So I brought Xan home from camp early yesterday. He was banging his head and acting like he felt bad, and I felt kinda cruddy, so I figured he might he getting something like I might be getting something. It wasn't a smooth day when I got him home, either. He whipsawed from happy to angry to whiny to complainly - puberty in 15/16 time. I guessed he was more tired than anything, and we tried to get to him sleep early.
Didn't work AND he woke up at midnight after maybe two hours sleep. So I got up too, and stayed with him in the living room. After two more hours, he was sorta drowsy, so we tried sleep again. That lasted an hour, and then the whining and complaining came up again. It was a long night. I saw the sun up and wasn't to doggone pleased about that.
When Tracy got up, she asked what kind of night we had. I listed the litany of complaints, and then added in desperate optimism, "But at least I got to catch up on some of my magazine reading!"
That's a familiar thing to us - we search for infinitesimal silver linings in clouds so big they would cover Jupiter. I do it to remind me that no matter how bad it seems to be, we have a lot of good things. Yes, Xan is autistic, but by all accounts and opinions of his teachers, therapists and doctors, he's a genius. (And of course we think so too, but that's kinda expected, isn't it?) True, he doesn't talk much, but he's smart enough to get his points enough and we can sorta kinda figure out some of his signs, so at least it's not a complete mystery. He does have issues with things like echoes, but he can function outside the house, so we don't have to schedule everything second by second.
Of course, it may also be whistling past the graveyard, because the simple fact is any autistic person has a hard time of it. In my last post I mentioned the policeman stopping to talk to me - what if he had separated us on suspicion of kidnapping? What would have happened? What if I'm in public with him and something happens - he wouldn't know to go get help or go to safety. That's one of the reasons I started taking Tae Kwon Do, so I could defend myself and him if I had to.
More general things affecting families in general people may not know - many doctors and dentists won't see autistic kids. We met some people who had to drive to Birmingham to get their kids checkups. (By the way, in Anniston, we've used Dr. Cabellero and Dr. Norby for doctor and dentist, respectively, and they have been wonderful in working with us. In fact, they have often helped me over the phone when Xan was acting sick, giving me things to try before I had to take him in to one of them, because that can be a struggle.) How do you get childcare? It's a challenge for the parents, how can you expect your average babysitter to handle it? We're lucky and careful enough that I stay at home with him - many families can't. How do you handle a meltdown in public? As you've seen by my adventures, it can look very bad. And these are just the current problems - the future is a whole other set.
But I bet most families would choose to see the positives, listing what their child can do and how they're lucky in many ways. It could be worse. We probably know people who have it worse and still manage to find those tiny silver linings in their storm clouds. It helps.
But still. It's often nothing more than desperate optimism.
A few years ago, Xan's then-teacher asked if he could be used as a subject for the county - have some lady come in and interact with him with the teachers watching and seeing what handling an autistic kid was like. I said sure, why not?
Came the day. It was during the summer, and Xan wasn't too pleased about going to a school during his season of freedom, so he went in a little edgy. For my part, I was hobbling in on a cane, after tearing two of the ligaments in my knee. That hill to the school seemed AWFULLY long.
We go in, they set up, we start.
Right off the bat things go wrong. The teacher had placed a bunch of objects on the table - shapes, dolls, toys, models, and the whoopsie one I could have headed off - food. Xan seems to going through a continual growth spurt, and he saw that food and wanted it to the exclusion of everything else. I was consulted with and said may as well let him have it, because he could out-stubborn every single person in there on their BEST days and his WORST one.
They decided I could sit up there with him and perhaps...encourage...him to show off what he knew, since he hadn't done a blessed thing but demand that food. I tried but could tell he wasn't into it. I wasn't that upset - I knew he was smart. But I did hope he would show off a little bit.
The teacher leading the demonstration finally got to something he'd do. "Can you find the circle?" He reached for it. "Good!" (This was a tone of mixed praising and possible amazement he had listened to her.) In a spirit of unbridled yet disbelieving hope she said, "Do you think you can find another one?" I swear, he looked at her with utter disdain in his eyes - Nolan Ryan asked to pitch underhanded, Robin Williams asked to tell a knock-knock joke, Francis Ford Coppola asked to direct a school play disdain here. For a child with limited vocabulary, he gets his point across.
He reached out, gets more circles, puts them together. Then he gathered up different things of the same color, put them together. Then he got various items that went together in a kitchen and put them together. All this to gasps and mutters of approval from the audience. And after the kitchen items, he said, "Done!" and stood up.
I managed to hold off laughing until we got in the car.
Well, it's been a busy week. Still volunteering at camp, and this Friday we went to Birmingham and stayed overnight. (How is it that driving, where all you do is sit, push pedals and turn the wheel, is so exhausting?) The Autism Society of Alabama had a Group Leader's conference, and since my wife has the local group she was invited. We got to see Mr. Tumlin, our good friend, meet some more people, and Tracy learned some new things - like her walk last April took in almost $4000! W00t!
The trip went pretty well. The hotel had a pool, so Xander and I got to swim, and he handled it very well. Perhaps common with other autistic parents, we've discovered that giving him a countdown - we're stopping in ten minutes, five, four, etc. - does help them get ready to transition to stopping something he likes. Such as swimming. He got to spend almost two hours at a time, and quit when told to. He also spent almost the whole time in the pool without his life jacket, and loved it. I'm not sure I'll tell the camp here to let him swim without it - he seemed to do that preliminary kind of swimming, where you bounce off the bottom of the pool, gulp some air, and thrash a bit. You know, the kind that tends to attract some attention from lifeguards and curious passerby.
The trip was much, much better than last year's for us - Xander and me.
Last year, Xan had one of THOSE NIGHTS the night before our trek. The kind where you warn, warn again, explain just in case they don't understand, warn again for the last time, warn AGAIN for the last last time, warn for the absolute last time, threaten to punish, re-emphasize the punishment, and finally after exhausting every last possible chance and nerve, take something away.
In this case, I said he couldn't swim.
However, I did pack his swimsuit and life jacket at the last minute. Because, as probably every parent knows, as soon as you take away something major from a child they tend to do something that makes you burst with pride...and you can't reward them with their favorite thing, since you took it away. Betting the odds in my irony-filled life, I figured that would happen.
I want to point out that as it was at the last minute, they were kinda shoved in. Somewhere. I think...
Of course, Xan did something good. I think I was getting a headache, so we were stuck in the room, and there was nothing on TV to keep him interested. I begged for some peace and quiet, and he let me sleep uninterrupted for a couple of hours. For any child, much less autistic, this may rank as a minor miracle. So I said, okay big guy, you can go swimming.
I think you can guess where this goes.
Tear through the suitcase. Can't find the swimsuit. Didn't bring an extra one, because why think ahead?
Xan, completely understandably, gets mad. I said he could swim as a reward, bragged on it, made sure to point out he did very good so he gets to swim...and then he doesn't. He had a fit. A fit, not a meltdown. The difference between the two is like watered down Tabasco sauce and a habanero pepper, a slight cough versus pneumonia, or not getting arrested and almost getting arrested.
The fit reached such heights that I took away the swimming again. But I had to admit I was mostly at fault here, so that night, before going to a Group Leader's dinner, we'd stop at some shop and get him a new swimsuit. Unfortunately, Xander is like a usual child when it comes time for clothes shopping and expressed his dislike of the activity. Loudly. Emphatically. So I gave up. He was in such a bad mood we skipped out on the dinner, just dropping Tracy off and going back to the hotel.
Long night ensued.
Next day. D-day.
Tracy had some more meeting and we had to check out of the hotel long before she was done. So we went back to the mall, to a bookstore. I love books and Xander likes them, so I figured it would be a good place to kill some time, and perhaps after we'd check out the rest of the mall.
There was some kind of stage set up there. Xander, who had picked out some books he wanted, handed them to me and went up there and did his twirling. There were some little scenes set up, and he kept knocking them over. A repeat of warn, re-warn, on and on happened until finally that parental magic moment of ENOUGH was reached and I said that's it, we're leaving, and you can't get these books.
THEN the meltdown happened.
As spectacles go, it was pretty entertaining for anyone not directly involved in it. Screaming - and I mean screaming, not a slightly raised voice - check. Red face, check. Flinging himself on the floor, check. Banging his head with nice thunky sounds on the floor, check. After a fruitless attempt to calm him down, I get him up, grab his arm, restrain his head, and start dragging him to the door amid a chorus of incoherent screams and fighting.
If you think this looked more than a little suspicious, you think like a policeman. To be more specific, like the policeman who happened to be in the store.
A bit of polite questioning occurred, which luckily was helped along by my having some Kids ID cards of Xander which clearly showed he was my son, something I had had made for emergencies...not this specific one, but still. And by then Xan had calmed down, perhaps giving me some mercy and answering some questions about his name and birthday and the like that matched the ID cards.
We ended up sitting in the car outside, waiting for Tracy, for over an hour.
The lost swimsuit was the first thing unpacked.
I almost gave myself a concussion slapping my forehead.
One of my favorite movies is How To Train Your Dragon. Xander likes it too - it's one of those movies I can crank up and he'll stay and watch. There's a scene where Hiccup, the kid, is flying Toothless the dragon for the first time. Toothless is injured after being shot down by Hiccup, losing part of his tail. Hiccup, feeling guilty, has made a synthetic replacement but he has to control it with a foot lever. Getting used to it, he has a cheat sheet of different positions. He sends Toothless straight in the air, flying high. But he loses his cheat sheet, reaches back and comes undone from his saddle. He falls. Toothless also falls, since his new fake tail collapses.
They fall. You can't tell how far they've gone, until after a few seconds, a mountain appears behind Hiccup and quickly grows and rises off screen. It's an effective shot; you see it and think 'the ground's getting closer'. No matter how tall it is, it's still connected to the earth. A warning.
In real life, Xan has his own mountains. This weekend has been full of them. We have no idea what is going on with him; not being able to tell us leaves us in a guessing game. Does he feel sick? Is he mad we told him no to something? Is he upset he's not getting what he wants? Does he want more attention, less attention? Overexicted? Bored? Cranky? Tired? On and on.
It's been one of those days that seems to stretch on and on. Every parent has them, when the child you would walk through fire barefoot for has you wistfully remembering the times of peace before you had them. I wouldn't trade him for anything...but there are some times I'd come closer to entertaining offers.
So we have to watch carefully and see what signs we get. Does he have a fever? One of the more clear and easy to climb mountains. Is he chanting something over and over? That's what we've called looping, where he seems to get stuck on something he can't stop until he's all wound up and heading for a meltdown. Is he saying "and by contributions"? That means he's frustrated, more than likely because he can't have what he wants. And if he's not doing any of these more obvious than other signs? That means this mountain's a little harder to climb.
It's not easy. It's a hard climb. And sometimes it feels like that ground's getting closer and closer.
I wrote a post about how having an autistic child makes you alone in many ways, from what you deal with to having to pull back from society to celebrating individual triumphs and heartbreaks. Paradoxically, Xan's autism has also made me probably more involved and included in some ways.
This week has been light on entries because Xan is in camp and I'm volunteering up there. Six hours being in charge of a group of kids, with two of those hours spent walking around a pool in 95 degree heat to keep count of them, will wear you out and sweat you down.
I imagine I hear some people slapping their heads in a facepalm, saying "Heat...pool...gee, what can the missing answer to THIS equation be?" And contrary to majority vote and popular opinion, I'm not so dumb as to miss this body of cool water I'm pacing around. Once I did try swimming with him and my group. It was great, for a while - Xan and I played. He loves the water, he loves playing with me (possibly the only area where I outrank Mommy in anything), and while we were in the water, everything went swimmingly.
But when it was time to get out...
Xan was overexcited and didn't want to stop, and ended up so frustrated at the good times ending that he tried banging his head on concrete. Well, I say tried. More like succeeded. Thankfully, in response to my mixture of shock, fear and command voice, he only managed the one time. But still. Ow.
Any parent who has seen their autistic child headbutt something solid and strong like concrete, a wall, a table, etc. knows how amazingly tough and impervious to pain their skulls can be. I call Xan hardheaded as a statement of fact, in grudging admiration, and also more than a little fearful recognition. They'll also tell you they don't want it proven time and again, and in that spirit I don't get in the water with him much anymore. I get to watch him have fun, and that means a lot.
The volunteers at the camp can handle him well. But I like being there so I can try and end things before they start, head off problems before they become meltdowns, and warn unsuspecting people who think it's just adorable Xan's come up to them and taken their hands that "You're about to go for a spin." It's unknown how many squares acres of carpet cleaning have been avoided by my timely warnings. I stay away from his group but am always a short walk away.
In addition to this, if something is going on at Xan's school I also volunteer. I'm pretty much penciled in as soon as any field trip for his class is planned. It's good to do and sometimes I bend the rules and get him something from a gift shop - an impossibility if I'm not there. Doing good by doing well, as it were.
One of the nicer things about doing this is seeing what Xan can do. In this recent camp, he's made a friend he'll go to. He mainly manhandles this friend, pulling his head down so he can rub his hair or ask for tickle or things like that, and this guy is a saint in training to put up with it. He does, with a smile. Something we get crafts that seem to be more Xan's than the helper's hands - eyes off kilter, a casual regard of picture lines, some organized chaos of a picture that tantalizingly hints at some strange order I can just see out of the corner of my mind. Some of the school outings have also shown me more of Xan, like the time we were in an aquarium gift shop and he reached out and grabbed a white whale stuffed animal - after we had left the whale tank, where a white beluga whale had hovered at the second platform where Xan had been, right over him, and they stared at each other for some minutes.
(No, I don't think there was some communion of the minds or a recognition between two spirits or the like. That would be a miracle and I'm a cynical person. But on the other hand, Xan putting those things together like that was a kind of personal miracle all my cynicism crumbles in the face of.)
In being with him more outside the home, where in addition to the control and familiarity there's a lack of surprise and novelty, I get to be part of something else different, unexpected and unplanned. In helping out, I get paid back. I also get to be included in some of his successes, strides and surprises.
My son's exclusion from much of normal society has let me be included in some extraordinary moments.