Our power to control the weather…

It seems like we have a way of tweaking what is about to happen -weather-wise- in our area.  We move somewhere and the first winter we spend there will experience The Worst Winter Scenario in every model.  This winter we have had record-breaking lows, heavy snowfall, and so on and so forth.  We have promised (repeatedly, vehemently, sincerely) that we are NEVER moving again; we won’t move AWAY from here, or WITHIN here…we won’t move…period.  I think the neighbors are circulating a petition to make us swear on our mothers’ graves that this is true.

If you add to this “talent” the ability to tinker with J’s meds when the weather turns nasty, you get a double whammy.  Either tinkering with J’s meds affects the weather, or we sense it’s time to tinker with J’s meds because the weather is about to change.  Not quite the wind-direction effect has on Mary Poppins’s arrival and departure, but a sign of change nonetheless.

Tuesday evening we got all sorts of warnings about the weather.  Wednesday dawned fair and bright, but Dada’s employer – according to the emergency plans in place – told him to stay home.  And so it wasn’t until today at 10 a.m. that Dada left the house to go to work.  Between Tuesday and this morning, the three of us had a lot of togetherness.  A LOT!

J, of course, was having none of it at first, and Dada was instructed to put all his thespian abilities to work on faking the sniffles.  Let’s put it this way: good thing the man has other abilities because acting isn’t his forte.  J was unconvinced and annoyed until it started to snow…profusely.  Of course, the snow went from profuse to abundant rather quickly, and by Thursday morning (another moment of irritation for our son), the blanket of snow was significant.  J accepted his fate and decided to try to enjoy our company as best he could.  He even let us, oh miracle of miracles, watch a movie with him in his TV room.  He even -egads!- enjoyed it…  So we didn’t get to Paddington 2 on Monday (as planned and hoped by J), but we managed to watch the five-dollar DVD of Paddington on Wednesday.   Dada had found the movie when he went to pick up J’s new prescription and he figured (since we had to subject ourselves to a sequel) we might as well watch the first part.

But on to the part of this entry that everyone is wondering about: how goes it with the Prozac?

It goes well, I think.  J complains that he is SICK, but he doesn’t really mean it; we can tell it’s more of a “hey, my stomach is upset” than a “hey, I feel sick.”  After reading all the possible side effects (a hobby of mine that, paired with my overactive imagination, can present a significant problem) an upset stomach seems like the lesser of many evils.

Considering that J is non-verbal and that his ability to communicate is limited to basic  ASL and his Proloquo2Go, how can I be expected to extrapolate whether he is having depressive or suicidal thoughts?  My son is already a walking, living, breathing conundrum as is, and I’m supposed to somehow recognize that he is about to cause severe harm to himself under the influence of this medication?  As you can imagine, my muscles have been in knots for days now.

We often chase shadows, don’t we?  As parents of individuals with a developmental disability, we often look for things that we cannot even recognize.  If the parents of a neuro-typical kid fail at recognizing depression and anxiety, our odds are not good, are they?  I look for signs of a gathering storm, of clouds forming on the horizon, of a veil being drawn in front of J’s eyes.  I listen, my ears as hypersensitive to the cues as his are to every sound, for music that tells me something is changing for the worse.  I sniff the air as if I can somehow sense sadness by the scents it carries.  I observe his choice of clothes, of music, of movies, of snacks.  I listen to the most infinitesimal change in his tone of voice, in his laughter, in the way he shifts on his couch.

Abstract concepts related to feelings, emotions escape J.  He feels everything.  I’ve seen every feeling play across his face, his eyes.  I know my son feels, but I also know that he finds it difficult to process things that require a little more grasp of the abstract.  People die.  J doesn’t understand that; J just sees it as an absence.  The database in his mind retains an image of everyone he’s ever met, but if you tell him someone has died, the image isn’t erased.  Is it ever revisited?  Possibly.  I’ve seen J pensive as he listens to Music we’ve always connected with my father, but 12 years since the last time he saw my father is a long time, and two years since my father died isn’t going to alter J’s mental image of him.  He had not seen my mother in nine years, and her passing away will not change whatever memories he has of her.  The living are another matter entirely; J will see someone after many years, and he will take a moment to connect the current appearance of that person with the one he remembers, and then -we’re pretty sure- he will absorb this and multiply the file in his mind.  J retains the emotions people elicited in his previous experience of them, and he holds on to fears, concerns, antipathies, affections, tenderness.  It is as if, quite simply, he does an age progression on an existing file, and picks up where he left off the previous time.

But how do you read emotional distress of a more complex nature in a person like J?  How do you figure out if sadness means “I don’t want to live?”  How do you determine if a moment of anxiety means “I want this to be over?”  It is hard to react to things we cannot understand fully, and so we spend a great deal of time trying to decipher our son’s silences, giggles, sighs, repetitions, and hand-flapping.

I read lists of side-effects like other people read celebrity gossip.  I ask myself “is this really possible?”  I tell myself “I would be able to recognize this…right?”  I wonder how I could come up with a test that will determine if I am seeing what I think I’m seeing, or if I’m just imagining some horrible scenario.  I question my own judgment when reading my son’s cues.  I read the lists and then I try to figure out what it all means in a world where smoke, mirrors, and alternate ways of communicating are the norm rather than the exception.

So all I can tell you right now is that J seems a little less anxious, a little less repetitive.  I can tell you that J seems to be complaining of a side-effect related upset stomach and that he seeks the reassurance that I recognize his “SICK” and meet it with a legitimate concern and desire to help him.  I can tell you that I sleep with my ears peeled for every sound, and I count the seconds he spends in the bathroom…then I go to make sure that he is OK.  I can tell you that we make every effort to be with him and offer him our company and support throughout the day.  I can tell you that we tell him we love him, and just how much.  I can tell you that we say “it’s ok if you don’t want us around, but know we are here.”

That’s all we can do.  Listen.  Hope.  Pay attention.  Be present.  Hope.  Look out the window at snow and icicles.  Find things to do together.  Know when to step back and give space.

Did I mention hope?

Well, yeah, we hope this works.  And we look at the side-effects list and then at each other and say “not too bad so far, huh?”  And that is the whole truth: not too bad…so far.

Enough was too much…

A meltdown a day I can deal with; a tantrum for the sake of a tantrum just because he can…well, that’s another story.

Mind you, my friends, I know the difference.  A meltdown has, at its core, a level of frustration that moves J to behave in a manner that will get him attention for something he cannot express is wrong.  A tantrum comes with a sly smile and says “dance, monkey!  Dance!”

Oh, we were patient throughout.  We bathed him as he beat the crap out of himself, and smiled.  We took deep breaths as we saw his hand get redder, and we tried to divert him.  He was relentless.  He was enjoying the power he was exercising.

And then I calmly sat him down.  I showed him how red his hand was, and I told him that there would be NO PIZZA FRIDAY, and NO FIVE GUYS SATURDAY.  He had not been melting down; he was being a brat.  I then informed him (before ten P.M….egads, Brain!) that it was bedtime.




I tap the iPad screen and the Proloquo says: NO PIZZA FRIDAY.


I go back to the iPad: NO FIVE GUYS FRIDAY.


Oh, we love you, too.  Bedtime.


Get your story, pack your things, and up we go to bed.




OK, bedtime.


The iPad talks for me: NO PIZZA FRIDAY.


Nope, buddy…nothing doing.


I accept your apology.  I won’t give you a reward for it though.

I go back to the iPad and tap buttons in quick succession: J RUDE.  J NO UPSET.  J HIT.  HIT WRONG.  MAMA AND DADA WORRIED.  J GROUNDED.

Stunned silence, and acquiescence.  He gathers his things, and we head upstairs.

When we get to the kitchen he looks at the board where PIZZA, TARGET and TAXI were on display for Friday, and FIVE GUYS was on for Saturday.  I calmly take them down and put them back in the tray.

J looks at me.  SORRY.  I say “I appreciate your apology, but I cannot reward a tantrum just because you think it’s funny.  Upstairs, please.”

Of course, he turned on the charm while we went through the bedtime routine, but I stayed cool and calm, said GOOD NIGHT, and left Dada to read Mouse Soup.  We were all in bed by ten-fifteen, and then J came into the room to check if Dada had clothes out for work.  I told him to leave the closet alone, and march to bed.

At 5:45 this morning he walked into our room and said COFFEE.  We told him to go back to bed.  At 5:52 he repeated his request.  I got out of bed, put a timer on for him to stay in his room, and went back to bed.

How do I know that last night’s incident was a tantrum and not a legitimate meltdown?  Because my son has been trying to be as charming as can be, and he has been SIB-free all morning.

Oh, that might change.  It might be a SIB-ful afternoon, but this is proof that J knows what he’s doing, and he also knows that there is a point when I will no longer go “poor baby!  Do what you will with my nerves.”

I feel empathy for my son.  I really do.  I want him to be happy, and I want to help him in any reasonable way I can.  I also don’t want him to use SIB as a form of entertainment.  “Oh…I’m bored…let’s make the parental units jump, shall we?????”  A legitimate meltdown is something that I can unravel and, perhaps over time, find a way to help him manage better.  I will not accept entertainment-value tantrums.  I will not sink to the level of “reality TV” just because there’s nothing of quality to view at the time.

It is a dreary day.  Rain, clouds, fog, gray…and we’re indoors, and we’re stuck with each other.  We will be entertained, interactive, affectionate and communicative, but I hope we will also manage to have a little peace of mind today.  If he is genuinely upset, we’ll deal with it, but I will not encourage him to manipulate a whole day simply because he can.

Would allowing this help him at all?  I don’t think so…but I might be wrong.  Feel free to chime in!

We go on a family vacation…

Spoiler alert: we survive.

On a sunny Saturday morning, and after lengthy and detailed preparations that would qualify me to participate in organizing D-Day (if I’d had a past life,) we hopped in our car and drove east to D.C.

J packed enough stuff to stay a month.  He wore all of it.  His suitcase was heavier and better equipped than any other suitcase I’ve ever seen.  At some point during his childhood he must’ve heard me say “always pack more underwear than you think you’ll need” because he only left enough underwear at home to use while his post-vacation laundry was being done.

This was the very first time we took a trip without TGG.  We were cautiously optimistic about how this might turn out, but we were also ready to graciously accept defeat and head home early.  A Saturday-to-Wednesday didn’t seem significant when we originally planned it, but once we got to our hotel we started wondering if we’d bitten off more than we should chew.  Notice I didn’t say “could.”

We timed our drive in such a way that we arrived at the hotel shortly after check-in time.  We suspect that his hotel has only one set of adjoining rooms because we got the same ones we were in the last time.  This is not a bad thing because J was familiar with the set up, and even looked around as if to say “ah, yes…MY room.”

It seems that we are the bringers of heat waves.  Our trip last year was in June, and it was pretty toasty.  Our first day this time around was very much in the same vein.  We have decided that we will plan for either earlier or later in the year the next time around.  Maybe that way we will have cooler weather, or we will bring a much needed spike in temperatures to the area.

We walked all over D.C.  J was so happy to be out and about!  Of course, I took both iPads, and I bought him a set of headphones that worked a charm.  September is a lot less crowded, and we managed to experience things that we had to skip last time.  Last year J had problems with the crowds at the Smithsonian Air and Space Museum, but this year we walked around the Smithsonian American History Museum and the National Portrait Gallery.  I made sure that one of the iPads was fully charged up when we left the hotel, and then I’d swap it for the other one as it reached 10%  charge.  This allowed us to be out for hours, and J could drown out the noises that tend to cause him anxiety.

We had Sunday brunch at the very crowded but very much worth your while Founding Farmers.  We had a reservation for ten a.m. and, should you want to go there, get a reservation because the lines can be long, and the wait can be exhausting.  After a hearty meal, we set out towards the National Mall, and ended up circling around the Tidal Basin and sitting for a while at the Jefferson Memorial.  There is a very friendly squirrel there.  This, and birds, were the only living creatures that gave J pause.  The first day he was a little overwhelmed by the birds, but by the second day he was much better.  I don’t know if he just thought to himself that they were as much a part of the environment as the buildings and people.

On Monday we made our way to Dupont Circle and explored a couple of bookstores that we had been hoping to visit last year.  J had fun walking around.  He also liked eating a mid-morning snack at Panas, a small place where they make delicious Argentinian empanadas. Tuesday was museum day, and J was relaxed and happy in spite of the seeming not-very-J theme of the day’s schedule.

I will now take a short moment to tell you about the one fly in our ointment.  We took him to dinner too early on Saturday.  I had mistakenly thought he was more tired than hungry so we went for tapas at a fairly early hour.  In the middle of the night he was grumpy and disruptive, and we had to get out of our bed to deal with his anger.  He went through several packages of bandaids, and he was complaining in spite of the snacks I gave him.

At around four in the morning I had to sit him down and tell him “these are all the bandaids you have left.  If you use them all up, we will have to go home because I didn’t come here to buy you bandaids.  When we get up, we will go to breakfast.  If you want to go home then, fine…it would be nice, though, if you told us why you’re unhappy so we can help you.”  Dear reader, that was the end of the bandaids issue.  If I tell you that we came home with the packages of bandaids I showed him in those early morning hours, would you believe me?  You should.  He didn’t ask for any again.  After this incident, J was very communicative about his needs and wants, and we ended up being thoroughly impressed with his behavior.

Now, the other thing I want to tell you about: we are SO GLAD we have made a habit of setting the table each evening and eating together!  We took J to several very nice restaurants, and it was wonderful to see how well he navigated the sea of glasses, cutlery, trays with bread, etc.  I know it sounds snobbish, but we wanted to take him somewhere nice so he would see that all the effort he puts here pays off.  We took him to dine at a lovely restaurant called Casa Luca.  We made an early reservation and it was wonderful!  J ordered the gnocchi, ate his bread after dipping it in olive oil, tried the prosciutto…  We then walked back to the hotel.  It was awesome!

For lunch on Tuesday we went to Rosa Mexicano, and he loved it!  The tapas at Jaleo were out of this world, and they had his favorite sausage: chistorra.  If you’ve never had chistorra and you see it somewhere, try it.   Dip it in something sweet like honey…J highly recommends it.  We made sure we took him to places that might be crowded and noisy, and the headphones did the trick.  We didn’t do this out of meanness; we simply wanted to show him that we cannot always go somewhere where he will have the absolutely perfect conditions.  He adjusted very well.

We drove home on Wednesday and, after a one-hour delay in very slow traffic on the interstate, we made it back with plenty of time for J’s sitter to come see him.  We had her over for dinner and he was very happy to start swinging back into his routine.  The rest of the time until today has been dedicated to settling back into the everyday drudgery that is our life.  He has been happy.

So that’s the recap of the Great Family Vacation of 2016.  We hope to repeat it next year.  We know now that J will happily go along with plans as long as we address the issues that can cause him anxiety.  I cannot get rid of birds, but I can make small adjustments that will make him feel comfortable, and help him realize we care and are trying to help him.

On to other news and comments tomorrow.  For today I’m basking in the glow of a successful trip with our son.  🙂


A trip to town…

With a great deal of equanimity, J accepted that we were going on an outing, and he trusted me when I said it was for fun.  What I mean by “for fun” is “no doctors.”  We ran errands.  We walked a lot.  We rode the bus and discovered that it isn’t just the potholes that cause problems; poor suspension in any vehicle will make for a bumpy ride even if the road is (more or less) in good repair.  By the time we reached High Street, J and I were more than ready to get off the bus; I’m sure the other passengers were ready for us to leave, too, because J said GOING TO TOWN a minimum of 200 times during the half-hour ride.

Our first stop was the courthouse.  Because the world we live in has become increasingly threatening and violent, we had to go through metal detectors and empty our pockets before going in to complete the errands we had for the morning.  J had been to this building before, and he was a little taken aback by the new contraptions standing between him and getting in and out of there quickly.  A brief moment of confusion, a relinquishing of his beloved Slinky and kind patience from the security team at the door, but we made it through without problems.

Of course, I had a minor glitch with the paperwork, and we had to do two of the things we had on our list, but leave and return for the third.  J was patient about this, too.  There were a lot of people waiting their turn, and he navigated this fairly well.  I say fairly well because J takes up a lot of space when he sits down, and I had to ask him to “gather his feet” so as not to create an unnecessary obstacle course for the other patrons.

I had promised J we’d go to his favorite store in town when we were done with our errands, but I had to dash to the library to try printing a piece of paper I needed for that pesky third errand.  When I realized the printers weren’t working, I let J walk the Children’s section and I texted back and forth with Dada trying to find a solution.  The proceedings reached a stalemate and, to recover from the stress of the moment, I told J we were going to the toy store.  THIS was the moment he’d been waiting for, and he was so happy that it was well worth having sat down and taken that deep breath.

We walked around the store, looking at dolls, games, plush toys, books, Playmobil sets.  I asked J if there was anything he wanted before we left.  Another turn around the store helped him make his choice: the biggest set he could possibly choose from among the Playmobils, and the little motor to power it!  I explained that, yes, he could buy it, but HE had to carry it around town.  As we were paying, the store owner (we have known her since we moved into town four years ago) helped me figure out how to complete my final errand.  Immense Playmobil set in hand, we went back to the courthouse (and through security, of course) and finalized our official business.

I asked J where he wanted to have lunch, and he stood looking around at the different store fronts.  In the end, he opted to go to a diner that he’s been to when he’s walked into town from school.  I had never been so he guided me to it, and when we were led to our table, he plopped down like a regular customer.  Since it was after eleven a.m. I ordered French Toast and J ordered a grilled cheese sandwich and some chicken strips.  He ordered his food with his Proloquo.

I can understand why J likes the place.  The booths are spacious, and the music was perfectly in tune with J’s tastes.  As we sat there waiting for our meal, J was happily moving around in his seat, following the songs they were playing.  He was so happy, in fact, that he didn’t hesitate to remove his brace to cut up the chicken strips, and didn’t complain when I reminded him that he has full use of his thumb and I expect him to move, curl, wriggle, and command it.

We counted the money to pay our bill, and made a pit stop before heading home.  Dada kindly drove into town and brought us home.  All in all, we were out and about since 9 in the morning, and didn’t walk into our townhouse until shortly after 1 P.M.  It was a very full and active morning, and J was stretching and yawning when we got back.

We spent the better part of the afternoon putting his toy together.  The nice thing about Playmobils is that they’re easy (for me) to figure out.  I’ve grown too old for Legos.  And before you argue that “you can never be too old for Legos” I will explain that I fully agree with the spirit of that, but my eyes aren’t what they used to be, and some of those tiny pieces are hard to handle with my arthritic fingers.  J was especially thrilled when he realized that one of the figures in his new Playmobil Ferris Wheel set looks a lot like him, down to the newsboy cap it’s wearing.

As you can tell, our trip to town was mostly successful.  The one glitch was the red-tape, but we figured out what to do to properly and promptly complete our errands.  I didn’t flat-out lie to J; I meant for him to have fun, but I also meant to get things done, and we managed both.  The rest of the weekend went well because we set the proper tone for errands and fun.

Today is the first day of the two school-less weeks in August.  We are doing a little work, and we are trying to do some fun activities.  The mood is light, and we are determined to sail through the next couple of weeks without too much drama.  And the brace?  It comes off for chores and meals, and I keep reminding J that his thumb works just fine.

Week Three of ESY…or, as we call it around these parts, the next to last week of ESY

So far it’s been smooth sailing at summer school.  Maybe it’s because J hasn’t fully understood that THIS is the last summer school EVER, but I’ll take it as it comes.  He is happy.  He accepts that Thursday means three solid days of not going to school, and that Sunday means four consecutive days of going.  In Morse code, my dad would say, that’s O-O-O-H-H-H-H…that it sounds like OOOHHHH is no coincidence.

The ball pit project is progressing slowly.  In the meantime we are doing other things to make J more comfortable.  These are things, by the way, that appeal to his aesthetic, make him happy, and go a long way to drain my wallet.  He found string lights at Target that are covered with star-shaped paper lanterns.  We’ve pinned three of them to the ceiling, and they create a trail of stars that he likes to look at when he’s relaxing.  We’ve found tissue paper tassel garlands in pastel colors, and he likes to watch them move with the breeze from the ceiling fan.  Katniss Everdeen stands guard on his craft closet door downstairs, and watches over his sleep at night in his bedroom.  His pinup girls are now surrounded by glow-in-the-dark stars, and he has a flashlight he can point at the stars or the girls.  I don’t ask questions…I simply listen to what J wants.

His weight is holding steady, and he still likes going to the gym.  We will have to make adjustments very soon, though.  TGG has registered for classes at the university, and he will have to work and go to school so his chances to work out with J are limited to Fridays, Saturdays and Sundays IF he can keep his current job.  It is quite possible that he will have to find another job that will accommodate his school schedule so all the exercising time will shift to us old folks…not that we don’t need it.

Of course, now I arrive at the sticky part of our summer: the thumb immobilizer.  Faster than you can say “comfort item” this little piece of hardware has become J’s best friend.  When separated from his new comfort item, J is a bit antsy.  When you make an assessment of movement for his fingers, thumb and wrist without the brace on, J will happily go ballistic on you.

I have figured out that this is J’s way of making sure that brace remains as a comfort item.  There are, and I’ve told him this, more convenient (and safer!) ways to get his point across.  The last time he threw a fit about this I took it off, replaced it with a significantly smaller, and not quite as comforting brace, and sent him to bed immediately.  The next morning, quiet and obedient as a little mouse, J did all his chores, and humbly asked for his bigger thumb immobilizer.  I took the time to have a chat with him, and -as much as he rolled his eyes- he got the notion that we’re just trying to help.

I know the absence of the brace upsets him.  I know that it, along with the many bandaids he wears on real and imaginary sore spots, reminds him of behavior that can cause harm.  My assumption, and I can only assume because of J’s difficulties in communicating more abstract feelings even with the Proloquo, is that he is using the brace as a shield against hitting his forehead.  TGG was never in the habit of grabbing J’s hand and making him slap himself (a game my older siblings called “why are you hitting yourself?????”,) but I think that J sort of envisions his hand as having a “mind of its own.”

Like other individuals in the Spectrum, J battles with OCD.  Things have to be just so, and it doesn’t always makes sense to the rest of us.  Maybe hitting his head is part of that.  Maybe J feels compelled to hit himself, and the brace plays the part of Jiminy Cricket.  Seeing those black straps encircling his thumb, wrist and forearm remind him that he hurt his hand hitting his head, and dissuade him from doing it again.  The problem is that I need to make sure that this is not a ‘forever’ comfort item…

And here come the timers, and the short pockets of time when J cannot have the brace.  He has become very dexterous at cutting meat, buttering bread, zipping up his pants, and so on with that thing on so I’ve had to go back to manners and socially-considerate behavior.  Mealtimes, bath-time, going to the bathroom…no brace.  Granted, he hems and haws, but…for the time being I have to deal with this part of the issue in the way that I’ve found most effective: timers.

So that’s where we are…

And with seven days of ESY left, we have another long spell of not having a school routine ahead of us.  When August arrives, and school begins, it is the beginning of the end…

But that’s a problem for another day…

Mr. Happy-Go-Lucky gets a thumb splint…

J was happy yesterday.  We didn’t have any trouble during the day; we did our chores, went for walks, put together another craft project.  In the evening he went to the gym with TGG, and then we got pizza for dinner.

At nine o’clock he came up from the TV room asking for bandaids.  It was not yet bath-time so I asked him to wait.  And then the tantrum started…  Even though I was just headed for the bathroom to pee, I stopped in my tracks and reminded him that he has to ask for help.  I might as well have asked him to recite Ozymandias.  He would not budge.

Of course, we were deflated, and had to herd him up the stairs to his room so we could address the tantrum and the bandaids.  No sooner did I ask him to take off his wrist sleeve (which we all know is just a piece of a pair of tights) that he started to hit his head.  We immediately pointed to the DON’T HIT sign, but this did little to calm J down.  His reaction was so strong and decisive that I sat next to him and held his hand.  I slowly removed the old bandaids, and up the hand went…bam bam bam against his forehead.

By this time I really had to pee.  I took J’s arm and told him to follow me.  I am not proud to admit that I used the toilet while J stood there, looking away from his poor, weak-bladdered mother.  As long as I hold his hand, he won’t hit…desperate times call for desperate measures, and with his hand tucked between my ribs and my elbow I washed my hands and herded him back to his bedroom.

His hand was swollen.  Not his WHOLE hand, but rather the pad of flesh that sits between the base of the thumb and the wrist.  Swollen.  Like A LOT swollen.  J has big hands, and we’re used to seeing some swelling when he’s been indulging in SIB, but this was way out of the ordinary amount of swelling we have come to accept as “oh, it happens.”

Dash away, dash away, dash away all…”TGG, wrist brace!  Dada, ice pack!  STAT!!!!  Someone bring the iPad from the basement!!!!”  My minions dispersed.  When they arrived back in J’s room I was putting bandaids on, and TGG was giving the swelling a quick look.  “I think it’s either a sprain or dislocation…”  He asked J to make a fist, wiggle his fingers…  With the iPad he told us it hurt, but the pain was tolerable.    Once we had bandaged him up as best we could with what we had, J said HAPPY.  I explained to him that we would go to the Urgent Care this morning.  He tried to hem and haw, and I had to clarify that the pain cannot be addressed with just bandaids.

This morning, after a quick shower, and some complaining, we arrived at the Urgent Care as soon as it opened.  This kid should have Frequent Flyer miles there.  They know him, and -thankfully- they know how to deal with his hesitation.  When the doctor came in and asked to see his hand, J parted with the bandages he was wearing, and allowed him to poke and prod.  After an X-ray, they let me put the bandaids, wrist sleeve, and wrist brace back on…

It’s a sprain.  A bad one.  The doctor says he must’ve jammed his thumb on something.  We told him it was probably his forehead he jammed it on.  “That would do it if he hits at an angle that the thumb is not ready to support.”  The solution?  A thumb splint that immobilizes that thumb and braces his wrist.  “Will he wear it?  It’s bulky!”  I explained that bulk is no issue; after making a habit of carrying four boxing gloves around for a couple of years, bulky is not a problem…it’s a fashion statement.

When the nurse came in with the brace, J smiled as if he’d just been given a beautiful present.  He extended his arm and thumb with enthusiasm bordering on the absurd.  The only thing missing was his saying “for me??????  Oh, you shouldn’t have!!!!!”  The nurse explained that it’s removable, and he’ll have to wear it for three weeks.  Ice will help with the swelling.  Acetaminophen will work for the pain if he has any.  I told the nurse if he enjoys wearing this thing, he will probably make it a part of his daily wardrobe.

I have never seen anyone look so happy about having a body part immobilized.  When we got home, everyone at the property management office and in the maintenance crew asked J what had happened.  He displayed that brace like Michael Phelps displays his Olympic medals on a box of Wheaties.  You’d think he had Iron Man’s arm installed…

Does he fuss over it?  Yes, of course.  There are Velcro straps, and J loves readjusting Velcro straps.  It’s almost like he got his very own, personal, exclusive amusement park ride.  He walks around smiling, his arm extended in front of him…sort of like a modern day, less gloomy The Mummy.

I will take the fussing over Velcro over the hitting himself because he’s hurting and he doesn’t know what to do.  I know that J didn’t just hurt himself.  Of all the things I know J is capable of, intentionally hurting himself to get attention isn’t one of them.  If J is going to hit himself, he wants an audience.  He wants a reaction.  He’s a performer.  My guess is he grabbed something and, because he was already somewhat hurt, he didn’t calculate weight, size and grip correctly and it just got him the wrong way.  I’ve done that before, and it has resulted in needing ice, etc.

Am I worried?  Yes, of course.  We got an e-mail from the psych that I’m still chewing on, but not because it’s a bad, uh-oh, this isn’t good e-mail, but rather because it’s a “think carefully about how you want to do this” e-mail.  So I’ll chew on that, and then I’ll tell you all about it.

That’s it for now.  I’m taking partial-Iron Man to the pool because the weather is fine.

A pattern emerges…it’s not a good one

All through the day, from the time Dada and TGG leave for work until they come home, J is happy and calm.  After going to the gym, while having dinner, J is calm.  And then, randomly and unexpectedly, we get “the meltdown.”

This doesn’t happen while he and I are alone.  I can tell him NO, ask him to help me when he’s engaged in something else, take him out of his routine, and he’s fine.  The only thing I’ve been able to pinpoint so far is that J has tantrums when Dada and/or TGG are home.

I know J loves Dada and TGG.  I know he likes to have them around.  I know he enjoys their company.  I don’t know why he would get upset when they’re here.  I’m trying to figure this out.

My guesses so far:

1)  Dada and/or TGG take my attention away from J;

2)  Dada and TGG don’t spend enough time with J;

3)  Dada and TGG are more easily spooked by the tantrums than I am;

4)  Dada and TGG pay more attention to J when he throws a tantrum;

5)  I pay more attention to J when he throws a tantrum while Dada and TGG are home (because he doesn’t throw them when they are not.)

Last night the tantrum came between putting on one sock and putting on the other.  J immediately went to SIB when he wanted his bandaids for his hand.  No warning sound; no hesitation.  SIB and that was that.

I made him go to the TV room, and he was going to hit himself again but I held his hand and jammed the iPad in front of him.  “We don’t HIT.  We SAY!”

The process is convoluted and frustrating because I’m trying to reason with a person who is just NOT into it…  So part of the effort goes into “talking him down” long enough to get him to understand that we’re trying to understand why he’s upset.  Anyone who has tried to “talk down” an individual in the Autism Spectrum knows this is often easier said than done.

Talk him down I did, but it wasn’t easy, and I had to make sure he understood that I was not happy about his behavior.  Once he got what he wanted, J turned into Mr. Charm…and I was not buying it.  I don’t buy Mr. Charm on a regular basis, and I flatly refuse to do it when it comes in the heels of being obstreperous.  After his outburst, and once he had re-engaged with his bedtime routine, J started the I LOVE YOU on maximum speed.  I sat down on his bed and explained that I love him, but that I was angry because he is skipping all the tools we give him for communicating and going straight to SIB.  I also explained that if he keeps using PAIN in his HAND as an excuse for melting down, he’s going to the doctor for an X-ray.  Even though J then backpedals on the melodrama over his hand, he IS going to the doctor.  I am fairly sure that he IS hurt, and he needs something more than his go-to remedies of sixty bandaids and a piece cut off from a pair of tights worn as a sleeve over his hand.  The medical implications of this situation do not escape me, and I don’t take them lightly.

While I figure that part out, however, I’ve been proactively pursuing ways to help J communicate when he feels “stuck.”  This morning we sat down with the printer, the laminator, and our go-to ASL website (http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi) to figure out the signs that can help him tell us what he needs.  I also printed four DON’T HIT signs to help him remember this particular point, and I printed a two-sided HELP! card with the word on one side and the signs on the other.  A reminder to use his Proloquo2Go hangs prominently in his TV room.

Of course, the e-mail in which my husband asks the doctor to give us a little more feedback so we can make an informed decision on J’s med dosage has been sent.  This e-mail is so beautifully composed, so eloquent and to-the-point that, when asked for my opinion on its contents, I replied to Dada that it makes me want to make long, sweet, slow love to him.  “So it’s ok, then?”  Yes, it was more than OK; it’s the e-mail that I can’t write right now because my mind is flooded with all the other things I need to address before I fully address this issue…

We’ll see how this goes.  So far this morning I’ve done everything humanly possible with a printer, velcro, laminating sheets, and chutzpah.  I’ve spoken to J; I’ve involved him in the process of making things clearer for him to make things clear for us…  I’ve anticipated everything that my addled brain can possibly anticipate.  I’ve agonized over having to give him more med, and I’ve researched as much as is available (and comprehensible to a non-scientist like me) on the internet. I’ve texted back and forth with J’s teacher, and I’ve asked for input from J, TGG, Dada, and the teacher.

For the time being, I’m tapped out.  I will see what the rest of today brings, and I will try to address what TGG and Dada can do to approach the situation better when they are home.  It’s all I have right now…

It’s time for chores (oh, so late in the morning that it’s almost afternoon,) and for engaging J in something that has nothing to (outwardly and obviously) do with behavior modification.

I’ll keep you posted.  Suggestions are welcome.

Ok, be A LITTLE intimidated…

Well, that was a meltdown.  A nice one, too.  And it started because we wouldn’t let J wear a sock on his hand.

When, I ask myself, was the last time he wore a sock on his hand????  Five years ago.

My jaw hits the floor.  Dada is pale.  We are, in a word, flabbergasted.

Is this regression?  Is this just him remembering?  Is this the beginning of another downward spiral?

“Well, we need to ask the doctor…,” Dada starts saying, and I have to remind him that tomorrow’s appointment is just J and his mother because there’s a trip to a facility two hours from here that cannot be altered, postponed, cancelled.  It’s just me and the kid who’s been confounding me all day.

I’m genuinely worried as I sit here feeling the acid reflux bubble up.

We have THREE large bandages on the hand, three small ones on the forehead.  The Proloquo has told us HURT and HAPPY.  What?  Are we suddenly John Cougar with the Hurts So Good????  The level of stress is pretty fancy right now…it’s got raisins in it, as Dorothy Parker would say.

The theories we are floating: maybe that little amount of med is not enough med and his body, six months later, has realized it; maybe this is a splinter cell of problems that have been building up; maybe he’s bored/tired/overwhelmed/lonely.

“Well, at least you’ll be at the doctor tomorrow…,” Dada says before I interject “yes, and it’s an outpatient visit to a place where they admit people…”

My shoulders are officially stiff and hurting.  My dinner is burning a hole in my esophagus.  It’s going to be a long night…

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

My problem with Donna Beegle’s story…

When a headline announces that a child has been kicked off a plane for being autistic, my first reaction is to go “WHAT?????????”  My second reaction is to back things up a bit and read every single shred of information on the matter.  A feeling of horror and mistrust creeps into me, and I wonder “will J ever be able to travel with us????  Is the world really as screwed up as that?”  The portrayal of the neuro-typical world as being populated with an endless amount of Simon Legrees is pretty overwhelming and scary.

Dr. Beegle’s account of the incident during which her fifteen year-old daughter, who is in the spectrum, was removed from a United Airlines flight that had to be diverted because of the pilot’s safety concerns can be found on Facebook.  There are, of course, several news stories regarding this issue that include video of the removal of the passengers, and accounts from other passengers.  United Airlines has stated that, after working to accommodate Dr. Beegle and her family, they decided to divert the flight because of safety concerns.

Dr. Beegle states in her account of the incident that her daughter had refused her pre-flight dinner, is a picky eater, they had snacks for her, and she’s an experienced traveler.  Noticing the signs that her daughter was going to be upset about being hungry, she asked for a chicken sandwich for her, but it wasn’t hot so she wanted a meal from First-Class, and the flight attendant said they couldn’t make an exception even though Dr. Beegle stated that her daughter is in the spectrum; Dr. Beegle then proceeded to say that perhaps they would help when her daughter started having a meltdown and scratching…  She got her hot meal, and wasn’t charged for it.

Why Dr. Beegle was surprised when the plane was diverted and she and her family were then escorted off it is beyond me.  She made, after all, a veiled threat of violence.  When a parent of a child in the spectrum says there could be a meltdown or scratching, they’re basically saying “shit is going to hit the fan, and it’s on you.”

Interestingly enough, Donna Beegle “is a highly experienced National public speaker, discussion leader, trainer,” and “has worked and written articles providing insights and strategies for communicating more effectively across race, class, gender and generational barriers for 17 years.”  Apparently, all these credentials flew out the window when it came to dealing with this situation.

Mind you, I don’t want to be catty, but…as the parents of a very autistic J I can tell you that we’ve been there and done that with the picky-eating, meltdowns, and so on and so forth.  A) You don’t announce that your child is a potentially-aggressive (either to him/herself or to others); B) you pack, pack, pack for every contingency, C) you are the one with the child in the spectrum, so YOU have to anticipate and prepare.

And then I come to my main argument: Juliette Beegle is described by her mother as having a high IQ, but has difficulties communicating.  Dr. Beegle is supposedly an expert in communication, and she failed -utterly and completely- in being her daughter’s voice in a positive and productive manner.  Instead of making arrangements with the airline prior to the flight, Dr. Beegle waited to be on the plane.  “Oh, but she didn’t have time!”  There’s always time.  Even if you have to alter your plans, step away from your dinner and walk up to the airline counter, there’s always time.  If the priority and the focus is your special needs child, you MAKE the time, and you put in the effort.

There’s one very simple thing I’ve learned from parenting J: any potentially difficult situations or discussion MUST take place where he can’t perceive them.  We are responsible for teaching J to navigate the world, and that his needs are outside the norm, but HE will have to adjust  as much as other people adjust to him.   In this day and age, an airplane full of passengers is not the place to say “when my child starts having a meltdown and starts scratching.”  It just isn’t the right way to approach the situation.  Dr. Beegle got what she wanted for her daughter, but her method was faulty.  You cannot cry wolf and then not expect the farmer to come out with a shotgun.

The worst part of this is that Dr. Beegle’s argument, when telling her story to the news, is that she says things like “If they had autism training when I explained to him when I needed something hot, we could have found a workable solution together.  But his whole view was, ‘I’m trained to give a first class meal.’ He didn’t understand at all. He was disrespectful, he was rude.”  She claims that she realized they were being asked to leave the plane “because of the fear of autism.”

Dr. Beegle doesn’t realize that she, with her behavior and attitude, has increased this fear.  Granted, people are not running down the street screaming in fear, but we now have countless incidents of individuals citing “autism” as a reason for some sort of mistreatment, discrimination, or shocking behavior on the part of a vendor or service provider.  Dr. Beegle, instead of anticipating her daughter’s needs once she didn’t eat her dinner, decided to wait to get on the plane and expect the rules to be bent to accommodate her child.

Yes, we all hope that compassion will take the day.  We all hope that a little more enlightenment and understanding is achieved in regards to our children’s special needs.  We all wish others could understand the shoes, even if they can’t quite grasp the road we tread while wearing them.  We want to help others know a little more, understand a little more, empathize a little more.  That doesn’t mean we are entitled to force knowledge, understanding and empathy on others.

I know about a child in the spectrum with communication issues.  I know about a child with behavior issues.  I remember the days when the bulk of our time was consumed with trying to help J figure out the best way to tell us something so he wouldn’t have a meltdown.  I know about the overwhelmingly depressing decision to put your up-until-then medication-free child on Risperdal.  My kid LOOKED like he wanted to (and could!) hurt people because he carried boxing gloves and wore a scrum cap.  I understand the frustration, the desire to protect and accommodate, the fear of causing a scene in public, and of being judged because of an extraordinary circumstance.  Her daughter’s IQ is higher than J’s (his diagnosis, after all, is Autism and Moderate Mental Retardation,) and I’m sure that an iPad with Proloquo2Go would be a stellar alternative for them.

I know this is probably a mean slant to take on this story, but I can’t help but think Dr. Beegle could have handled it much better than she did, and that -given her credentials- she did her daughter a disservice.  You use your strengths to help your child, and Dr. Beegle, communicator extraordinaire, failed in this purpose.  I empathize with her desire to accommodate her child and see the world doing the same thing, but this is not the way to do it.  The problem here isn’t “fear of autism.”  The problem here isn’t autism at all.  Autism was used as the reason for a potential threat to the safety of a passenger, and even if that passenger was Dr. Beegle’s daughter the pilot and crew were responsible for Ms. Beegle’s well-being.

Dr. Beegle needs to understand that she escalated the situation, and that the airline was -ultimately- looking out for her and her family, too.  She was provided the meal she requested after stating that her daughter was a potential threat to safety.  I can totally understand why the flight attendants  were concerned.  I would have been concerned, too.  As parents of individuals in the spectrum, we cannot (and should not) expect that our children’s needs will always be met in the way we want them to be met, and at the time we want them to be met.  Our main mission should be to make sure that our children have what they need to navigate the world more adeptly, more effectively, but not at the expense of other people’s rights, needs and safety.  This situation, or at least the magnitude of it, could have been prevented, or controlled.

Autism should be in the news to raise awareness, and in this particular instance the awareness that is being raised is that our children might just disrupt flights, pose threats to others…  That is not the way to do it.  We don’t need THAT kind of attention.