Routine
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.
Mother
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.
Loss
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.
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.
Walk
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.
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