Autism Spectrum Quote

The eyes are the windows of the soul…
SO STOP STARING INTO MY WINDOWS!

Last Night in the Grocery Store

Last night in the grocery store, an employee stopped me. He said he didn't know if I remembered him, but when I was in the store with GL, last week, he'd said hi.

"Oh, yes, you're Colin. He's been talking all week about how his buddy said hi at the grocery store."

"Well, I didn't have time to stop and talk then, but I wanted to tell you how much I enjoyed working with GL when I volunteered in the Special Ed classroom. I'm leaving for college next week, majoring in business, but I almost changed my major to Special Ed because of him."

I told him that I'd been worried about sending GL to high school, wondering if he'd have any friends. "But he has so many friends, the best part of high school turned out to be that all over town, wherever he goes, he's always running into his buddies from school."

"Everybody likes GL." Colin said, "He's a lot of fun. He's such a neat guy."

It was nearly closing time, and the last few shoppers were making their final selections. We chatted another minute or two, I thanked him, and left with a full and happy heart.

Summertime Blues

Summer has historically been a difficult time for GL. With the longer hours of daylight, he has even more trouble sleeping than usual, and it's often in the summer that his meds become less effective or stop working altogether.

This summer, he has been getting up in the night, usually for an hour or more at a time, and often multiple times in the night. Then he's up by 5:30 am, (some days as early as 4:00) wanting help, attention, or company, and frustrated that we aren't up and ready to start the day. During the day, he has that tired look in his eyes, not to mention dark circles, and is irritable and demanding. By 3:00 pm, he is screaming and pounding on the walls. He continues screaming and pounding on and off until bedtime, and often until his bedtime meds knock him out. Some days, he starts the screaming and pounding at 2:00 pm or noon, and some days, it starts first thing in the morning, and continues all. day. long.

I try to keep it real here, the good and the bad. While he's had plenty of better times, we have also seen much worse. Some people think I should focus on the positive, and if I'm having a bad day / week / month, shut up, I guess. I see both optimism and pessimism as dishonest. If people come here to give or receive moral support, pretending everything is always fun, or even always okay, is not helping. So I feel like I should blog more. I've had things to blog about, good things, bad things, even a remarkable number of funny things have happened. But I'm tired, I have a seemingly never-ending to-do list, and most days, blogging just feels like one more thing.

I walk into the bathroom and stand in front of the toilet. GL follows me into the bathroom, watches me unzip, and says, "Hi, Dad. What are you doing?"

Happy Good Friday!

Every year on Good Friday, one of my favorite bloggers reruns the same Good Friday piece. It bears repeating well: Happy Good Friday!

Medication

To a mother who is facing some of the same things:

When GL's meds are working, he is his quirky but lovable self. People who have only seen him at these times have a hard time believing what his behavior is like when they're not working. Even when his meds aren't working, he can sometimes hold it together for brief periods in public. It's at home that all hell breaks loose. Some people have a hard time a hard time believing he needs meds. Those who are by temperament opposed to medicating children "on principle" have never lived with GL unmedicated. Until they have lived with (not just "worked with" where they get to go home at night) long-term (years, not months) a child who truly needs psychotropic medication, both when he is medicated properly and when he is unmedicated, they have no idea what they're talking about. When GL is not properly medicated, no amount of talk therapy, affection, training, discipline, reasoning, dietary intervention, PT, OT, chiropractic, supplements, or any of the other things that have been suggested make the least bit of difference.

And even when his meds are working, he tells outlandish stories. Sometimes he is exaggerating. Sometimes he just makes stuff up. Some stories are plausible. Others are wildly improbable, but not impossible. Others are not remotely possible. Still others are so bizarre as to be largely unintelligible. He is completely unable to see the distinction. On rare occasions, he has admitted to exaggerating, but the more times he repeats a story the more he believes it. Once he decides it's true, no amount or kind of evidence can convince him otherwise. He will just keep repeating the story, which in his mind, makes it more true. It's best to drop the subject. Arguing will only encourage him to perseverate on it.

We have seen this pattern again and again. Here's what happens with GL. We find a med that works. He gradually begins metabolizing it out of his system faster, and needs an increased dose.  He adapts to that dose, and we have to increase it again. (This is assuming he hasn't grown or put on weight. If he has a growth spurt, it accelerates the process.) Eventually, it stops having any effect at any dose, and we have to find him a new med. For more details, look up tachyphylaxis.

He has burned though a new med in as little as six months (not counting the meds that only worked for a few days, or not at all) . Until Trazodone, the longest any med worked for him was 18 months. I'm expecting Trazodone to stop working any time. When his meds aren't working, nothing else makes a damn bit of difference. We had one psychiatrist who wouldn't do anything but increase his dose, even when it obviously wasn't working. He was up to 100 mg of Seroquel 3 times a day, plus another 500 mg at bedtime, and it had no effect. (I knew a 230 lb. man with violence, aggression, and sleep issues. 100 mg of Seroquel would knock him out for the night. GL was 12 years old, and less than 90 lb.)

It took four months to find another psychiatrist who would take GL's insurance. Every day for four months straight, he physically attacked every member of the family, slammed the door hard enough that he broke off the doorjamb and punched out the doorknob, tore pictures off the walls, emptied bookshelves, threw things, pounded on walls, and attempted to break windows. We had to hold him down. He was sleeping less than 4 hours a night, and he wanted company. He would pull our eyelids open to wake us up. We had to put a lock on the basement door because he was trashing the basement every night. He kept screaming, "I'm going to kill you!" Now GL sometimes uses words he doesn't understand if he knows they get a reaction, so one day, between storms, Mama Bear asked him what he meant. He said, "I will put a string around your neck, and you will stop breathing, and you will be dead." When your 12 yos tells you every day for four months, "I'm going to kill you!" and means it, it has a way of wearing on a person.

I tell you all this not to worry you or minimize your son's troubles, but to say, I know. I understand. When you are in the middle of a medication not working, it feels like it is your fault. If only you had more strength, endurance, love, more whatever. You would do the right thing, no matter how hard, if only you knew what it was.  (We call it being "under siege" because it takes over our lives, and it takes all we can do to survive. Nothing improves until reinforcements arrive, and we have no way of knowing when that will be.) It's not your fault. You've seen what he can do when his meds are working, and you haven't changed what you're doing.

We had to fire GL's psychiatrist who wouldn't try a new med. I know, easy to fire, but hard to replace.  But when we found a new doctor, he said getting GL to sleep at night was his first priority, because no one can function long-term on so little sleep.  He started him gradually on a new med (when the old doc did make changes, they were always cold turkey) and within a week, he was sleeping 6-8 hours a night. With the additional sleep, we were able to function better. He continued the gradual increase until we found a dose where GL would sleep through the night, keep his aggression in check, and still function during the day. Then he began tapering off the Seroquel.

Because GL has his ups and downs from day to day, and his behavior deteriorates over weeks or months, it is hard to recognize a medication issue at first. But when the bad days get worse, the good days become rarer, and then disappear altogether, the weeks drag on, and it begins to feel like locking one of us up would be an improvement, I don't care if it's him or me, I know we need to look at his medication. It doesn't always get this bad; I'm getting better at recognizing it in the early stages, but it does sneak up on you, and it does take time, and sometimes trying several meds, to find one that works.

In September, GL started public school for the first time. (Before that we'd homeschooled.) We warned his IEP team about his behaviors. We tried to paint a worst-case scenario, because we feared they would be unprepared for his behaviors and send him home. They assured us that they were confident they could handle anything he might do. We figured, this being the Special Ed department, he couldn't be the first student they'd had with these issues.

Because he has a hard time with functioning in a group, new environments, sensory stimuli, and changes to his routine, we insisted on starting him with one class period, and adding other periods one at a time. Since his school divides the day into four periods, we expected he would have a full school day by Christmas. For the first two months, school went beautifully. He was on his best behavior at school. His teacher and classroom aides seemed to imagine that we had exaggerated his behavior problems. At home, it was a different story. He was grouchy but tolerable during the week, but weekends we were under siege. We more or less expected this. In any new situation, he is on his best behavior at first. He does his best to hold it together as long as he can. This is stressful for him. At home, where he can let his hair down, it all comes out. He doesn't usually melt down around people he knows until he feels really comfortable with them.

After a month, we added a class period. After two months, we had decided to add a third period. Before an official change could be made to his schedule, he began yelling at people at school, kicking lockers in the hallway, and hitting other students. The school balked. They would not add another period. They said they didn't have a plan for these behaviors, they didn't have the staff to deal with them, and they couldn't have them at school. They seemed to expect us to fix his behavior without their help, and may have been looking for ways to get him off their hands entirely. Um, we don't have a little remote control at home that we can use to control his behavior at school. We warned you about his behaviors; it's your job to come up with a plan. He has a right to a free, appropriate public education, and having autism does not take away that right. A half day does not fulfill your obligation. We started him with a partial day to make it easier for him to adjust, not to make your job easier. He is as adjusted as he's going to get. If you need more staff, that's your responsibility; we can't hire them. And did I mention that since the school provides all his therapies, his insurance has cut them off, but because he's not in school those periods, he doesn't get them?

We were working on the only part of the problem we had control over: adjusting his meds. Since his behaviors started coming out at school, he stopped hitting people at home. His psychiatrist agreed: He said we should not have to choose between GL hitting people at school and hitting people at home. We spent November and most of December trying different meds at different doses. Some worked better than others. On one med, he was hitting people at home and at school. The week before Christmas, he started Abilify. We saw some improvement immediately. Once we found the right dose, the siege was over. He's been back to school three weeks now, and late last week, his teacher commented that his behavior had improved markedly, and we might be able to add another period soon. We still have a long way to go to get him everything he needs from the school, but at least now we are headed in the right direction.

More Wild Stories

Goldilocks continues to tell outlandish stories, with no idea what people will believe, much less what would happen if they did. Given the wild stories he tells about school, I shudder to think what he tells the people at school about home. I hope they have the sense to be skeptical.

Before school this morning, according to GL, his little brother had already stabbed him multiple times with a knife and cut all his fingers off. I passed this story on to an aide when I dropped him off. Let them get used to taking his stories with a grain of salt. Or a shovelful. As he insisted the other day, "All of my lies are true!"

Goldilocks Relaxes after a Rough Day at School

It's A&W, people!

I Can Do It Myself!

I've recommended autismherd before, but  this post is especially good. So often, we do things for our kids just because it's less messy or easier. That's why I make GL take out the trash.  When I told one of the professionals who work with him about his taking out the trash, she commented that verbal prompts are the hardest to fade, so I transitioned him to a written checklist, with each step listed as a one-word instruction. He made the transition well, and began to acquire the skill of working from a written checklist.

Although I try not to, I do fall into the pattern of helping him with tasks he could do himself, at least for certain tasks. For example, one of the few foods he eats is peanut butter and jelly sandwiches, but he wouldn't eat the crusts. He was a bit messy. He could make his own sandwiches; he just couldn't cut the crusts off. He would take a few bites out of the middle of the sandwich and throw the rest away. Yes, it was every bit as messy as it sounds. If I asked him to pull off the crusts, he pulled off and threw away more than he ate. For a while, I made sandwiches for him. It was less messy, but I seemed to spend all day making sandwiches. If there were a sandwich-making machine, I would have bought it. Then I tried cutting off the crusts for him, and having him make his own sandwiches. That worked. After a couple of years, I got tired of cutting off his crusts. One day, I asked him if he could try eating a sandwich with the crusts on. Apparently he was ready. He tried it, and has been making his own sandwiches ever since. But there is a fossilized layer of peanut butter and jelly on every surface he touches.

Summertime

Nine o'clock in the morning, and it's already hotter than the predicted high for today. Accuweather, indeed!

Do you ever wonder how you could help parents of special-needs kids?

Here's the one best thing you could possibly do: http://www.livinglifewithasideofautism.com/2011/03/quiet-place.html.

The Dive Bar Welcomes: _______

Jillsmo at Yeah. Good Times has an occasional feature called The Dive Bar where people can send her things they'd like posted, but don't want to post to their own blogs for one reason or another. Today's post hit close to home:

Tuesday, March 1, 2011

The Dive Bar Welcomes: _______

I figured rather than saying "Anonymous," I'd be a little more creative. 

Autism is kicking my ass.

Because I hate how relieved I am when the bus shows up in the morning.

Because I hate that my heart starts beating faster when it returns in the afternoon.

Because every day is like walking through a mine field lately.

Because every day I hold my breath, waiting to see if my child will be breaking things or barely holding them together.

Because nothing is helping any more, not one fucking thing.

Because no one is interested in helping anymore either, autism like this isn't so cute.

Because we have been doing this for years and beat to a pulp.

Because we have tried diets and supplements and tested pee and mailed shit samples and been on ever psychiatric medication under the sun and nothing.

Because I always scoffed at those people who let their children go to an inpatient facility.

Because I always thought that would not be us.

Because now, I am painfully, painfully aware of where those people are.

Because now, that desperation and that feeling that autism has taken far too much control and you just can't let it take anymore, that feeling sucks.

Did I say autism is kicking my ass? I take that back. 

It's not just kicking mine, it's trying to knock down my child and for once, I'm out of moves to fight back.

Reprinted with permission from: http://yeahgoodtimes.blogspot.com/2011/03/dive-bar-welcomes.html

 I've been there. For months at a time. Whenever GL's meds stop working. And during those times, we don't know when they'll end, or even if they'll end. Neither does his psychiatrist. I'm not being pessimistic here; anything more optimistic would be lying. We try one med after another, and nothing helps. Some meds make things worse, even though worse seemed inconceivable. Every time so far, we eventually found a med that helped. Things would improve for several months. Then they'd start to decline again, and we'd have to increase his dose. Eventually, the new med wouldn't work at any dose. It's called tachyphylaxis. For GL, it typically takes about a year, but it has been as long as 18 months, and as short as 6. Every time so far, his psychiatrist has been able to find a replacement that works. There's no guarantee that will continue.

Why don’t you just… ?

Sarah at Kitaiska Sandwich raised some interesting points in this post, but a couple of paragraphs really jumped out at me:

Special-needs parents get a lot of advice from therapists, teachers, and other professionals. There is a difference between advice about how to address a particular, narrowly defined problem (which is part of your job), and general parenting advice (which is not). And the difference matters. You may be an expert in your field. And your field may be child psychology, or speech pathology, or pediatrics, or early childhood education. And I may come to you for advice in the field in which you are qualified. But I’m no more interested in your opinions about being a parent than I am in my veterinarian’s opinion about mutual funds.

I will admit that I feel differently about advice from other parents of kids with disabilities, mental illness, or other special needs. But I have also noticed that few of them are offering unsolicited advice. Probably because they’ve been on the receiving end of so much of it that, like me, they are very aware of how that kind of advice is usually received.

Pinky, We're Going to Take Over the World!

Today's post is reprinted with permission from Boarding in Bedlam. I tried to find the original comment Arby quoted, but decided I had better things to do. I assume it's buried somewhere in the 777 (and counting) comments.

Arby is a stay-at-home, homeschooling, father of General Mayhem, Major Havoc, and Captain Chaos. He is happily married to The Boss. They live in Apathy, Kansas, with The Big Fuzzy Dog, several chickens, a few fish, and Reggie the Rent-a-Dog.


Tuesday, February 22, 2011
Pinky, We're Going to Take Over the World!
Well, it’s almost time to begin the new day. In a few minutes I will gather my hand-picked students, chosen for their unique gifts and abilities, and start them on their daily lessons. That is the position of Tracy, a teacher writing on a Wall Street Journal community forum. In her post, Tracy wrote:

Homeschooling - I have no problem with homeschooling, but please don't compare that with my job. There are VERY FEW similarities. If I had only 3-4 self-selected students to educate in the comfort of my own home with any bathroom/food/physical activity/food break and could set my own hours and discipline appropriately, etc. etc. etc ------ I could get even better results than those parents. If you don't believe me, then please fund that study and I will be happy to participate. I will even take 10 students.

She discovered our secret. Homeschoolers self-select only the best students. This self-selection process skews the results of home education unnaturally higher than those of our public school counter-parts. Tracy is such an incredibly talented teacher that if she would do the same, her homeschooling performance would be better than the rest of us teacher-wannabes. I’m stepping up today to raise my hand and admit, “Guilty as charged!”

I self-selected only the best students for my homeschool. I did not simply accept the children that God gave me. I self-selected a girl with a congenital heart defect. She’s a stroke victim with learning delays that caused us to hold her back one year in school to better prepare her to complete the first grade. It gave us time to help her gain the ability to hold and manipulate a pencil. Nothing screams “academic success” like repeating kindergarten! I self-selected OCD Boy. He’s the child that must ask the same question three times in a row before hesitantly accepting the same answer given three times in a row and gingerly moving forward through his exercises. If he had his way, I would be holding his hand through every question on every task that he completes. His ability is high. His self-confidence is low. I even self-selected Walter Mitty, my teenager whose hold on reality is tenuous on his best days. I wanted him to possess a genuine talent for mathematics coupled with a genuine loathing for the subject that allows him to stretch even the simplest math assignment into a five hour marathon.

I’m a bit of a sadist that way.

I’m fairly certain that if I asked my homeschooling friend Daniel, he’d admit that he self-selected autism for his oldest boy. Teaching a non-autistic child would be so…mundane. I’m quite certain that most of the thousands of the parents who homeschool their special needs children would agree. And those homeschooling parents who chose “normal” students? Selfish bastards. All of ‘em. They could have self-selected special needs children, but nope, they opted for normal. And we all know that normal homeschooling children never act up, disobey, sass, fail to complete their work, fail subjects, miss deadlines, lose assignments, daydream, lollygag or repeatedly make the same mistake that their parent-teachers have explained to them over and over and over again until they are banging their heads on the refrigerator in frustration. It never happens because those traits have been self-selected out of normal homeschooled children.

It’s time to let the world in on a little secret. Homeschoolers hold all the secrets to manipulating DNA in order to produce only the best possible students.

Pinky, we’re going to take over the world!

Or maybe…just possibly…Tracy has no idea what she is writing about.
Posted by Arby at 10:15 AM

http://boardinginbedlam.blogspot.com/2011/02/pinky-were-going-to-take-over-world.html

Papa Bear said...

I thought you must have a hidden camera in my house. Did I mention that, along with autism, GL has OCD? And after he asks the same question 20 times, I ask, "What did I say?" He repeats my answer verbatim, then asks the same question again.

And your "Walter Mitty" describes BB to a T!

I must have forgotten to fill out the girl with a heart condition page. Either that, or they're so popular, they're backordered. I seem to remember requesting twelve little blessings who were all candidates for Mensa, Mr. / Miss Congeniality, Most Diligent, Most Likely to Succeed, and sainthood. Ability to run a 4 minute mile while still in high school optional. Instead, I got my kids. I wouldn't trade them.

So it's not just my kid...

http://lifeasthemotherof4.blogspot.com/2011/02/friday.html

Teens and Underwear

Big Daddy Autism posted recently about his autistic son's discovery about teens and underwear. Maybe Griff can convince Goldilocks of this. He doesn't change his until someone forces him, no matter how long he's been wearing them. GL has apparently been observing other teenagers lately, because he has been wearing his pants low enough to show his underpants. But he usually has his hand in them at the time. Now he was never embarrassed about walking around with his hand in his pants, and no reason could convince him to remove his hand from his pants, and he is not embarrassed about showing his underwear. But he is embarrassed when he learns that someone has noticed his underwear is showing. So far, "I see London, I see France..." works to get him to hide his unders. He's in such a hurry to cover them, he usually pulls his hand out, too.

Coming Soon! and the Horrible Holidays

GL loves to go to the library and check out DVDs. He asks to go every day. Since it's only two blocks away, I usually take him. I don't trust him to cross the street by himself. I also don't trust him in the library by himself. Of course, he checks out his favorite movies over and over, but his favorite parts are the commercials and the bonus features. He'll frequently tell us about this or that movie that's "Coming too soon on video and DDD!"

The library was closed Christmas Eve, Christmas Day, and Sunday. As jillsmo says, Yeah. Good Times. Meltdowns every day. Mama Bear had Christmas Eve off. In exchange, she had to work Christmas Day. I don't remember much about what we did during each day, but it revolved around trying to calm GL. You know how some Catholics / Lutherans / Baptists / whatever only attend church on Easter Sunday and Christmas Eve?  Since GL's diagnosis,   I've become sort of a reverse Catholic. Those are the two times I don't go. He doesn't handle crowds well, and I'm not too keen on them, myself. Brother Bear had asked if he could be in the Christmas program this year, so Mama Bear agreed to take him.

We went to church as a family Christmas Day. Although it's one of the holiest days of the church year, our church and many others don't hold services on Christmas Day. Some get around it by having midnight Mass, so it's technically Christmas Day by the time it's over. But ours has it's Christmas Eve service at 5:00 p.m. so everyone can get their kids to bed on time. So one day a year, we are Lutheran. Actually, I was confirmed Lutheran a few years back, when I had to work every Sunday and they were the only church in town that had a service at a time I could attend. The pastor still recognized me when we walked in the door, remembered my name, where we live, and what kind of car we drive. It's a small town.

Mama Bear went to work that afternoon, and the rest of the day was quiet. Well, as quiet as it ever gets around here. I had a project I wanted to work on in the basement, but every time I went downstairs, the boys would fight. I don't remember why I couldn't bring BB down with me, but the basement is where we keep everything that GL might hurt or that might hurt him. We keep the door locked, because we don't trust him in the basement.

We had planned to go to church Sunday, but MB had worked an overnight, and was too tired, and I didn't feel up to taking GL to church by myself. So the boys continued to fight, and MB tried to sleep. We had a family gathering Sunday afternoon because that was the compromise worked out with the various in-laws and out-laws. We gave GL his extra med and headed to my parents' house. When we arrived, he immediately began yelling at Nana that he wanted to watch PBS Kids on her computer. Her computer was down. He started banging on the windows, saying he was going to break them. She took him for a walk outside, and he calmed down a bit. Whenever he started getting worked up, someone would take him for a walk, and he'd calm down for a while. We managed to visit for about two hours, including dinner. By then, he was yelling, pounding on windows, and trying to hit people, and there was no calming him. He needed to go home, but he didn't want to leave. He wouldn't go out to the car, he wouldn't put on his shoes, and he wouldn't let me put them on. I thought my brother, the firefighter, would have to carry him out, but at the last minute, he decided to walk out to the car in his sock feet. He raged all the way home, and didn't calm down until bedtime. He's been getting up between two and six most mornings lately, and waking people up for company. He was up at three a.m. one morning last week. He turned on the lights and started yelling at his brother to get up and play with him. This morning, he slept until 9:20. I let him.

Today we went to the library for DVDs. GL followed his usual routine. As he walked in the door, he shouted, "Hey, librarian, do I have anything in? You check, and I'll be in the DVD section, looking for DVDs!" He dropped his DVDs on the counter, and ran back to the kids' DVDs. As we were checking out, I commented that we survived three days without the library. The librarian smiled. She knows we're doing the best that we can. But she couldn't resist adding, "I had three days without the library, and I liked it just fine!"

GL answered, loudly as always, "On Christmas, I yelled at my grandmother, and I had to go home."

I hate holidays. They bring out the worst in people, especially GL, because they disrupt his routine. We have worked very hard to make our celebrations low-key, but they are still often more than he can handle. It's fine if other people want to take the day off, but why do we have to?

Good to Know

Goldilocks' meltdowns have been increasing in frequency, intensity, and duration over the last couple months. Once St. Nicholas Day was over, he found other things to yell about. Or nothing in particular, just yelling angry nonsense. We are working with his doctor, adjusting his meds, trying to find a combination that keeps his behavior under control. I know some people are anti-medication, but when we've done every available therapy, and tracked down and accommodated every sensory and social issue we can, and he's still screaming, hitting people, pounding on the walls, tearing down pictures, and attempting to break windows for hours at a stretch, all for no discernible reason, and this happens four to five days a week, we turn to medication. Without it, someone would have been locked up a long time ago.

We missed church yesterday because of bad weather. It turned out not to be quite as bad as we were expecting, but the National Weather Service was still advising people to travel only in an emergency. We decided that going to church was not an emergency, but if the weather got worse, and we were stuck there or on the way home, we would have an emergency. Today he was not yelling; He was just being annoying. Asking repetitive questions. Making unreasonable demands. No matter what you offered him, he upped the ante. I decided to take him and run a few errands. He gets the go bug, especially when we can't or won't take him anywhere for a day or two. Sometimes just going someplace helps. So I took him. We even stopped for 7Up and doughnuts, which made this an official "adventure" in his book.

Later, Mama Bear had some errands, including a doctor appointment for the Sinus Infection That Will Not Die, so I was home with GL. He suddenly decided that he was finished with all his library DVDs, and I was going to take him to the library to get some more RIGHT NOW! I explained that I had to do a few other things first, including checking to see which things needed to be returned to the library and waiting for Mama Bear to come back with the car. He was back every five minutes, nagging. I was gathering the library materials when MB arrived. I apprised her of the situation. As GL and I headed out the door, Mama Bear said, "You're a better man than I am, Papa Bear." Thanks, Mama Bear. That's good to know.

The Good, the Bad, and the Truth

I linked this article because I think it demonstrates an important truth: optimists don't have a monopoly on inspiration. Put another way, pessimism and inspiration are not mutually exclusive. I began composing a reply, but I was interrupted interrupted by my son screaming, pounding on the walls, and tearing down pictures. Why? Because he suddenly decided he needed an "adventure" by which he means someone getting in the car with him, taking him someplace, and buying him some food. (And no, this wasn't about hunger. He'd just eaten half a pizza.) No one would drop everything immediately and do that for him just because he demanded it, so he started his screaming and wall-pounding. This was not a meltdown. A meltdown is much worse. When I said no, he began alternately threatening to keep pounding on the walls until I took him on an adventure, and briefly stopping his pounding to demand an adventure as a reward for stopping. I told him that no means no, and I will not respond to manipulative behavior. That meant we had no choice but to ride it out. So we did.

That's life around here. I tell it like it is. When something good happens, I celebrate. I don't mope around whining about my miserable life as the father of a boy with autism. When things are hard, I don't put on a counterfeit plastic smile and spew some saccharine platitudes about the glass being half full when it's darn near empty. I'm 100% real 100% of the time. Some people can't handle that, but at least I know they're rejecting the real me, not some synthetic version of me manufactured to please the public and failing to.

Have you noticed how a sanitized, Disneyfied version of a great story, whether a true story or a classic work of fiction, is never as satisfying as the original? Tame the fear and the sadness, and you tame the joy as well. I have no choice but to face anger, fear, and sadness untamed. I intend to embrace wild joy. That's what I like about Understanding My Son, Kicking Kittens, Life is a Spectrum, Big Daddy Autism, Both Hands and a Flashlight, On the Spectrum, Autism Herd, etc. The laughter is sweeter and the tears more poignant because they are real. I'd rather have real sadness than fake happiness. I will not allow other people, nor other parents, nor even other autism parents tell me how to interpret and experience my life in their funhouse mirror. It is what it is.

A few months ago, I visited an online homeschooling forum. Several moms were--let's call a manually-operated digging implement a spade--bitching. And there's no bitching I find quite so irritating as euphemism-clad Christian bitching. So what were they bitching "sharing" about? It seems that each mom had at least one kid (usually a daughter) who was a pessimist or, at the very least, whose optimism wasn't up to snuff. Here's the deal-breaker: they were not content to demand an honest assessment of events from that child; they demanded that she put a positive spin on everything. They were going to train this pessimism right out of her and make her a bleeding optimist! Their methods ranged from the absurd to the cruel. Have you ever felt the urge to do the impossible, reach through the computer screen and slap someone? If a positive attitude were so good and powerful and holy, and a negative attitude so rotten and weak and reprobate, how did they expect their negative attitudes and actions to inspire optimism? I immediately began composing a rebuttal in the form of a satire, titled "Optimism is a Serious Character Flaw." I wasn't foolish enough to send it. In fact, I never finished it, though I might one of these days.

Yes, we all have our good days and bad days. Yes, we all have moments when we tend toward excessive pessimism and others when we tend toward foolish optimism. If you choose not to talk about one or the other, you have the right to remain silent. But when you tell someone else they have no right to speak the truth because it makes you uncomfortable, and especially when, by speaking, that person inspires another to take righteous action, you can just go where liars go. I refer, of course, to Washington.

Coming Soon: Autism Parents: Two Camps, and Why I Don't Fit in Either One.