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.