by BrianRobinson
Oct 30, 2012 | 25565 views |  0 comments | 45 45 recommendations | email to a friend | print | permalink
     Let me state at the start here:  I don't REALLY mean failure in the headline.  Failure has a negative connotation, the bad end of a binary set: succeed v. fail; do v. don't; get a bonus in your allowance v. being grounded; stay another semester in college v. call mom and dad and ask if your room is still available.  I don't mean that.  But it DOES apply to my new way of thinking.  Because while I was dreaming up this article the first thing that came in my head was Mythbuster's slogan: Failure is ALWAYS an option!
     One of my biggest problems as the dad of an autistic, yet brilliant, son is that after several attempts in several areas, I have generally pulled back from social gatherings and outside activities involving my son, choosing instead to live the life of a hermit in many ways.  There are probably neighbors on my street who would be shocked to see Xander, since he doesn't go out too much.  One of my friends who happens to be my tae kwon do instructor - who I've been with for three or four years - once joked he wondered if I actually had a son or wife, since he's never seen them.  People at stores know Xander more than our close friends do, because we HAVE to take him shopping with us - remember, babysitting is not an option, so if we go somewhere he has to go somewhere, and no matter how much weight loss I would enjoy, eating is kinda mandatory.  But other stuff, like parties and gatherings - not so much.
     My unwillingness to try new things with Xan is both due to unselfish and selfish fear.  I don't want to place him in situations where he'll be uncomfortable or bothered by some environmental issue.  I don't want him to feel different from others and have his nose shoved in it.  I don't want him to be in a place where he has to do things 1-2-3 and a-b-c (like a team, say) and when he can't be singled out for it.  I still don't really know if my son knows he's different (or, knowing my child and my attitudes, cares one whit that he is) but should he know and care, I don't want it driven into him when it doesn't have to be.
     But, then again, honesty makes me confess (good Catholic word, huh?) that a LOT of my decisions here come from the memories of what happened during failed excursions and how we had to deal with it.  It can range from us being exhausted at keeping a weather eye on him in outside areas, for fear he may wander or get into something he shouldn't, and his frustration at his being corralled like that, to his actually having a problem that we have to deal with - loud music, not liking the food, being bored and demanding his usual toys that he doesn't have access to, and the all-too-common meltdowns from known and unknown factors that result hours of screaming, late nights in the living room with him decompressing in a long drawn out process on the couch and me trying to catch what sleep I can on the rocking chair, and the lack of sleep that leads to a bad morning and a bad day and quite probably a bad night in a vicious cycle like the pit and the pendulum.  The exhausting aftereffects have been a large part in my pulling away.
     This came to a little head yesterday when my tae kwon do group made plans to have a Halloween party and, of course, invited Xan - perhaps to actually see him and convince themselves I'm not suffering from a complex and ongoing hallucination.  (BUT - a lot of my fellow TKD takers did see my little guy at a separate function we did bring him to!  I'm not crazy - in this area at least!)  The kids were happy and chatty and excited and as sometimes happen, the gulf between Xander and other 'normal' kids was driven into me like a stake in a vampire.  In keeping with the Halloween theme.
    Sometimes I can shrug this off.  This time I couldn't.  It dwelled in me and I came home quite down and depressed.  Tracy, of course, noticed this and got me to talk.  (Therapists must REALLY hate her, since I could keep more than a few of them in yachts and Ferrari's if she wasn't there to listen to me and, as will be seen, make suggestions.)  And then said "Why don't we try more things?  I mean, that big day (which I wrote a whole entry about) was one we rolled the dice on and look how it turned out."
     So we're starting to get ready to try things.  Deal with what bad may happen, see if something good can happen.  And yes, be ready to deal with the bad days and suchlike that will happen - but will hopefully be balanced out by good days and new findings of our mysterious and miraculous child.
     I may have failed him in pulling away from things - but now we're going to try some new things and be willing to deal with failure.   
by BrianRobinson
Oct 16, 2012 | 6269 views |  0 comments | 42 42 recommendations | email to a friend | print | permalink
     One of the more personal and unique issues we have with Xan is discipline.  Perhaps with "normal" kids, it can be an easier call - you can take it on faith that the child understood the instruction they chose not to do, disobey, ignore, whatever because you know they could comprehend what they were told, were able to hear it, were able to put the ideas behind it together and had the ability and chance to follow them.  With many autistic kids, and especially with Xan, it's harder to just know that they made a choice to disobey.
     A couple of weeks ago we tried an experiment.  We're not what you call a first-adapter kind of family, so oftentimes we end up getting some kind of new toy like an Ipod at the end of its life cycle.  We tend to keep these things for a while, so we have a few odds and ends around the house.  So now Tracy and I have our own personal toys and decided to pass the Ipod to Xan.  Took the time to update it, get a new power cord, rearrange the icons and delete stuff he wouldn't be interested in and add more we thought he would be - we're talking a good three days straight work here.
     Gave it to him with strict instructions on when and where he could use it, and the first day went fine - perhaps because we were always watching him.  The next day, I was feeling miserable and went to grab a nap.  Tracy came back after a couple of hours, woke me up, talked to me for a few minutes, went back to the living room.  Total time gone, maybe five minutes.  Xander was no longer where he was supposed to be and the Ipod had vanished.
     Spread your hand out wide, like you're about to try to take the lid off a big tough jar.  The Ipod is narrower than that.  Our living room is nowhere near pristine, with stacks of books and papers and toys and cats and games everywhere.  Finding that Ipod was like finding a piece of hay in a stack of needles. 
     Accidents happen, of course, and that loss wasn't at first a problem.  I mean, if I found everything I had ever lost I'd need a new house.  But Xan wouldn't help us look at all.  Perhaps he didn't understand it, who knows, but after much requests demands and orders to help us (all of which were equally effective, like a stick of butter against a flamethrower) were ignored much of his fun stuff was taken away, like TV shows, CD picks and going to his room - more than this little outlier in a second.  We did this to emphasize that while accidents happen you have a responsibility to help fix the accident, an attitude which he seems to not be in agreement with, and telling him that if we couldn't trust him to help us out we had to make sure he didn't do anything wrong we had to fix.  This lasted for a week,
    So yesterday, both from expiration of punishment time and just a want to start stuff over, I was very nice to him.  Let him have TV, pick his songs, even got some Chick-Fil-A on the way home.  (Which, I have to admit, wasn't entirely altruistic on my part.  That feeling miserable from before never really went away and the doctor said I was trying, once again, to catch pneumonia.  So an easy meal was very welcome.)  We even let him head to his room, which we had forbidden on the general theme of 'we can't trust you here.'  He has a habit of going into our room and flopping on our bed, which isn't a huge deal, but it does pull the mattress off the bed and he never even tries to fix it.  And we had forbidden it several times.
     Well, he wanted to go to his room and I said, very specifically, very clearly, making him repeat it: No going to mommy and daddy's room, no jumping on the bed.  None.  Okay.  He goes, he runs back in, a few times.  No big deal.  I check our room and the bed's messed up - not bad, perhaps just from the cats or a bad making up - maybe.  Still feel bad, don't want to push it, so I tell him again and shut the door so the next time there will be no doubt.
     Yep.  Walk back again, door wide open, and he's jumping on the bed. 
     This was much more depressing than perhaps you can imagine.  I believe I've said it before, but the most frustrating thing with Xan is the near complete lack of communication in a give-and-take sense.  I don't know what he's feeling, why he does some things, why he likes what he does and why he hates what he does.  I have to guess and take stabs in the dark about my son much more than I like.  In many ways, Xan is more mysterious and unknown to me than my cats are.  (Of course, the wants and needs of cats are pretty easy - worship me, feed me, clean my catbox and pet me when I feel like it.)  Even worse, since the areas he is able to communicate tend to be demands for things he wants, very often our verbal relationship is as personal as the one with the last waiter you had at Cracker Barrel.  And I don't get tips of any kind. 
     And with the always present doubts I have about whether or not I'm doing the right thing in almost all parenting decision, the lack of feedback can be a large weight.  Such as this latest act of disobedience - was it?  Was there something I missed that made him unable to understand what I told him?  Or was it the Pandora's Box attraction of it - the ONE THING I say don't do.  I don't know, I won't know and I can't know. 
     Which led me into what if he really didn't understand - will this be the way he is always?  'cause that would be a pretty severe limit in what he could do outside the house.  I know he's a genius, his grades and how well he can function shows me that, but what if this genius of his just doesn't cover instructions?  Or more specifically my instructions?  And what if all the troubles he has isn't resistance but he can't do them?  The old what-if game where every throw is craps, every space is GO TO JAIL, and every ladder goes straight to the bottom.
     (Something tells me if mom was alive or if dad reads this blog they would be quick to mention the countless number of times I did stuff like this as evidence of the free choice option here.  So maybe it's another nice little genetic gift of revenge from my parents, fulfilling the curse 'I hope your kids...' which would be the best news I could get)
     I don't know what's going on here, and I say that a lot.
     As much as I wish I knew if he understood me, I wish so much more I could understand him and bridge some of this chasm we have.    
by BrianRobinson
Sep 24, 2012 | 5902 views |  0 comments | 40 40 recommendations | email to a friend | print | permalink
  AND it's been another month since I touched base here.  This one I blame on my insomnia, which has apparently decided it really wants to be my friend forever and ever and ever and EVER!  It comes in two forms now; one where I can't get to sleep until early in the morning, 2 or 3 AM, and then I get up at 5:15 to start the day and the variant when I fall asleep okay but wake up after a few hours and have trouble going back to sleep and wake up every fifteen or twenty minutes or so.  More than a few days of that and you feel like you're wrapped in thick cotton, stumbling when you walk, and generally not able to write anything more coherent than your name on the bottom of checks.
     A reason I sometimes can't fall asleep is when the rebel brain decides that nice, quiet, dark time when you're comfy in bed is just the best time to throw up all kinds of bad thoughts and worries that hang around worse than a buddy who comes down 'for a few days' and stays until you start to claim him on your taxes.  Worries about the bills, Tracy's job, the cats, the house, the cars, and eternally - Xander.  If he's had a bad day, so much the better for the renegade brain - focus on all the problems we had, look ahead to a time when he's trying to function on his own and has those problems.  That's a recipe that would give a narcoleptic bags under the eyes.  Good day?  No problem!  Imagine him having to deal with other things that's always there, good days or bad.
     Like his sensory issues.
     Autistic people tend to be sensitive in one or more areas of their sensory input.  Vision, hearing, touch, taste, smell, heck let's throw in sixth senses too because it's not TOO tricky right now.  Things that are a nonexistent blip on our sensory radar screen (that hint of oregano, that shadow cast by a strong bulb on a jagged stack of books, that faint holdover smell of last's night spray of air freshener, that dead air hum from the TV, the feel of the spoon's edges we hold to eat) turn into Katrina-style hurricanes to sensitive people with just as destructive, if more isolated, results.  At best, it's probably like having to walk with a stone in your shoe and not being able to remove it, a constant annoyance that affects everything just by being there.  At worst - agony.
     Since I'm also afflicted by migraines, I can sympathize if not completely fathom it.  When I'm in the depths of pain of a bad one, I can hear a cat walking on the carpet in the room.  It's not like anvils dropping down steel staircases, but it's loud enough, and at a time when all I want to do is fall asleep it's just as effective as a brass band in keeping me awake.  So I might have a small understanding, or familiarity. 
     And given my lack of sleep, I see it from another angle, where colors are a little duller and sounds louder (there mainly because I crank up the music to help me stay awake) and generally my whole body feels a step or two out of time, like I feel things a few seconds after I should have, a badly dubbed movie where the lips stop moving before I hear what you're saying.  It's all-too-annoying because it's so usual for me, which may be a small blessing, that Xan is so used to the everyday stuff that it takes more to push him into overload.  Not fun, but at least handleable,
     There is another side.
     Tracy volunteered this weekend to help fix up a house.  (I envy people who can do that, fix cars or houses or build things.  I've tried; it's not in my DNA.  I like to joke I'm under court order not to try and do anything more complex than change a light bulb, but it's only a restraining order, not an actual court finding.)  So I had the boy all day Saturday solo.  It went up and down, with mostly good times mixed in with all out battle of wills.
     A recent focus of problems is the kitchen, in that Xan seems to always be hungry and has developed a bad habit of strolling into the kitchen and getting stuff to eat with permission being seen as a unnecessary time delay.  Whole packages of raisins, set-out food to be made later (cooked but not constructed, as it were), of course any candy within eyeline, and so much more have been devoured in spite of our warnings and threats.  Xan also skillfully skates the line between overt disobedience and possible misunderstanding like a pro.
    This happened more than a few times Saturday:
    Xan calmly, nonchalantly, ambles into the kitchen.
    I see him from the living room and yell at him to get out.
    He exits the kitchen yelling, jumping, whining, and occasionally head-butting the table or a chair.
    Punishment ensues.
    (Need I say this is often AFTER a big lunch, or a snack?  It's not like he's on a diet here!)
    This grew old the first time it happened, and by the fourth or fifth it had lost any magic at all.  And it kept on going until we went to get mommy.
     We decided we all were too tired to cook dinner and stopped at Wake and Bake on the way back, which is where I saw a side of Xan's odd senses I usually forget.
     He was sitting down while we waited for our to-go order, sipping (well, guzzling) a root beer, and every few seconds he would burst out laughing.  No idea why - maybe the bubbles from the root beer in his mouth were especially ticklish, or the windows across the street had lights under ceiling fans that made funny shadows, or some echo from people's conversations were like jokes to him? 
     Whatever it was, he really enjoyed it, whatever it was.  Something he sensed that we couldn't, something that tickled him that wasn't even in our level of comprehension.
     It was an interesting demonstration that sometimes an area that can be so problematic can, sometimes, throw up an unexpected marvel.
     Like the fact this column roughed itself out in my head as, once again, I jumped in and out of sleep like a flying fish.
     Sweet dreams, one and all. 
by BrianRobinson
Aug 30, 2012 | 5185 views |  0 comments | 48 48 recommendations | email to a friend | print | permalink
     It has been a busy time here.  So it's been a while since I caught everyone up.  But I think you'll forgive me when you hear what's been happening. 
     The new kitten I talked about last time has settled in well.  Gizmo is adorable, intermittently a sweetie cuddling and purring one minute and then a mighty fierce huntress (RaWr!) the next.  The other cats have generally accepted her, so that has gone well.  But - we had to rush Shadow to the vet (the same one Xander had such a reaction to at the vet's) for a super high fever and no appetite or energy.  He had to stay overnight and get checked out.  Not five days later, Gizmo got by me, ran in the garage, got under the car and drank something under it.  Of course I was afraid it was antifreeze, and rushed HER to the vet.  The odds were good it wasn't - cats generally don't drink antifreeze, the puddle had the consistency and smell of water, and the car hadn't been run for five hours.  I even panickedly called our auto guy to get HIS opinion on what he thought it might be (hey, we love our cats) and he also politely and nicely explained why he didn't think it was (by the way, we go to Mike's Tire and Auto and highly recommend them) - but there was a twist.  The treatment for antifreeze is to give them a lot of alcohol, and since Gizmo was a small kitten there was a not-small chance she would have bad effects.  So I rolled the dice and didn't have her treated for that.  It turned out well, but it was a nervous night for me.
     I started feeling pain in my jaw over one weekend that went from twinging to noticeable to constant to not being able to sleep.  Turns out I had a large abscess, so big it was pushing the tooth out of its socket.  A root canal followed - in fact I write this just having come back from another session.  That was a bit of a bump in the road.
     But for all that - it was a good time.
     Both emergency cases for the cats turned out well.  The bills were expensive, but we're able to handle it, instead of having to perhaps give up groceries or power or the like.  My tooth is healing.  Xander started school again and but for one bump on the first day has handled it well.  When my jaw was starting to really really hurt, I had to go register Xander and was told while doing so that he had scored very well on his evaluation tests - straight 4's across the board, the best score.  And when I was really hurting, I was lucky enough that Tracy could take time off and help out, and that I had the luxury of being able to rest.
     It's hard to remember sometimes, for everyone but perhaps especially for people like us with an autistic kid, but if you can look at your life and find some good points, even in the midst of chaos and confusion, it really helps.  Those few moments of peace are things to be treasured...they don't make everything better, but they make you appreciate the whole of what's going on, bad and good.
by BrianRobinson
Jul 31, 2012 | 4857 views |  0 comments | 41 41 recommendations | email to a friend | print | permalink
     There's a new addition to our house - we have a kitten.  It's pretty doggone adorable, and if I ever attain some level of ability I'll try and uplood pics for you to awwwwww ever.  It's very friendly too, kneading and purriing and being as sweet as can be.
     As always with us, there is a wrinkle. 
     I wrote earlier about Casper dying.  He died of feline leukemia, and at the time I thought that was very hard to catch, and since Casper had been old and crotchety and not really interacting with the other cats they were pretty safe.  But when I brought in the new cat for her checkup, the vets told me that FLe was actually very easy to catch - almost as easy as we humans (if I may make that assumption) catch a cold.  They can catch it by eating after one another, by sneezing, by grooming. 
     So, not only did I have to worry that our other four cats were sick, we have to keep Gizmo completely apart from the other cats.  We do that anyway with new additions to the house, keeping them locked up in a bathroom to let the smell out but no actual contact for a few days, then letting them out for short excursions or locked in the carrier for safe interactions with the others, etc. etc.  But because of that wrinkle, we haven't been able to let her out at all until all the other cats gets cleared so there's no chance of her getting FLe.  (Even if one of the other cats has it, we'd be able to let her out once her boosters kicked in, about 6-8 weeks, making sure to keep her immunizations up to date thereafter.)
     I'll go ahead and give a spoiler - the two cats I've been able to get to the vet were cleared, and that gives me hope for the other two.  I was figuring it would be all or nothing, given all the cats share food and play and etc.  So I have hope that the other two will  be okay, and as soon as I can get them checked we may be able to let Gizmo out and see her new feline family.
    (Tracy named her Gizmo for her high-pitched little trills when she mews and purrs - it reminded her of the good Mogwai from the Gremlin movies.)
     I had planned to ferry the cats down to the vets in a two-a-day deal, getting the news and cost over with as fast as possible.  But, things didn't work out.
     The first time went well.  I dropped off the first one and came back two hours later to pick him up.  Xander is still out of school and I didn't relish the idea of having to handle him and a cat at the vet's for what could have been a long time.  He's done it before, but if it takes a while he gets either antsy to leave or angry he can't.  So I figured do a dropoff in the morning, come back two hours later, drop another off.  Easy, right?
     Well, the other two carriers I thought I had available turned out to be messed up in one way or another, so I was down to one, which meant a pick-up, a return home, get another cat, another drop off.  Hassle, but not real problem.
     But when we went to drop off the second cat, Shadow, things went wrong.
     Xander got upset.  VERY upset.  One eyelash away from a meltdown upset.  He didn't want to leave, jumping and yelling and crying and not listening and tapping his head against mine in that way that means he was REALLY feeling something.
     Thankfully, the people at Animal Medical Center were very kind and rushed the tests as fast as they could, so I could get Shadow and go home.  Once we got Shadow, Xander was better.  Still upset - I had a few hours of crying and yelling at home as his emotions drained away - but better.
     I have some guesses why this happened. 
     He may have simply been tired of the back and forth and expressed himself there instead of at home.  Maybe.  But usually when that's the case the problem is getting him to STAY somewhere - he demands to go home.  Here he wouldn't leave.  I offered TV and food and he STILL refused to go.
     I think he began to be afraid we were having to put another cat to sleep.  He may have been remembering Casper.  Shadow, the cat at the vet when Xander had his moment, is one of his favorites.  He's a huge cat, nineteen pounds of muscle, sheer sleek black fur and one of the most demonstrative loving cats ever.  He'll hop up and knead you anytime, pushes his nose in your face for a kiss, and purrs all the time.  Xander will come up behind him and try to give him what we call fur blurbles, where he blows on the fur. 
     Maybe he was afraid one of his friends was going to die.
     That's new, showing that kind of connection and empathy.  He's not made of ice, showing his love for mommy and the cats pretty regularly, but that kind of caring, compassion, and fear for a friend's life is kinda a big deal.  I'm sorry it came out the way it did, I really wish he could have told me about it and I may have been able to help more, and I hate the fact he had to be upset about this.
     Needless to say the vet visits have been suspended for a bit.  We still have two to go, and while I'm hopeful for them we're still not letting Gizmo out yet.  We will move her from room to room, giving her more space and things to do, and let her smell out now to get the others used to her.
     It's a bit of hassle and extra trouble, but sometimes that's how new things start.

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