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…




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