Highlights (and lowlights) of 2012

Hear ye!  Hear ye!  The year is coming to an end…I can hear it sputtering as I type this.  I don’t know if I am as anti-2012 as some people seem to be; I know the year was far from stellar, but I don’t think it was as bad as some people are trying to make it sound.  I suppose that, yes, horrendous things happened this year, but…it wasn’t the year’s fault, was it?

So…here is my list of OUR highlights and lowlights for 2012:

Highlight #1: J no longer carries the four boxing gloves wherever he goes.  And amen…  That he chose to not carry them, that we had nothing to do with persuading him…that’s just icing on the highlight.

Highlight #2: J has taken like a duck to water to the iPad and the Proloquo.  We have some more work to do, but the very idea of him using this to communicate with us in just this short time is definitely a highlight.

Highlight #3: We can now eat in public places without having a foot ready to propel us towards the door, meal unfinished.

Highlight #4: J rides the bus morning and afternoon, which has saved us some gas and encourages him to be more independent.

Highlight #5: J is willing to try more foods that used to be like garlic to a vampire.  He might not react to them with the greatest enthusiasm, but at least he tries them without piercing our ears with his discontented screaming.

Highlight #6: J spends the whole of his day at school without his hats on; granted, at home we only see his head when he feels like it, but he’s out there in the big wide world without them…

Highlight #7: J now walks in and out of stores without buying anything; the compulsion to get one more thing is gone.

Highlight #8: J easily adjusts to TGG’s day and night shifts at work.  What used to be a huge cramp on his routine is now more easily accepted.

Highlight #9: J is comfortable with his doctors here; we can now say we have an appointment and it is not met with fear or anxiety.

Highlight #10: For the first time in years, the Twelve Days were met throughout with smiles and happiness rather than with an increasing feeling of tedium.

Lowlights: TGG’s car got rear-ended by the snow plow earlier this week and requires about $2000 worth of repair, but the developer of the neighborhood is paying because it was his employee’s fault.  Our parents’ health is declining, and that’s never fun to deal with.  We lost Miss JuJu under suspicious circumstances, but got Miss Zelda (which didn’t seem like an awesome thing the first few days.)  Dada’s much awaited and longed-for vacation was marred by the worst weather patterns ever…but…we can’t complain because it wasn’t hurricane Sandy and we’re all in one piece, have shelter and are together…  J’s guardianship issues are still unresolved; I get the feeling our attorney is not particularly motivated to resolve the matter and I’m going to have to call him on Wednesday and ask for an update and a conclusive plan of action or tell him we’re done with him.  J’s 18th birthday is EXACTLY a month away…this is one lowlight I could have done without…

What do I hope for in 2013?

Peace.  Happiness of the kind that doesn’t burst or whistle…the kind that just is will be fine.  I wish and hope for progress of the kind that doesn’t overwhelm J too much, and for patience when it doesn’t happen as quickly as I’d like it to happen.

I hope to get older, and for Dada to get older, and for TGG and J to get older, too.  There is something beautiful about getting older, and it’s called being alive.  Yeah, that’s what I hope for…and I hope it for all of you, too.

Have a happy, safe and blessed new year.

 

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And it’s the Twelfth Day…

Copious snowfall on Friday made for an interesting at-home Saturday.  J insisted, very early, on getting dressed and going outside.  No one was, at such an early time, enthusiastic about this endeavor but, for the sake of peace, quiet and friendly negotiation, we drew straws and Dada got to get dressed (pre-caffeine) to endure the elements…

Being the household bookie, TGG took bets on how long J would last outside.  I was hopeful, so insistent was he, that once outside, he’d totally get into it and trudge through snow for about five minutes.  Dada, who layered up as if about to recreate the Terra Nova Expedition, said “you watch…we will step outside and AH-AAAAAH!!!!!!!!!!  I give him thirty-five seconds…tops…”

With all due respect to the valiant gentlemen, if Scott, Wilson, Oates, Bowers and Evans had done what J did, they’d have lived very long, happy lives with a minimum of consequences from the cold.  The AH-AAAAAH!!!!!!!!!!! came at five seconds, and -in spite of Dada’s “I put all this gear on” insistence- J bounced back into the house so fast that his PT would have been impressed to witness such alacrity and bounciness.

The rest of the day, Dada would periodically ask J if he had any interest in exploring the great outdoors, and J either ignored the question or answered NO quite loudly.  I don’t blame him…I actually waited until Sunday (when it was a balmy 32 degrees) to venture to the mailbox…

In the midst of all this cold and precipitation (which have provided us with a polka-dot Christmas rather than a solid-white one,) we have managed to progress through the Twelve Days until we’re finally on the Twelfth one.  Of all the years we’ve done this, this is the year when J has been most engaged throughout.  While other years show a lull in the middle of all that picture-taking, this year has documented closed-eye smiles more frequently and a keen interest in other people opening their packages.  We think this particular interest results from J’s desire to have the thing over and done with so he can have the living room back for himself, but we still treat is as a sign of progress.  J sits with us, engaged and involved, until the last present has been unwrapped, enjoyed, passed around, photographed and been thanked for by the recipient.  Last night he was fascinated with TGG’s new Star Wars In Your Pocket from thinkgeek.  You press a button and can hear R2D2 beeping happily, Yoda proffering wisdom, Darth Vader telling Luke he’s his father and so forth.  His favorite was Chewbacca’s roar…now, that’s a kid after my own heart.

So tonight marks the end of our gift-giving, and the Twelve Days board will be full and the cupboard in the hallway will be empty.  All our parcel paper has been sent to the recycling bin, all the string has been repurposed, and tomorrow morning we will generate infinitely less trash than a lot of other people.  This is a huge relief for us because we have seen many a community dumpster brimming and spilling by noontime on Christmas Day.

This year I’ve been subjected to J’s relentless playing (we are all fond of the REPEAT button on the CD player, aren’t we?) of a version of Joy to the World that has been driving me bananas.  The song itself is not the problem, but the interpretation has been grating on me since the first.  The woman singing, I complained to Dada, is butchering the word “righteousness” pronouncing it as “righteousNAAHSS.”  He said I was exaggerating until he heard it…that’s when I saw the wince.  J, of course, retrieves the CD so quickly and mixes it in with all his other discs, that I didn’t quite get a glimpse of what it was until this morning.  The guilty party in this atrocious pronunciation is no other than Jewel.  I guess she was going for that guttural thing she does after the lilting thing…  It’s driving me nuts…

On Saturday, J informed us with his Proloquo that he was “excited” right before we did the Twelve Days.  He has been greeting us with hearty GOOD MORNING, HELLO and MERRY CHRISTMAS as he walks around the house with his iPad and stylus.  Better yet, yesterday he had a conversation with TGG regarding lunch.  TGG came to ask if J wanted a share of the store-bought pizza he was about to pop in the oven.  J took out his iPad and said I WANT PASTA WITH CHEESE, PLEASE.  I WANT A SODA, PLEASE.  We have created a folder entitled MY FOOD, and it has all of J’s usual choices and a few he wouldn’t regularly ask for, and I’ve configured it so that it speaks a complete sentence.  Gotta love that!  J can now ask for things in complete sentences rather than with one word, and -this is gorgeous part of the whole thing- he feels compelled to carefully repeat what the machine is saying…

How’s that for rock and roll, kids?????  🙂

So, we enter that very last of our annual gift-giving nights feeling pretty darned good about our gift choices for this year.  J is proactively pursuing using the iPad for the Proloquo2Go and the Proloquo2Go to communicate his wants and needs and moods to us.  That beats 12 drummers drumming, 11 piper pipings, 10 lords a-leapin’, 9 ladies dancing, 8 maids a-milkin’, 7 swans a-swimmin’, 6 geese a-layin’, 5 golden rings, 4 calling birds, 3 French hens, 2 turtle doves and the partridge in the pear tree (although our own pear tree would be pretty friggin’ kick-ass!) any ol’ day…

May your days be merry and bright…and if your Christmas be white, may you have the means to shovel a path without compromising your lower back, your blood pressure and your patience.  Blessings to one and all…

I send my love out to you, and I hope it makes you smile…even if for a brief moment.

 

In praise of The Twelve Days…

Today is the Eighth Day of Christmas.  I confess that this doesn’t really get old…you’d think we’d be tired of the trickling in of packages, of getting a gift per day.  It is, in fact, a very soothing way to handle the holidays…at least for US.  I don’t know how other people deal with Christmas morning, but we were usually a mess when it was done.  Brown paper bags that had been leftover from gift-wrapping were used for hyperventilating.  J would be prostrated for most of the day, and we were not in much better shape.  I think the idea of a day when the holidays reach a climax with a bounty of gifts piled willy-nilly under the tree while lights flash and everything is super-duper special is not conducive to Peace on Earth, Comfort and Joy or anything that we wanted to experience Christmas morning.

In a nutshell: Christmas morning and Autism can be a bad, bad, bad combo.  If you’ll notice, there are no Hallmark movies with this element thrown in for “conflict” and there are no major motion pictures in which an autistic individual walks into a room to be assailed by the trappings of Christmas…all at once.

On the 13th of December we take out our 12 Days board, and J knows that we’re in business.  The pattern for the next twelve nights is clear cut, and he knows where we’ll sit, what we’ll do and that we will all be noisy and laughing and taking pictures.  His is always the first present to be opened, and no, he’s not excused from the rest of the ritual.  We all sit politely (and noisily) to wait for our turn.  It doesn’t take more than fifteen minutes (on nights when the song is in its longer stages) and we all get to make eye contact, hug, kiss, interact, all while receiving a token of everyone else’s affection or sense of humor.

On the 24th of December, we finish this nightly ritual and the 12 Days board is left out where it can be seen to be complete and done, and on Christmas morning we each take our stocking (which hang on our bedroom doors) and retrieve whatever is in there.  Breakfast is another noisy family ritual, another Sunday event that falls on whatever day the 25th is.  J is fine with all this.  He gets one movie or book or toy or t-shirt at a time, and he doesn’t have to agonize over which one to enjoy right away.  If he gets a t-shirt (which he will tonight,) he can wear it right away (and he might,) or leave it ’til the next day.  If he gets a movie, he doesn’t have to go eenie-meenie-minee-mo, he can either watch it or put it aside.  I remember, as a kid, being torn over reading this or that book right away, or playing with this toy instead of that one.  While I could process that quite easily, for J (and other kids like him) it’s not as easy.

Someone asked me if I thought it was OK to get each person in the household 12 presents.  They actually went on to berate me for being “materialistic,” and giving my children the impression that “consumerism” was the purpose of Christmas.  I patiently told them to go home and count how many presents they had bought for family members, friends, co-workers and acquaintances, and to tally up how much that had cost them.  “Oh, well,’ came the response, “it’s only once a year!  And my husband’s business associates always give us things and we have to reciprocate.”

Uh-huh.

This is my humble opinion: I’d rather buy 12 presents for my immediate family than a pile of “token gifts” and “business gifts” for other people.  At the end of the day, because our Twelve Days are so meaningful to US and we take it as Family Time, we plan the gifts to please, tickle the funny bone, warm the heart, and not rip to shreds our already strained pockets.  J’s iPad and Proloquo2Go were the biggest investment we made for The Twelve Days this year, and that it has been worth every penny is the greatest understatement this year.  Everything else has been firmly planted in the realm of the financially modest.  This is the time of year when we say “I’ve been paying attention all along in spite of the fact that it looked like I was gnashing my teeth at the time.”

So far, Dada has received a Darth Vader light saber (bought by TGG because he IS their father,) and a light saber duel was conducted in the dining room.Darth and Luke

TGG received the latest (hardcover) installment of Captain Underpants, and -even at the age of 21- reacted with the same gusto and enthusiasm as he did when he was ten.  We could hear him laughing (sounding like he did at the age of ten) all the way downstairs.

J, aside from his iPad, has two more Wishbone DVDs that were met with the “I have to close my eyes while I smile because this is too cool to smile in any other way” smile.

I have books.  And movies.  Last night I watched The Best Exotic Marigold Hotel (starring my hero, Judi Dench) and I will wait until J goes back to school to watch Ninotchka and 84 Charing Cross Road, for one I laugh too loudly and for the other I need a whole box of Kleenex as the end approaches.  TGG gave me a rather large and fuzzy stuffed gorilla I HAD to name Francisco because anyone who’s seen Elf knows it’s a fun name to say.

As you can see, there is nothing “over the top” about our celebrations, and the emphasis is on making each person smile, whether over a family joke or an observation made over the course of the year.  We don’t wait until Christmas morning to pile our best intentions on top of each other and overwhelm J with them.  Looked at from a distance, yes, it seems like twelve items are a lot, but the truth of the matter is that each of us would get more than 12 presents if left to plan freely for a Christmas morning gift-opening extravaganza.  We’ve removed the “which package do I want to open first?  There are so MANY of them!  I’m freaking out!” factor from our holidays…  The same person who criticized the 12 gifts challenged our process by saying “isn’t the song one of these, two of that, three of the other, and so forth?  Why don’t you do it that way?”

At that point I just rolled my eyes.  I didn’t want to say “which part of J can’t handle over-stimulation don’t you get?  Which part of “this is a lifestyle choice” are you not comprehending?”  As she walked away she told me that I was condemning (yes, that was the word she used) TGG to instituting “unusual holiday traditions” for his children simply because I didn’t want to “tackle J’s challenge with Christmas morning” in the proper way.  That, I was informed, only teaches him that his family will adjust to him and his needs.

Sigh…these are the moments when the C-section scar itches.  Something inside me yells “DU-H!”

Of course we need to think of his needs!  Of course we have to work to preserve his peace of mind while teaching him to navigate the outside world!  That doesn’t mean we can’t, for our own sakes, make the holidays a little easier for someone who processes information differently.  That doesn’t mean that the Twelve Days aren’t (like goofy greeting cards with families wearing the same outfit, or whatever other quirks people consider “tradition”) part of our family’s identity.

J’s comfort is important to us.  Our comfort is important to us.  Our holidays are not about pleasing outsiders, but about showing affection, sense of humor and togetherness.  In a world as mixed up as the one we live in, and with a kid as interesting as ours is, that is the important thing.  We have faith that we will pull through all the crappy times, but we also have faith in each other…that we pick our battles when it comes to Christmas shouldn’t bother anyone.  It is, after all, a lifestyle choice attached to an extraordinary (although statistics wouldn’t call it that) circumstance called Autism.

 

Less than three hours to go…

When J gets home at 3 o’clock his vacation will start.  I am ready.  As ready as can be am I…a la Dr. Seuss or Yoda, your choice.  The truth of the matter is that I am excited about the prospect of two exercise sessions and two “work with the Proloquo2Go” sessions with J each day while he’s home.  I don’t expect him to recite the Gettysburg Address by the time school starts up again, but I know once the paperwork for school is done, he will be more skilled with this resource.

Yesterday we took some time to find all the items included in his afternoon snack and evening meal in the app.  One by one, we tapped on them and J not only picked up the item and compared it to the one he could see on his iPad screen, but he also repeated the word.  Tonight we will be sitting down as a family to create a folder (which we’ve all had a chance to make suggestions for) that J can access immediately for his most frequent requests.  The purpose of the exercise is that we all contribute to customizing the folder and we all learn to work with the app so we can properly model it for J.

The iPad, contrary to all my worst fears, has been a huge success.  J is comfortable navigating his apps and using the stylus.  The one thing that I have had trouble with is getting him to work with US rather than by himself.  Hence the institution of iPad Learning Time as a scheduled activity.  Like exercising with the Wii and helping in the kitchen, this will be a carved-out period of time when the iPad is purely instructional and not just for his entertainment.  I have managed short ones of these periods so far, but they have been productive…J is now opening the Proloquo2Go and investigating on his own, but I know we will get farther and more efficiently if we make short “lesson plans” and work our way through them in an organized manner.

When J got home from school yesterday, he brought one other piece from Ceramics class.  A note in his bag informed us that other pieces were damaged in a kiln malfunction, but that there were pieces yet to be fired that we would be getting after winter break.  J was very proud of what he did bring home, and gently placed it in a “look at me!  look at me!” spot in the dining room.  The “look at me!  look at me!” spot is reserved for unexpected treasures and surprises, like letters we were not expecting, non-perishable snacks found after years of not seeing them at the store, J’s artwork and such other things.  Once the delicate bowl had been put there, J proceeded to fill it with the candy his bus driver and aide gave him as a Christmas treat, and then he sat to look at it with admiration.  I don’t know if the admiration was intended for the candy or the bowl, but J seemed happy to see both together.

All these happy events are clouded by the events of last Friday.  We constantly remember and remind each other of how blessed and lucky we are, and -because I’m getting more sentimental as the kids get older- I have now a tendency to react more emotionally to the joyful moments.  I’ve always been a sucker for J’s achievements, regardless of how infinitesimal they may seem to others.  Sunday’s FOOD, FOOD, COKE, COKE, I moment was very nearly a tear-jerker, but I held it together.  At the rate we’re going with all this newfound spontaneity I won’t be able to keep it together for long.  J’s reaction to hearing MY NAME IS J with his picture displayed was so charming and exciting that I had to reach for a paper towel.

The one thing that keeps recurring in message boards in response to Friday’s events at Sandy Hook is people’s latching on to the whole “he was autistic” angle.  Out of nowhere, firm believers in the idea that people with Asperger’s are prone to violent behavior “they feel bullied” have gathered strength and are citing “multiple studies” they’ve “heard about” in the media.  Of course, an “official” response was necessary and CNN carried it as a banner yesterday:  http://www.cnn.com/2012/12/17/health/connecticut-shooting-autism/index.html?hpt=hp_t2

One thing I’ve noticed: not many people really pay attention to CNN these days.

Or to NPR: http://www.npr.org/templates/story/story.php?storyId=167360141

Instead, newly-minted “experts” whose research is based on what they’ve read and googled are springing everywhere to comment all over the internet that every single person who has been involved in perpetrating a mass murder has “shown signs” of being in the Spectrum.  Everyone knows a friend of a friend who had a kid who went ballistic and wouldn’t leave his room and it was “obvious” they were autistic.

Here we are, looking for a way to get past the difficulties of J’s Autism and now we have to contend with the not-Rain-Man-but-rather-a-potential-killer stigma.  The distinction between a developmental disorder and mental illness seems to be too nuanced for regular folk to wrap their minds around.  This gives me pause; in fact, it worries me.

Autism seems to have an aura of mystery around it.  Notice, please, that most reports, TV features, articles and feature stories in magazines allude to its “elusive qualities” and how it continues to “baffle” researchers.  It’s bad enough that our kids have meltdowns in public and we are, by turns, embarrassed, mortified, frustrated, determined to change the behavior and just plain tired…if the current informational tide doesn’t start turning away from a “cut and paste” diagnosis, people will start ducking behind store displays if an autistic kid so much as yells because mom said NO.  As far as I’m concerned, we’re misunderstood enough as is, and we don’t need the cautious and suspicious looks this might trigger from gullible strangers who have decided some guy with Asperger’s went postal in a school.

In response to a clarifying comment I made on Huffington Post, I got a “your response disappoints me.  It has no wisdom.”  The thing is, and I hate to admit this, if a parent of an autistic individual speaks from the heart, we are considered “emotional and whiny,” and if we respond sticking to facts and in a dispassionate way we “lack wisdom.”  It’s hard to explain that there is a thread that connects us all; we have a pretty good idea of what goes on in other homes were Autism has made a nest and is comfortably planted, but we each have our own little combo of seasonings and garnishes to contend with.  We can nod knowingly, with the understanding that we’ve seen or heard the same thing with our kid, but the degree may vary significantly…

I don’t know if there is any wisdom I can impart on this subject, other than we succeed and fail at parenting in the same way that other people do.  Our kids, however, are wired differently, and our failures and successes are all the more crushing or elevating.  This is true of any parent with an exceptional child.  Our timelines are different, and we tend to be hyperbolic in our joy and enthusiasm because it’s taken us a little longer to get there, and this is, in itself, cause for people to not understand us (nothing worse for the parent of an autistic individual than someone reacting with a mere shrug when one says “and then Timmy said NO THANK YOU!!!!!!!”  People tend to think Timmy finally was polite when, in fact, Timmy just responded verbally and appropriately to a social cue.)

We have made great strides in getting people to recognize the word Autism and not immediately think Dustin Hoffman in Rain Man, and it would be tremendously discouraging to now have to work on getting people to disassociate Autism from Adam Lanza, Sandy Hook Elementary, Bushmaster, 27 people killed.  Balance must be achieved in the press, but the question remains as to whether people will actually listen to a clarification when the idea has already been planted in their brains…

And with that mindset, J’s vacation starts…

 

 

 

FOOD…FOOD COKE COKE I…

As we left the house this morning -for yet another trip to the grocery store courtesy of my own forgetfulness- a deep man’s voice chimed in from the back seat: FOOD…FOOD COKE COKE I…

I looked over my shoulder and there was J, staring intently at the screen of his iPad with the stylus in his hand, and his eyes lifted towards me and he tapped the message line again.  FOOD…FOOD COKE COKE I…

In the words of Scrooge (as uttered by Alastair Sim) “I don’t deserve to be so happy.  I can’t help it!”  The syntax, we know quite well, was all wrong, but boy, oh, boy…what a feeling! (As Irene Cara would sing.)

Not only did J spontaneously compose a “sentence” that said exactly what he wanted, but he also repeated what the machine was saying.  There is no more digging through trays of PECS (which we’re keeping, of course, for home use and because we don’t want to be totally reliant on technology,) and no more pointing insistently at things without uttering a word.  J took his iPad, put it on his lap, and looked through his Proloquo2Go to find what he wanted to say.

Everyone who reads this knows I’m a cryer.  I am profoundly moved by my son’s achievements.  I think a lot of parents of autistic kids are like that; because the achievements and successes are so hard-won, we just relish, savor and treasure them.  I’ve never seen a group of people dance around with as much enthusiasm as we did when J first used the toilet without being prompted.  Ok, maybe we did a similarly enthusiastic dance the first time he slept all night without wetting his diaper.  Perhaps we approached the same celebratory stylings when he didn’t take his boxing gloves to school for the first time…

When you get your blue-ribbon moments after much agonizing and trying (if at first you don’t succeed, try, try, try, try, try, try…you get the picture,) the shade of blue tends to be brighter, more vivid, and bluer than any other shade of blue.

Because J asked for food as prettily as he could (considering that syntax is far from a big deal when you take into account that the kid doesn’t really SPEAK!,) we asked him WHAT FOOD specifically he wanted.  He looked at the FOOD folder in his Proloquo for a while and, after what was obviously careful consideration, he asked for HOT DOG, FRENCH FRIES and COKE.  So off to Five Guys he and Dada went while I walked around the grocery store looking for the items on my list.  I am sure many people wondered why I had a goofy smile on my face while my eyes were brimming with tears.  The state of my hair, combined with these other elements, must have pointed to a drinking problem.  Quite honestly, I didn’t care…our kid had just disjointedly, but spontaneously told us what he wanted to do.

At the store I noticed an abundance of parents, some moms and a few dads, shopping with their kids.  I don’t know if this is a result of Friday’s events, but there seemed to be a lot more interaction, a lot more hugging, a lot more “don’t stray from where I am” from these parents.  The mood was not joyful; there was no music playing over the PA system, and while people were not somber, they also weren’t as buoyed by the holiday spirit as they had been last Sunday.  I am a people-watcher (a habit I picked up as a little kid so I could properly mimic relatives and teachers, and to be able to describe them in glorious detail when I wrote my little stories,) and I noticed a significant difference in the way we’re all tackling this sad, sad weekend.  Our kids usually are seen off as if they’re heading out with Marco Polo and returning from Guadalcanal in one piece.  TGG lingers for his hugs before leaving for work, and then lingers for his hugs when he makes it back home in the morning.  We had to ask him to chill around J because J was starting to give him the fish-eye.

But back to the Proloquo…

When we returned from the store, I sat down with the program and better organized the folders J will use more frequently.  It is AMAZING how many things there are in there for him to access.  Currency from different nations, words relating to different religions, all sorts of PECS that will allow him to properly convey what he wants, regardless of how overwhelmed he is.  I sat with him and showed him some of them, and he was very interested in the whole thing.  Tomorrow I will work on editing some more folders for him, and then we will schedule a half-hour period twice a day to work on further familiarizing him with the app’s contents.  If this doesn’t seem exciting to you, then I’m telling it all wrong, but I am over the moon and we can’t wait to see how far we can take J with this over the course of winter break.

Our last appointment with the psych was on Tuesday, and we’ve scheduled some blood work for the end of the month in anticipation for weaning J off his med.  I think we are now in a better position to attempt this, especially since by February we are hoping to have him more skilled in communicating his moods and concerns through the iPad.

Yesterday evening, however, we realized that we had made a boo-boo.  I will say it might have been the result of the previous night’s anxiety-laden sleeplessness and the ensuing tiredness.  As we were getting dinner ready and Dada was lining up J’s med, his face turned pale and he got that “oh, no” look I’ve come to dread.  What!?  What!?  He turned to me, now turning ever so slightly green, and said “we totally didn’t give J his med this morning!!!” I rewound the tape in my brain, and went back over the whole day.  “Didn’t YOU give it to him?,” I asked, turning a little green myself.  Dada shook his head very slowly.

It was one of those instances when the whole “when you assume you add an ASS to YOU and ME” would have chimed out of my mother’s mouth.  I assumed he had given J the med, and he assumed I had.  And J went med-less all day.  We KNOW the effect would not have been immediate, but we were appalled at our own forgetfulness.  J, you see, had lingered in the kitchen dispensing knowing looks that neither one of us could figure out, and I suppose he gave up on anyone giving him his med.  Of all the days, yesterday was the day when I didn’t annoyingly repeat “did J get his med?” twenty-thousand times.

Yes, we have an app to help J communicate with us, but yesterday we most definitely dropped the ball when communicating with each other…

And cue the sighing…

The morning after the iPad…

The Second Day of Christmas was somber.  We didn’t light up our balconies and deck; it just didn’t seem right to do so in the wake of such heartbreaking events in Connecticut.  As we gathered around the Christmas tree, we felt a little bit like bandits who have stolen a moment of joy and togetherness when so many families are torn apart…  

It was supposed to be “fun present night,” and -in the strictest sense- everyone got something totally awesome, but there was a lingering sadness in the proceedings.  The thing is that so many people’s holiday season is now merely the preamble of a lifetime of sadness and longing; we would’ve skipped Second Day if it weren’t because of J’s intrinsic need for structure and schedule.  

J got his iPad.  He loves it; he still has to get used to some of its more convoluted “tap here, double tap there, and swoosh!” aspects, but he is happy with it…no question about that.  Today we went to the grocery store and he used the Proloquo2Go to ask for items he wanted; when we went to buy lunch, he proudly used it to say I WANT A CHEESE QUESADILLA AND A COKE.  The girls at the restaurant, who know him and are fond of him, were so happy and congratulated him so heartily that he even turned a lovely shade of pink.  

While we used the iPad today in a more informal, flying-by-the-seat-of-our-pants way, we intend to make a concerted effort to use short periods of time to work with J so that he learns how to best navigate his program.  With the Magic Piano he’s having no issues at all…he is quite adept at following the dots and keeping time as he should rather than, as the rest of us have done, going too fast or too slow.

I added photos to his iPad, and he was very happy with those.  We added pictures of us and our names to the Proloquo2Go, and it now calls us when he taps on our pictures.  In less than 24 hours, the thing has done what we wanted it to do, and we’re sure that we’ve barely scratched the surface.

I have yet to hear back from Dr. No, but I now intend to tape J using the iPad to communicate with us so that she can see that it not only allows him to “talk,” but it also encourages him to speak.  He has been using his words more since he figured out that the machine speaks so clearly…

That’s all I’ve got today.  I didn’t sleep well.  I woke up so many times, a feeling of dread and sadness jarring me out of my drowsiness.  I don’t know how soon people will start pushing away the feeling of wrongness that currently hangs in the air, but I hope they don’t…I hope they never forget it.  I hope they stop to think, very carefully, of how we got to this point and why these horrible things might be happening.  

And now for the Third Day of Christmas…