Having more than a vested interest, I tend to keep track of autism news. Two recent articles - here and here - have shown a genetic link to autism-like symptoms. There's still some controversy over what 'causes' autism but more and more evidence shows a common factor is in the genes.
Which, for better and for worse, means autism is part and parcel of our son. It is in him, a inseparable and fundamental fact.
That doesn't have to be a reason for mourning, and it certainly isn't a reason to celebrate. It just is - part of him from the ground up, so to speak.
And while it has to define who he is in many ways, I want his main identification to be whatever he wants it to be - reader, dancer, flirter (oh yes. He can work a room in a way that Valentino would envy and take notes on) or his apparent current one of 'raiser of daddy's blood pressure'. He is a fill in the blank who happens to be autistic, not an autistic person who happens to be fill in the blank.
I've said it a lot, and I will continue to say it: My son is very, very smart and very, very cunning.
Now, cunning may have a negative connotation to it - someone who sneaks, who cheats, who cuts corners and does barely-legal or just-barely-illegal things to get an advantage. And, don't get me wrong, there may be some of that in what he does.
Take school. Just yesterday, one of his teachers was telling him how much better he was doing in her class, even talking a bit to her. I went and got him and we were walking down the hall and he was sort-of chatting to as he does. He has a thing, where he will answer some kinds of questions if you cue him with the sound of the correct answer. This may, sort of kind of, be a bit of a cheat for him, but he usually answers the question with the correct answer out of a bunch of possibilities with the same start so I'm really not sure.
He was doing that with me on some stuff and that teacher heard him, and said, "Xander! You've been holding out on me! I'm gonna make you talk more to me!"
This may or may not be to his liking. There is a possibility he had been underdoing what he could do, so he wouldn't have to do more. I'm not ruling it out.
BUT - it may also simply be a survival mechanism.
Autistic people have a huge problem with sensory issues - I used this example to a friend a few nights ago. We were out in a parking lot after tae kwon do, and I was talking/bragging about my son and how well he did things with all the assaults on his senses. I pointed to the parking lot lights and the florescent lights back in the classroom, and said "You know we see these lights as solid, but they're really flickering super fast, too fast for us to see. But some autistics can tell that. It would be like almost continually living in a strobe light, every second." Add to that the flickering on a computer screen - which is why when you see a computer screen on a TV during a news broadcast interview you'll see diagonal lines skittering down the screen over and over.
Imagine trying to work on something like that. Or be in a place with continual strobe lighting. The agonizing headache, the eyestrain, the jitteriness.
Now I don't think Xander has that issue, or if he does it's to a much lesser extent. But I think he does have pressure sensitivity, where holding things that dig in - like the ridges on a pencil, or the edges of a zipper or a button - dig in more and hurt, because the times he's tried to hold those things, he's jerked his head away like you or I would if we grabbed a hot pan off the stove. Or with talking - perhaps the teacher's voice, as pleasant as it is to you and me, may have some frequency that hits him hard and odd. Or the room full of chairs and tables make the sound bounce around, so one ear hears the words a beat after or before the other, like a CD playing the same track at different speeds through different speakers. (I seem to recall a recent report that showed nerves impulses did travel oddly in autistic people's brains, but can't recall it for sure.)
If that's the case, why not fake being unable to do something that hurts to do?
Now of course, sadly, I can't know. He can't tell me. And many things that may be troubling him is simply things he has to learn how to do, if for no other reason than to find OTHER ways to accomplish that things. Say, pens instead of pencils.
What I call cunning may be survival, or even intelligence, a necessity to getting through a day. The challenge is figuring out which box he's in - won't because he can't; won't because it hurts; won't because he doesn't want to. Given he has already showed some flashes of cunning - taking out papers he thought would get him in trouble, like I talked about earlier - it's even more difficult, since I know he's smart enough, but is he capable enough, to do certain things?
Smart AND cunning. (Like he needed any more advantages!)
One of the books I've read recently had a line in it that stuck with me. It was about getting into running, and that inevitable time when you go out and do something you've done so much before - but this time it hurts bad, and it's a struggle to finish something you've gotten through with no trouble before. It said, "Sometimes the hard is easy, and sometimes the easy is hard."
That really struck a chord with me. I think, with a little modification, that may be the perfect description of handling an autistic child.
Of course, for parents of autistic children, our easy doesn't equal most other people's easy. Since Xander's nonverbal, an easy time might be, say, if he runs out of his room screaming "ARE YOU OKAY ARE YOU OKAY?" and rubbing his back. Means he was probably bouncing on a ball in his room- see the blog entry Weightless, on the first page - and managed to scrape his back on the dresser, or the bed. A fast mystery, easily solved.
There have been other times when he's come out from his room in that upset mode we've come to recognize as "I did something wrong and know I'm going to be in trouble." A search then ensues, with the fever and zeal of DeLeon's search for the Fountain of Youth, and more often than not the same success as well. Times like those, we can only be thankful it wasn't something as obvious as a broken ceiling fan or scribbles on the wall (check and check) and wait and see wait we find later. (Of course, then I have to wonder if when I punish him for a past action he really understands that or he feels I'm just mean...)
Other moderately easy times - once again, Xan banged his head at school this week. But this time it appeared to be a flat-out 'I don't want to do what you say' moment, since when it happened his teacher said "I'm telling Daddy" and he immediately said "Gonna calm down gonna calm down." (And then, in an example of the cunning I often write about, when I picked him up he went to his lunch box, opened it up, and got out some papers that had been stuck in there and put them aside, thinking one of them was a note to me about this) Didn't work, but I gave him points for slickness.
This week I was unfortunate enough to have a migraine. For those of you who never suffered from these agonies (and there's a precise reason people 'have' headaches but there are migraine 'sufferers'), a woman I knew in my teenage years who also suffered from them told me it was the closest pain a man could get to natural childbirth. Yeah. Roll that around in your mind for a minute.
Anyway, I got nailed by one and was fortunate enough Tracy was able to come home after I got Xander so I could go to our room, crank all the fans on high, and huddle in bed while waiting for the pain to pass. There have been times I've had to handle Xander while suffering from a migraine, and while many of those times have been easy and he's been awesome, there's been the flip side as well.
Times like that make it hard to do anything, much less decipher a cryptic clue. Much as I hate to admit it, there's often been times when I've forced to just tell him to wait until Mommy gets home and see if she could figure it out. We've been lucky these times were either not too important, since he didn't repeat it for Mommy, or he worked it out for himself.
These things, and a lot more, tend to make having an autistic kid like always having to parent while having a low-grade headache and on occasion a full-blown migraine - those times when you have no idea what's going on and feel helpless you can't help and sick your child has to suffer because you can't understand him. The easy isn't always easy, and the hard can be unbearable.
Then again, these hard times do make me cherish every step he does make towards being his own person. It makes every accomplishment wonderful and something to be proud of, and respect it so much more because I know it's harder for him to do that.
That's some silver linings you won't ever get in a migraine.
Is head-banging pretty common in autistic kids? I think so, based on all my personal experience, reading and researching, volunteering with autistic kids and talking to people. It may not be a 100% correlation - autistic = head banging - but based on all I know it seems to be a usual thing.
I wonder why? I understand Xander getting frustrated for many reasons and not being able to express it, or not understanding why something only bothers him (imagine being in public and only you being able to see or hear something that drives you crazy), or just getting fed up with something that would bother anyone and having to express himself, but I wonder why it takes that form, slamming the head down.
There is one benefit - as anyone who has witnessed this will say, it's very effective at getting attention. Perhaps you imagine head-banging as some old 80's-punk-rock/heavy metal thing, where kids would bang their heads up and down near - note that word - the stage. Yeah. From what I've seen, there's rarely contact, and when there is the banger usually takes pains to not have it happen again.
Not the way Xander can do it. It be can "gentle". I've had some times when something's happened to him and he's just overwhelmed by pain, or anger, or frustration, and he'll pull me down to him and tap his head to mine. One time he had his hand slammed in a door, another time he was really sick, things like that. He takes care to be gentle, for a head butt, and it's usually not too bad. It hurts a touch, and the more he does it the more likely I'll get a bruise, but he can control himself and I can live through it with usually nothing more then a dull throb while he calms himself down.
But there are times...I wrote he banged his head on concrete getting out of the pool. Hard, no pulling back at all. All the adults around him were shocked and scared, half expecting blood to shoot out of his skull like a hose. That time at Barnes and Noble in another post, you could hear the thunk of the skull on the floor, like a soft watermelon being thumped and I felt vibrations through the floor. I saw a young child slam his head into a long table so hard everything on it jumped, from one end to the next.
It gets its message across.
People who aren't used to this can be shocked and may panic when it happens, which if you only see it now and again makes sense. It's already happened a few times at school this year - once in computer lab and once in his therapy. Both times the teachers let him stop work.
Which, I'm fairly sure, was his main goal. And hey, if it works...
(I did something like this once, doing a fairly harmless yet effective faint. I had just been diagnosed with hypoglycemia, low blood sugar. It was found that a sudden large influx of sugar combined with a equally sudden action would make me faint. In middle school, a place I hadn't exactly set afire with my intellectual prowess, I had forgot about a history test. Failing it would have dragged my grade down to single digits. LOW single digits. So at lunch, I chowed down a whole bag of Red Hot candies, and when the test was handed out stood up to ask a question. For a second, anyway.
Got me out of the test.)
Xander is both smart and cunning, a dangerous combination. He knows that freaking some particular teachers out will equal stopping some assignment he doesn't want to do. I was told about it, and checked out the rooms it happened in to see if I could see anything that might have caused him problems with his sensory issues. I didn't. Doesn't mean there's nothing there but...
This tactic loses its impact with most parents, some sooner, some later. I don't remember the exact date this happened with me, but I remember it had been a long, hard day and he was banging his head on the couch arm. I sighed and told him, "If you're going to do that, go ahead and knock yourself out, 'cause I'm tired of it all and could use a break." Now I only notice it for punishment purposes, as in if I see you bang your head and I can tell it's because you're mad, now you can be mad and in trouble as well. He's mostly stopped - it still happens and he still gets in trouble for it, but it's almost always a sign of anger or frustration. Naturally, if it happens for pain reasons, we don't punich - but we also don't freak out, just checking it out and seeing why it happened instead of being shocked or scared.
The impacts have lessened.
But there are other, less obvious ones we still have to lessen.
If we hear about a head butting incident, we tend to investigate and see if there was some cause besides stubborness or not wanting to do something. Since we can't see or feel what Xander feels, we're pretty wide open in our guessing. We've been pretty lenient too, giving him the benefit of the doubt every time we could - the 'kicking the puppy' feeling being avoided. The problem with that is he may get away with stuff a lot.
So now he's been warned we're going the opposite way, only giving him credit if it's an obvious problem. We're doing this for several reasons, not only to get him to understand the get-out-of-jail (by headbutting through a wall) card won't work anymore, but more importantly, we're trying to get him to explain what's happening. Instead of using the head butt as a catch-all reason and leave it to us to understand, we're trying to get him to make us understand by telling us what's going on.
This will lead to misunderstandings, guilt, and more than likely some trouble sleeping for me, because I know I'm going to get some things wrong. But I'm doing it anyway, trying to get him to do more, to grow some, to get a glimpse into him and give him a chance to help himself AND us by telling us his problems. We hope the impact from his head butts will be replaced by the impact from his words.
However, I fully expect some more bruises on my forehead - this time from self-impacts.
Having a nonverbal autistic child - which, really, Xander isn't, since he CAN talk, but he isn't as adept as he should be for good, or even nominal, communication - is a challenge for many reasons I've posted about before. It's kind of comparable to having a baby who isn't old enough to talk - but in some ways, much harder and worse. You don't expect or need a baby to have a give-and-take conversation with you, but with a older child you do and need to.
The hardest thing I've had to adjust to with Xander is the hurting knowledge that much of his inner life will be a mystery to me, and that ranges from the superficial to the deep.
His birthday and Christmases are not fun times for me. To be honest, I've never been a Christmas spirit man. If I'd have been a Who, I would have taken vacation every December or gone crazy from all the cheer. That precedes my little guy. But with his autism, it's gone deeper.
You want to get your child things he likes. (And of course some socks and underwear style gifts, just to be a parent.) Other parents gets hints, clues, or outright demands for what their kid wants. With Xan, it's not so easy. Probably over half of the gifts I've tried to get him are metaphorically shrugged at, maybe politely tried for a minute, and then forgotten or ignored. Unless it's obvious, I'm probably going to be wrong.
Some things can be guessed at. He liked the first Tickle-Me-Elmo, so when the next version came out I got it. But the voice was just slightly different, a bit higher, a bit more obviously electronic. If I could tell that, to Xander it was probably like the difference between a cat's meow and a snake's hiss, and it just didn't fit. I was wrong, but at least I knew why. We thought he'd enjoy riding a horse at one summer camp, but a helmet was required and anything on his head bothers him immensely.
But other things I could have sworn he would like, he doesn't, and I have no idea. Same character or same kind of game or same kind of activity or whatever.
Because he can't tell me, all I have to go on is his reaction after the fact, and a guesswork game of why. Too loud? Too hard? Colors too bright? Figure not exactly like the character on television?
But even that, as annoying, painful and frustrating as it is, is nothing compared to the fact that I don't know my son like I want to.
Does he like football? He'll watch it with me, but wil leave a lot. Baseball? Soccer? Does he want to PLAY football, or baseball, or soccer?
I know he likes How To Train Your Dragon - who's his favorite character? Toothless, Hiccup, Astrid, Gobber? Why? I don't expect deep psychological bonding or identification, but I can't even get 'I like the color black' or 'He talks funny'.
Other parents can build a mental image of their child from their likes, their dislikes, what they want to do or be and what they don't want to do or be. They can use this for the most basic things, like ruling out gifts because of a wrong color or character. Or it can be used to shape their child - since he likes to read, let's discuss his favorite book; or since he enjoys this martial arts movie let's try them out on Tae-Kwon-Do. Or it can be used to know their child - he's going to be a athlete, a scholar, good with girls.
It's harder for us to get any information like that for the easy things, and often the things we do get to know aren't the fun kind.
Most of all, I miss the chances to have a give-and-take conversation with my son, where I can learn about him and know about him more and can explain what I know and feel. To have a chance to dig deeper and get something straight from him, instead of guessing at things. To be able to get the things I can use to help him, from getting the right gift to doing things he likes to perhaps getting him into things he'll resist but love later. And having him get me more too, of course - but I really want to get to know him.
He's my son, and I love him totally. But he is very much unknown to me.
It's been one of those weekends that seem to last weeks. Xander got up Saturday and ran to see Mommy, who immediately noticed he felt quite warm. He was - 101.5. Much dosing commenced. We ended up rotating ibuprofen and acetaminophen on 3 hour timetables to bring the fever down, 'cause it would just level out on one dose, not drop. For those of you like me in math, there are 8 blocks of 3 hour spaces during a normal day. Some of these blocks, no matter how much you don't want them to, happen at the 'jeez-I-should-be-sleeping' block of time from midnight to four a.m.
Since there appears to be a cosmic law that nothing is simple for us, during the times he had a high fever, he didn't act sick at all, barring one huddling session that lasted two hours. He would run around to where I had to use the dad voice to get him to sit down, he would ask for all kinds of food and eat what was given to him and then ask for some more, he would laugh and play around and talk and yell and do everything he normally does. Had he not felt warm to the touch, we never would have known he was sick at all.
This is one of the more obvious mysteries we get to deal with. After a few days of this, he's back to his usual 98.6 degree self and back to school. Don't know what was wrong, got no idea if he was hurting, and couldn't guess when it started beyond sometime Friday night, probably. But it got better, so all's well that ends well. Unless it hasn't ended yet.
For parents that have autistic kids who also happen to be nonverbal, you get used to navigating parenthood with a blank map. Having less information than that contained in a Reader's Digest Twitter blurb seems to be an overwhelming amount to deal with. Displaying almost psychic abilities at the most minimal signs of trouble is not just normal, it's necessary. And sometimes just taking a wait-and-see, or even a let-them-scream-it-out, attitude is not the best or worst option - it's the only option.
On the one hand, it's quite bonding. It's a shorthand code only you and your child know, a personal ENIGMA connection that others can only marvel at. Many parents may say, "Only I get my child." For us, that's not exaggeration or a hope, that's as close to a law as you can get.
Of course, that limits things as well. As I've said, we don't - can't - use babysitters. Xander's been left with someone else twice, and one of those times the babysitter watched him in our new home as we moved into it, always nearby. The other time was for two hours. It would take reams of paper to explain some of the things we know instinctively now and leaps of logic and fancy to explain it.
And beyond that, there's even more mystery.
For a while, when he was younger, he'd watch the usual PBS stuff: Sesame Street, Arthur, Clifford the Big Red Dog. Now, at one point - I want to say when he was three to four or so, quite young - PBS would run a bumper ad from Chick-Fil-A of a child dressed in a cow suit trying to moo.
For some reason, and your guess is as good or better as mine, that just upset Xander no end. Pealing sobs, hysterical cries. We got very good at recognizing the first few musical beats of that particular ad and switching the channel as fast as we could. On the other hand and mood, a current favorite of Xander's is the Kermit the Frrrrooooooggggg T-shirt bit. Lots of laughter and us trading lines. You haven't smiled wide until you've heard him go "I am NOT emotional!" in his own way with perfect timing and stress.
How about music? He's been tending more towards my tastes, a bit louder than Tracy's. But even as a baby, one of his favorites was the Red Hot Chili Peppers, or at least certain songs of theirs. Tracy and I weren't into them at all, so that's all him. Why? Who knows? Why does he like certain parts of songs more than others?
All of this is pretty minor. What about when he comes home from school upset and the teacher doesn't know? Or, as I started this missive, when he's sick? We have to be really careful and almost paranoid when he starts acting like he feels bad, checking his temperature, his mouth (he's prone to bad ulcers), seeing if he's sneezing or coughing, checking to see if he's asking for food or eating what we give him, all kinds of vigilance.
It's tough and has to be frustrating for him. He knows something's wrong but has trouble telling us. Back when Tracy and I were in college, we got to go to Austria. Our first week there, Tracy got horrible stomach pains, to the point I was afraid she may have appendicitis. We actually tried to figure out a way to tell a doctor what was going on if they didn't speak English. Xander probably has to go through something like that whenever he feels sick if we don't notice or can't figure it out.
It has to be maddening, and not just for him. Because he's intelligent enough to TRY to tell us, and just can't get the message across. He probably has as despairing an opinion about my parenting skills as I sometimes do.
Thankfully, Tracy has a vibe with him and that goes a long way to helping. But everyday, we go through mysteries that would boggle Sherlock Holmes himself.
Whose BBC series, by the way, Xander really likes. Don't ask me why.
My wife had a birthday this week. We also celebrated our 17th wedding anniversary this year. At one point, I sat down and figured out that she and I have spent more than half our lives together - we now have more time that we've been together than we have apart.
I would think most people who know both she and I would call us both well matched and completely opposite, which is true up to a point. It's a classic yin-yang marriage. True story, which I've told a lot - if anyone gets to know me before they meet Tracy, quite often the first question they ask her when I introduce her as my wife is, "How do you put up with him?"
Fair question. Thankfully, she always has an answer.
She has her strengths, I have mine. She has her weaknesses and everybody KNOWS I've got mine. We balance each other out well with mutual support.
You may have heard the stats on marriages with autistic kids. At one point, reports of divorces were as high as over 50% and climbing, making it seem like autism was, in addition to all its other facets, a high indicator of divorce in the family. If I remember correctly, those stats have been revisited and have dropped down some, making a lasting marriage with an autistic kid better odds than a random coin flick in the air.
It can be tough. There is no doubt. We have an high-functioning autistic child, which means he can do many things 'normal' kids can do and isn't as obviously afflicted as some children are. I've posted that sometimes I don't know whether or not to explain he's autistic - we have that option. If there was some kind of odd, disturbing scale of preferred autism to have, Xander's kind would be high up there.
Still, there have been several sleepless nights, countless times of not knowing what to do and taking a blind guess, doctor visits with no better symptoms than 'something's not right', constant vigilance on top of everyday, normal lives and the psychic bumps and bruises that happen at the best of times, constant vigilance at the worst of times, 'sudden' sicknesses or problems that, once in the open, were retroactively obvious. I've been kicked in the ribs so hard I thought a rib was broken when I was holding him down for a dentist visit. We've had meltdowns happen that we were helpless to avoid, powerless to stop, and exhausted to watch. We've had to redo our entire lives, accepting that as of now, vacations won't happen unless we stay at home; that we and we alone will have to watch Xander and be ready to help; that I will stay at home and be ready to assist him in anything needed or take care of home as he stays home from school on a vague guess he could be sick that could be a complete error or a sudden emergency, and preparing for a future that could have independence or not. Remember, we have a relatively - and I mean that in the most appropriate way- light cause of autism in the family. And we still go through all of this and more things that I don't even see as strange or different anymore.
You can see why autism can be hard on marriages. There's a reason psychologists have said moms with autistic kids display the same type, amount and intensity of symptoms as soldiers who suffer from PTSD. They never say dads but I figure we're on the list somewhere. If there are any kinds of problems, having an autistic child makes it very, very hard to work on them in terms of energy and time. It's not impossible, surely several thousands to millions of families have done so, and we know many - but it sure isn't easy and can be even harder without the support and love and supernatural ability of your spouse.
Tracy and I mesh well, in all areas. We can rely on each other for help, support and opinions. I've called her countless times for her guess on what could be up with Xander when he's being especially Sphinx-like. We also balance each other on how we treat and see Xander. Tracy tends to be gentler and sweeter in getting him to work, the carrot if you will. He will respond to that - MOST of the time. When he chooses to dig in his heels and act up with Tracy, I come in. Tracy also tends to trust him more, and I tend to be a bit more careful and nervous. But, paradoxically, I tend to push him more to do more things on his own and Tracy will often step in to help. We keep each other from going to far in one direction or another and causing Xander more stress and confusion and problems.
I know that without Tracy, Xander and I would have harder and less fulfilling lives. I was lucky beyond words when I somehow got her to fall in love with me, and the free-floating being that became Xander was indefinably and immeasurably enhanced by having her as his mother.
Thanks to Tracy being there for Xander and me, we are happier and better than we would have been anywhere else.
Happy birthday honey, and even though it can't really define how much we owe you:
Xan started school again. He's already in 4th grade, and if his past years are an indication, he'll meet his goals before the end of the year and start to work on next year's. For those of you who don't have kids in special education, they tend to work to what's called Alabama Alternate Assessments, which are standards perhaps a little lower than the usual ones. Since Xan's so intelligent, we have him taught to the usual standards and beyond, as much as possible. There are some things that may be beyond him under the usual standards - such as writing out answers - but in special ed he is allowed some leeway, like pointing to the correct answers instead.
It's a balancing act, pushing him to achieve everything he can while bearing in mind that some things he just can't do. We keep him in special ed so he can take advantage of that leeway, and also so he can be allowed to get up and walk around if he's getting too frustrated or take a break, things that in a normal classroom don't happen. We'd love to see him in a normal classroom, but that's not possible right now, so we balance the special education classroom with higher standards for him.
All parents are used to figuring out the perfect balance in many areas - independence vs. obedience, or trust vs. checking up on. With Xander, we have some others as well, both unique to him and common with other autistic kids.
Past research into autistic brains have shown a part of their brain, called the mirror neurons, is deficient. The mirror neurons activates when a person watches something unfamiliar to them, and it actually fires off in the same way as if the watcher was imitating the new action Say a child is watching someone juggle. The mirror neuron area would be firing off the coordination of the hands, the eyes watching the balls float, the timing of catch and throw - which means the child can at least imitate the action, if without success the first time. He'll have the rough idea.
Autistic people tend to be lacking in this area, which means new tasks for them are literally learned from the ground up. While babies and toddlers can watch their parents do household chores and know roughly what to do in imitation. Monkey see, monkey do. For autistic people, they don't get that layout. They have to start from scratch.
This can make everyday tasks and chores be tougher and take longer, and as a parent we have to decide when he's tried enough and any more would be of no use. Then we help him, or take over. It gets done, but he loses out on learning. But even then, it's not that easy. Is he having trouble with the task itself, or is something else causing problems? For example, let's say a child is having trouble washing himself in the shower. Just won't do it. Is the issue they haven't learned how to do it yet, or perhaps the sound of the water falling bothers them so much they have to cover their ears? Or the muted light from the closed curtains seems so off they can't adjust? Or the touch of the slippery soap feels odd to them?
Where do you draw the line there? Clearly a child needs to learn how to get clean, but what if the very environment to get clean in is a minefield for them? What do you do, meet them halfway and do some, or only make them take baths, or use liquid soap, or...endless possibilities and endless points of balance, ranging from forcing the child to do it regardless of individual difficulties to doing it for them, each one with benefits and costs.
To take another area, since Xan's more nonverbal than most, we used to take any words from him as a request. So he would demand his favorite songs by saying the title. We let that happen for a while, but now make him actually ask, can-I-please-have. He's learning to use whole sentences as we push him farther. Sometimes we tell him no when he demands instead of asks, hoping he'll learn to ask instead of stop talking altogether.
How about rewards? This week Xan got his AAA ratings, which he aced. So I let him have some sweet tea and some strawberry cheesecake Jello, which was more sugar than he usually gets. So he stayed up a bit later. Luckily, I had managed to get a good level, where he was justly rewarded but not so much he got hyper, which leads to late nights, which leads to cranky mornings, which could lead to a fit or even a meltdown. Sometimes he can't be rewarded like he deserves, because that will cause problems that will be worse.
And as I addressed back in an early posting, there's a balance between won't and can't, and that's sometimes the hardest to find. Since he's intelligent, we push him a lot, and sometimes it's hard to know if he's resisting because he's had enough, or because he can't do the task. Those are the ones that haunt me the most. I've long since accepted I'm not perfect, not that there was any doubt, and can accept the usual errors of parenthood. But to get mad at and punish a child for someone they are not capable of doing is a special kind of hell for the parent and the child. It's like kicking a puppy for not doing algebra homework. Add to that Xander's smart enough to know that faking it can get him out of stuff he doesn't want to do, and now you're navigating THAT minefield at night. Blindfolded. During an earthquake.
You want your child to do everything they can do while not forcing them to do stuff they can't. It's hard to get that scale right in the middle, where effort and lenience are perfectly in balance. You can only hope you're not so far off you do damage instead, and for autistic kids and their parents that balance point is often a lot harder to get to.
'Life ain't nothing but a blending up of all the ups and downs.' - Drive By Truckers, 'Carl Perkins' Cadillac'. One of Xan's favorite groups.
Well, this week I've been sick with something, so the blended moments have mostly been yucky. Fever and that drained feeling that goes along with it, like the energy needed to do anything has been squared and your reserves halved. A sore throat that makes conversation painful and very hard to understand, which means repeating for a pain sequel. I have never been so envious of mime's abilities before. Sore muscles and joints, so everyday actions feel like the aftereffects of a vigorous workout.
Life doesn't stop when you're sick, and this is more true when you have a child, and even more true when you have an autistic child. Still have to fix meals, check on him, give him a bath, and more. I have no one to blame here but me - I'm the cautious and careful one, and perhaps if I had pushed more he'd be more independent. When you're sick, you'd like a LOT of independence from your child.
But good things still happen.
I was very tired - bad night sleeping and feeling rough. So I wanted to take a nap while Tracy was at work. I convinced Xan to play in his room for a while, stretched out on the couch, and fell into an exhausted sleep for about an hour.
When I woke up, I felt really hot, and guessed my fever spiked.
Turns out when I slept, Xan had come out of his room, bringing his blanket, covered me up, and went back to his room.
That was a moment that was definitely an up, one I will remember for quite some time, and one I had to brag about.
You adjust things to be your new normal. When Tracy was pregnant with our little guy, if someone would have told me the things we would have to do for Xander, I doubt I would been as accepting and cavalier about it as I am today. Normality is different for everyone and you get used to whatever circumstances you're in.
In the same way you get adjusted, you also accept what you go through as normal, and normal it stays. Sometimes you're so immersed in your normal that you don't notice small, incremental changes. At camp, many counselors mentioned how much more Xan was talking since last time and how verbal he was getting. I didn't see that, since I'm with him all the time and small changes/little improvements blend together into day by day normal. But people who hadn't seen him for a while noticed.
So new people see Xan different than I do.
Tracy and I see Xander differently too. I tend to be more cautious and nervous about him trying new things. If I had my way, he'd probably stay home a lot more - I've seen the meltdowns and had to deal with the damage, and that's things you don't want repeated. Tracy, though, wants to see him do things and is more willing to take 'risks' and push him a bit more. It's a good balance between us - she won't let him stagnate and I can keep him with what he can handle. I'm happy for that. I know that sometimes I choose the safety of routine over the chance of new experiences, which is not good. I need her to see things her way and push me out of what I'm used to.
So Tracy and I see Xan differently.
Because Xan is high-level, sometimes I have a problem. People will talk to him and he'll do various things in response. Maybe echolalia, where he repeats the last few words said to him. Perhaps covers his ears, or keens happily at them, or holds out his hand in a gimme-high-five gesture. Sometimes I don't know if I need to explain he's autistic. There are times when an explanation is mandatory. We were shopping, and next to us was a family with a teenage girl. She was wearing something shimmery and Xan was fascinated. So he leaned out of the cart and began stroking it...unfortunately, the part he reached was a part you don't stroke in public. She turned around ready to be upset - most justifiably - and I rushed in to apologize and explain. She forgave me, let him touch her shirt some more, on the sleeve, and her family and I talked a bit.
Other times, I don't know if I should make an excuse for him or just not say anything. Is whatever he's doing at that moment normal enough that it's not a big deal, and my explaining sets him apart when he didn't need to be? That may seem strange, but I don't want to jump into giving him a reason to be different if it's not needed. Cases like that, in my mind, come down to if Xander understands - is he aware of social cues and choosing to ignore them, or does he understand and I'm not giving him a chance to be 'normal'? It's hard to say. Many parents of autistic children, once communication is set up in a give-and-take conversation, find their kids understood a lot more than ever thought, in all areas. When my mom died suddenly last year, we didn't think Xan would really understand what was going on - we explained it to him as best we could, but I guessed that given his youth and his autism he wouldn't wholly get it.
I was so wrong, and that's stood out as one of my biggest regrets. He ended up breaking down at the graveside service. He also has never asked to 'go see Nana' since then. He was grieving without crying. Maybe someone else would have noticed that - I didn't. He seemed his usual self. Maybe someone else would have seen clues he was in mourning.
Perhaps the biggest reason he needs to do more is so I can see how other people see him, and what they notice I don't. Maybe he can see more of himself too, reflected in other people's eyes.