This dining room isn’t big enough for the two of us…

Ice, ice everywhere (you thought I was going to say “baby,” didn’t you?)  We had a definite Keystone Kops moment this morning when I finished getting J ready, Dada got the car loaded, and then (and only then!) did I notice there was a missed call on our phone.  From the school.  At 6:28 a.m.  I looked at the TV and Dada had been watching BBC news so there would be NOTHING on there about a 2-hour delay.  I called our message service, and what played was one of those generic “hold music” recordings with a “press * to listen to your message” and more music.  And then nothing.  I called J’s teacher while Dada insisted on getting in the car and heading out because it was already 6:35 and he didn’t want J to miss the bus.  J’s teacher confirmed that the freezing rain had compelled the district to opt for a delay and I, crazy woman that I am, flashed the porch lights on and off to no avail.  Dada turned onto the main road and drove to wait for the bus.

Remember that cell phone we bought with the big keys???  The one we bought to replace the one we couldn’t find and then that one miraculously appeared once we’d gone through the expense of a new (cheap) one?  Yeah…well…it was left here…at home…I called it and heard it ringing upstairs.  As fast as my fifty year-old knees could take me, I bounced up the stairs and forced TGG out of the shower.  “Go tell Dada to come home!”  Nothing says “I’m hurrying” like the sound of freezing rain hitting the glass on the patio doors, and TGG walking around like one of the extras in The Walking Dead.

At ten minutes to seven, everyone pulled up to the house and I asked WHY do we have cell phones, and WHY don’t we look at lights flashing, and WHY were we watching the BBC when, for crying out loud, we made a point of saying “it’s cold and icy and nasty out there?”  Then came the round-robin acceptance of some degree of guilt in the whole fracas: TGG heard the phone ring, but didn’t want to get out of bed; Dada didn’t think taking the phone to the corner was necessary; I admitted I should have checked the TV first…  While all this was happening, J quietly unpacked all his school stuff, took down BUS and BACKPACK from his schedule board, changed his clothes, and then announced he was staying home.  When I told him “but there’s school in about a couple of hours!!!” he looked at me like I was nuts, opened the curtain and looked at the ice outside.  I called the bus driver, his teacher, and set about the usual morning business.

Throughout the next couple of hours we got reports that roads were closed due to accidents; Dada and TGG called to say “wow, that drive into work was interesting,” and J parked himself in the dining room to watch Fantasia even though he has his own TV room.  He has since moved on to The Rescuers, and -surprise, surprise!- he knows where the button is to make the sound reverberate.  Even I forget where the box is, and we have only used it for movies like The Right Stuff, the original Star Wars trilogy, 2001: A Space Odyssey, and anything that has explosions in it…  When I sent Dada an e-mail informing him of this, he told me that he has figured out what to get J for his birthday because finding a townhouse with a dining room big enough for all of us is not practical.

I was allowed in the kitchen to make lunch.  Not only did he kick me out of the kitchen/dining level, but he also asked me to make shrimp for him.  I was allowed in the kitchen once more to make some cream of spinach that I will put in a container for later this evening.  My attempt at sitting down to watch the hippos in Fantasia was met with a giggle quickly followed by a deadpan NO.  When I started singing along to “R-E-S-C-U-E…Rescue Aid Society” I was asked to leave the premises and take my furry cat with me.

Even as I type this I’m searching for an affordable sound bar we can get J for his birthday.  You may ask yourself “why let him win this particular battle?”  Well…in truth I had been telling Dada that J turns up the volume in his TV room because the speakers they install in all these flat screens are too tiny, and that is done with the sole purpose of getting you to bow down to the need for a sound bar.  The sound comes out of these very small speakers, and they are designed in such a way that they face away from each other, leaving the sound to travel towards the walls rather than to the person sitting at a discreet distance from the screen.  We even drew diagrams explaining the strength/weakness of each argument, and we reached an impasse.

The deciding factor is, of course, the e-mail stating “your son has closed the curtains, turned off the lights, planted his butt on the love seat, and put his feet up on our fake-ottoman and is watching Fantasia upstairs.”  The truth is that J likes being alone, but he also loves quality sound, and listening to Ponchielli’s Danza delle Ore upstairs made him very happy…I could hear him giggling and humming along.

I’d really better get on this research then…he’s moved on to Ferngully: The Last Rain Forest, after serving himself some hummus and pita bread, of course.  And he didn’t even hesitate to do it without any help.  Sigh…

 

The benefit of doubt is preceded by maternal panic…

J was so happy when he got home today that it was quite a sight to behold.  He was smiling…beaming, in fact.  He was full of energy and happiness, and I even texted TGG to tell him “whoa, dude, your brother is absurdly happy.”  I even e-mailed Dada, and texted his teacher asking “WHAT happened at school today that he’s so gosh darned happy????”

Half an hour later I went to get him for his snack.  He was sitting on his bed, halfway through changing his clothes, and he announced HURT.  I looked at his forehead and realized that, atypically enough, it was the LEFT side that was red and abraded.  “What happened?????”  He said HURT again, and pointed to the Neosporin and Band-Aids.  I asked him if he was OK, and he said OK.

It’s never good when your kid will just repeat what you’re saying when you’re looking for answers, but this time I sort of calmly panicked.  How does one calmly panic?  One allows one’s mind to gallop uncontrollably as one tends to J’s forehead.  To say that he looks like Shirley Temple’s dad in The Little Princess when he is in the hospital after returning from the Siege of Mafeking is an understatement.  His whole forehead is covered with Band-Aids…

When I was done with his forehead, J repeated -quite forcefully- the dreaded word HURT, and grabbed my hand to put it on his left ear.  The ear is slightly swollen, and there is an abrasion on the top where the ear is joined to the scalp.  The panic then set in with even more calm enveloping it…by then I was scanning the room to figure out if, perhaps, J had hit his head against a door frame because of a seizure.

I made him change clothes quickly, and led him downstairs to eat his snack.  I checked his pupils, and made him stick his tongue out.  He insisted on Neosporin on his ear.  I dashed downstairs to text his teacher (all the while cursing my habit of taking things to their proper place when he gets home) from the iPad.  I opened the Proloquo and asked him what had happened; he chose HURT, KICK, EAR, FOREHEAD.  Not good, of course.  I heard the messenger ring and I checked: J hit his forehead because another student was having a hard time and he was asked to leave the room with all other students.  Apparently it was bad enough that they could hear him next door.

Why I wasn’t told about this right off the bat, I can’t tell you.  At least I know now that it wasn’t a seizure and I don’t have to worry excessively, but you can bet your sweet butts that I am worried.  It’s never easy reducing the medication, but when you suddenly have an incident like this crop up well over a week after it’s been started, and he’s -presumably- leveled off…well…it shakes you.

J is sitting in his TV room, feeling better and armed with an ice pack that he applies to his ear and forehead as soon as I open the door.  He wants kisses.  He wants hugs.  He wants to make sure that, under no circumstances, I will deem this reason enough to keep him from going to school tomorrow.  I won’t.  I won’t keep him home, but I will make sure I check in during the day to see how he’s holding up.

I don’t think this was anyone’s fault.  I think we are all susceptible to triggers, and something influenced J’s behavior today.  He’s really fine…a little on the “I’m such a ham and I’m chewing the scenery when I realize I have an audience,” but only to the extent that it won’t interfere with going to school…

But, yeah, I totally panicked…and not just when I realized the Band-Aid Fairy hasn’t made a delivery this week.  I wonder what one has to put under one’s pillow to get more bandages???

 

Stealth and cellphones…and watches…oh my!

J has a thing against cell phones.  I think this aversion has replaced his aversion to watches.  Or maybe not.  Perhaps it has attached itself to his aversion to watches.  Dada has a lovely Ministry of Silly Walks watch (what better way to note the passing of time at work than watching John Cleese bend his legs in all impossible directions,) and J will insist on it being taken off the moment that Dada walks into our home.  Should Dada not place it in its proper spot in the drawer where he keeps his ties, J will bury it so far back into any other drawer that it might take days to find it.

Yesterday, after searching high and low (far and wide, top to bottom, back to front, in and out, logical and illogical) for Dada’s cell phone, we broke down and bought another one.  Now, don’t think for a moment, please, that we’re talking iPhone or Android or any other fancy type of phone here.  We mean “oh, look, it’s fifteen dollars and the key pad is HUGE!” cell phone.  We mean pay-as-you-go, and “wow…fifteen dollars and it has a camera?????,” or “well, it has only ONE rather annoying ringtone, but IT’S ONLY FIFTEEN DOLLARS!!!!!!!!!”  That’s the kind of cell phone we’re talking about here…

Before I go into the next part of the cellphone saga I MUST make an aside.  In all sorts of movies and TV shows, even in books, you hear that this or that criminal has used an untraceable disposable phone.  Gus Fring would snap them in half and toss them in garbage cans in Breaking Bad, and Jack Bauer in 24 goes everywhere with the same number regardless of how “dark” his level of undercover is, or how rogue he has gone…  Cellphones mystify me.  I cannot fathom walking around with that thing in my hand like a lifeline, but they’re an in-case-of-emergency tool we’d “lost.”  Setting the darned thing up (even for a pay-as-you-go) is more convoluted than all these story lines in all these TV shows would indicate.  Why they have criminals tossing phones left and right when you have to give name, address, e-mail is beyond me.

But I digress…

After spending about 20 minutes trying to open the box wherein the cellphone rested in its plastic sarcophagus, I spent another half hour entering all the identifying information for the unit (because the keypad might be huge, but the stickers with all the info require a magnifying glass,) and then another ten minutes trying to get Dada to come up with a PIN and password he will remember easily.  By the time the thing had been activated, I was exhausted and asking myself WHY do we need a cellphone.  The deed is done…we are once more connected to the ether and can be reached if TGG cannot find the “right” kind of lettuce at the store.

Today is MLK Day so J is home.  They’ve already canceled Presidents’ Day to make up for the snow days, and a still-far-off date in May (that would have given us an extra long weekend) is also gone.  TGG left the house early so he could get to work with plenty of time, and Dada was heading out when I heard a very loud, hearty laugh from the hallway closet.  This could mean just about anything, people; we’ve found cats sleeping in the bowl where we keep change in there; we’ve found a shoe in the canvas grocery bag basket…

But I knew, with the most absolute certainty, that Dada was laughing because the cellphone we’ve been searching for (the Holy Grail…Eldorado…Jimmy Hoffa…Amelia Earhart…Noah’s Ark have deserved nearly as much attention) was there…sitting neatly, visibly, nonchalantly on the shelf…  We met in the dining area, two adults struck by the understanding that J is a mastermind at the game of cellphone-hiding.  That the young man had been stealthy enough to replace the phone AS WE ALL SAT THERE HAVING COFFEE is indicative of Crouching Tiger, Hidden Dragon-like abilities.  Perhaps -and we might never be able to confirm or deny this- J can levitate, or he has Harry Potter’s invisibility cloak.

Dada suggested, of course, that I activate the newfound cellphone, but I would have to go through the whole rigmarole again…trying, on top of everything, to figure out where I can put it that J won’t find it and hide it once more.  I know this sounds like an abundance of caution on my part, but if you’d “lost” and “found” as many cellphones/watches as we have, you’d be asking yourself if you need a J-proof vault.

After Dada left for work, I went about the business of making beds, setting J up with work to do, and doing the administrative tasks that are required by my role as the family “paper person.”  At around nine o’clock I decided to get J’s new cube-unit from the garage so he could assemble it, and as I walked by the kitchen I realized that the cellphone and its charger had, surprise surprise, vanished.  “J!!!!!!!!  Come here, please!!!!!”  There’s a look on your kids’ faces that tells you a) they are guilty, b) they are trying to NOT look guilty, c) they know they are caught, and d) they will do their best to wriggle out of whatever situation they’re in.  J had that EXACT look on his face.

I asked about the cellphone, and he looked at me as if I’d just asked the most amazingly nonsensical question.  He even patted his non-existent chest pockets and looked at the ceiling (as if, somehow) the cellphone had decided to float away.  I tapped my foot twice and asked again.  With drooping shoulders, J tramped back to some remote corner and returned with the charger in one hand, and the cellphone in the other.  “This costs money, my friend,” I said.  He shrugged and rolled his eyes.  “No, no shrugging!  This costs money and I will NOT keep buying more just because you hide them and then, poof, bring them back.”

I stomped up the stairs to our bedroom, closed the door behind me, searched for a discreet-enough outlet, and plugged the cellphone in to charge.  I could NOT have been quieter…

Neither could have J.  When I opened the door, there he was.  Nimble, quiet, stealthy, with more strategies than Machiavelli himself…or Droopy to my Wolf.  The jury’s still out on that one…tex3

I quietly turn 50…

Yesterday was my fiftieth birthday.  Three people (who know and love me, and understand the cringe factor involved -for me- in being feted for birthdays) sent me heartfelt and discreet sentiments over Facebook.  My husband, who knows, loves and understands me, cuddled up to me and did his best to control the urge to say a too-early, too-enthusiastic happy birthday.  After ten minutes of him purring more loudly than Miss Pipa, I said “oh, go on…you’ve been nice enough so far!!!”

It’s not the age, of course.  I hope you know that.  It’s the attention.  I like to be wallpaper in the background, and people tend to think one wants confetti, streamers, balloons, a parade.  I was more than thrilled to have a nice little lunch with Dada at a place where I ran into a lady who was celebrating her 90th.  If that doesn’t put things in perspective, I don’t know what will…

So…here’s to fifty, and to the thirteen days remaining until J turns 20.  One year and 8 days since he last ate Ramen noodles…

 

We arrive at Friday without any catastrophes…

J has had a good week.  A little more anxious than we’d grown accustomed to since the last med reduction, but not at all aggressive, angry, desperate.  We all adjusted, and everything has gone well.

It seems that we have overcome yet another hurdle, and it’s all very encouraging.  J now takes ¼ of the medication he was taking when I started writing this blog.  If that isn’t a happy bit of news, I don’t know what it is.

And that brings us to the fact that J will be twenty in 15 days.  Twenty!  It’s amazing!  We thought we were headed for disaster when he was fifteen, and here we are: in one (slightly battered, mildly dented) piece.

What lies ahead?  Well…we need to have his wisdom teeth extracted before he turns 21.  There’s a fun project for you.  We are not looking forward to that, but…it has to be done.  This is going to be an exciting, nerve-wracking year…

So…seven days on less med.  We’re still standing.  We’re still here.  We’re doing well.  And J is happy and healthy.

More to come over the weekend…

 

Day Three of lower dose of med…planet continues to spin as usual.

On Friday we took J to his psych appointment, and -FINALLY!- there was a significant amount of praise for his weight loss.  Needless to say the kid was pleased as punch, and his parents were not too shabby in the happiness department either.  Wearing all his clothes (three shirts…it was cold!,) and shoes, J weighed in at a beautiful 232 pounds.  That means that our J, stripped of all his clothes, weighs under 230 pounds.  Compared to the highest recorded weight, I’ll take this and dance a little jig while I’m at it…in fact, we all danced a little jig, and J giggled with pleasure as we drove away from the doctor’s office.

On Saturday morning (as cold a morning as we’d been warned by the forecasters,) we started giving J half the dose of Risperdal he’d been taking so far.  We are down, ladies and gentlemen, to a quarter of a milligram each day.  Five years ago this would have seemed like a far-off goal, and yet here we are…splitting pills in half for a kid whose XXL and XL pajama pants are entirely too large.  All our expectations have been blown out of the water, and we are amazed, impressed, and overjoyed with the place where we’re at right now.  J, believe it or not, is very much aware of the incredible feat of SOMETHING that he’s achieved, and he is pretty proud and happy.  I cannot say I blame him!

As is usually the case when we are reducing the medication’s dose, we are all rallying around J to help him cope with the effects of a different chemical equation coursing through his body.  We’ve noticed the usual anxiety, hyper-focusing on things, and irritability, but J seems to have learned over time that he can help himself when these things happen.  We had a brief convo Saturday morning, and we determined that (since we were all stuck indoors because of the extremely cold weather) we would have to work together to alleviate J’s anxiety in different levels: there’s the part where the weather made school close for several days last week, the level where he had a doctor’s appointment on Friday (an iffy situation always,) and the medication not being dispensed in the amount he is accustomed to.  We all made sure that we checked in on J frequently, gave him attention when he wanted it, and refrained from hovering when he wanted to be alone, and generally tried to keep him in the loop of the rest of the household’s activities.

Yesterday, when his body finally started fully realizing that there was less Risperdal making its way through him, J was a little more anxious, but we took him for an outing, had a nice lunch, and he felt more relaxed.  Of course, that might be because of the pin-up girls…

Well, we like libraries and bookstores, and we make no bones about it.  We have so many books that we’d be embarrassed if we thought this is a bad thing.  J, as you know, loves his books, too.  He likes walking around the local Barnes and Noble, and he looks at the movies first, and then travels to the Children’s section and looks around for what to add to his queue of bedtime stories.  Yesterday’s selection was If You Take A Mouse To The Movies; the main attraction of this title was the lovely 50% sticker, and the title mouse’s relation to the Moose to whom you give a muffin.  Dada had found a 2015 calendar for his office, and I had found a book I have been interested in purchasing for a while, but hadn’t found in paperback yet.  We always take a walk around the bargain book section.

Having worked at a bookstore (as a barista, a book seller, and a cashier) I know that bargain books are dirt cheap because they sometimes come from a faulty printing, or from too large a batch that didn’t sell.  This has never stopped us from buying bargain books; I can deal with the misspellings as long as I know I didn’t pay thirty dollars for a hardcover.  My willingness to forgive these transgressions greatly increases in the face of a massive reduction in price.  Mind you, I wouldn’t purchase my favorite book, especially if it’s a literary classic, from the bargain book bin, but I would rather pay a lot less for a bestseller if I can help it.

The point is that J was happily hanging out around the bargain book table while we looked at some books on Italy, The Louvre, and such until he saw this:

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And then our son (our nearly twenty year-old son) walked up to the register and boldly placed If You Take A Mouse To The Movies and The Great American Pin-Up to the cashier.  Having worked at a bookstore I know booksellers and cashiers are pretty much unfazed by anything.  There’s something very deep inside that is 100% in favor of Freedom of Speech when you take a job where you will be asked for titles that might be embarrassing, subversive, risqué, inappropriate…I could still see the cashier’s eyebrow twitch slightly as she smiled at J.  It is, I admit, a little weird to see two such disparate books together while the customer stands there looking as happy as if he’d just found a million dollars in his pocket.  I shrugged and said “today’s juxtaposition of developmental disability paired with a healthy male is brought to you by the letter J.”  Our cashier then smiled broadly and said “that is too cool!”

We drove to the grocery store with chirps, giggles, peals of laughter, and a even a little joyous humming from the backseat.  The exuberant welcome J got when he walked into Five Guys for his one-on-one lunch with Dada while I did the grocery shopping was just icing on the cake.

Let’s be realistic, though.  J will never not be plagued by anxiety to one degree or another.  J will never be a paragon of conventional normalcy, or of a well-balanced individual who doesn’t need to take a step back from time to time.  J will never learn or understand like other people.  J will always have to do things at is own pace, in his own style…  But isn’t that true of each of us?  Aren’t we all just a tiny bit “off” when compared to the on-paper version of what a normal human being is?

I like to think that we’re all just bobbing along as best we can, and that J has simply met with a little more turbulence that I would have hoped.  I see that he tries every day to regulate his role and his reaction to the world around him, and that it works more often than not.  This doesn’t mean that he won’t have a crappy day at school tomorrow, but it means that he might not have such a crappy day.  And that’s fine…

The world will keep turning…

Day Three of the Big Chill…

Beware warm January trends that require no jacket, and give you the impression that this winter will be a piece of cake.  Fruit cake…heavy, dense, impossible to digest, best used as a doorstop fruitcake is what you’ll probably get.  I speak from experience…

I don’t know how many times I overheard Dada saying “how about that?!  Not a flake of snow all December!  It’s been downright warm compared to last winter!”  If there is one thing I’ve learned over years of being with this man is that he SHOULD NOT be allowed to talk about the weather.  Every single time he comments on how it’s too warm, too dry, unusual for the time of year, BOOM!  We get a triple-dose of whatever should be expected, and the weather forecast turns into an exercise in grotesque hyperbole.

On Tuesday morning we got Kierkegaard’s call and school was delayed for two hours, and then canceled.  Tuesday evening we got the call delaying school for two hours, and at six-thirty a.m. yesterday it was canceled.  Last night we got a THREE hour delay.  We all exchanged looks and said “that’s a closing waiting to happen.”  This morning, with the wind howling and the forecast calling for subzero temps, we looked at the map our local weather guy puts up with color-coded closings and delays.  Amid a sea of red, indicating school districts that closed their operations for the day, two or three yellow areas indicated hold-outs clinging to their 2-hour delays.  We couldn’t help but wonder if superintendents sit watching the screen to see who will be next to cave, and who will be the last superintendent standing.  Do they give out awards at the end of the school year?  Judging by the stubbornness that leads to a three-hour delay on a morning when the temperatures are expected to hit -20 with the wind chill, one would suspect this is a “thing” among school district heads.

J is taking the whole thing in stride.  I think last year we experienced enough school closures to teach him that this is par for the course where we live.  He asks for his Bus Song, but he can tell when we’re singing half-heartedly, and we observes who’s calling on the phone’s Caller ID, and our movements around the schedule board.  With a sigh of acceptance, J moves to gather laundry, take out puzzles, and line up chores we can do…if that’s not maturity, I don’t know what it is.

And, speaking of maturity, tomorrow is going to the psychiatrist day and we’re talking about reducing J’s med one more time.  I think we’re ready.  We will have, of course, a few days of rough-patch behavior, but we don’t expect (fingers crossed, knocking on not-compressed but ACTUAL wood, doing the sign of the cross, muttering a fervent prayer and wishing on a star) any difficulties aside from the usual “why is my body chemistry slightly off????”  I’ve read the notes of our previous forays into reducing the Risperdal, and I’m confident that we’ll do well…

(Let those not be famous last words, please…)

The truth is that J is maturing, and that it’s a joy to witness this.  It’s also true that I am grateful that J is becoming more and more his own person; as I age, a little of the pressure is taken off me and he takes control of more of the things he wants and needs.  At the same time, some of the feelings of “I could be doing more” return.  I think every parent experiences these feelings, and I think parents of autistic individuals know these feelings all too well.  I know J likes being by himself; it’s easy for him to find entertainment, and he relishes being so self-contained.  We all do our best to encourage him to spend time with us.  I know that J is ready for “togetherness time” when he shows up offering his DVD of Daddy Long Legs, and TGG has encouraged him to do the same with Danny Kaye’s Hans Christian Andersen.

A few mornings ago, TGG saw a bit of Hans Christian Andersen on TV while he had his breakfast before going to work, and I told him that I’d bought it for J for Twelve Days.  TGG, of course, acted as if it would be a supreme chore to sit through the whole movie, and dragged his feet when J took it out to play.  An hour later I walked into the TV room to find the boys cuddled under an electric blanket and happily watching the movie.  I brought a bowl of popcorn and they looked like the two little boys who used to watch Toy Story together so many years ago…and then J kicked me out of the room because, well, I’m mom, and mom isn’t allowed to interfere during “togetherness time” between the brothers…

For Twelve Days, TGG got J a Five Guys gift card, and J was over the moon with joy at being able to eat there (because he loves the food and the music they play,) and because TGG explained that they’d be using the card together.  On the Sunday after Christmas, J climbed the stairs to TGG’s room and announced that they were going to lunch.  This made us all laugh because it was totally spontaneous.  The following Saturday the same thing happened.  TGG says that not only is J well-known among the employees, but he also has a favorite spot from which to watch the food being prepared.  Once they have their order, J chooses a table and they eat and hang out together.  It’s nice to know they enjoy each other’s company, but can function individually the rest of the time.

In other news, we’re considering the possibility of traveling with J to Puerto Rico.  I have to visit my parents, and this requires going by plane.  J hasn’t been on a plane since 1999.  The world (and security measures) have altered a great deal since then.  The eternal quandary of how J will deal with a situation that is run-of-the-mill for others is always in play, but…we’ll see…

Before any of that, of course, we reduce the med…again.  We will brave the cold, the mild anxiety of being in the doctor’s office, and we’ll see what happens next…

Stay tuned…