Fear
by BrianRobinson
 Kaleidoscopic
Nov 16, 2011 | 4485 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
 Kaleidoscopic
Nov 10, 2011 | 2007 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
 Kaleidoscopic
Nov 07, 2011 | 1930 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
 Kaleidoscopic
Oct 19, 2011 | 2422 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
 Kaleidoscopic
Oct 11, 2011 | 2131 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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