravely, “and go on till you come to the end: then stop.”
― Lewis Carroll, Alice in Wonderland

It arrived in the mail last Saturday, and we read it (as we usually do) with a bit of tongue-in-cheek solemnity.  The psychologist who evaluated J on a very, very cold Friday two weeks ago sent his report regarding his condition.  Newsflash!  J is autistic.  He also exhibits a moderate level of mental retardation.

Stop the presses.  I need to take a deep breath before I let that sink in…again.

Sarcasm doesn’t help, I know, but it does bring levity to the inevitably thick feeling that always comes attached to the constant confirmation of what one knows.  In a nutshell, J is a (take out your salt shakers, please) very well-mannered, self-aware, pleasant young man who is autistic.  His score would have been higher if we didn’t collectively work as hard as we do to improve his skills; I don’t regret the efforts we’ve put into making his life (and everyone else’s around him) a little easier, even if it might impact what services he can receive as he gets older.

I’ve filed the report with all the others.  I read it, yes, quite thoroughly, and I noted what was different (even if slightly) from previous ones.  Every report indicates that J has reached a plateau, and every plateau that is recorded is different from the ones before.  In my humble opinion, J simply takes breaks before climbing a little higher, stepping a little farther ahead.  I am not intimidated by plateaus as much as I am intimidated by professionals’ certainty of a plateau being the end of the road.

Our satellite navigation thing always says “recalculating.”  I am not daunted by recalculations.  A little annoyed by the time it takes to achieve a new “flight pattern,” but not daunted at all.  I grew up in the days of foldable maps you got from the AAA or the garage down the street.  As a matter of fact, I was raised in a society where directions are far from technical, and people don’t seem to get lost…we simply find a different way of “getting there.”  Back home we often give directions by saying “take the second road on the left after you get to where the old oil drums are on the right side of the road…not the ones painted blue…it’s the ones painted yellow.  When you take that second road you’re going to see a tree.  My cousin’s car hit that tree about five years ago on a night when it was raining and the tree is gouged but it still flowers every summer.  A few feet farther down the road past that tree, there’s a driveway…don’t go into that one…you have to keep going…going…going…and there’s a dip in the road and it forks almost immediately…stay on the right…you’ll see a fence…”  It’s not recalculating so much as narrating your way through a maze as you go along.  The system has worked so far because J is so much more than the sum of his parts…

The report comments on J’s outfit and his facial hair.  This was funny, but it was also meaningful. J has a very distinctive style that he feels very proud of, and he chooses his clothes, and he has a say in how his hair is groomed.  The psych, by the way, didn’t notice J covers his ears because J has improved vastly in this area…to the point where he didn’t give the impression that he has any sensory issues other than touching things to determine their texture.  The whole “he’s got hypersensitive hearing and he covers his ears to regulate” flew over the entire staff’s heads because J behaved like the type of person that doesn’t do that around strangers.  I wonder what would have happened if he’d still been attached to his four boxing gloves…

All in all, the results of the test were to be expected.  When the scores were compared, J’s teacher and I answered in pretty much the same way.  Our scores for J were exactly one point apart, and -after discussing it briefly once the report had arrived- we reached the conclusion that that one point counts for very little.  She sees his social side more than I do because he has peers he interacts with over there, and I see the self-help side more than she does because I have only ONE person to deal with whereas she has a classroom full of them.  J is consistent, and he is by far more advanced than the last evaluation he was subjected to indicated at the time.

Every assessor assesses progress, and then assesses that it cannot possibly continue.  They see Super Mario Bros. when they should be looking at Donkey Kong.  Once in a while a barrel comes out of nowhere (usually from the hands of a gorilla that is trying to waylay us,) but we keep trying…even when the game gets reset.  Once in a while, we put down the controller and forget that we’re playing.  Once in a while we start over from scratch.  Once in a while we forget we have a console to play with, and we return to the basics.

So we’ve hit another plateau!  So it’ll keep happening over and over and over again.  So this is the story of our lives, and we have the same diagnosis we’ve had a million times over.  The prognosis is the same, and yet from a different angle.  We can’t explain the many plateaus to every diagnostician because we will be looked at like we’re imagining things.

The thing is this: we do a lot of pedaling through mud, but the mud splatters and gets moved, even if we don’t move forward.  We use up a lot of energy; we get tired; we get frustrated; we wonder why we’re doing it; we throw our hands up in the air and say “what the heck are we doing???”

We’re not stopping.  Muddy bike, gorillas with barrels, diagnosticians who see only one picture instead of the album…  The reason J looks like he’s not as badly off as he should be is because we don’t stop.  The reason J keeps hitting plateaus is because we don’t stop.  We move sideways when up and forward isn’t possible.

We’re not stopping…

 

All territories belonging to the king…

When TGG and J were very young, I had read Dr. Seuss’ Yertle the Turtle to them so frequently that I could recite it without hesitation.  For one who doesn’t easily grasp abstract concepts, J seems to have taken to heart Yertle’s dictum of being the ruler of all that he sees.  With very little hesitation and absolutely no qualms, he happily marches towards home every single afternoon and, after starting his snack, changing his clothes, putting away his school things, and gathering his movies and iPad, removes himself to his inner sanctum.

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Gone are the doubts about whether J will like his ginormous bean bag or not.  Gone are the hesitation and worry about whether he will feel isolated in the Bear Cave (as TGG fondly refers to this room.)  Gone is the concern about J being bored.  If anything, J is all too comfortable and all too happy in his extra room, and he allows us in for brief periods of time, but it’s very clear (and not to be forgotten) that it is his kingdom.

Oh, he loves us.  We know this.  He positively BEAMS when we walk in, but we’ve yet to determine if this is pure, unadulterated love or simply “ah!  A minion arrives!!!!”  We’ve yet to encounter the contempt of The Caterpillar when Alice approaches, even though J definitely looks as at-home on his bean bag as The Caterpillar looks on his toadstool.

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While navigating from his bedroom to this most delightful of areas in the house, J can turn into the Mayor of Halloweentown, turning on a dime from happy to annoyed if we try to stop him to help with something.  

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It’s been made clear to him, however, that the proximity of the J-Cave to the laundry room has a built-in obligation to monitor all loads, incoming and outgoing, that pass by his door.  He accepts this burden with as much grace as he can, and that’s not saying much.  The other night he gave me a look of total irritation and annoyance when I said “but aren’t you going to help me FOLD these clothes???”  With a heavy sigh he sat on the floor, a look that said “well, I guess…if I must…but it’s under duress that I do this.”

I don’t blame him.  I wish I could go into that room when he’s not home and just curl up.  I wish I had the lovely heated blanket with red velvet on one side and sherpa lining on the other.  I wish I had the three sources of light that can take the mood from “let’s get ready to rumble!!!!” to Tchaikovsky’s Arabian Dance with just a few clicks.

It would be very easy for J to go overboard with that room.  That is: if J wanted to hunker down and not leave the room unless we forced him to, it would be easily done.  We can hear him through the baby monitor (and, thank goodness, he can hear us,) and he has a bathroom nearby.  Turning that room into a refuge he doesn’t want to leave is very easy, but J has figured out that too much of a good thing (like sleeping through the night there) is not advisable.  Every night, immediately after his shower, he calls roll, waits for TGG to get home and, with nary a complaint, packs his things and moves up to his bedroom.  Behind him stay the darkened room, the neatly folded blankets (he has the heated throw and another blanket so furry and soft it’s like hugging a Golden Retriever puppy,) and no mess for anyone to clean when he leaves for school in the morning.

He knows (and we’ve got the PECS for it) that on Saturday and Sunday mornings (as well as on holidays,) he can go down to the room and get settled, allowing anyone else who wants to stay in bed a little longer to rest uninterrupted.  He knows that meals are taken at the table, and that he is responsible for taking out the trash and dusting and wiping.  He knows (because I told him this morning) that he has to vacuum his rooms today, and he’s put it on the board as a reminder.    After years of ignoring it, the PECS for BEAN BAG now figures prominently in the rotation, and he has taken to skipping his “candy stop” at the office in order to get home faster…

J loves his whole new house.  I think he feels he’s seen it grow from an empty lot into the full-fledged home it is now.  That he has a soft spot for his rooms (which are neat as a pin and completely organized and decorated) over the rest of it is understandable.  The process of getting the whole thing done on time, and of adjusting to the changes in his routine while we were getting settled in was not easy for any of us.  If Dada and I could take time off from our schedules, we would; we have been falling asleep on the couch a little too easily.  J’s booming voice, calling out names to make sure we’re here and not off somewhere gallivanting, is the only thing that jars us awake.  We know this whole thing took its toll on him, too.  We have, several times now, found him neatly tucked in under his blanket, pleasantly snoozing on his bean bag while waiting for TGG to get home from class.  It’s a nap, not a way to assign this room as his bedroom…as soon as we say “hey, J!  Bedtime!” he leaps to his feet, gathers his things and heads up to bed.

In the downstairs TV room, we hear him giggle, hum, sing, laugh, talk to himself.  In the bedroom upstairs we hear YELLOW BUS SCHOOL.  As we tuck him into bed, turning off lights and fluffing up pillows, the downstairs room seems forgotten.  YELLOW, he says.  YELLOW, we repeat.  BUS, he adds.  BUS, we confirm.  SCHOOL?, he asks.  SCHOOL, we answer.  And we say goodnight and step outside and through the door it cycles again twice more…YELLOW BUS SCHOOL, YELLOW BUS SCHOOL, accentuated by yawns.

His world is clearly defined.  A king of two kingdoms…one where he sleeps and the other where he has fun.  One is the cork tree where Ferdinand likes to smell the flowers.  images

The other is where the wild things wait for him.  

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No matter…all over the house, he IS The Emperor…

 

And it stretches a little further…

I have the nasty habit of not reading newsletters that arrive in the mail.  It’s not that I’m not interested, but they are not at the top of my list for reading material on the way out of the mail room.  The first thing I do is open the bills and read those; if I’m going to feel faint, I’d rather do it in a narrow room where I won’t be exposed to the elements.  The second thing I read is any personal mail that arrives (which is NONE because people no longer write letters,) and then I leaf through magazines or articles while I wait for J’s bus.  After all that, I might pick up a newsletter and glance through the pages.  I admit I do not sit down to pore over them with too much interest.  THIS has to change…

On Saturday, as we were out and about running errands with J, my husband popped out of the car to go into a store J wouldn’t be interested in and I stayed with J in the car listening to the radio.  Ozzy Osbourne was playing and, to tune him out, I picked up a school district newsletter I’d left in the car over a week ago.  There were the usual articles about notable students earning scholarships and awards, plans for construction, a detail of Special Education laws as they have been amended in recent months (something I was unaware of and promised I’d read this week,) and the district calendar for the rest of the school year.

Remember Spring Break?  

Remember how it was last week?

Remember how today is Monday?

There’s no school today.

Yeah.  The look on J’s face when I told him was priceless.  You’d think I’d told him that Tigger had gone postal and killed every living thing in the Hundred Acre Wood.  You’d think I’d told him that Mr. Potato Head did, in fact, leave Mrs. Potato Head for Barbie…  He had the same look we saw on Luke Skywalker’s face when Darth Vader let drop the bomb that he is “HIS FATHER!”  

And then Dada climbed into the car and asked “why the long faces?”  I showed him the calendar.  He looked a lot like Bob Hoskins in that last scene from The Long Good Friday…(oh, just go to youtube if you haven’t watched the movie.)

This morning I sat down (quite early) and updated the entire family calendar using the school district calendar as reference.  I am currently composing a note to send tomorrow asking if certain dates (that seem suspiciously unclear) mean “early release” so that I can be ready for them.  I need to strategize this issue more finely…I don’t want to sit in the car giving bad news to a kid who already feels he’s been put-upon enough by having to hang out with his mother.

Oh, J loves me.  I know this.  He’s just reached the point of saturation, and I’m cool with that…there’s only so much one wants to do with one’s mom when one’s seventeen.

Easter was generally quiet.  J spent a whole four hours (spread out throughout the course of the day) without his hats on; he also walked down the stairs and asked for BREAD without anyone having mentioned the word.  He got Hawaiian Sweet Rolls for his trouble…when he wanted more, he didn’t get any because we now expect him to accept NO with as much grace as he’s been showing.

J wanted to go out on a drive yesterday and we took him to the bookstore.  I think there were only five other people there so J was comfortable with being able to move around at his leisure.  He went to the Children’s Books section and, spinning one of those little display carousels, he found a Barbie book that appealed to him.  Barbie and the Disney Fairies and Princesses are his favorites because they look…well…bodacious in their cartoon-like way.  He has his swimsuit calendar in his room and that’s all well and good, but J lives in a world where there is a built-in childlike wonder…hence the crush he has on Sleeping Beauty and The Little Mermaid (when she has legs…oddly enough the sea shell/mermaid’s tail thing doesn’t really appeal to him.)

J chose the Barbie book and wanted me to carry it; he was saving face by handing it to mom.  I told him “dude, you want a Barbie book and that’s totally cool, but you’ll have to carry it yourself.”  He rolled his eyes at me and wandered away for about 25 feet before turning around and heading back to the same display.  Barbie dressed as a rock star might have struck him as kitschy because he put that book back and opted for Disney’s Alice in Wonderland.  After ten more minutes of exploring bookshelves and tables, we headed to the registers.  

Has anyone seen the book The Golden Hat: Talking Back to Autism by Kate Winslet, Margret Ericsdottir, and Keli Thorsteinsson?  As a general rule I am skeptical about celebrities putting out books about disabilities.  If they are fundraising for their own non-profit, I tend to arch an eyebrow (ok, I CAN’T arch an eyebrow…I push my brow up with my finger…and try to channel Vincent Price or Christopher Lee to very little effect) and move on.  I stopped for this book…I leafed through it…I bought it…

My suggestion: go to www.goldenhatfoundation.org and take a look.  Read about Keli and his mom, Margret.  I am going to look for A Mother’s Courage: Talking Back to Autism which is a film about these tremendously exceptional people who, in essence, are not terribly different from other families with an autistic individual in their midst.  

You all know how much I worry about whether I’m doing enough.  That won’t stop.  I’m going to worry until my last breath, but now -thanks to the past week’s progress and this book that I cried over last night- I know J’s listening as I’ve long suspected and hoped and feared and wanted and encouraged and…

Yeah…you know what I mean.