Fighting the rising tide…and failing

We knew the weight would pile back on once the Risperdal returned to the mix, but it is nonetheless frustrating to see it happen.  We feel like semi-failures.  I say semi because we do all we can, and we know it…

Of course, the other part of the semi is that we wish we could do more.  J exercises every day, eats prudently-ish (I cannot say he is a role model for not eating anything he shouldn’t, but there is not a trace of salt-laden Ramen noodle, glow-in-the-dark-powdered-cheese macaroni, and so on…  He gets veggies every day, he has a limited amount of cheese, and still here come the pounds, forming a suit of armor around him.

We can tell he is hungry.  We can tell part of it is the Risperdal.  We know some of it is the appetite of a 22 year-old male body.  In order to control his weight in the way we wish we could drastic measures would be required: a ridiculously low amount of calories, a tremendously hectic pace of exercise.  It is, sadly, unrealistic.  We are hoping that the warmer days ahead will allow us to take him for walks on top of the exercise he does in our garage.

This, of course, will only go so far to help us keep his weight under control.  We are still on the “J’s wearing an XL instead of a L” portion of our frustration…we want to keep our frustration at that level.  Last evening, as we sat in the Urgent Care waiting for J to be seen (more on that later,) we were pondering whether he needs a whole milligram of the Risperdal, or if we’re just comfortable with that dose.

Did we go from .5 to a full mg because we’re chicken?  Or did he really need it then, but no longer needs it now?  Since we’re seeing the psych on Friday, I will pose this question. Before then we will do much inner monologuing, much discourse…  There is a certain degree of desperation that sets in when your child (regardless of whether he’s built like a  linebacker, or not) is hurting himself.  You want it to stop.  You might make choices at that moment than you wouldn’t in other circumstances.

Why are we thinking this now?  Is it just the weight?  No, not really.

Yesterday J wasn’t feeling well.  He wasn’t feeling well, and he was going out of his way to prove he was fine.  It was his left ear, see…and he is VERY TOUCHY about his ears.  Many years ago he had to go to the ENT to have a piece of earplug removed from each ear.  That didn’t go well.  At the school (never mind who the teacher was, or why he made such a stupid decision…regardless of whether he won Teacher of the Year for the state,) they had broken an earplug in half, and pushed it into J’s ear.  They were wedged in there pretty solidly, and the removal process was not painless, and it certainly did not lack in drama or trauma.

So our son was being stoic, and I knew something was wrong.  We had a wee bit of an argument.  I discovered how strong he really is, and NO, he didn’t hurt me, hit me, push me…he simply stretched his arm out to block my way (I was trying to Proloquo my way into a doctor’s visit) and I COULD NOT MOVE HIM…  There was no violence, no aggression, no anger…just sheer determination a la Gandalf that none shall pass…and none did.

Of course, J realized that he had done something wrong, and he then hugged me (thus proving his strength once more,) and said he was SORRY.

Anyway, long story short: I saw blood when I gently rinsed his ear with hydrogen peroxide.  A quick glance with the otoscope told me that, yes, there was something wrong in there…  He has an ear infection and, once he realized that it wasn’t going to go away just because he wanted it to, J accepted a visit to the doctor.  We did have a bit of an argument.  It was more along the lines of “I want to help” SCREECH “listen to me” SCREECH LOUDER “will you listen to me??” SCREECH AND HOWL “come on, dude…sit here, and look at me” HOWL SCREECH BYEEEEEE until we ended up huffing and puffing in opposite directions to calm down.  There wasn’t, however, any SIB…and the anxiety that TGG (code name Kylo Ren…seems apropos, no?) causes him is being managed positively.

When we both came down from the argh moment we were having, and it was not easy because one party was dealing with worry and urgency while the other was sorting through anxiety and stubbornness, I explained that I wanted to help, and asked if he trusted me.  We called Dada and off we went.  A promise of a trip to the grocery store didn’t hurt, let me tell you…

We are home today, and he is happier than he was yesterday.  I know his ear still bothers him (I don’t know WHY this child has so much wax in his ears, or why this particular ear got infected,) but he knows the antibiotic will help.  That is enough for him.  He insisted on doing his elliptical (to the tune of The Sound of Music, a switch from Fiddler on the Roof…maybe because it’s Passover?  He wants to give Tevye a break?,) and he has been in a nice mood all day.  We worked on vocabulary, and we did some chores.  I’m sure we’ll work on a pending project after lunch…

There you have it: the kid is gaining weight because of the med, the parents feel guilty, I’ve learned not to try to move the immovable wall that is my son…

We’ll see about the med reduction.  Yesterday’s medical semi-crisis was a lot more manageable than I would have expected before we went back to the med.  I am sure that, stubbornness and anxiety notwithstanding, J can manage himself better, but it’s a subject for the doctor to ponder with us…

 

November’s last gasp…

Rain, rain and more rain.  It was a cuddle up and stay in his room morning for J, but his mood continues to be good.

The only thing I’m struggling with is how tightly he straps his wrist brace on; I tell him there has to be some wiggle room, and he refuses…respectfully.  I understand that compression is a soothing resource for him, but I worry about circulation. Once in a while we find a task that will require both hands and no brace, and we make sure that his hand moves around and blood circulates freely.

One of the happiest aspects of having the med back in his life is that J has returned to the kitchen to help.  Last night he helped sauté mushrooms, bacon, garlic and potatoes…it was lovely.  Not only was he actively involved in making dinner, he was smiling and joyful throughout.  Unless you’ve experienced surly, dissatisfied J you have no idea how wonderful it is to see him pointing at herbs and spices that he wants to sprinkle on what he’s cooking.

It being “baked goods week” in the bedtime story rotation, last night he had The Little Red Caboose read to him.  Dada goes off-book on that one, too.  J laughs and laughs.  We hadn’t heard that a few weeks back when the story was read to him.  He is not a barrel of laughs, mind you; he is not in a perpetual state of “hey, dude…life is AWESOME!”  Our son is not drugged out of having ups and downs.  Our son is now open to not being surly and moody, and grumpy and self-injurious all the time.

Now that Risperdal has entered the picture once more, we are working on J’s nutrition plan.  We know the med will make him gain weight, and we want to work on helping him regulate this as best we can.  Exercise is a big part of this; as long as we can control diet and exercise habits to the degree that his blood pressure stays at a healthy level we will be happy.  Right now his routine alternates between the elliptical machine and the Wii.  For the elliptical machine he gets on and watches a movie.  He’s usually on there for a whole hour unless he’s not really into it.  The movie has to be a musical, of course; yesterday he switched from Mary Poppins (a lifelong favorite) to The Music Man, which he has owned for a while but never really wanted to watch until now.  I have to say that Robert Preston and Shirley Jones seem to have charmed him because he was actually on there for an hour and fifteen minutes, giggling and laughing all the way.

When we do the Wii, we also do weighted balls, and resistance bands.  Mind you, J’s movement is limited, as I’ve mentioned before, but he enjoys the exercise.  We are not training for the Olympics here; we are, however, keeping our bodies moving and socializing at the same time.  Sit-ups, as I mentioned, are tricky because J doesn’t like to be flat on his back, but little by little we are adapting them so he works his abs, and leaves his comfort zone slightly.  I will not force him to do something that is scary to him, or that causes him anxiety, but I will try to soothe him into more effective positions for the intended purpose.

Since gloomier-weather days are upon us, we will be indoors more and more.  This has its downside, and we are hoping that, once we relocate, we will be able to provide J with a house that has an area that allows him to be “outside” while still being “inside.”  We spend a lot of time on Zillow and Trulia looking at houses in our potential new locations.  Thankfully, screened-in porches are not unusual there, and neither are fenced-in backyards where we can grow our garden.

We are, as usual, approaching this like D-Day.  We are studying the job market, the availability of services for J, commute times, accessibility of shopping for basics (Dada jokes that Target, Michael’s and a Five Guys are musts…but we know this is not entirely realistic,) and the affordability of homes in each area.  We have a list of things we want in a home of our own, and granite counters and stainless steel appliances don’t even figure in it.  We wouldn’t want a septic tank, but that’s still a negotiable point; we’d also like a gas connection in the kitchen…I hate glass- and ceramic-top stoves, but will live with an electric stove where I can see the burners and my pots and pans don’t slide as they get hotter.  Those are trivial requirements compared to what we want for J: a bedroom, an area for his daily activities, a nice bathroom with a tub and shower, and a space outside.

We don’t have to look at school districts anymore, but we do need a hospital or urgent care close enough in case of an emergencies.  We don’t have to worry about daycare, but we would like a park, or places where J could go and enjoy some outdoor time when he can see people other than us.  We would LOVE a place where there are opportunities for a day program for him.  If this all means we take a huge pay cut and simplify our life to the most basic things, so be it.  For J’s comfort and ease of adjusting to such a huge change, we would love to find a house that doesn’t need anything major done before we occupy it, or during the first year of us living in it.

Of course, it’ll be March before we make the formal first steps to achieve all this.  J’s dental work comes first, and we need to figure out what the underlying causes for his recent spate of anxiety and SIB are before we commit to uprooting our lives and relocating.  There are, of course, those “ifs” that we must keep in mind.

We end November in a more hopeful note than we had at its beginning, and we enter December with a list of caveats.  We have plans, and we have hopes and aspirations.  Their modesty, compared to what we had before now, makes them no less important than they deserve to be.  It’s all about the little by little, the one foot in front of another, the journey of a thousand miles, and the focus of our lives being where it has to be.

Deep breaths, November.  Inhale…exhale…you will soon expire, and we’ll still be here…breathing…doing our homework.  ALL our homework.

 

It keeps you (sorta) running…

J isn’t an athletic sort.  I think anyone who sees his hefty frame, and watches him walk (gambol?) to the mailbox can tell that he’s more awkward than not.  His toes turn slightly in, and he doesn’t necessarily keep pace with anyone who walks with him.  Neither can anyone keep pace with him.  There’s a bit of a skip, and a bit of a sway.  He looks joyful when he’s walking, but he doesn’t look athletic.

J only actually runs (the proper definition of “run”) when there’s some sort of thing that freaks him out; dragonflies, moths, butterflies, dogs, birds, or any other imagined threat will make him break into a trot, canter or gallop.  There isn’t, let’s face it, a single chance in this world that he will ever excel in track-and-field events.  He cannot keep up a proper pace, and his breathing is laced with laughter and humming.  He sometimes runs out of breath and coughs, all while smiling broadly and laughing.

J running is reminiscent of the screaming boy in Robin Hood: Men In Tights, or Phoebe Buffay jogging in Friends.

As you all know, if you’ve been reading this, J is a fan of using his elliptical machine while watching musicals.  I have to leave the garage because this is a thing he likes to do by himself.  Whether he’s watching Guys and Dolls, The Sound of Music, My Fair LadyOklahoma!, Gigi, South Pacific, or The King and I, I am not allowed to burst in and sing while he’s working out.  I get a firm (but broadly smiling) BYE!  While out on our walks, I am his personal jukebox, and I take (of course) requests, but while he’s exercising…nope…not allowed.

J alternates his elliptical machine workout with his Wii Fit.  This, my friends, has been tricky.  A) The Wii Fit isn’t smart enough to know that it’s dealing with a person who doesn’t understand some of the instructions, B) J has trouble fulfilling some of the requirements of the correct form for the exercises, and C) running was something we had to do with him whether we wanted to or not.

Ah, yes…aging is not easy, friends.  Aging after you were an extremely active youth who had very little respect for all the fine mechanisms within one’s body is a pain in the ass.  Our knees (oh, our knees!) creak, crack, snap, squeak, and make us yelp.  There are days that, as with life in general, easier than others.  On those days, we are as bouncy, flouncy, pouncy, trouncy as Tigger himself.  Other days are laced with groaning and dread at the thought of running.

It was on such a day, not that long ago, that J insisted on running with the Wii Fit, and I had to accept that, unless the Wii Fit was the thing to use, exercising wouldn’t happen.  After slathering myself with Tiger Balm (which promises to become the fragrance that my body exudes as I age further) I told J “we’re going to figure out how to run with this thing.”

When I say “figure out how to run” I really mean it.  J, left to his own devices, will get the Mii to stand there while the clock keeps time, and every other Mii in Wii Fit Island passes him while looking over a shoulder.  So teaching J to “run” (something we all basically take for granted) had to be done.  Stability, something to anchor him, was the key.  The first time (after the Tiger Balm and some Tylenol,) I ran next to him as he held on to…drumroll, please…a stepladder!

Look, it’s not the most gracious running you’ve ever seen.  It’s nowhere near a cheetah, a gazelle, or Usain Bolt.  The pace continues to be choppy and less than consistent, but now J runs with the Wii Fit, and he listens to his music while watching his Mii being waved at by his relatives’ Miis.  The musical selections are eclectic: some days he starts out with Lou Bega’s Mambo No. 5, and works his way through Christina Aguilera’s What a Girl Wants, and sometimes he’s bouncing around to Todd Rundgren, The Spice Girls (don’t tell him I told you that,) Beck, The Cars…  He started running for five minutes, and now he’s up to 30 minutes.  He covers about five miles in that time.  He sweats and drinks lots of water.  He laughs as I do the chores in the kitchen and dining room, or take care of the plants in the driveway.

Like I said: not the most elegant runner in the planet, but he works at being fit.  He knows he’s doing better than we (the old, creaky people) are doing in that department.  He actually stands on the doorway and giggles when he sees us doing our run in the evening before we cook dinner.  He peeks in on us, and shakes his head as if saying “that’s all you’ve got???  HA!”  And off he goes to set the table for dinner, or to get things lined up for dinner prep.  J will never be thin, or graceful.  J will always go into interpretive dance when telling me if he wants to do the elliptical or the Wii Fit.  Saying RUN sounds more like “WUHN,” but I can tell from his arm and leg movements what he means: expansive back and forth with deeply bent knees means elliptical and musical, and a quick back and forth of close-to-the-chest arms, and tiny, quick steps means Wii Fit and iPod.

We are, like just about everyone else on the planet, following the Olympics, but not with the TV…we know who has medaled by reading the news and following the medal count.  We know the greatest athletes in the world are out there achieving great things.   And then there’s Robel Kiros Habte, the Ethiopian swimmer who has received attention for being the least Michael Phelps‘-like swimmer in the competition.  Like Florence Foster Jenkins, he is probably the best example of doing what you do because you love it, because you want to, because you have a right to be there with everyone else.

Not everyone will live up to what they see in Michael Phelps.  THAT is why he IS Michael Phelps.  How long did it take for Michael Phelps to outdo Mark Spitz?  The thing is that the chubby kid, the uncoordinated kid, the awkward kid, the clumsy kid, the asthmatic kid, the kid who is afraid of water have as much right to dream, and maybe their dream won’t be to BE Michael Phelps, but rather to BE there, too.

So, yeah, J runs…sort of.  He doesn’t win medals outside of our home, our garage, our milieu (limited as it is.)  But he runs.  He didn’t before.  He does now.  You do what it takes, and you should be thrilled when it works out.  I know we are.

Live…travel…and learn…

We are back from our trip to D.C.  We are in one piece.  We are satisfied with the results of our journey.  This shouldn’t be construed as “it all went smoothly.”  First and foremost: J had fun. Second: we had fun.  Third: animals are not J’s thing.  I’ll get to the rest of that in a moment.  For our first family vacation in thirteen years, we did pretty darned well.

The kid who two years ago would eat only Ramen noodles and mac and cheese tried every single food item we ordered at restaurants.  He ate guacamole without picking out the “interesting” bits that he could see in it.  He ate his tacos as they were served: with lettuce and chopped up onions and chilies in them.  There was no turning down a meal, or a taste of someone else’s.  He tasted everything we offered him, and he ate all meals with gusto.

D.C. is a walking town.  None of us had ever been so we were going by the impression we got from maps.  Google Maps can be very alarming when you look at it…the distances, well, seem much longer than they really are.  Once I figured out that D.C. city blocks are not NY city blocks, all was well.  In no time we were navigating like pros…or as close to “like pros” as one can be on the first visit to anywhere.

Of course, quiet places to eat a meal (especially during tourist season) are few and far between.  We had two dinners that were overwhelmingly noisy, but J managed to focus on the purpose of our presence in the restaurants, and didn’t fret about the ridiculously loud noise levels.  Kudos to him.  We were pleasantly surprised!  The kid who wouldn’t sit through a meal in a restaurant a couple of years ago is now totally fine with having dinner at a crowded restaurant while Happy Hour is in full swing, or a loud group of diners is boisterously celebrating someone’s birthday nearby.

J loved the walking bits of our trip.  J loved the Metro.  Any hesitation we might have had about his willingness to descend into the subterranean landscape of a subway station were quickly assuaged.  In mere minutes we were surfacing at the Smithsonian station and trying to get our bearings.  First stop: Museum of Natural History.

And herein rears its ugly head the fly in our ointment…

The first look at the elephant in the Rotunda was enough to tell me we’d have to pick our battles in this particular location.  J was so impressed with the lifelike appearance of this particular pachyderm that he started backing away.  I took him aside and explained that the animals are not alive…  J’s shoulders relaxed slightly, and I started leading him towards the Mammals exhibit.

Out of the corner of my eye I saw the feline that looks ready to pounce from above, and that’s when I realized J was digging his heels into the ground.  Nothing doing.  It was over right then and there even though I explained (over and over) that the animals were not alive.  I motioned for Dada and TGG to go ahead and walk around at their leisure while J and I did the best we could to look at things from strategic spots that kept him away from the actual exhibit.  We saw a lot of animal butts, and that was perfectly fine with me.  I was unwilling to force the issue if it meant J would be upset.  Mentally I scratched the Zoo off our list because, well, if dead animals are a problem, what will live ones do????

A leisurely walk around the butterfly garden outside of the museum helped J’s mood, and once more we plunged into the heat of the day to cross over to the Air and Space Museum.  We fared a little better there because it was cool, and because nothing looked like it was about to kill any living creatures.  J walked around at his own pace, navigating through the crowds that were desperately trying to beat the heat in of doors.  Dada is an “anything that flies” aficionado so he and TGG walked around going ooooh and aaaah while J and I slowly moseyed around and took short sit-down breaks on any available benches.

And then it happened.  The thing that hadn’t happened in such a long time happened.  Gloriously, obviously, publicly, shockingly, stunningly, sadly happened.  Ferdinand the Bull sat on that bee…J had a meltdown.  The crowds and the temperature and humidity that soared finally got to him.  Not only did J hit his head with his fists…he ROARED!  Leaving TGG behind, Dada and I escorted him out of the premises and to a shady area outside of the museum.  We texted TGG our location, and we tried to reason with a very overwhelmed J.  I asked what was wrong.  He roared again.  I told him that was rude.  He squealed.  I checked to see if something was hurting.  Everything was fine.  TGG found us and we briskly walked to the Metro station (in the wrong direction for a good fifteen minutes) while J kept saying GOOD MORNING and ANGRY and I kept telling him “it’s afternoon, and it doesn’t feel so good right now,” and “yes, of course I’m angry.”

Suddenly, for the first time in a long time, we were “those people” who dash out of a place because their autistic son is going ballistic.  I was mortified.  Yes, this was my first thought: we were doing SO WELL.  And then we became “those people” who stop for a brief conversation in the shade of a tree, and I’m the only one who’s talking while everyone’s trying to interrupt me: a) TGG had to make it about him and how he had freaked out because he couldn’t find us, b) Dada was too flustered and holding the map wrong, and c) J needs to use his iPad to tell me what he wants, needs, feels, or I can’t help!

By the end of those three minutes when we looked like the The Three Stooges (with yours truly playing Mo to the hilt,) we knew where the Metro station was and we turned in its direction.  I was having a hot flash on top of the anxiety of seeing J THAT upset.  As Dada purchased tickets for our return trip, an arm snaked around my shoulder and pulled me.  J was hugging me…squeeze-release-squeeze hugging while stroking my hair and saying ANGRY.  Shit.  I couldn’t be angry anymore.  I told him, as he kept squeezing me, that he needs to say what he wants, and I will do what he needs.

And then I realized it: J was hungry and thirsty.  That’s what it boiled down to…we had lost track of time and he needed sustenance.  We were entirely to blame for the meltdown at the museum.  What morons!!!!!

The rest of the trip was uneventful.  We made adjustments to our sightseeing, our meals, and the way we handled J’s needs.  We learned a lot from this particular experience.  Remember, please, that we hadn’t traveled for leisure in thirteen years, and J was only seven when we last took a family vacation.  Things have changed a bit since then.

We hope to do it again next year.  We don’t know if we’re yet ready to fly anywhere, or how long we’d be able to stay if we go somewhere that requires a plane trip or two.  We’re learning again.  We’re opening a new book and seeing what’s in it, and we’re editing and correcting as we go along. We are willing to do this because we think it’s important that we keep learning.  J is obviously trying to figure things out…we’re doing this together.

Next time will be easier…

Lessons learned:

1)  There’s no such thing as packing too many snacks.  Hotel rooms have refrigerators…use them!

2)  If the only animals J feels comfortable with are the TOOB kind, stick to those.

3)  J will happily walk back from dinner with one of us while the other two go to do/see something that appeals to them.

4)  Two craft kits for four nights?  Are you nuts????  Next time take more books and more crafts.  If J wants to go back to the room, he will appreciate this.

5)  J doesn’t watch Cartoon Network, Nickelodeon OR Disney.  Use his Netflix or keep his favorite movies in his iCloud.

6)  U.S. History is too abstract for J so find other things to engage him.  Mix the familiar with the tourist-y and you’ll be fine.

7)  The Sofitel at Lafayette Square is an awesome hotel, and they will give you adjoining rooms if available.

8)  Oyamel, Mio, GCDC, Black Iron Pizza are great places for J to eat.  Service is great, food is delicious.

9)  Road trips are fine, but we really need to think long and hard about the possibility of air travel…hmmmmmmmmm

The countdown begins…

It is the Monday of the last week of school.  J isn’t having a good time there.  I got a message from his teacher using the expressions OCD and SIB.  Nice!  The kid who has been behaving nicely at home is being a handful at school.  He broke his headphones.  He didn’t mean to, but there you have it…they are broken, and this made matters worse.

The last thing one wants to hear when we’re almost to the finish line is “this is not going well.”  I am of two minds about this: J’s an a-hole, or J’s just responding to the lassitude that creeps into everyone as the end of the school year approaches.  Well, maybe (just maybe) J’s an a-hole that’s responding to the lassitude that creeps into everyone as the end of the school year approaches.  He can be persnickety that way.  He’s not ready to call it a day, and he wants everyone to rally like he does.  This will test the most saintly of creatures, and I’m sure that patience is wearing thin over there with a few kids chomping at the bit to not do much for a few weeks, and one stomping around trying to get everyone on board with being all-hands-on-deck and beat-to-quarters to the very last minute.

Today I am working on that blanket of paper we call the summer PECS board.  This year we get to put a road trip on it, and we hope J will be excited about this prospect.  On Friday he will get home and, weather permitting, we will walk at a leisurely pace while I explain the map of our lives for the next twelve weeks: a trip to D.C., visits to the doctor and dentist (he might run when he hears these, but it HAS to be done,) ESY, walks to the pool, gardening, making soaps and such…  If he’s not totally bored to tears by the time we get to our townhouse, we’ll be fine.

I confess that hearing about J’s difficulties this morning gives me pause.  He really isn’t being that way at home.  I have searched and searched my mental database, and I cannot find one single instance of SIB in the past few months.  Maybe he does it when we’re not looking?  There are no signs, though, that J has engaged in any of it.  He has been happy and full of energy; when he wants to be alone, he asks us to leave his TV room.  When he wants company, he comes looking for us.  We do things together, but not so many that it seems we don’t give him space.  His appetite has been good, and he loves going to the gym with TGG.

We did notice that he put on a few pounds (nothing to be alarmed…just four pounds that weren’t there before,) and we checked his wallet and the school-sanctioned snacking continues.  That, of course, will be off the table on Friday.  We take him out and he buys his usual snacks, and he accepts the portions we have agreed to at home.  He gets his cookies, chips, popcorn, cheese, and so on in the measure that is healthy.  He doesn’t complain, and he actually looks forward to the Thursday evening visit from the ice cream truck.  If he’s planning The Great Escape, he’s being more discreet than Steve McQueen et al.  Maybe he’s just taking a page from James Thurber’s The Cat-bird Seat, and we will all look like fools in the end.

We are by now, I think, old pros at this transition process, and we will have to apply all our hard-earned wisdom and knowledge when the time comes (next June…oh my!) to end J’s school days.  For now, though, we are simply adjusting to another shift in the routine, and we need to figure out if J’s just ready for summer, or if he’s annoyed and anxious about something else entirely.

When I go back to the summer I was 20 (many, many years ago) I remember that trip to Europe and the frustration of not getting my Three Coins In the Fountain summer.  My mother and godmother took us to The Vatican more times than required, and we didn’t get to see the Sistine Chapel because “it will hurt our necks!  I didn’t come to Rome to end up with a pain in my neck!!!”  In Florence I had to fight for the right to look at Michelangelo’s David without censorship, and the Moulin Rouge in Paris was verboten (“it’s not all fun and games like Toulouse-Lautrec made it seem!”,) but we did get our bit of unwanted nudity at the Lido.  I discovered I had early-onset rheumatism in London, and wasn’t allowed to stay out late in Spain in spite of the fact that the sun had yet to set when we left whatever restaurant we’d gone to for the umpteenth time.  J probably views his life in the same terms; even if we’ve covered his walls with Kate Upton, pin-up girls, and his bedtime is only restricted on school nights (and that because he drags ass with the best of them in the morning,) he probably thinks there’s this huge conspiracy to make him miserable.  Just as I felt that I was on the most anticipated trip ruined by my mother, J probably will think that all the fun and games will be parentally kiboshed while we’re in D.C.  Either that or, in true J fashion, he will be so enamored of the hotel experience (because he LOVES hotels) that we won’t be able to drag him out of the room for the whole four days.  J, it is said around these parts, has a bit of the Hugh-Hefner-in-his-silk-pajamas about him…he likes to lounge and enjoy the AC and the luxury of a room where he won’t be asked to make the bed.

Between now and then, of course, I have to square away the transition to vacation-mode.  I’m sure that the current state of dissatisfaction comes from the limbo between “nose to the grindstone” and “what the heck…it’s the last week!!!!”  We’ll try to remove the SIB.  I’m on it.  I really am…  Especially with the med about to go away and leave us…forever…

This goes totally counter to my plans for Autism Awareness Day…

Yesterday was not a particularly stellar.  While I don’t hold much hope for a magical birthday (opting to generally ignore the day and feel totally awkward about any degree of attention foisted at me on the day,) I was sort of chomping at the bit for April 2nd, and for April in general.  It is, after all, the one day/month of the year when you will see a steady stream of attention for this particular sector of the population.  Blue lightbulbs were found in the place where I’d left myself a reminder they’d be stored.  My Doctor Who t-shirt was clean and ready to be worn (it reads The Impossible Girl, but I think of it as more of as “The Tries to Tackle The Impossible Girl”.)  Dada left for work wearing blue.  J decided to buck a trend and wore his “NeuroDiversity” t-shirt with a brain nicely emblazoned on his chest.  Wrong color, but right message. It’s a small thing (in the great scheme of things,) but it’s something we DO.

And then I went to the mailbox.

I’m pretty sure I’ve mentioned before that out health insurance provider probably has my number flagged.  There’s a reason for this, of course, and the reason is an unwillingness to listen on the part of customer service reps I’ve spoken to in the past.  The reason I know my number is flagged is because I now get to speak to patient, well-informed, helpful employees who sound like they’ve had hostage negotiation training.  Yesterday’s phone call was merely to confirm the suspicion that often strikes me when I open insurance company letters: J has been a victim of incorrect coding.  And, as has often happened in the past, that is what it was.  The hostage negotiator customer service representative explained that the labs J recently had done weren’t being covered (to the tune of 470 dollars and one cent) because the doctor had them coded under J’s primary diagnosis of Autism.

I let out a long, heartfelt sigh.  Then I asked the customer service rep how it made sense that drawing blood for lipid, metabolic and a hemoglobin test made any sense as being related to Autism.  She said “they don’t.  You need to call the doctor and straighten this out.”  I thanked her, wished her a happy Easter, and called Dada with the news.  He reacted with the same level of frustration I was feeling.

The truth is that a lot of doctors (not all of them, but a lot of them) are too focused on getting you in and out of there to see the next person in their seemingly-interminable list of appointments for each day.  I can understand that this is overwhelming, and that the demands put on residents at teaching hospitals are pretty rough.  My cousin is currently finishing her first year and she is pretty much barely functional.  A medical residency is a test of your knowledge and of your mettle; they want to know if you have the right stuff to do the job day in and day out.  You have to update charts, study for tests, go on rounds, absorb information, work long hours…and people sort of blend one into the other until you know the chart but you’re not (necessarily) focusing on the person.

I remember this doctor.  He did the basics and then was done.  I tried to explain that J has lost a significant amount of weight (we’re holding at under 230 now…) and that his diet has changed for the better, that he’s working out regularly, and so on and so forth.  I got a lot of yeah, yeah, yeah, and then we were done with some labs ordered and a “see you in six months.”  The flu vaccine was administered, and we came home.  I didn’t feel like we’d been to the doctor so much as we’d waved at him from the bus as we drove by, but the guy was congenial enough and the nurses made up for the whole yeah, yeah, yeah attitude.  He wasn’t rude.  He was just…pretty sure that this was all cut and dried.

The first letter from the insurance company related to this visit said the appointment wasn’t covered.  I called about it and they said “well, because his diagnosis is Autism.”  I explained he’d been in for his annual physical and, binder in hand, I took them over the history of J going for his physical at the same time of the year since we moved here.  They looked at his file and, yes, I was right.  “Call them.  They coded it wrong.”  Call was made, and issue was resolved.  And then came the labs…

The concept of comorbidity is not lost on me.  I know that Autism has many medical conditions that somehow appear in its wake.  Are they caused by the Autism?  No, not really.  Are they more frequently present (or documented) in people who happen to be autistic?  Yeah, of course.  Of course, all the documentation regarding this is the result of several people in different places noticing that there are certain patterns that are repeated in patients that share signs/symptoms/diagnoses.  Take, for example, J’s possible case of psoriasis.  Go to Google and you will find an abundance of material relating one thing to the other.

I know (seriously KNOW) that my son is firmly planted in the Autism Spectrum.  I have absolutely NO doubt that he is autistic, and that this is an important medical factor for him for the rest of his life.  Ask me, please, when was the last time he saw a medical doctor for his Autism?  Does J’s Autism figure into the way we approach any medical issues?  Of course it does!  Does J’s Autism figure into any conditions he might develop in other areas of his body?  Possibly!  I don’t think J’s possible psoriasis is a result of his Autism because other people in my family have had it, and I’m more inclined to believe that -hey!- the hereditary factor that is often cited in studies conflated with other factors that are triggers for psoriasis.

J’s Primary Care Physician doesn’t treat J’s Autism.  J’s Primary Care Physician has to take J’s Autism into consideration so that he/she can provide the proper level of care based on J’s needs.  When I take J to the doctor to have his physical health checked, the fact that he is autistic is only part of who he is as a patient.  An important part, yes, but not the part that the doctor is palpating, testing, listening to; while J is autistic, his heart, lungs, liver, kidneys, corneas and ears are merely human of the garden variety kind.  His Autism plays a part in how he treats his body, and what medications he’s on, but it’s not what the doctor is looking at/for when we go in for an annual check-up.  We go to his psychiatrist for med management, and the labs reflect how the medication affects J’s organs, and the PCP focuses on that, not on how the meds affect his mind.

It’s a trivial issue.  Someone read J’s file and determined that because he’s autistic that’s all there is to him medically.  The truth of the matter is that medical coding is a complete and utter mess that causes a great deal of problems under the guise of improving efficiency.  I don’t argue the “he’s autistic” label, but there should be a little more care exercised by the doctor when he/she is determining what their job is in relation to that patient sitting across from them.  What is the doctor actually going to focus ON?  What is the doctor actually looking AT?  If you reduce the patient to his/her disability…well, it sucks.  You’re going to end up making a mistake that can be corrected, but that brings yet another hassle to people who have other (bigger, fatter, juicier) fish to fry.  When Dada or I have to take time away from our main jobs (whether at home or at the office) to make a call or write an e-mail asking WHY things have been coded in that way.

Yes, yes…we all want there to be more awareness about what Autism IS, and what it DOES to individuals and their families.  My blue bulb (which, by the way, didn’t shine last night because it was gone by the time I left for the grocery store at 5 P.M….don’t ask) doesn’t mean “look at this home of an autistic individual.”  What we are trying to say with our blue bulbs, blue clothes, blue shoes, blue ribbons, blue nail polish is that there are many of us, and it’s a big deal in our lives that that blue is necessary.  Everyone KNOWS Autism is out there, but not everyone understands how it trickles into everything.  What is even worse is that sometimes the Autism overrides everything else, and we are reduced to extrait d’autisme.  Maybe all parents of special needs individuals feel like they’re eventually reduced into an essence, an extract of their child’s diagnosis?

We all want doctors, teachers, nurses, waitresses, neighbors, strangers, cashiers to look past the Thing that makes our kids “different” and to understand that there’s more to them that they are encountering when we stand/sit across from them.  Getting that one little number on a medical record right is a step in the right direction.

New Year…same old us…

We rang 2015 in by barely managing to stay awake.  J announced he was done with being up at around 11:45, and we got him up to his room, read him his story (he chose If You Give A Moose A Muffin…one in a series we refer to as vagabond stalker mammals begging for food and causing chaos,) and then we sat to wait for the clock to chime midnight.  Five minutes later we dragged our butts up to bed, and didn’t regret being “those boring people.”

On New Year’s Day we milled about, the most boring people on the planet, and took our recycling, stopped at the grocery store (where we were possibly the most alert people milling about,) and then came home to do whatever had to be done to keep our household going.  In the evening we weighed J…

We started 2014 with J still weighing in in the 280-285 pound range.  A year later we are in the 220-230 pound range.  Size 44 pants are way too big, and today J went out to the store wearing size 38 pants quite comfortably; we bought him two more pairs of that size.  We also had to buy him new, smaller, underwear, and then we had to label it because he’s not the only person who wears size L underwear in our household.  J is one pant-size above Dada, and two above TGG…  J is no longer making the Wii tip over the “OBESE” line when he is weighed…he is simply, purely, strictly “OVERWEIGHT.”

I know we’re probably too excited about this, and it’s not a big deal at all.  I know we probably build up this process because it becomes second nature when you have an autistic individual in your home.  Your entire life revolves around very small achievements, and you savor them because you won’t get some of the other bigger ones people tend to celebrate when they have neuro-typical kids.  We get excited about weight loss like other people get excited about their kid making quarterback; we get excited about a tantrum that has rhyme and reason to it in the same way other people are thrilled when their kid wins a debate.  This morning I was over the moon with joy because J didn’t want to wear one t-shirt because it just seemed SO BIG on him, and he was mortified that I’d take him out of the house like that…

J has downsized, and we are very happy.  We are even happier that he will eat what we’re eating, and that he will try something new when it’s presented to him.  J looks forward to going to the gym.  The kid…who wouldn’t move from the couch…except to get a snack…yeah…

So we enter 2015 with good news, and we are hoping for better.  We enter 2015 knowing that J will be 20 (yes, no more autistic teenager…that’s something to ponder) and that he can only stay in school until his 22nd birthday.  This year, my friends, is crucial in our future as parents of an autistic individual…this year we have to find the proper resources to move him forward for the rest of his life.  The very thought of “the rest of his life” starting in a little over two years is rather daunting.  There are moments when I feel like the girl who cries wolf…

Every year I spend a great deal of time asking myself what I’m going to do when J no longer can go to school.  I ponder the possibilities.  I weigh the alternatives.  I put it aside for a little longer. The thought of J being old enough to age out of the system can be overwhelming, and it’s easier to just push it aside than to grab it by the horns and wrestle with it.

Don’t think I’m living in La-La Land here.  I do think about it, and I do try to figure out the best choices for J, but I also have to be realistic about what IS out there.  When you boil it down to the most essential element, the answer is “not a heck of a whole lot.”  The system is not designed to encourage thriving among the developmentally-disabled population, and -in a way- it’s not supposed to; “thriving” is a very reduced concept when it comes to people with disabilities.  People cheer you on, but they don’t always really know why, and it frequently comes with a little sadness for the circumstances thrown in for good measure.

Do I wish I could find something that would make J happy when he’s done with school?  Of course.  Do I wish I could find a way to make his efforts profitable?  Of course.  Do I think any of these things are possible?  Not necessarily.  The thing is that, just like everyone else on the planet, J has to work to make a living, and that doesn’t always imply being happy with how you earn your living, or making enough to live comfortably.  We are all in the same boat, and we all have to do the best we can to move forward.  Whatever we end up doing, our attitude towards it is what counts, isn’t it?

So that’s the way we start the year.  J is closer to his target weight, and he is wearing much smaller clothes.  He is excited about winter break being over and school starting again tomorrow.  He is happy that his birthday is coming up, and that the weather will not be slapping us around until later this week.  We start out great.  We want to keep going like this.  We’re going to work on it…

And, between now and the 31st of January, I will ponder if I change the name of my blog or leave it as is and keep going in spite of J no longer being a teenager…  We’ll see…