Kaleidoscopic by BrianRobinson
Patterned Chaos, Life - Who Can Tell the Difference?
Jun 24, 2011 | 9907 views |  0 comments | 29 29 recommendations | email to a friend | print | permalink

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Definition
by BrianRobinson
Jan 24, 2012 | 4832 views |  0 comments | 27 27 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
Jan 08, 2012 | 2292 views |  0 comments | 22 22 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
Dec 15, 2011 | 3898 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
Dec 06, 2011 | 1974 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
Nov 29, 2011 | 1964 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.

    

Fear
by BrianRobinson
Nov 16, 2011 | 4489 views |  0 comments | 28 28 recommendations | email to a friend | print | permalink
     I love to read, but this past few weeks I've almost been ready to give up reading the news.

     Several stories of one of a parent's worst fears were in the news - a runaway child.  More particular to us, these kids were autistic.  One broke away from his helpers and bolted away to the woods.  Another run away on his own, from what I remember.  In both these cases, it ended happily - the one in the woods was found safe after a long search, the runaway was found at a bar and returned to his family.  But while they were missing, I could feel the sympathetic fear, pain and loss of those families, imagining Xander lost on his own in a world not made for him.  Even just typing this and thinking of it, I feel a little breathless and dizzy with nerves.

     But that's not all.

     Many stories came out of special education teachers treating their students horribly.  Two attacked a girl for her weight, making fun of her and saying that's why she had no friends.  One man taped messages and posted them online, making fun of his kids while wearing a rubber helmet used in class, making horrible comments about them - I can't believe he was any kind of good teacher to them in class.  (Nor, indeed, a good person outside of class either.)  These not-quite-humans are even worse than the hulking, moronic schoolyard bullies in class, being in a position of authority and over more helpless kids.  No one who bullies any special needs child is a good person - but a teacher who does it forfeits basic humanity and, if I had a say, freedom for a time.

     Then the Penn State scandal hit the news.  While none of the abused kids there were autistic, still, it brings up the specter of sexual abuse and all the terror you can imagine of that happening to your child.  We're not social beasts by any means - book club, tae kwon do, and drive-ins are the extent of our usual social interaction - but all this news makes me want to sell the car, subscribe to a weekly grocery delivery service, and nail shut the doors and windows and lock ourselves in.

     Even money if I'd make Tracy or Xander snap first.

     Sometimes it's hard not to let fear be your main, driving force in making decisions.  It can be fear your child can't handle a situation - lights, noise, strangeness - and how it would affect him.  It can be fear of harm from your child trying something new and having a problem because of his sensory issues - swimming, driving, riding a bike.  It can be fear of your child not being able to communicate his needs and being around people not used to his verbal shorthand.  These are more unique fears to us and many parents of autistic kids.  Then there are the fears all parents share - your child getting hurt, being taken, being abused.

     Another thing we parents of autistic children and parents of "normal" children (why be normal?  Aim higher!) have is the need to swallow these fears as much as reason will allow and try to be brave for your child.  I'm not very good at that - I'm sure his teachers would probably say so, since I tag along for field trips and the like.  It's a compromise for me - he gets to go, I get to be near if something happens.  (Of course, is my being there letting him, perhaps, not deal with things like he should, since he can just to go Daddy and get help?)

     Yes, I could simply stop interacting at all with the outside world and keep Xander in a managed, planned, artificially safe little clockwork of a world.  There are times I really, really want to.  I'm sure my parents felt the same way about me many times - I had a rough school career for a while, almost getting expelled from Catholic school (not, I hasten to add, because of the horrible kind of abuse too much in the news.  Many, MANY things - not that).  But they had to grit their teeth, send me to school to deal with things the best I could, and they would do what they needed to do.  (And they did - we moved to Anniston.)

     Fear can lead to paralysis, and nothing can grow in paralysis.  Sometimes you've got to soldier on through, even with all the bad news out there trying to change your mind, and take some risks that allow your child to grow.

     And your ulcers.

Thank You and Random Stuff
by BrianRobinson
Nov 10, 2011 | 2009 views |  0 comments | 26 26 recommendations | email to a friend | print | permalink
The ARC of Calhoun/Cleburne County has given the Robinson family Family of the Year Award.  I thank them most humbly, and urge everyone reading this blog to go check them out and join up:

http://www.thearcofcalhoun.com/.

These guys are the ones that run the summer camp I talked about in the blog, so you're already familiar with their good work.  Thanks for the honor.

Other random science news stuff:

Autistic people act the same in social situations whether people are watching them or not.

Kids with autism have more prefrontal neurons and larger heads/brains.

Some facial characteristics of autistic children.

A genetic mechanism in autism and pregnancy.

A specific X chromosome region SNP linked to 15% increased chance of autism.

Social skills and language development regions of autistic brains develop slower.

Mixed
by BrianRobinson
Nov 07, 2011 | 1933 views |  0 comments | 25 25 recommendations | email to a friend | print | permalink
     Sorry it's been a while since I got you up to date on what's been happening with us.  It's been a hectic time.  Not hectic like soap-opera style - I wasn't bonked on the noggin by my evil twin, causing amnesia and kleptomania, and while I indulged my yen for illegally obtained Altoids he took over my house and life.  I don't have an evil twin as far as I know, and while I like Altoids I prefer to buy them legally.

     As far as taking over my life, make me an offer and let me think on it.  Maybe.

     The month of bad karma (as I dubbed October) decided it enjoyed its stay and wanted to spend a little more time with us.  Got the car checked at Mike's Tire and Auto (good bunch, by the way) and found it had dry axles.  While that's a wonderful name for a punk band, it isn't so good for a car, so we had to have to fixed.  More money gone.  We got Xan to the dentist, replacing a trip we had to cancel back when I was sick and in no shape to wrestle with him.  The checkup was its usual exhausting self (and major thanks to Doctor Norby and his staff) but it ended well - Xan has no cavities.  Now we just have to figure out why he keeps chewing his shirts to sodden threads.

     Then there was the field trip...

     Xan's class and some other kids went up to Birmingham to see Disney on Ice.  I, being the paranoid parent, also volunteered to go.  His teacher tried to politely dissuade me, mentioning she was going, the aide was going, the two practicum students were going, the bus driver had worked with Xan and was going...and it is a good point.  I know I tend to over protect him, wanting to be there if there's problems.  It's not like I smother him in bubble wrap, but still, he does need a chance to be by himself on a trip and see how he does.  I know this, and one day I'll manage to let him.

     But not this time.  I went.

     The bus trip up was pretty good.  He sat in a seat with a friend and looked at the window, I sat behind him.  I got to talk to the practicum students, to see how Xan did for them - very important, since as I blogged about, he can play people so he doesn't have to work as hard as he would if they knew what he could do.  They also complimented him and said he was very smart, always nice to hear.

     We got to the show just before it was going to start, and then things went awry.  A ticket was...missing?  Lost?  Misplaced?  Whichever word sounds best, one ticket just wasn't there, and it was mine.  I actually wasn't completely upset about this.  I could have walked to the ticket office and bought another one, but I figured by the time I did that, Xander's group and I would be so far apart I would have trouble getting back with them when it was time to leave.  I figured I'd just walk around.  Plus, this would be a good compromise - I'd be there, but Xan would be on his own.

     (As it turned out, this was a DUMB idea.  The group ended up exiting very far away from where I would have been, and they and I would have had a hard time finding each other.  They would have had to search for me for quite a while, or maybe even left me.)

     After about fifteen to twenty minutes, a teacher found me walking around.  She had either found the ticket/bought me one, I still don't know which.  I walked with back to the group, and all the parents and teacher asked the usher if I could sit near them since I was a dad of one of the kids.  The first usher said no, because that section was full and the only seats left were, um, iceside? for lack of a better word.  Xan's group had the last few rows before the railing separating the seats right by the ice.  But another usher came by and said okay, sitting me a little to the right of his group and in the floor level seats.

     The show was going on, and it was loud, as it had to be.  I would look back now and again to see how Xan was doing, and I saw he was being walked around by a practicum student and looked a little upset.  I got up and told the usher I was going to check on him.  He walked me over to the railing where Xan was heading out and got the practicum's attention.  He saw Xan was having some trouble - hands in ears, a little complainly.  He then said, "Here's what we'll do.  Lift him over the railing, and you guys sit here - " floor-level, right in front of his group.  He also brought me some earbuds for Xan, seeing he was having difficulties.  (Xan hates things in or on his ears, so that didn't work, but how nice was that?)  Also, when Xan had to use the bathroom, him and some other staff let us use the one right by our level.

     To all of you, whose names I didn't get but at least I managed to shake your hands - thank you so much.  Your kindness and good deeds were an immense help during a tough time.  I only hope you get paid back tenfold for your niceness, and please know these words are a pale reflection of how much we appreciated it.

     Xan got to enjoy some of the show when he could - he liked the fireworks and when Peter Pan and his crew flew.  Some of the skaters hopped up almost next to us, and I got him to wave now and again to them  So, what he could, he liked.

     The ride back was a little less easy.  We stopped at a McDonald's for lunch, and I managed to set the bag down badly and spilled all my fries and almost all of Xan's.  I gave him what was left, and he immediately dumped them on the floor, completing the set.  After he ate he kept on saying 'car car car car car', meaning he was ready to go.  I guess he thought the car was close by and he wanted off the bus.  So the ride back had a lot of that.  Then we had to drop off the other kids at a school close to our home, and Xan felt we should get off the bus as well.  He was not happy when we didn't.

    It was a mixed day of good stuff and bad stuff, something all parents and especially the parents of autistic kids know all too well.  It's a balancing act, and if the scales happen to tilt more to the rough side, well - tomorrow's another day.  It may change.

    Of course, that's true for when they tilt to the good side too.  But all in all - it was a good day.

Heroism
by BrianRobinson
Oct 19, 2011 | 2424 views |  0 comments | 19 19 recommendations | email to a friend | print | permalink

     I love to read, and pick up a lot of lines or quotes that stick with me.  Some of them fall away as I grow up, some of them stay, and a few of them get more true.

     In The Talisman, by Stephen King and Peter Straub, a boy named Jack has pulled Wolf, a werewolf, from his non-technological home world into our 'real world', and they're hitchhiking cross-country.  Jack is getting sick and needs to rest, and decides to go to a movie theater, where he can sleep and Wolf  can watch the movie.  It...doesn't work very well.

     I read this when was thirteen, and these lines from that scene always affected me, for the pure pain of bravery not noticed or understood: "Jack would never know of Wolf's heroism in the next few minutes.  Wolf did not really know of it himself.  He only knew he had to try to stick this nightmare out for Jack's sake."

     I often think of them, in the back of my mind, when I wonder about Xander and what he goes through. 

    We try to help him when we can, try to minimize or lessen what he has to go through that hurts hiim.  But we can't, nor really should, make his life completely antiseptic and safe.  Life is here, life goes on, and if he doesn't have a chance to get used to things that bother him when he CAN, it will be so much harder for him to do so when he HAS to.  Doesn't mean we're going to throw him into a situation we know will be hard for him just because we could - but there will be times he'll have to suffer through.

     Of course, there's the word 'suffer' there...an exact choice by me.

     In every restaurant we go to, he usually has to cover his ears when he's not eating.  The ebb and flow of conversations and noises around him probably combine into a mad rush of sound to him, disjointed and confusing, like trying to get words from a babbling brook or trying to listen to six different radio stations at once.  He can handle it - but it doesn't look fun to do so.

    I said in another post he has certain parts of songs and TV shows and movies he really likes and would play them over and over, given a chance.  There are a few others we know of that are the complete opposite, where he will have to leave the room for a bit if we don't skip over it and come back when it's done, or he gets upset.

     Those are, if you will, 'normal' things, things you can plan for and get ready for and get around, usually.  When there are new things, they're generally not total surprises, more like 'Oh!  Okay, I see that," moments. 

    But then there's the unexpected times.

    It has not been a fun time for Chez Robinson.  While I was fighting off pneumonia, apparently a late order of bad karma also came in - all at once.  We had a pipe leak outside, flooding the finished basement, making us throw away several bags of ruined stuff and many books too.  Had to get an emergency plumber out, they had to dig up the yard, kick off the water,, pretty much anything and everything you can imagine going wrong all at once.

    While all this was going on, Xander had some problems.  Nothing too huge, but in addition to everything else going on - me being sick, the stress of cleaning up and losing things, the juggling of getting people out to get things fixed, dealing with no water while cleaning up soaked boxes and books - well, at times like those, any smoothness is appreciated.  And for whatever reason, Xander just couldn't - we had some fits.  Could have been the strangers in the house, or the noise of the backhoe tearing up the yard, or getting little radar-pings from Tracy and me while we dealt with the crud.  But it didn't help.  And yet, I don't know how much he did take before it got to be too much for him.  He could have only lasted five minutes, yet in those three hundred seconds displayed more courage and toughness than a legion of superheroes.

     Or when my mom died suddenly.  He did really well, dealing with the immediate aftereffects of us having to help get everything ready for the funereal, even coming with us to the funereal home as we picked stuff out - remember,, babysitting is not something that's an option to us.  The long travel to her final resting place, a strange hotel, dealing with mine and Tracy's grief and his own, which I mishandled badly.  For anyone, this is tough.  For him?  There is no word, probably - and I don't know if I even want to know a word for it.

     Sometimes it's hard to see beyond the frustration of having do things differently, triple-plan everything and be ready for problems.  There are times you complain, whine and moan to yourself that, doggone it, this is kinda tough raising an autistic child.   And it is - PTSD like a soldier's.

    One thing that just as quickly comes to your mind, though, is however tough it is for you, it is infinitely and incomprehensibly harder and worse for your child.  Your stress is not to be minimized, but compared to your child, it is minimal.  Every day, these kids displays a grace and heroism that no one else can understand, but that a parent can sometimes see if not understand.

    When people ask me to list my heroes, I always list my son.


Recalibrating
by BrianRobinson
Oct 11, 2011 | 2135 views |  0 comments | 27 27 recommendations | email to a friend | print | permalink

Those of you who can subtract better than I can - which is a pretty good portion of the world - will note I'm doing this blog pretty doggone early in the morning.  Those of you who have been regular readers of this blog - first, thanks.  Appreciate it.  But you have an immediate and pressing question: "Does this mean Xander's sick and you're trying to make the best of it, not to mention another brilliant, poignant and insightful entry?"

No to the first part.  Yes to the second.

This time, thankfully, Xander isn't sick.  I am.  It's nothing hospital serious, but it's a bit more deep than a cold or cough.  I'm very prone to pneumonia, and my old friend decided it had been too doggone long and it just HAD to drop in and see me again, so it did. 

Luckily, due to his repeated visits, I've learned to recognize the symptoms pretty quickly and hied myself to my doctor.  He, perhaps a little unnerved, called me a wee bit psychic on this matter, which if I had had my choice I would have preferred precognition over something more fun - sports scores, stock prices, heck, even the next outcry at the city council meetings.  But, no.

Since we caught it early, this latest set has been mildly light, to what I call walking pneumonia.  Now, that may not be what it is, I'm not a doctor, but compared to other times, this has been pretty okay to go through.  Other times, like the first couple, I was so miserable even when I wasn't doing anything but lying in bed and trying to sleep.  Now, I can move, but if I move too much, do too much, try and push it, I start coughing up hunks of stuff from my lungs and running a fever that does make me feel bad, and then I have to rest and get my strength back. 

Still and all, even the light version of pneumonia IS pneumonia, with all the yucks and aches and problems.  While life goes on and I still have to do things, I've had to adjust my current life to the target of getting things done but not getting things done to the point I get sick.  Which, by the way, is not easy for me.  I hate just sitting down and doing nothing when forced to, and tend to push it.  This annoying trait has granted me a dry socket after my wisdom teeth were removed; several skips, slides and stumbles when recovering from knee surgery; and a couple a relapses in past pneumonia visitations.

For all that - the aches and pains of being sick, the careful calibration of doing just enough while doing something, the insomnia I get when sick on top of my usual insomnia - even after all that re-targeting of everyday life, one piece - the most important piece, but not that tiny little black dot in the middle of the bulls-eye, one that covers the whole target - is KEEP XANDER WELL.

Having a child will do that to you.  Even through the worst misery, you take the time to pour out a bottle of water so your child won't drink after you, take steps that a germophobe would consider a bit much to ensure you can't contaminate (and that is the word you think of, a harsh, strong, dangerous word) your child, and take care to love your child from a distance.  Because the only thing worse than you getting sick is your child getting sick.

In this, all parents are alike. 

With Xander, I take even more extremes.  He has been told, often, that any attempt to eat or drink after daddy will result in fast, immediate, painful punishment.  Tracy, who managed to get some time off to help out, is to be asked for food and his medicine, not daddy.  I hug him carefully, making sure to not breath or, horror, cough on him.  Yesterday morning (to you, hopefully. to me it's still this morning) we had to go grocery shopping, because the weekend I rested and we and the cats were running low on food.  WE may have been okay, but once the cats run out of food I don't know how long we stay 'co-tenants' to them and become 'protein', so we ran down the street.  At one point I saw Xan had some stuff on his cheek, and for a second I did the mom-clean maneuver - lick finger, prepare to swipe...

...and I jerked away from him like my fingertip had transformed into a blowtorch, lit and spitting.  I was careful not to worry about it anymore after that.

I know it's paranoid, but there is so much worse with Xander getting sick than me.  First off is his possibly suffering with small signs until we notice it.  Coughing like I do would be a giveaway, but how about just getting tired?  He couldn't tell us about it, and given his sporadic and light sleeping it would be perfectly reasonable to think he's just finally worn down.  An easy explanation that ends up being wrong and you end up kicking yourself for later - and that's happened way too many times for me to not be nervous, nor for me to easily forgive myself. 

Then once he gets sick, a trip to the doctor.  This is not easy.  I'm sure on some level he understands what's going on - we explain what will happen and why and how it will help - but he still fights, and who can blame him?  For all I know, the feel of a wooden tongue depressor to him is like chewing on sharp splinters, or that gagging that can happen is worse for him - and it's not exactly fun for us.  A shot?  Name me a child who likes getting a shot in the first place.  Because of all this, and more I don't know about, we have to restrain him, hold him down, help out.  Dr. Caballero is wonderful and helpful, but Xander makes him sweat.

Now, I've had to help out when I've been sick.  I've done it when I had dry sockets from wisdom teeth removal, I've done when I was no longer contagious but still suffering from pneumonia, and I've done it when I had to set my cane down while I was recovering from knee surgery.

Then there's the post-diagnosis.  Perhaps keeping him calm and settled, a task harder than washing a fully-clawed cat.  Giving him medicine which may or may not taste good to him, which takes a few times to figure out how to bribe, cajole, or force it into him and how to reward him later.  Sleeping in shifts, taking his temperature every few hours so we can keep track of his condition - improving?  Staying same?  Getting worse?  Making plans that if something happens - fever above X, vomiting, seizures, what have you - we zip to the hospital right then and there. 

When Xander's sick, there is no usual routine, it's round-the-clock monitoring, a total adjustment to our lives and constant concern and worry.

And it didn't feel odd, or wrong, or even unfair.  Tiring, yes.  But not unusual, or different, or more than we should do.

Because of what Xander goes through, we have to go through more.  Parenting has been changed, recalibrated, adjusted to cover this new, wondrous, amazing and fascinating child. 

Life is never what you plan.  Sometimes you change your aim, something your aim is changed for you, and sometimes the whole target is redone and shifted into something undreamed and unimagined.

For all that recalibration, the target is the same:

A happy child.

 


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