Some autistic people are locked into strict routines.  There could be different reasons for this, from always knowing what comes next and therefore being prepared for it, to needing that locked order to get through the day, to a simple preference of having things nailed down and not loose to minimize any surprises which would be tough.  Going away from those routines can cause anything from slight discomfort to meltdowns.

     We're lucky that Xan can handle changes and differences.  Things do tend to go wrong, accidents happen, and I can't tell you how many times even vague plans of ours (wanna try to grab a bite to eat one day this week, say) have run aground on the rocky shoals of life getting its own way.  I suppose we COULD get into a minute-by-minute plan if we really had to, but I bet something would crop up to destroy it quickly.

     In terms of scheduling, we are free from routines.  But we are not free from routine things.

     Like Xan fighting sleep.  We put him to bed early most nights, reasoning if it takes him four hours to go to sleep. starting at seven equals an eleven o'clock bedtime - getting him up around six means seven hours sleep.  Not too bad.  But if we put him to bed at eleven and he finally wears down at three and then we get him up at six, that's not too good.  At the least he will be cranky as heck and not wanting to do things for himself which will make him mad when we won't help, and he may fall asleep during the day.  Like many kids, one hour of a nap in the afternoon seems to recharge him for the day, which means another late night.

     And there's being around to help Xander do things.  Here we have to be very careful we don't get into habit of doing things for him but make him do as much as the task as he an himself.  But we're usually around to help him if he really needs.  The flip side of this routine is we don't get much time to ourselves, always keeping an eye and ear out to see if he needs help.

     Of course, there's the usual guessing game of what he says.  A lot of times when he IS asking for something using his words, he talks so fast we can only pick out a few words.  And he still has trouble with similar sounds - b,d,p, etc.  'Cheese Toast' in his regular voice and speed sounds a lot like 'Cheetos'.  Did he say 'Party Time' or 'potty time'?  One's a DVD he likes, one is a sign that he's got some problems going on.  So that's pretty regular for us.

     One thing is sure, though - all of his routines make him special.  And some routine things for others are more than special for us.

     We don't take anything for granted, and little steps he makes as he grows take on magical and fantastic colors to us.  He's started being very choosy about what he wears.  I lay out some clothes for him to change into after school, and about twice per week he puts back what I choose and grabs something else.  That's probably pretty common for kids, but for us it was huge.  Independent thought and choice, getting things himself instead of making us do it, picking his particular wants himself...all a special move.

     He's very vocal about what music he wants to listen to.  Lucero's "I Can't Stand To Leave You" is a huge favorite of his, as is Avenged Sevenfold's "Bat Country" - and those are kinda different songs.  It's so great to see him make choices, ask for those choices, and rock back and forth in the car as his music plays.  Every parent has seen this routine...but for us it's never routine.

     Him being able to handle what the world throws at him, for the most part, is also fantastical to us.  There are days when we're happy and proud of him for not doing anything that caused troubles, like when we put Casper to sleep, when the pipe broke, when I had my knee surgery, all of them unscheduled and stressful.  But he handled them all mostly well, which was a huge help for us.  Others may expect that from their kids as a matter of course. 

     And so many more things that others may take for granted.

     Our routine is anything but, and some routine acts of his are miraculous.  

    

    

     Happy Mother's Day.

     Xan is very lucky to have Tracy as a mom.  Even in his most challenging times, by issues or attitude, she loves him unreservedly and completely.  While understanding his problems and struggles, she never lets him settle for less than his best - much as he tries to convince her too.  When exhausted after a long day at work, she always puts him to bed so they can have some time to themselves.  Even when sick - which she is today, continuing our trend of special days equaling problems - she takes care of Xan.  She always sets a great example of parenthood, giving Xan a support system unrivaled and a hard to reach example for me to follow.

     Even with all the extra struggles of Xan's autism and nonverbalness, she manages to be caring and patient.  It's hard to know what he thinks at times, but it's obvious he loves mommy and I think he knows he's lucky to have her.

     If for no other reason than to give him a break from me.

     Happy Mother's Day, Tracy.  You are an inspiration.  Even though Xan doesn't say it, he knows it.

     We had to put one of our cats to sleep Sunday.  He was seventeen years old - been with us for almost all of our married life.  It hurt.  We treat our cats like family, and to lose one is painful.

     Xan was with us at the vet's when it happened, in the room with us.  Babysitting isn't really an option, and I think he wanted to be there to say his goodbyes in his own way.  He gave Casper a little pet, and showing some empathy unusual in autistics, kissed mommy when she cried.  He did the same thing when our first cat died too - he understood she was hurting and wanted to help her.

     Don't think I wasn't crying, either, but as we all know, he prefers mommy and wants to make her happy.

     It's hard to know how autistic people understood death.  They see someone isn't there anymore, but do understand the sadness and the loss?

     If you're more than casually interested in autism, you've probably heard the name Carly Fleischmann.  If not, she's an autistic girl (teenager, I think) who was uncommunicative, but then started to type out thoughts and feelings in a deep and meaningful way.  In addition to the inspiration of her even being able to communicate, her writing is light-years above many adults making a living doing the same.  She is also able to relate how she feels and reacts to things that help other autistics and parents of autistics to perhaps get an idea of what they go through.

     (Perhaps - the saying is, if you've met one autistic person - you've met one autistic person)

     By a sad coincidence, she recently did a post on Facebook detailing how she's dealing with the death of a friend, and she said what we all feel when a loved one dies - she's sad, and it's not fair when some die.  A universal constant.  I've posted before of how Xan reacted at my mom's funeral, where he definitely showed his anguish.  

     Loss is change.  It goes from having someone around to them being gone.  But loss is also part of love - you have to care about someone to hurt when they hurt, or when you have to say goodbye.  And another part of love is strength to lose someone.

     We had to decide that Casper was suffering, and be strong enough to let him go instead of keeping him here so we didn't have to say goodbye.  It isn't fair, but it is.

     But loss doesn't have to be that drastic.  Xander is, little by little, getting more independent.  We still don't know if he could handle being by himself, but he is able to be more trusted to do some things now.  It isn't always easy but we try to make him do more - which always means we're losing him, little by little, with its benefits and sadness.

     It would be easier, sometimes, to just go along.  Do it for him, take the responsibility out of his hands.  Sometimes we do.  But more often than not, we have the strength to make him do something, to make him lose that dependency and get him stronger and pay for that change  in yells, fits. arguments, complaints, stress and troubles.

     Parents are used to this, making their child their own person and able to handle themselves so they can go out in the world and make their own way.  They suffer and have to be strong, all for the ultimate goal of losing their children from their home.  We're no different in that goal, but our particular trials and methods are much different.

     Saying goodbye, in all its forms, takes strength.   It hurts, and a lot of times all you can say, like Ms Carly did, is it isn't fair to have to suffer that way, either from being the target of anger for making someone do something on his own to letting a beloved cat going to its final sleep rest its head on your hand as he slips away.

     Loss is part of love, and the final payment for all those smiles and laughs you get from time spent with a loved one.

     RIP Casper. 

     

     The Oxford walk is over.  It was a bit more hectic than last year, and a couple of things went wrong, but the turnout was good and people seemed to have a good time.  Thanks to everyone who walked, special thanks to everyone who helped, and praise beyond words to my wife for setting this whole thing up and dedicating much of her time and efforts to it.  Now, life can get back to 'normal'.

     Along with the walk, Autism Awareness month is almost done.  Last day is today.  For many of you, this means one more charitable memory jogger is in the past and another to come.  Your life can get back to normal, if indeed it was even affected.

     Our comparative definitions of normal would be radically different.

     Xan woke up laughing like a loon at 4:15 this morning.  I have no idea why.  I've blogged many times of the mystery and frustration of his lack of communication - this is our normal.  But another part of that is his spontaneous joy over something I don't recognize.  There are certain catchphrases that will send him howling in glee - not all of them from kid's stuff.  Mystery Science Theater 3000 (one of our faves) gives him a lot of things to laugh about, things I wouldn't have guessed he would find funny or, really, understand.  (I mean, what ten year old really gets the humor of one character saying "We're all doomed!" and a puppet firing back "Oh, he's a Calvinist!")  Which could just be that what I find funny in something is not what he finds funny - something beyond what I get.

     I don't think in these cases it's something sensory - like, on the flip side, the way echoes will bother him and make him cover his ears.  (I once read that autistic people get signals from their different sides of the brain at different speeds - think about that and then add an echo in there)  I believe in some cases the humor is the same for both of us.  Other times, maybe it's a particular sound or inflection in the line, or maybe something in the background I don't notice but what makes all the difference to him that comes back to him when he hears the words again.  Or, perhaps one of the words reminds him of something else that made him laugh - the code words I've referred to in other posts.  Kinda like how one story, not that funny, can remind you of something else and make you laugh anyway. 

      Xan may have woken up and seen the shadows dancing on the wall, which reminded him of, maybe, Shadow from Bear in the Big Blue House.  Or it could have made him think of chasing daddy's shadow when he was younger.  The way they moved may have triggered happiness for some odd reason - the merging and coming apart, the odd and free formed shapes, the way they would blend into the dark around them and come back again, like water splashing in a constantly rotating waterfall.

      Sometimes it's very, VERY hard to see beyond the things that cause him troubles.  Since we want to fix what hurts him or makes him upset, those things are naturally what takes precedence and moves to the front of the line.  And, since a meltdown commands a lot more attention than laughing, they also stick in the memory longer, sometimes along with bruises.

     That is part of our normal now.

     What is also part of our normal is being amazed at how normal things to Xander can be wondrous, extraordinary, amazing, hilarious, hypnotizing, engrossing and full of more than what I can see or imagine.  His different normality.

     Our normal can be tough, but his normal can be fantastic.

     Saturday, we have the walk!  Oxford Stadium, 8 AM to noon.  Come out and see us and support the Autism Society of Alabama.

     It's a 3K walk...even >I< can handle that.  (I think)  You can still sign up at this site, or when you come to the stadium. 

    We're going to have soft drinks and pizza for lunch, a bounce house for the kids, and other stuff too.  And once this gets done I may have some more time to get back on blogging. 

     Hope to see you there.

     If there is some kind of cosmic balance scale for good and bad days, and some law somewhere says it has to be balanced out, with cruddy stuff for some equaling good stuff for others in a perfect one-to-one ratio...then anyone who had a good day last Monday owes me a large karmiac debt.

     Seriously, anything that could did go wrong.  Woke up just after midnight as my insomnia flared up, so the bad day got a nice early start.

     First, we noticed Xan was getting a rather bad rash.  This started the usual jumping through hoops and second-guessing it always does, as we try to figure out what's going on and how serious it could be, should we try to get him to the doctor and deal with all that.  The rash looked like he had gotten a shotgun shell full of sand, little bumps all over his chest and back.  Didn't seem to be itchy, wasn't leaking anything, wasn't bloody.  Seemed to ebb and flow every time we checked, never giving us solid progress or retreat.  No fever, no loss of appetite, no nothing else, just that rash.  We kept him from school Tuesday and Wednesday to make sure it wasn't contagious, to keep an eye on him and see if one of those other problems flared up, and to be able to apply Cortazine off and on and keep an eye on him to make sure he didn't try to wipe it off or anything.

     While this was starting up, a routine virus scan on our one working computer flashed up a Trojan warning.  This isn't great news any day of the week, but take a wild guess what we had just done...online...the day before?

     Our taxes.  So if anyone had managed to plant something on our computer, they now had the mother load of information, from addresses to social security numbers.  This is the kind of thing that could have made Mother Teresa and Buddha curse and throw stuff wildly. 

     The TV has decided to become a pessimist, making everything it shows darker and darker and darker.  We caught the finale of The Walking Dead, and the last scene...we had NO IDEA what was supposed to be in the background.  All we could see was the moon.  (Not spoiling anything here, but it was a kinda important plot point from the comics.)

     Tracy's Droid phone died.  It had most of the information about the Walk for Autism on April 28th on it.   

     Fridge began leaking.  Car started making odd noises.  I had a recurrent problem start to flare up again and had to go to the doctor.  Had TKD testing that night so I couldn't rest.

     I commented to an online friend "Ever suspect you're the subject in some alien's experiment to see what the magic number of blood pressure is to make your eyeballs actually shoot out from your skull?" 

     We made it through.  But now, I'm calling in the debts.

     If you guys had a good Monday, you owe me.  So here's what I want you to do:

     First of all, try to come to the Walk for Autism on 4/28 at Oxford High Stadium.  As always, e-mail me if you want more info, want to help, anything.  BHRobin@aol.com

     April is Autism Awareness month, so read up on autism, send me questions to answer in a post, and try to do something nice for people who have it.

     We'll be bagging groceries on 4/21 at the Golden Springs Winn-Dixie to raise money for the Autism Society of Alabama - stop by, say hi, tell me you read the blog and donate.

    Above all, appreciate the good time when they're there and be patient with someone else who may be having one of my Mondays on another day of the week.

     And remember, that no matter how bad your day has been, lots of people out there would willingly trade you for it, and throw in their left kidney to boot.  That can be hard to remember, as can the fact that this too shall pass, but it helps you make it through long, hard days.

     I went to a school reorganization meeting this week, and before it started I talked to a few teachers.  One gave me enough encouragement that I am probably going to enter my first 5K, and I'm telling all of you this so as to shame me into going through with it.  I hope my vomiting and cramps make you smile.  But not more than my jokes in these posts.

     The other one was my son's teacher, and what she asked me sent me into a light depression that ended up with me posting a Facebook update that had several friends sending me carefully worded e-mails checking on my mental status. 

      And it wasn't what you're probably thinking.

      She asked me what I saw Xan doing as a job, and I froze.  Locked up.  I had no idea.  My immediate thought was a traffic jam as I tried to think of a job that his nonverbalness wouldn't be a problem for.  And I was stuck.

     The teacher handled it beautifully, taking a beat and telling me that she felt he had a real aptitude for computers and programming.  Which is totally true.  But I didn't think of it and she did.  She also politely reiterated that perhaps I was a little too protective of him and perhaps wasn't helping him.

     With that tied into my not being able to think of a job for him...it was a bad feeling.  I wallowed in it for some time.  Still in it a little.

     I've talked about how I know I can be a little too careful.  I'm scared of him getting hurt, getting lost...too many things.  I told the teacher there was no way I could do what I call 'all-or-nothing' stuff, like dropping him off and not making sure he went in the school.  If he bolted and no one saw him...

     But there is stuff I could do.  She recommended letting him ride the bus, and she said that if I let him do that she really felt he would start talking about his day.

     We haven't had a real conversation with Xan ever, a real give-and-take.  We don't get to hear what he did during the day, he doesn't tell what he really wants, likes or dislikes.  Don't know what he dreamed last night, who his favorite character on TV is.  It's REALLY not good to wonder if I've actually made it less possible for him to talk to us.

     And what if my being careful - to be nice to myself - is holding him back?  Have I traded keeping him safe for keeping him dependent?  Am I the perfect example of the most extreme helicopter parent ever?

     Yeah.  See why I posted that update?  (which, by the way, a quote from one of the best bands ever, the Drive-By Truckers.  Also, try Lucero - the owner of CD Cellar recommended them, and they are great.)  (Hey, this post can't all be down, can it?)

    I have a lot to think about.

    Remember, the Walk for Autism is April 28th.  We have some gift certificates to auction off, from Think Toys and CD Cellar.   You can also sign up online as well now...E-mail me at BHRobin at aol.com for more info.

Took Xan to the park last week, to let him run around and tire himself out some.  For the first time in ... ever ... he didn't want to swing.  At all.  Passed them right by and ran to the tennis courts, where he and I chased each other around the nets.  When we were done with that I figured NOW to the swing-set.  Nope.  Ran to the jungle gym and slides and spent the rest of our time there alternating between climbing up the slides and going back down and grabbing my hands and spinning us around until he jumped up - for a brief second - and fell down in a heap.  I never expected that dissing of the swing.

     Maybe it was a one time thing, maybe not.  We shall see.

     In other ways, he's changing.  I can't kiss him anymore when I drop him off at school in the morning.  Used to be able to give him a little kiss on the top of the head as I walked off, and then last month or so when I tried to do that he did some kinda fish-out-of-water twist that seemed to move his head around in an Exorcism-like maneuver while keeping his hands still protectively clutched on his food.  From that time on, if I attempt to kiss him, he pushes me away in the universal "Jeez, Dad" sentiment.

     THAT, I did expect.  Surprised it didn't come sooner, honestly, given me being me.

     In many other ways, he's still the same.  Still likes certain songs, more of my aural bent than Tracy's.  Still wont to stay up REALLY late and be a bit cranky when I wake him up in the morning.  Still kinda behind on a lot of things, still a genius, still very nonverbal, still loves twirling.

     But he's growing up and changing.

     Maybe for parents of autistic kids, especially ones who are more obviously autistic than others, growing up can mean different things.  With luck, patience and a lot of support, it can mean actual growth and accomplishments - getting them to do more things, better things, independent things.  It can mean watching them change physically, getting bigger and stronger and faster, and while taking pride in it (did I subtly mention Xan's already up to my chest, and he's only 10?) also thinking in the back of your mind, that part that catalogs things in a more harsh light, that IF he gets a lot taller and stronger trips to the dentist and doctor may start involving a tranquilizer.  And that you really don't want to be caught in his head butts anymore - that small bruise could inflate into a concussion.  Many other things, some common across all our differences, many unique to each family and even each child in that family.

     Everything changes, nothing stays the same...except for that always-there worry.

     DON'T FORGET: Walk for Autism is April 28th at Oxford High Stadium.  You can now go walkforautismal.com to register up yourself or a group, and as always, you can e-mail me at BHRobin at aol.com for more information.

     Sorry it's been a while.  Nothing really bad has happened, just, you know, life.  Had a birthday last month - for those of you wanting the exact age, I feel much older than I am.  Getting the walk up and running (remember, April 28th at Oxford High stadium, and if anyone wants to help in any way contact me @ BHRobin at aol.com).  Having another wait-and-see bout with pneumonia, as my body and the bugs get together and decide which way it's finally going to fall.  Volunteering up at Xan's school.  Dealing with a computer that can't decide if it wants to be a actual computer or a thinnish paperweight.  House issues.  Surprises.  Xan.  Family.

     You know, life.

     In some ways, in obvious ways, I may be more busy than many parents.  Having an autistic child means you get breaks that last, maybe, eight hours or so, when they're sleeping.  Maybe.  Even in the middle of all the things I listed above, I still have to keep an ear and eye out for Xander, for our protection and his.

     For example - one night last month the toilet overflowed when he was using it.  I happened to notice several flushes in a row, we raced in, and found the bathroom floor was doing double duty as a puddle.  We were able to clean that up with a minimum of damage, but how did it happen?  Dunno.  Perhaps it was just one of those things.  Maybe Xan jammed it up with too many tissues.  We don't know.  We could assume one or the other, natural or accidental or intentional, and act accordingly: no punishment for naturally one of those things, a discussion about what to do if something happens for accidental, or punishment if he did it intentionally.  We settled for keeping a closer eye on him to make sure he didn't do it again (if he indeed did it at all) and explaining he should have come and gotten us.  This is probably the worst of all possible worlds - if he DIDN'T have anything to do with it, we're overbearing and annoying the heck out of him.  If he DID have something to do with it, it's a much lighter punishment than flooding a bathroom should earn.

     But that's life - acting as best you can with incomplete information.

     The bug I'm suffering through, as it decides whether or not to go all-out or simmer at a light misery, makes me tired.  So it's harder to bound about checking on Xan, or helping Tracy with the walk, or even doing everyday things.  But life doesn't accept excuses, so I still have to do the best I can with what I've got to do it with.  Even if it seems I'm draqging forty extra pounds or so around.

     Yet, life goes on and hitting the pause button isn't an option.  And I do have it easier than many - if Xan's in school I can rest up, catch my breath and build up some energy to make it through.  Several people don't have that option.  So I am appreciative of the advantages I do have.

     And the advantages Xan has.  Even though working with him can be a challenge for everyone's temper, he's already passed his 4th grade stuff and working on fifth.  He's very good at not getting into dangerous things, so usually the worst things we have to worry about are messes and damages, not poisoning or ER visits.  And as I written before, there are times when he does seem to get that daddy doesn't feel good, so he should back off his demands for food or TV or whatever.  It's amazing how a little peace in the middle of tough times can be more fulfilling than a long stretch of peace over many days of ease.

    I assume, anyway, since long stretches of peace here probably don't meet many people's definition.

    So life goes on.  And we keep on trying to live it, one day at a time. 

   

     Walk for Autism is April 28th, at Oxford High.  If you want to help in any way, send me an e-mail at BHRobin at aol.com.

     Had a quick conference with Xan's teacher, and got told he's doing very well.  Which isn't a surprise, but it's nice to get confirmation.  He's progressing nicely on his standards and will probably start working on higher ones soon.  He's been going back to some places that had been a problem for him and has been making progress in speech and OT. 

     Still a ways to go but at least he's making a good start.

     Those are moderately easy grades to make - can he add, does he write, can he read and answer questions?  At the least it's simple to tell pass/fail - a binary yes he can/no he can't division.  Maybe telling how well he can do those tasks is a bit more of a challenge, but at least you can start from a good base of certainty.

     Other areas are harder to judge.  I still help him in the mornings to get ready, helping him shower and get dressed and all that.  COULD he do it himself...maybe.  A few times on weekends I've said you have to do everything by yourself, and just stood there and told him what to do.  It took a while - a long while in some cases - but he did.  But unless I want to wake up practically before I go to bed and get him up soon after that, we can't do that on days we have to be somewhere.  And some of that may not truly be the fault of him not being able to or not wanting to - he covers his ears in the shower, and I suspect that the falling water noise in that enclosed space may have a bad sound for him.  (For those of you wondering why we don't do baths instead, he's decided he doesn't like to sit down in those for some reason, which makes cleaning a bit difficult and splashy.)  It's hard to tell exactly where the line here is between he can and he can't.

     When we go shopping, I've been letting him buy things he wants - Milo's tea, or a Sprite - and giving him money to pay for it; making him carry it to the register; put it on the belt, pay for it; get the change.  The cashiers where I shop know Xan and that he's autistic, so they're very patient and work with him.  He still needs some guidance about taking the change, because generally he feels the quicker he can grab that tea or Sprite the better.  But he's getting the hang of it, or at least the hang of the motions of it.  I'll have to see whether or not he gets the whole idea little by little, so I can't really give him a grade there.

     Those things I can handle, or at least accept.  Some parts of life can't be pegged as pass/fail.  But what about what I do - do I make him do too much, or too little?

     I've been told - rather sharply and completely justifiably - to stop helping Xan at breakfast at his school.  I would always start to open his drink carton for him and let him finish it, but finally his teacher pointed out he did that himself every lunch, so why didn't I just go ahead and let him do it at breakfast?  A fair point.

     The household stuff I help him with - I'm always stuck between making him do it on his own, or helping it/doing it for him.  It's the balance of getting him independent vs. being able to get where we need to go when we need to be there.  I'm not sure where I fall on that, or if I pass or fail.

     He's made progress, but I have to look at getting him ready to act on his own more and more.  This isn't easy, with all kinds of mixed feelings there - 'can he do it?'; 'can he do it right?'; 'can he do it safely?'; 'can he do it today?', on and on.  Pushing him too little leads to dependency, too much leads to frustration, fits, and a refusal to do anymore.

     It's a tough balancing act, and right now, I'm not sure what grade I would earn.

     Don't forget - autism walk April 28th, at Oxford High stadium.  We're starting to get in gear and get more stuff set up and going.  If you want to help, e-mail me at BHRobin@aol.com.  Hope to see you there.