Three Trains Leave the Station

Autism, for years, was seen as a separate diagnosis from Asperger’s Syndrome and the other variations of disorder that are now all lumped together as “Autism Spectrum Disorders.” Honestly, I think things were a lot easier when they were different diagnoses, but school districts and insurance companies were using the fact that the other disorders “weren’t really autism” to deny coverage and services, so . . . we get to where we are today. But there’s a big divergence in the course of these shades of the spectrum, and it’s sort of the elephant in the room whenever someone’s talking about autism.

So here’s a little story to demonstrate the different courses that I have personally seen over the two decades that I’ve been in the autism world.

Imagine there’s a big busy train station, crowded with bewildered people and strangely behaving children. The children are all small, and the parents are all in stages of grief and confusion. They thought they were getting on a boat, maybe even to Holland, but instead they were steered into this noisy place and they’re being herded onto three different trains, apparently at random.

The trains all take off from the station, headed in the same direction, north. There are lots of experts wandering through the trains, giving lectures. There are therapists of every stripe and school officials and neurologists and pediatricians. They’re all talking loudly about what the Right Thing To Do is, and the parents are all trying to take notes while dealing with their tantruming children.

There’s all sorts of information streaming across big digital screens inside the train cars– websites, message boards, blogs, Facebook groups, and Auntie Tilda’s personal opinions. Outside, the trains are moving through a dark and spooky-looking forest. Whenever the parents raise their eyes from the screens and ignore the experts for a moment, the woods are there, filled with unknown monsters and terrors.

The parents try their best to listen to the experts, to their children, to the digital information, to make some sense out of all of it. No matter which train they’re on, they all try the same things. Maybe it’s a dietary intervention or a sensory integration exercise or some Applied Behavioral Analysis. All of them work just as hard to find a way to reach their children and make a difference in their lives.

And, suddenly, one train track diverges from the path through the forest. The children inside are around seven or eight years old and out of nowhere, it seems, the train is moving out of the trees and into sunnier fields and gently rolling hills. The parents on this train are grateful, thankful, and happy . . . but some of them get some odd ideas. They start thinking that they did something to MAKE the train turn east. After all, their child started getting better right after they tried this, or that, or the other. It must have been the diet or the therapy or the hours they spent patiently sitting through all the experts. The train turned! They feel like they saved the day.

The children on that lucky train can almost be mistaken for “neurologically typical” children at times. They still have quirks– sensory problems and issues with sociability are often lifelong– but they can go to school without an aide and the parents can start worrying about their grades and whether or not they’ll get into college. The parents feel like they dodged a bullet and they’re often very positive about how this whole experience has made them better, stronger, wiser, etc. They say things about how ASD is just a “difference” not a “disorder” . . . and for their kids, they’re right.

The other two trains keep rattling along through the forest. The terrain is getting rougher. Dark mountains loom in the distance. But one train starts veering ever so slightly west. The trees change, more straight pines and less of those twisty, scary mystery trees. There are some deep canyons and some rocky hills, but there’s sunlight ahead and things don’t look all that bad. The children on the train are getting older, into their teens, but they’re talking, they’re able to mostly be mainstreamed in school.

The parents on this train can finally have a little hope. Sure, the track runs through lands that are prone to thunderstorms and it can still be pretty scary, but their kids (who would have been called Asperger’s in the old days) are definitely capable of brighter things. They can go to prom, drive a car, hold down a job. They’ll always be weird, they’ll struggle with fitting in and feeling normal, and some of them can be dependent on their parents for the rest of their lives, but they can get along. It’s rough, but it’s pretty country. Their parents still struggle with feeling overwhelmed at times, and they worry about their odd little passengers, but sometimes they can look out of the windows and feel pretty good about their lives.

The people on the third train are starting to worry. The land ahead looks bleak, dark, and rocky. It’s getting colder, and there’s a howling wind that keeps whistling through the cracks in the windows. The experts stop talking so much and start disappearing. The people that replace them seem a little less qualified, less highly paid, and there are more bureaucrats and minimum-wage aides than neurologists and occupational therapists. The digital information isn’t hopeful anymore, either, and all the posts and blogs and messages about parents worrying about their three year olds seem hopelessly out of date.

What they wouldn’t give to be back at that station! Their little passengers aren’t so little anymore, and the parents start to have trouble dealing with them. A tantruming twenty year old is a different problem than a tantruming three year old, and the parents aren’t as young as they used to be, either. There’s so many more frightening problems to deal with, too– aggression, inappropriate sexuality, failure to learn toileting and horrible toileting problems, obsessions that send the passengers into wild-eyed rampages, property destruction, pica, and the ever-present fear that the passengers may just decamp right into the path of a car or plunge themselves into a river or pond.

The parents are getting older and they know things are only going to get harder for them physically. They’ve probably injured a back or a knee by now, trying to control a raging teen or twentysomething. They have lots of time to look out the windows of the train, in between cleaning up after, medicating, and monitoring their child. What they see is bleak. The train is getting closer to the pole and the trees start to die off. All that’s left are the scrubby little plants that can handle the cold and the absence of light.

Sometimes, the parents will hire someone else to sit for a while with their passenger. There’s a shifting parade of aides and assistants and respite workers. There’s a possibility that their other children may get brought onto the train to take a turn sitting with the passenger, but that’s a dreadful thought for the parents. Who wants to leave a trip like this as a legacy to one’s children? Some parents do desperate things as the sky starts to grow dark. Some of them will do the worst and push their passenger off the train. Some will leap off the train themselves. Many of those will take their child with them, jumping out to their eternal fate. It’s a sad end, but not as frightening as the possibility that a parent may be pushed off by their own passenger.

A few parents may keep their wits about them and stay relatively cheerful, but sometimes it seems like whistling in the dark. The train tracks stretch out into the distance but there are no stops visible. The passengers often remain mute, self-destructive, violent, incontinent, and unable to care for themselves. And there’s the digital screen, filled with the chipper parents from the first train, saying “if you just do A, B, and C, you’ll CURE your child’s autism!” But the parents on the third train did those things, you see. They were just on a different train entirely, on a different route, with a different destination.

I hope I don’t come off as too depressing with this little story, but it’s a true story, as far as I know. Needless to say, I’m riding that third train north. I wish I’d been on one of the other trains. On this train, you don’t find yourself saying cheerful things about how autism is special, or their difference is a unique blessing, or how you wouldn’t change your child for the world. People on my train know that we’d do damn near anything to have never been on this train in the first place.

And yet we keep riding. And to the parents on the other two trains, understand– we don’t hate you, but we do wish you understood how different our paths really are. Before you post another positive meme or adorn everything with puzzle pieces, spare a thought for the mother who is being slammed into a wall by her 6′ tall autistic son when he’s mad that his chicken nuggets are all gone, or for the parent who is spending their Saturday night scrubbing feces off the floors and walls, once again, or for the dad who is looking at his checking account and retirement account with weariness and grief, because there’s no earthly way he can afford to retire, ever.

We’re still on this train. And your train is similar and we know where you started out from . . . and we respect that you made that journey. Just remember that the “spectrum” of visible light includes everything from red to blue, and they don’t have very much in common in the end. It just allows us to see.

The morning report

Things my daughter threw into an unattended trash bag on the night of 7/27/15– an Xbox 360 controller, two perfectly good incandescent light bulbs she took out of her bathroom light fixture, a torn cover for a Wii remote, the lid to one of our water storage bottles, and a glass candy dish.

Times I have picked up the same toys and books and games and dvds that she has thrown onto the floor of the game room, nursery, living room, dining room, kitchen, and master bedroom: innumerable.

Things she allows in her own bedroom: a bed, a bare pillow, a blanket, a desk, a chair that she has broken the back off of, a bookshelf that cannot be used because she removed all the screws from it, her laundry basket that contains her dirty AND clean clothes (mixed by her), and her new green curtains hung on a shower rod.

Number of times she said “drill” yesterday once she decided she needed a cordless drill to disassemble the rest of the house: at least two hundred. Including the fifty times while we went to the shopping mall to buy candles and clothesline and soda pops. 

Number of times she’s watched the new Spongebob movie dvd that she requested as one of her Christmas presents: two.

Approximate depth of the ocean that her obsession with “King of the Hill” and “Family Guy” and “The Cleveland Show” makes me want to sink the makers of those shows to while they are attached to huge boulders by titanium chains: ~7000 feet.

Time spent yesterday in scrubbing poop off her concrete floor (since she removed all the wooden plank flooring and threw it out into the hallway, piece by piece, including the underlayment): about 30 minutes.

Odds that I will survive this summer without totally losing my mind: Oh honey, that ship has sailed. 

Addendum: times so far this morning I’ve had to scrub more poop off her floor: 1, so far. It promises to be a long long day with the mood she’s in. 

Onwards, weary soldiers

So, Friday was my big errand day because “payday”, of course. I took Miss Autism, the Tank, and the Ninja with me into town. I was not feeling good– the sleeping pill I’d taken the night before was messing with my vision and I have been weirdly cranky for several days. But I wanted to give hubs and the Bear a break, because dealing with those three is stressful for anyone. Better me than them.

Anyhow, I was already cranky and things did not improve as they went on. Everyone we ran into was being either dumb or obnoxious. Maybe it was the heat, maybe it was because it was a Friday. Maybe people just suck to be around. I dunno. Maybe it was just me.

I didn’t have patience to play the part that society says I must play in public. If you’re a woman, you know the part– always slightly apologetic, smiling, friendly, lots of “please”s and submissive posturing. It’s ridiculous that women have to act this way in public, but just watch them sometime. Instead of just asking a store employee for help, you must cast yourself as helpless, maybe a bit silly, you do the head tilt, you look beseeching. Ugh. But if you don’t act that way and you act as direct as a man could get away with, you’ll get people’s snottier side in return. It’s the kind of leftover sexism that everyone accepts because nobody really notices it.

It turns out that I have caught the illness that the Adorable Baby has had for the past week. I feel really sorry for him and his brother now, because this sucks. You feel grumpy as heck and you itch and your ears and throat are sore. I didn’t know it at the time, as I didn’t notice the rash until I got home and changed into shorts. But it was definitely making me feel very impatient and easily frustrated. Add that on top of people being rude and incompetent and it was just a disaster in the making.

SO many things went wrong, and since I was an emotional wreck, I didn’t respond to them well. But some of them were just annoying. I didn’t want to play “the game” with the librarian, as I was trying to keep Miss Autism from running away and trying to keep an eye on the boys, too. So I stated things like a man would state them– here’s the problem, can you fix this? I wasn’t rude, just direct. The lady got very snippy with me and dragged her feet at each step. And I’m thinking, sheesh lady, I just don’t have time to beg you to do your JOB today.

Because that’s what women tend to do, at least in my experience. They have to “pretty please” waiters and checkout tellers and librarians and everyone else. They have to act like a worker just doing their job is somehow a personal favor to them, following it with praise and thanksgiving. And I want a nice friendly society as much as anyone, but guys just don’t DO this. If you ever see a man saying “pretty please” in any manner, he’s probably a con man. If a woman doesn’t say it, she’s treated like one.

I’m not much of a “feminist” because feminism seems to have aligned itself with pro-contraception and pro-abortion. I can’t support either of those things, as I actually believe what the Catholic Church teaches about sex, but I also support what the Church says about women having unique roles to play and inherent dignity and value. And it’s pretty demeaning to have to pretend that a checkout teller is doing you an enormous huge favor just to manually add a coupon when it doesn’t automatically scan, or to have to wheedle and beg a librarian to follow the library’s checkout policy on overdue book fines without giving you crap about it. What should we call that, “feminism of not having to kiss ass?”

So, whatever, I survived. Even without playing nice when everyone with two eyes could see that I was struggling just to contain my handicapped daughter. She did manage to get away with a few things– she started manhandling a rotten banana peel in a parking lot, picked up someone’s cigarette butt and pretended to smoke it, re-arranged lots of shelves and racks, and her piece-de-resistance was snatching up someone’s half-drank can of Pepsi off a dollar store shelf and starting to chug it. I freaked out on that one. All I can think is “disease!”

Anyhow. Got a big giant load of groceries, bought some $1 storage bins at the dollar store to use in the game room closet, picked up my hold books (Old Yeller among them. Prepare to weep.), got a refund for the dead fish, and managed to keep all three of the kids alive. Then I came home and worked on organizing the toys into the new storage boxes.

So tired. Of all the crap, honestly, but also just physically tired. Gonna call it a night. Peace out.

In the good old summertime

Summer in Texas has truly arrived. It’s hovered between 99 and 101 all week, and it never really cools off much at night. Right now, for example, it’s 2am and 81 degrees outside. Weather.com helpfully informs me that it “feels like” 85 degrees outside. I could have guessed. Our air conditioner is only running upstairs, thanks to a broken fan motor downstairs, so it’s 83 degrees inside the house. Mostly, I feel like I’m melting.

There’s no relief in sight, either.  It’s supposed to be 102 all next week and it won’t cool down until September. We haven’t had any rain since June 27, and that was barely anything. Didn’t even really water the garden. Everything’s starting to dry up and turn yellow and tan. Our wet spring is just a fond memory, and we’re now officially back to the Texas pattern of “hot and not a heck of a lot of rain” for the next three months. Yet it’s miserably humid, because all the trees and grass are being baked dry and their precious moisture gets cooked out and turned into a steamy miasma that makes one sweat like mad (since it’s too humid for it to evaporate.)

Oddly enough, I’m feeling a ungentle pull towards watching British mystery shows.

It’s one of my addictions. It’s probably better for me than caramel, by far. When it’s hot and miserable outside (and, alas, not much better inside), all one wants to do is escape to a fictional world where summer never really gets that hot and people can actually drink hot tea during the summer without turning into a puddle of melty goo.

Luckily, the BBC exists to feed these sorts of addictions.

I really enjoyed “Vera” with Brenda Blethyn. It goes without saying, one hopes, that “Prime Suspect” with Helen Mirren is great. Apparently, they tried to Americanize it with Maria Bello . . . not sure if it’s going to be worth watching, but I might give it a try. Wallander with the British cast (I mean, come on, Kenneth Branagh AND Tom Hiddleston?) is really good.

I hate to admit it, because it seems so trite, but I’m an Anglophile and a lover of Masterpiece on PBS and I drink hot tea. There, I said it. Think of me what you will, especially as I always forget to watch the current seasons and end up watching everything later on Amazon Prime (which has a good selection) or Netflix (which really doesn’t but sometimes will have a season of something). I mean, “Poldark” is on this month and I’ve missed it every week. Why? I dunno, maybe because I’m not paying for it every month as I do with HBO shows!

Anyway, the summer doesn’t give one much else to do around here. It’s simply too hot and muggy to be outside except very early in the morning (or after 3am and before 9am!) I’ve been trying to keep the garden alive by watering it, and also maybe soften up the soil so we can till it up for a fall planting. The boys and I cleaned out our old 10 gallon aquarium and bought 3 goldfish. We’re working on turning the cat’s shed into a playhouse. And I cleared out their room and made it nice for them, decorating the closet like a jungle so the Tank would have a private spot to decompress.

The Adorable Baby and the Tank both have a mysterious virus that our doctor swears isn’t the measles, but it seems pretty similar. The baby’s covered in a rash from head to toe and has an ear infection. The Tank just has a rash on his face, but he’s been feverish,complaining of headaches, and feeling cranky. (No, it’s not encephalitis! I’d take him to the E.R. in a heartbeat if I thought it was!!!) It’s hard to deal with two cranky kids at once, especially as the Viking is still halfway across the country, the Baking Bear is off decorating cakes half the time, and Miss Autism has only stepped up her destruction game as the summer has gone on.

Some of the things she’s been doing are actually ludicrous. I mean, in what way does it make sense that the kitchen floor MUST have a raw egg cracked on the tile next to the trash can. Did she see an egg fall there once and become permanently fixed on the idea? It makes me insane . . . I’ll mop and everything will be nice, I come back into the kitchen and there’s a raw egg just splattered on the floor next to the garbage can. Usually, it’s an egg from our chickens, too. Maybe because Miss Autism prefers brown eggs, who knows. (I’ve had to buy eggs for the past six months, since we lost too many hens to predators and the new ones are only just now starting to lay. The two old hens occasionally deign to lay an egg or two.)

Some of the things she does are actively dangerous– she shorted out the breaker in my bedroom this week by twisting an extension cord around until it frayed and then broke with a loud pop and the lights and computer suddenly going black. It’s just terrifying the things she gets up to. Her obsession with light switches and wall sockets is keeping us constantly trying to remove things she could use to get hurt with. We purposely chose goldfish for the boys just because we could keep them in a tank without lights or heaters or filters– all of which would need electric cords. Miss Autism likes to “play” with fish (usually fatally for the fish) and we didn’t want any chance for her to electrocute herself if she ever gets past security and messes with the fish.

We’ve removed almost everything we can possibly remove– but how are you supposed to live in a house without using a single electric cord? I don’t know about you, but I’ve never heard of a television or toaster or refrigerator or computer that runs purely on batteries. She’s cut the end off dozens of cords, even the cord to the small refrigerator that we use to store condiments and bottled waters. Usually, she unplugs them first. She just loathes cords having plugs attached to them–another of her weird obsessive beliefs. She’s ruined three surge protector power strips and more adapters, connectors, plugs, and chargers than I can even begin to replace. And we keep finding more wires to remove and hide and try to secure somehow.

Sometimes, though, something fails in the security precautions and she finds a way to get ahold of a forbidden item– we usually keep all scissors and knives and forks and spoons locked up in a toolchest. But sometimes we actually have to USE these items and they don’t immediately get put away. You know, because people have a hard time remembering that their fork or pair of kid scissors could be used for malign purposes. Anyway, she has her little ways of making us nuts– today, for example, I tied a very small key that opens a very small lock to an emergency whistle, using the yellow cord necklace for the whistle as a sort of bright keyring that I could hopefully find easily. I also tied a spare lock on it. I went to town to buy the fish, left the keys in the Bear’s keeping. Came back and found the key, the lock, the whistle, and the knotted end of the necklace in a small pile in the game room. The rest of the cord wasn’t with it.

After a search, we found the rest of the bright yellow nylon cord– she’d sat on the couch and patiently cut the cord into one inch segments. There was a neat little pile of them sitting right next to the scissors.

She’s really just messing with our heads at this point.

So I’ve been busy this summer. But I want to be languid and idle in a mellow garden in the English countryside. Since that’s never going to happen, I’ll make do with watching some romanticised movies that give me the illusion, for a moment, that I live in a place where it’s not 100 degrees in the shade and no one looks at you askance if you want your tea hot instead of over ice.

It’s summertime. In Texas, you do what you have to do to survive.

Not enough sleep, too much cleaning

That sums up my July so far, in a nutshell. I’ve been cleaning, and cleaning, and cleaning. With Miss Autism home for the summer, (her pitiful summer school being over with) she’s got a fulltime job in destruction. So I clean and clean and she goes right behind me and destroys.

It gets pretty old.

But anyway, today I cleaned my bedroom and the game room. I folded a lot of laundry. I sorted some junk in the boy’s room and threw away some garbage. You can see that this doesn’t make for exciting blog posts. You really don’t need to hear me complaining about the Hot Wheels that I stepped on in the middle of the night, or that Miss Autism never sleeps, or that I am sick of the heat. Too too boring, darlings.

In my spare time, I peck at the little stirrings of a novel that are scattered around in my head. At some point, I am sure this will all coalesce into an actual write-able novel, but right now it’s just backstory and worldbuilding. I am thinking of starting notes in a 3 ring binder. Very old school, but probably better than fifty different Word files.

So that’s it. I don’t sleep much. I don’t seem to accomplish much because my cleaning all gets undone. I fret over things like hating our new coffee creamer because it’s gross and wishing my new bracelet didn’t get snagged on everything I touch.

Not exciting. But summertime, here at least. September will be better.

Tempus Fugit

So, my son has gone away for a month.

No, I am not 100% on board with this. There are several very good reasons why he went, and I’m totally behind all those reasons. But, at the end of the day, it’s my BABY and he’s flying on scary airplanes and spending a month out of my sight and a million things could go wrong.

Forget, for a moment, that I flew from San Antonio to Eugene, Oregon, when I was only 2 years older than he is. Also, I had a 6 month old baby with me, and my flight was delayed due to snow. The kindness of strangers was all that saved me from being stuck in Denver overnight with a baby and no baby formula. (By the way, thank you, anonymous people from 22 years ago. You saved me and the Bear.)

Forget that he’s over 6′ tall and big and manly and a much less vulnerable person than a teenaged mom with a small baby. My reasonableness doesn’t figure into things when I’m being panicky.

Forget that he’s spending the month with MY dad, a guy who was reasonably adept enough to keep me alive during my childhood. Also the guy who let me buy my first Converse shoes when I was 14, as well as the first Guns N Roses album. Okay, maybe the last one isn’t exactly a recommendation, but I sure thought it was when I was 14.

Forget, while we’re at it, that I was only a year and a half older than my son currently is when I got married.

Lots of things to forget. Of course, what I most want to forget is that he’ll be leaving again in two years, this time to college.

My older daughter is more of a homebody, loves her baby brothers, doesn’t seem in too much of a hurry to jaunt off into the wide world. And we couldn’t pry my stepson out of the house with a crowbar until he was 25 and I gave him an ironclad move-out date. But the Viking lad is not like that– he’s got the spirit of his ancestors in him for sure, the wanderlust and conviviality and desire to get the heck out of Mom and Dad’s theocracy.

And having him away is rough. You don’t realize what an indelible part of yourself your children become until they’re suddenly not there. Nobody can remember how many plates to use to set the table. I bought an extra Laffy Taffy at the grocery, only remembering that he was gone after I opened the bag to pass out the candy to the other kids. I start to call for him a million times a day.

But it’s been an eye-opener, too, that my little boy is almost grown up. And since I promised him last year that I would allow him the privileges and honors accorded to those who are grown-up, I guess I will have to actually come through with them. It’s giving me something to do, anyway, trying to figure out what will have to change, the things he’ll need, the way to afford it all. We’re already running into a silly problem from my husband buying himself a truck– our old car, which is pretty much destroyed from overuse in the years he had to commute from Florida to Texas on weekends, is now parked along the curb. There’s no room in the garage for it and no room in the driveway. So how are we going to fit a truck for the Bear and a car for the Viking? Will we have to wage war against the neighbors for parking space?

It’s the kind of summer that makes me regret how quickly his childhood passed. I meant to do so much more with him, I wanted it to be a better kind of childhood. And it’s given me the impetus, finally, to start working to make the childhood of his little brothers somewhat better. We’ve begun doing things we sorely needed to do– exercising, for example– mostly because I can feel their lives speeding along the same track that took their older brother so quickly from my inseparable little toddler to this new separate man.

There’s still a little time left, though. Two years, years we can spend, I hope, more time together. I hope there’s time to breach some of those walls we’ve spent the past couple of years in building up. Boys have to pull away from their mothers in order to find themselves as men. But men, I think, can afford to watch goofy movies with their moms on a Saturday night every once in a while. Because they know, too, that everything goes too fast, and sometimes you just have to slow down and sniff the buttered popcorn.

Driven

I kind of hate July, if I’m going to be honest. It’s never a good month for me.

Spent an hour and a half in a clinic this morning, getting a scrip for antibiotics for the Adorable Baby, who has an ear infection yet again. The stress of that has kind of knocked me out for the day. But I did want to make a Wednesday update, so here, in honor of the crappy month of July that drives me mad, are a few songs.

Drive . . . Incubus.

Drive . . . The Cars.

Drive . . . R.E.M.

Happy Independence Day!

It’s been a rough week here and today doesn’t promise to be much better (stomach virus, which the kids also have gotten, whee!) but it’s the Fourth of July so I figured I’d let everyone know that I am NOT dead yet.

Independence is kind of a big thing for me, given that I even used it for one of my kids’ middle names. (You can have fun guessing which.) It’s been really fun and interesting to do our homeschooling history lessons about the Revolutionary War and the things that happened because of it. Like our Declaration, the Constitution, etc. Things that maybe we don’t appreciate enough these days.

I wish everyone a safe and happy Fourth! Keep the bottle rockets out of the kids’ hands once they’re lit and don’t let them smack anyone in the eye with a lit marshmallow. God bless us and our nation, and thank you especially to all the soldiers, sailors, Marines, and airmen who have served our country in all of her various times of struggle.