Definition
by BrianRobinson
 Kaleidoscopic
Jan 24, 2012 | 4879 views |  0 comments | 28 28 recommendations | email to a friend | print | permalink
     It appears to be official - the definition of autism will change soon.  The article itself doesn't have any specifics, but this article says the proposed definition at the time was "...the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu."  For a fuller breakdown of what repetitive behaviors qualify, you can go here.
     Before I get to the rest of this blog post, I recommend if you have any concerns over whether or not you or someone you know would have problems in the new definition, you call your physician/pediatrician/neurologist or whoever gave the diagnosis of autism and talk to them.  I also recommend you stay calm - I would bet they're getting swamped right now.  Good luck.
     I don't know how we'll be affected yet.  Taking my own advice, I've got some calls in to various people and will get more information and see how we need to go from there.  I don't know how my wife's support group will be affected either.  As with much in this life - my particular one and in general - it's a wait a see situation.
     It's worrying, of course.  If Xan is decided to not be autistic, I kinda don't think the banishing of the diagnosis will remove his problems in turn, POOF! - like changing a book's contents by switching the dust jacket.  He'll still be very nonverbal, still be sensitive to sounds, still have his issues both obvious and obscure.  He just may not be able to access materials to help him with that and be in a class that can allow for his situation.
     In short, changing what they say he is won't change anything about who he is.
     It's sad to realize and know that in that classic self-test of "describe yourself", for him, 'autistic' will probably be high on the list if not the first word that comes to mind if he could answer.  Sad, but necessary, because to a great extent it does define him, his troubles, his frustrations, his special needs that we have to be aware of and adjust for and be ready to help with.  Perhaps some families choose to ignore, or maybe lie, about that first word in their child's definition, using excuses like 'they'll grow out of it' or 'just a phase' or 'everyone's got some quirks'.  I would hope not, but maybe some people use the definition of autism as an excuse or a chance to game the system.  In some cases perhaps this new DSM definition will winnow out people like the hopefully fictional character on Glee, of whom I was not particularly impressed nor offended, which would not be the case for anyone trying to game the system by spreading the meaning of autism so thin you could read through it. 
     While I worry about what the change may have in store for us, one thing I don't want to do is make his MAIN definition be 'autistic' for anyone else who chooses to describe him.  I prefer it to be brilliant, for being able to do so much and be so smart with everything he has to go through.  Or strong, for being able to function, if imperfectly at times and badly at others, even with the daily odd feelings he has to go through.  Or clever (not to leave out the close cousin 'sneaky') for being able to work around his communication problems and still get across a lot of what he needs to be known. 
     As I said before in another post, he IS autistic - at least according to current diagnosis - but that does not have to be all of who he is.  I will never allow him to be dismissed by his definition, as if that one word is the fullest possible description of who he is. 
     So, while I will argue that he is autistic and does need the services and help he gets now, I will not use that as a limiting border for him.  He can, does and will transcend and overcome his problems.
     While the word autistic defines his condition, it does not define him.


     In other news:  The 2nd Annual Calhoun County Autism Walk is a go.  It is again being done by my wife's local support group, web site www.calhouncountyautisminfo.com.  It will be April 28th, at Oxford High Stadium.  If you want to join, volunteer, donate or what have you, e-mail me at BHRobin@aol.com and I will get you any information you need.  For more information on the walk or any other autism questions, check out her site.
     Hope to see you all there.
Story
by BrianRobinson
 Kaleidoscopic
Jan 08, 2012 | 2299 views |  0 comments | 23 23 recommendations | email to a friend | print | permalink
    One of my college friends set up a monthly challenge, where we would get a topic and a sentence once a month and have to write a story from those.  This has sparked my interest in writing again, so over Christmas I scribbled out this story, which is an attempt to guess/imagine what Xander sees and feels.  The formatting is intentional - assuming it copies over well - and the asterisks refer to down to the bottom of the story for more information.

How true it is, or close it is, I don't know.  But here it is:

What you need to know:

Our son is autistic.  He is high-level, but limited verbally.

 

 

What I See:

 

My son is jumping in front of the Christmas tree again.  He jumps, laughing, and at the peak of his jump he arcs like a fish broaching the air, slapping his thighs and laughing a pealing, stuttering, full-throated bellow.  He seems okay - I have to watch to make sure he doesn't get too amped up and start looping(*) or getting hysterical.  But for now...I speak too soon.  He begins to fling himself at my Swiss exercise ball, turning in midair and landing on his back, bent nearly head to heels, bouncing up, landing, spinning around and doing it again...and the ball is rolling away..."Xander!  Wait!"...Too late, he lands off balance and rolls and hits the ground.  "XANDER!"  I get up and run to check.  "Are you okay are you okay are you okay?"(**) he asks, so something hurts, but I don't see any blood and his arms and legs move fine.  Before I can say anything to him he tears away from me and runs to the dining room and slams his head on the table four times, hard, I see the books and papers on it jump from the impact.  He's hurt...I can't see where...I have to wait until he calms down so I can check him more throughly.  It takes a while.  When he does, I see a large carpet burn on his arm.  He goes back to jumping.

 

 

WHAT HE EXPERIENCES:

 

redBLINK

   greenBLINK

  blueBLINK

(JUMP)

         redBLINK

     blueBLINK

                 greenBLINK

(jUMp)

     redBLINK

    blueBLINK

                                         greenBLINK

(jumP)

redbluegreen BBBLLLIIINNNKKK

happyLAuGh

(jumP)

redbluegreen BBBLLLIIINNNKKK

{pink}happylaugh

{Brightpink}happylaugh

(jumP)

redBLINK

              greenBLINK

    blueBLINK

Bluebouncyball...

(JUMP)

(BOUNCE)

 

                             (***)

(JUMP)

(BOUNCE)

 

 

(JUMP)

Daddyvoiceclearsmooth   XanXdaenrdWearWitait(****)

 

BouncE

 

(thud)

BUrnReDa   r    M 

 

DaddyvoicegoldloudsharpscareXANXDAENRD  E  R  

SCaredhuRTConfUSed

HurtBuRn  "Arae yroeuy ookua y?"

hurTBuRn  "AREA yRoEuY oOkUa  Y?

HUrTBUrn  "AREAYROEUYOOKUAY?"

HURTBURN

H34787487489849UredbluegreenRscaredroughloudTwoodroughpain(*****)

 

(SLAM)(SLAM)(SLAM)(SLAM)

 

 

(******)

 

 

 

ArmHURt

ARmHuRt

armhurt

 

 

 

 

redBLINK

           blueBLINK

  greenBLINK

(JumP)

 

redbluegreen BLINK

                   BLINK

                   BLINK

 

{goldlaugh}

 

 

 

 

(*) - Looping - Our inexact and unsanctioned name for what happens when Xander has something that bothers him but can't quit doing it, like a permanent loop on a program, a scratch on a record, or poking that sore in your mouth.  When he was young, A-B-C, A-B-C, A-B-C would be a loop, and unstopped would start a meltdown.

(**) - Xander has verbal shorthands, a kind of audio code.  "Are you okay?" means he's hurt somewhere.

(***) - one of his physical therapists told us that in addition to all the sensory issues an autistic child has, they're often dealing with odd signals from their body, never quite comfortable in their own skin, like an all-over pins and needles feeling and not knowing quite exactly where your body parts are.  From watching my son, I noticed he loves bouncing, jumping, swimming and swinging, and I thought that perhaps those few seconds of weightlessness in those activities helped him feel nothing at all.  Hence the blank space.

(****) - one scientific article I read - I tend to up keep with autistic news - said a few studies have shown that autistic people's brains sometimes process auditory information a few microseconds off from one side to another.

(*****) - a throughly inadequate attempt to visually describe what kind of agony a sensory overload must feel like - the pain, the jagged and off sensory input, a rush of overload.

(******) - headbutting is pretty common.  I've come to think of it as a way to say I'm really something - hurt, overloaded, frustrated, confused - and also a way to reset, kind of like the weightless feeling from before.

Birthday
by BrianRobinson
 Kaleidoscopic
Dec 15, 2011 | 3911 views |  0 comments | 25 25 recommendations | email to a friend | print | permalink
The Strange and Wonderful Creature had a birthday this week.  Ten years
ago...
     We hadn't slept much the night before.  Tracy had a scheduled
inducement early in the morning, and that appointment kept us awake
better than Xander ever would.  We played Scrabble, talked, prepared,
re-checked all our luggage, the car seat, gas in the car...anything.
     We left early to get to the hospital.  As we left the apartment we
were living in, we bumped into our next-door neighbors who we didn't see
much of.  The man said, "So, what's new with you guys?"
     Sometimes the comedy gods are giving,  I turned and pointed at
Tracy, who was obviously pregnant, and said, "Eh, nothing much."  They
congratulated us, talked happily, helped me load the car with the
suitcases, CD player, whatever else.
     We got to the hospital.  We had been told to be there at, I think,
7:30 AM.  No later.  I suppose they may have held the threat of making
Tracy wait another month if we were late - don't really recall.  Of
course, when we got there, we had to wait for quite some time and had to
refill all the paperwork we had done before for a pre-check in, to save
us all the time we then used to refill in everything again as we waited.
     We finally got a room, got settled in.  When they hooked Tracy up to
the monitor, it turns out she had started labor at some point.  Gotta say
this - these doctors knew timing.  She got in bed, hooked up to monitors,
tubes, what have you.
     I practiced looking calm and staying out of the way.  Best training
for dadhood.
     We had mixed up some CDs to play while we waited for our son.  I
asked where I could plug up the CD player, and a nurse said, "Oh
anywhere.  Unplug something."  Um?  Ma'am, we're getting ready for our
first child in a completely all new experience for us - I'm not
unplugging ANYTHING without your express permission, the okay of the
attending doctor, and if it's not too much trouble, a signed statement
from the CEO.
    I needed more practice at looking calm.
    Time went on.  Tracy's family and mine came in the room, kept us
company.  One of the nieces really enjoyed watching the monitor and
telling Tracy when she was having a contractions.  I'm not sure Tracy
needed the confirmation, but it was awfully cute.  For me, anyway.
     It started to get more serious and most people were ushered out of
the room.  Pushing in earnest commenced.  I did my part, holding her
hand, telling her she was doing fine, all that stuff you find yourself
relegated to here.
     Xander had decided to start his life of making ours interesting and
wouldn't move.  We could see his hair, but that was all he deigned to
show us.  So Tracy was scheduled for a C-section.  They wheeled her out
to get her there, I went to update everyone what was going on, came back
to the empty room.  While I was gone, they had dropped off the George
Clooney ER Halloween disguise package of surgical scrubs.
     I soon discovered it was very difficult to put on scrubs by yourself
if you've never done it before.  Requiring double-jointedness and a third
arm for the ties in the back was the least of my problems - I had a time
figuring out how to put the hairnet on and the mask and leave enough room
for my glasses without them slipping off the green cloth over my nose. 
And then once I had reached a cautious victory there, my breath would
steam up my glasses, making me blind and badly dressed.
    Then I had to wait.  And wait.  And wait some more.  I did a casual,
nonchalant stroll out of the room now and again to let me people see me
and know that here was dad, just waiting for the call.  Here I am.  Over
here.  Don't know what good I'll be, but here I am to do it.
    They came for me in what seemed to be a little over twelve hours and
pulled me to surgery, the nurse kindly and roughly adjusting my
mismatched and badly done clothes into some semblance of correct and
functional.  As we entered the room he pulled me back by my mask to fix
it, an awkward motion on all our parts, but I could see again, so all to
the good.  Otherwise there was a chance I would have tried to comfort a
machine instead of my wife.
    They sat me by her, we talked, I resisting making jokes for the most
part.  They operated on her, and after a short time (after all the long
times we had had), Xander was born.
    He didn't cry.  Tracy mentioned that.  "I can't hear him," she said. 
I walked over to where they had placed him.
    They were working on him pretty frantically.  I stood as out of the
way as I could, watched them, went back and told my wife he was fine,
they were getting him ready and testing his breathing, that was why she
couldn't hear him.
    He had swallowed some of the mucus in the birth canal before, and
they had to clear it out of his mouth, which was why he didn't cry.  But
he didn't cry much in the hospital anyway.  At one point they had to slap
his feet over and over to get a reaction, and he balled up his first, and
one of his new nieces asked if he was going to hit the nurse.
    Knowing him as I do now, probably not.  Maybe.
    Because of the C-section and his troubles, we stayed for a few days.
The first room they were going to move Tracy to was a shared one, with a
younger woman who had her first baby and, apparently, a WHOLE LOT of
friends to share the news with.  The nurses had grown to like Tracy and
me, Tracy because she's Tracy and they were impressed with the music CD's
she had mixed, me because I stayed out of the way and did what I was
told.  Husband training came in useful.  They could see Tracy was tired,
and elected to move her to a ward room with only one other woman in there
where she could get more rest.  But because of that, I couldn't stay
overnight with her.  Her mom stayed over, I was allowed in once or twice
to check on her, and I ended up finding a dark spot in the Delivery
Waiting room and catnapping as much as I could, waking up now and again
to go see my son through the window.  He was hooked to a machine to
monitor him and slept a lot.  Unlike today, both machine and slumber.
     The next night we were moved to a private room and Xander got to
spend some time with us.  I had my first experience changing a diaper.
Extra wet wipes, guys.  MANY of them.
     Tracy was exhausted and Xander was unhappy, so I stood up and walked
with him up and down the room, singing to him "Bad Day" by Fuel, over and
over.  "Had a bad day again/She said you would not understand/Slammed the
door and said I'm Sorry, I/Had a bad day again."  Up and down, over and
over.
      It was a busy first week.  Xander wouldn't gain weight, so we were
placed on a two hour feeding schedule.  This is exhausting for everyone.
Start at midnight, feed the child for, say, fifteen minutes.  Calm him
down, calm us down, go to sleep for, say, hour and a half.  Wake up.
Wake the child up.  Calm him down.  Feed him.  What took fifteen is now
forty-five.  Get him back to sleep - one hour.  Try to go back to sleep
ourselves - twenty minutes.  Wake up in forty, lather rinse repeat.  I
don't remember too much those days, except Tracy tells me I talked in my
sleep VERY EMPHATICALLY about Harvey Birdman, and Cartoon Network ran a
surreal cartoon about a crocodile in a hot air balloon who flew to France
really early in the 'why-am-I-still-awake' morning.  "Monsieur Le
Crocodile!" became a shorthand for us.  I was so groggy and
sleep-deprived that when I went out to buy supplies I bought the wrong
size bottle nipples, too big,  Kid took one sip and nearly drowned.  I
don't think he's forgiven me yet.
      Ten years ago.  He has changed, and changed us, in so many ways.
In a few ways, and only in a sorta-kinda way, some things haven't
changed.  We still have to guess at a lot of what he means when he tries
to talk to us.  We still stay up late many nights, waking up every few
hours to check on him.  We still watch cartoons.
      But - just yesterday he woke up in an awful humor.  I'm fighting
yet another bug - just call me Typhoid Brian - and I was trying to sleep
in, but he was so mad he woke me up.  I went back to check on them,
Tracy had checked him for fever, nothing.  He was jumping and yelling and
pretty much in what could be called a bad mood if you like
understatement.  I finally got him to calm down and said, "Look, Buddy,
if you can't tell or show us what's wrong I've gotta assume this is a bad
mood from little sleep and can't help."
     He stopped jumping, took my hand, and pressed it to his head.
Headache.
     Happy birthday to us.   
     
Hashtags
by BrianRobinson
 Kaleidoscopic
Dec 06, 2011 | 1984 views |  0 comments | 23 23 recommendations | email to a friend | print | permalink
  Just a quick note - busy day yesterday, PTO meeting and black belt testing, so I'm still recovering.  While up early (yes, tired, recovering AND still insomniac...wouldn't be me if any other way) I found this article off Facebook.  The article itself nailed some of the best lines.  For the full set, you can go here.  I think every parent of an autistic child will recognize these, and smile, laugh, tear up, or just nod in agreement.

     Will try and get a longer note up later on in the week,  Hope everyone is well.

    
Impressions
by BrianRobinson
 Kaleidoscopic
Nov 29, 2011 | 1970 views |  0 comments | 27 27 recommendations | email to a friend | print | permalink
"Why is this so important to you all of a sudden?" - Hiccup
"Because I want to remember what you say right now." - Astrid, from How To Train Your Dragon

     It would be nice if every time you had a chance for a learning opportunity the signs were as obvious as that.  Problem is, those lines came from a great movie, and life doesn't follow scripts. 

     Parents worthy of the name worry about how their kids will think of them, and what kind of example they will leave.  Many times, this leads to acting or forcing yourself to act in ways and be things you don't really feel.  Smiling at that really rude drive-in person who blew your order and blamed you for it, or cutting out the last few words of comment about that guy who just cut in front of you on the highway, or eating the brussels sprouts.  Object lessons for good impressions.

     But as in movies and schools oftentimes you just can't act your way perfectly all the time and lessons aren't the same once you're out of the classrooms.  That's when you're yourself, not the person you want to be, and with the perfect eye of the eternal critic, your child notices those and remembers them, and those times shape them in ways you can't know or imagine.

     It's hard to always be perfect.  Life sets up behavior grooves and paths that you just fall in no matter how hard you try not to be that person.  It's like a floor in a well-lived in house - no matter how straight and even it started out being, after much living and weight on it, when you drop a marble on it, that marble's gonna roll to where the dents are.  Perfection beaten in to reality.

     As the dad of an autistic son, it can be harder to know when I've made an impression.  Autistic people tend to be deep inside their own selves, and it may not matter whether or not I curse in front of him or throw down my Wii controller when the game beats me.  After all, if he's not going to notice or really understand anyway, why try to be perfect?  Why not just be me, for better and usually worse?

     Here's the thing.  You know the one thing your child's gonna remember, the one thing that will affect him more than anything, the one thing that will make him the person he will be?

     No, you don't.  It may be some huge event that's easy to spot - saving his brother's life, having to tend to a sick dad, watching a friend die.  Or it may be that tiny, forgotten moment you won't remember the instant after it happened, when you were yourself for a critical second.  That's more true for us, since that moment may not be obvious, explainable, or even registered by my son at the time, but have immeasurable effects on his life afterward.  As his moments have done for me.

     Parenthood is an eternal learning moment, a classroom with no teachers, one individual student, and no bell at the end of the day.  So, really, is childhood.  As much as you make an impression on your child, they make impressions on you.  I've said many times I've adjusted to the new normal my life is.  It's not easy at times, not fun at times, stressful and hard.  But I do it without a second thought, because it's what my life has been formed into.

     How?  I don't know.  I've said it before - if you had told me how my life would drastically change with my son's autism, described the things I would have to do and all the extra tasks and guesses and uncertainties - I would not only have doubted I could have done it, I wouldn't have understood it could be done. 

     But little by little, when my son needed me to do something, I did it and the grooves were formed for me to do it again when needed.  These things range from helping him do things to being very pushy for my son and his needs to being a mean dad to him so he'll do something on his own.  And others I don't know but my son has seen and maybe understood, affecting him in ways I can't know.  I don't know what he thinks of me now, and how he'll feel about me later.  I'm sure I'll screw up in some ways that will change him - perhaps because I tend to let him do his own thing, he'll swear inside and unconsciously that when he has kids he'll spend more time with them.  Maybe because I try to be nice to people, he'll be nice to them.  Maybe not - perhaps everything I've done is like water off the back of a duck, sliding off him with no registration.

     I don't think so, though.  Because I know little things he's done have made big changes in my life, and that will keep on happening.  Whether or not my actions make the impression I'd like them to make, they will make one.  Even if these impressions are faint to me, they may be huge to him.

     "We are what we pretend to be, so we must be careful about what we pretend to be." - Kurt Vonnegut, Mother Night.

    

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