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.  
    
    

     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. 
     

     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.