melting in december

Did you ever really really really want something to happen, and when it doesn't happen, you go outside and crouch down in the rain and yell "aaah!"over and over and over? Or maybe you stand in your room and face the wall and scream for an hour and a half? I haven't done this, though many times I have wanted to do this. Truman does this, and while it's not fun for him or for any person in the house, I sometimes kind of wish I could pull it off, and with his aplomb.

It's the holidays, so we're already all running a little thin around here - in money, in time, in patience. But then we oh-so-carelessly decided to remodel a bathroom and replace our kitchen floor in the midst of all of this, which means the house is turned on one side one week (we were all squeezing into a spare shower that is smaller than a very tiny telephone booth. Jim says that to soap yourself you put soap on the walls and rub yourself on them), then it's flipped on the other side the next, with the refrigerator in the living room and pizza for dinner for 3 days and the sound of an air compressor, nail gun and classic rock station in the house where you live and attempt to work all day long. And there's a cold - a tiny little thing that's not even much to sneeze at (har har) that just seems to meander aimlessly from one of us to another that just makes you feel a little thinner on your already thin holiday stamina. Plus, put a guy with autism who doesn't do change or transitions very well under those conditions, and it'll make everyone grit their teeth just a touch. ("I don't want to get in that tiny shower! No! Noooo!" is immediately followed by "I don't want to get out of the tiny shower yet. No! Noooo!") Plus, it's 70 degrees and tough to find Christmas spirit, even if there wasn't a refrigerator in the living room.

Opening up the box that is the holidays when you have a kid with autism, is kind of like hanging out with Clark Griswold in his greatest manic moments of hope for all the lights on the house. He wants to do everything all at once, this very minute or he's going to DIE. He wants to eat candy canes while drinking hot chocolate out of a Pac Man mug that he once saw on eBay while watching Polar Express in 3D and constantly poking the frog that croaks "Jingle Bells" when you squeeze it (thanks, Nana) and reading the Santa Claus book with the Spongebob Christmas tree hat on his head. Did I mention that he's one of those that likes stimulation?

Then, he found the newest Spongebob Christmas special that came on Nickelodeon last week, and life around here got the shiny lacquer finish of chaos that I suppose was missing, though we didn't realize it. I oh-so-innocently DVRd the show, thinking that he'd be interested in it. But Aspergergians aren't known for their ability to moderate the depth of their interests, so not only was he interested, but immediately became obsessed. The whole family has been made to sit down together and watch it several times. He has watched it alone and sung along. If someone new came into the house, they had to watch it. I don't know if you have ever watched any Spongebob, but one time around will do it for you. A fridge in the living room is a pittance of annoyance compared to hearing Spongebob sing "Don't be a Jerk, It's Christmas" for the umpteenth time.

We put a limit on the number of times a day we could tolerate it. But he had found the DVD of this show at the grocery about a month ago, remembered its precise location, and had to have it so that he didn't have to watch it right in the middle of the fridge-laden living room on the DVR, but could quietly watch it in the privacy of his own room without all the judgment from the rest of the family. In a move that, looking back, is the pivotal moment of the weekend, I made an innocent trip to that grocery and forgot to pick up the DVD.

I don't want to go through what happened next after this, but you can sum it up by saying that it began small, but grew into a scene to rival the Hindenburg footage. Oh, the humanity! The fallout took up more mental, emotional, and sometimes physical space than a fridge in a living room. But somewhere in there, typical of his atypical-ness, we were able to get a toehold and break the loop he was stuck in, and we all pulled out of what has come to be known as "The Spongebob Christmas Special Incident." We're all still recovering from it.

Now we're more like a band of war comrades. We stormed the beaches of Normandy and lived to tell about it, so we hug a little tighter and slip each other - even Truman - a little skin for surviving. About 2:30am yesterday morning I woke up to find him standing beside my bed. This is not unusual, because he tends to get up that early quite a bit, and really wants everyone in the house to know about it. I don't mind getting up early, but even that's a little early for me, so I just turned over to go back to sleep figuring that if he really needed something, he'd tell me. Or continually poke me in the back and say my name louder and louder until I got up. But I was able to go back to sleep. And I woke up 2 hours later to find that he'd gone back to his room. When I got out of bed, I found this:

Which makes it kind of worth it. Or at least tolerable. Or at least not as fridge-in-the-living-room stressful.

God bless us, every one. And for the love of all that's holy, help us make it through December.

Truman Self Portrait

interviewed

We've hit the big time, people.

Maeve and I were interviewed for a school project by a middle schooler from Meigs! Her class is talking about people with special needs, and she chose Asperger's to research a little further. What follows are the questions she sent to us and our answers.

Q: What is it like to have a brother with Asperger’s? 

Maeve: It's a lot different than having a normal brother, I think. He takes everything literally and seriously. He's very intense and has strong reactions sometimes when you don't expect it. Sometimes I feel angry about him. Sometimes I'm embarrassed by him. Sometimes I feel protective of him. He's my brother, of course I love him, but sometimes he can be really hard to be around.

Q: Can you name a few things that Truman does differently than you do? 

Maeve: He can't take no for an answer. He doesn't have as many friends as I do, and he doesn't act the same with his friends. He doesn't understand sarcasm or jokes. He gets very hooked on to something and stays with it very intensely until he finds another thing to get hooked on very intensely. I like people, he doesn't very much, except for my mom and dad and me.

Q: Does he have need to have a daily routine? 

Me: Absolutely! Just like we all feel a little nicer when we have a good schedule of things in place to expect, he does, too. But it's different for him in that it makes him feel very secure. Anxiety is something that people with autism deal with all the time because the world is so much more confusing and sensorally overloading to them. I have found that if he DOESN'T have a routine, that it's fun for just a little bit, but then he just melts down. It's like it's just too much to take in at once.

Q: What are the differences between being a parent to a child with Asperger’s and one without? 

Me: You know, I've never really thought about it! I don't think that it's probably much different than parenting two very different children. They both have easy areas and more challenging areas. I know that Maeve will get dressed and do everything that she's supposed to do in the morning without a reminder. I know that I can't leave Truman alone for a second or he'll still be sitting in the same spot when I come back. I know that I can send Maeve out in the neighborhood alone to play with friends and that she knows how to navigate the spoken and unspoken social rules that people have, would know how to deal with a stranger, and that she'll keep track of time and come home when told. But the times that Truman has gone out into the neighborhood without us, he always ends up running home in tears because he just doesn't understand how the interaction between kids works. It takes one of us going out with him to kind of show him what to do. On the other hand, I can hand Truman a credit card and he will go to RedBox in the grocery, use it and bring it right back to me. Or I can give it to him to buy Wii points and he'll do precisely the amount we agreed upon and give it right back. He's completely and utterly trustworthy in that sense, where I would never in a million years trust Maeve with a credit card yet! He might dart out into traffic because he doesn't think about cars or danger or think ahead very often. Maeve never would. It's a very mixed bag!

Q: Does Truman have trouble talking to people? 

Me: It really just depends on the person and the topic. He's definitely not shy, but he doesn't like to talk about things that aren't completely black and white. Video games, computers... those are simple, concrete subjects. If you asked him why he's upset, you might not get any answerl, and in fact he might not talk to you at all. If he doesn't want to answer your questions (and he doesn't like to answer personal questions because usually people talk about such personal things and that don't make a lot of sense to him) he just says, “I don't know,” which is kind of his way of putting a stop to the conversation. A simple question like “Did you have a good day?” can be emotionally subjective enough that he might not be able to answer. But if you ask him about a video game, he might not STOP talking. He loves to go to Game Stop because he can talk to the adults there like he is their age, and they talk back to him like he's one of them.

Q: Can you tell us a few ways Truman may act different around people? 

Me: The one thing that I find that sets him very much apart is that as I see you all getting older, you get more self-aware and aware of how others perceive you. He doesn't seem to care at all how he is perceived or even aware that he's being perceived. If he's upset, he might stop talking and just go sit in a closet, even if he has friends over. He might completely have a meltdown in the middle of a public place and not be aware that others don't do that kind of thing. He might say really inappropriate things at the wrong time. When he's upset, he flaps his hands and pulls at his hair (it's called “stimming” or “stimulating” - it's a way that autistic people deal with stress to help calm themselves). He doesn't understand the rules of give and take in conversation, so he might not care at all what you have to say but will talk at you like you are just some inanimate object. But he also is very affectionate, and where as you guys get older, I see you not as huggy and touchy as you used to be with the grownups, he'll still snuggle and hug and love as much as he can without being embarrassed. :)

Q: How do his teachers help him learn the best? 

Me: That is a FABULOUS question. He can be a tough guy to understand since he is so smart (one of the hallmarks of Asperger's) and looks very “normal” but can completely fall apart the next second without much warning. He has trouble with fine motor skills, so his teachers let him type or dictate his homework. He has lots of focus and attention problems, so sometimes he requires one-on-one help to get his work completed. His intelligence makes him move quickly through topics and get bored easily, which makes him not want to complete things a lot of times, so we put reward systems in place to teach him to take things a step at a time. Sequencing his thoughts is difficult so sometimes he needs help getting the thoughts from his head to the paper. One of the biggest things they can do is to include him, or really, not exclude him when he's having difficulties. I think that as he is growing, he's becoming more aware of his differences. I'm glad that he doesn't seem too self-conscious about it yet, but I want to keep him from being singled out as much as possible in the classroom for his Asperger's and ADHD behaviors. This year we are really working on teaching him to interact with a partner and to really feel like he's part of a group or a team. And the best thing they can do is to try to understand him as an individual who thinks and reacts differently to the world than we do rather than seeing him as a bundle of problems or symptoms.

back-to-school quirk

We've had sleepless nights, post-school meltdowns, homework hell, and headaches, so I've been waiting patiently for The School Meltdown.

Yesterday we had one, but it turned out to be less of a meltdown and more of a core overheating, kind of like the Pepsi that got spilled on the control board at Three Mile Island before it went into full meltdown. He came home from school with the teary-eyed look and refused to talk to me, though he wanted to sit with me. We've been in this situation often, and it's kind of like the game, Twenty Questions.

"What's wrong?" 

"Mm."

I know he's not going to tell me in words so I start at the bottom of the list.

"Did you get in trouble?" 

Head shake.

"Did someone hurt your feelings?" 

Head shake.

This goes on for a while including me reading a list of emotions until I hit on "confused." He's confused. Good. I can work with this. Now we start on the time of day that it happened. I narrow it to Art class. Adult or kid? Adult. The art teacher? We're making progress now. How did it happen?

How it happened takes an unreasonably long time to unravel, and involves him spelling it out with his fingers, making them into the shapes of the letters. I decipher "mirror writing." Then, "free art time." OK, so from what I can tell he was mirror writing during what was free art time. Sounds reasonable so far. He loves mirror writing. 

"What did you write?"

"Mm."

"Was it inappropriate?"

Vigorous head shake. Of course not. Not he, oh King of Defined Rules.

"Well what was it?"

Through some very tricky fingerspelling guessing, I find out that it was, "YOU NEED A MIRROR TO READ THIS." 

"That's it?"

Head shake. More fingerspelling. More guessing. His work was taken away and he's not sure why. He's confused.  Hell, I'm confused. But finally! We're back at square one and confusion, but now we know the reason.

By the time we got to this point, we were an hour into him being home from school and still had homework to go. I know from experience that unless I puncture his balloon of upset-ness that we are in this for the night, and it's clear that he's still upset. He's got to know the reason his mirror writing free art time work was taken away or we're screwed. And for the love of all that's holy, he's not going to talk or do anything but spell things on his fingers until it's sorted out. I need a break.

I stop to get a drink and look at email and voila, there's already an email from his homeroom teacher. A sub art teacher who was unfamiliar with his quirks took his work away because he wouldn't put away a pencil when she asked several times. According to him (who was speaking by this time) the mirror writing masterpiece was unfinished. He couldn't put the pencil away until he was finished, of course. A semi-meltdown followed at dismissal.

Now, as I say all that and I sound like my kid can do no wrong, know that I know that it's completely reasonable to expect a kid to comply with a request like "put your pencil away." This particular teacher was just unfamiliar with Tru and how he can be. When he first started school, I used to tell teachers that even though you're having a good day/week/month with him now, it can all go to hell any moment for reasons that he will be unable to share with you because he can't vocalize them. And if he can vocalize them, he will probably choose not to talk. And unless you run the maze of figuring it out and can burst the balloon of upset-ness, you run the risk of him taking down the whole class with him. No one ever really believes me until the first time it happens. Sometimes they get it, and understand that he can be really complicated, and other times they think they can barrel on through with classic behavioral "do it or lose it" techniques. Sometimes that will work, but the majority of the time it takes a creative back-door approach. But if you unlock him, he's yours forever.

His current homeroom teacher unlocked a secret love of his the first week of school - tiny pieces of paper. I've talked here before about his adoration of coupons, flyers, circulars, bookmarks, and tabloid newspapers that you get in the little free newsstands. But she entered new creative territory by introducing him to Box Tops. Box Tops are these little coupons that come on different food products. Schools cut them out and collect them, and they receive 10 cents for each one. The catch is that they have to be trimmed precisely in order to count. Truman has his own spot in the room for decompression, and he has been appointed Chief of Box Tops as his decompression activity. He cuts them, he counts them, he collects them. Pizza and other types of coupons have begun to mysteriously come home with him (I'm suspecting there is a direct line from the teachers' inboxes to Truman's desk). God forbid you should touch any of the collection of coupons and flyers in his room that is quickly stacking up at an alarming rate. He has come to love this teacher because she gets this tiny scrap of paper loving quirk of his and in fact, found a use for it. She gets him.

And so at the end of the unraveling of the Mystery of the Mirror Writing yesterday, I realized he was still upset. But he was upset for a reason that makes me very happy. I found out that he was upset that his teacher, the paper scrap giver, might be unhappy or disappointed with him for his semi-meltdown at school. He doesn't care what anyone thinks about him... ever... except for me, when I use my "I'm disappointed" voice on him. That he has let someone new in that he doesn't want to let down is good stuff. And thankfully I could put his mind at ease because in her email to me that I then read to him, she had ended with, "I am extremely proud of him."

The ABCs of ADHD

If you put me in a room with a bunch of families whose kids have autism and ADHD, and gave me the opportunity to ask them what causes more problems for their kid in school or others, I bet more than half would say it's the ADHD. And unfortunately, very often the two go together. Kind of like "it's not the heat, it's the humidity" only with neurological problems.

ADHD is like the cute little kid who won't stop telling where people are hidden in the Hide and Seek game. It's the second scoop of ice cream that falls out of the cone and the bird that got in the house through the window you left open and now won't leave and keeps pooping on your furniture. It's adorable and something that has really wonderful and fun value, but that can be just so damn difficult.

I went to see our psych NP not too long ago (granted, I had PMS), and I spent the majority of my time crying about the lack of understanding about ADHD. If you have a diagnosis like autism or Asperger's, there's a concreteness to it that says "He has a disability, and here is the list of things that you can understand about it." But ADHD is annoying. It's become so common, that many people are skeptical that it exists. Or if they do believe it exists, they immediately jump to what the parents must be doing wrong. It makes life with peers and adults difficult. Hell, I can very easily say that it makes life with his parents difficult, and I'm one of them.

Truman's is severe. Without it, I am fairly certain he would be in college by now. With it, he is a rubber ball of energy, a grabber and a poker, an impulsive hugger, kisser and toucher, a word repeater, a jumper and bouncer, a freaker outter. He has no ability to sit for any amount of time and listen or work. If something is difficult, forget it; he'll never spend time on it. He's very easily bored yet has trouble keeping his attention on one thing for any length of time. His brain moves fast, and he (literally) thinks best on his feet. None of this meshes very well with school, sleepovers, playdates, restaurants, areas of busy traffic, small gatherings (especially in houses with a lot of breakable items), large gatherings (unless they are outdoors and only then if there is no bonfire involved), small spaces, or his sister.

There's medication, which has a stigma these days. It's no picnic and not something that anyone I know would be giving their kid unless they were having a really unmanageable time. It makes our sleepless kid more sleepless, gives him headaches and makes him emotional. But it also keeps him from being completely ostracized by friends and it keeps our household from being so Truman-centric in a not-so-good way.

Then there are the naysayers, and the skeptics, and they have opinions... lots and lots of opinions. I've learned to just live around them and nod politely when they start talking about food additives and vaccines and the Feingold diet that we tried about 50 times already. If it's some kind of cure from a book or a program for "healing,"you can bet your ass we've tried it, and I'm kind of done with it. When someone gives me a definitive answer as to what causes it, I'll be right there with y'all. Until then, I cannot turn the household's diet, routine, or mindset upside down again because somebody like Jenny McCarthy said I wasn't "warrior mom" enough.

But we love him. And I spend lots of time trying to figure out new and improved ways to deal with it so that I can translate that to others who have to spend time with him and manage him. I just wish I had had him when I was 25 and had a hell of a lot more energy.

An Ode to ADHD


A is for Attention of which there is not much;

B is for Blurting unfinished questions' answers and such.

C is for Causes that are as yet unknown;

D is for Diagnosis; it's the most common of the half-grown.

E is for Effort. The extended mental kind can be tough;

F is for Fidgets of which there are more than enough.

G is for Go, and he's always on it;

H is for Hyperactivity, the star of this sonnet.

I is for Inappropriate running that he cannot suppress;

J is for the Joneses who can't keep up with us.

K is for Keeping things consistent and calm;

L is for the Lack of doing both of the above.

M is for the Motor by which he seems driven;

N is for Normal - glad it's never been our ambition.

O is for the Organization that long ago took a hike.

P is for Problems, Prescriptions and Psychs.

Q is for the Quiet we haven't experienced in 9 years.

R is Relationships that can be hard with peers.

S is for Stimulants and Stress and no Sleep.

T is for Task - to stay on it is a leap.

U is for Understanding, the thing he most needs.

V is for Very Small: the percentage of time we probably succeed.

W is for the Wit and the Wisdom - the perks;

X is for XML - he probably knows it already, so take that, mean jerks.

Y is for You who knows his returned affection is not a whim;

But Z is the Zigging and Zagging you'll do to keep up with him.

taking up spectrum space

The Autism Society of Middle Tennessee is such a great organization. They work so very hard to keep the autism community in Nashville together. We have met such great people and do so many fun things as a result of their work.

Yesterday we went to their annual summer family event to Nashville Shores. Now, I'm sure there are lots of kids with autism that like big scary water slides, but I do not have that particular model. Much of our day was spent going up 8 flights of stairs dragging a float to a water slide, and then going back down 8 flights of stairs dragging a float from a water slide. But the good news is that I got a good amount of time to watch Truman have conversations with other spectrum kids. The conversation between the Aspies went something like this: Imagine 4 boys, all magnetically drawn to each other because one of them mentions Angry Birds. The others' ears perk up.

"I don't like Angry Birds."

"Yeah, me neither. It's boring."

"I beat Angry Birds in one day."

"I beat Angry Birds Rio in one hour."

The parents all stand to the side and smile quickly at each other in a knowing way. It's quite cool to watch them interact.

I imagine this same group one day years from now all talking, all unable to look each other in the eye:

"I think there's something else besides the Higgs particle."

"Yeah, me too. The Higgs is boring."

"I found the Higgs particle in one day."

"I found the Higgs particle to the 5-sigma level in one hour."

Their co-workers all stand to the side and smile quickly at each other in a knowing way. It's quite cool to watch them interact.



All of that aside, I met some really wonderful people yesterday. When you find an adult that has a kid on the spectrum and who has a kid on the spectrum similar to your own in age and issues, and you actually kind of connect with that adult personally, it's really awesome. I got that great gift yesterday, and even better, we had a full hour of (mostly) uninterrupted talk time.

As we were talking, she said something so gut-punching that it stayed with me all day yesterday and into today. She said that she has many friends with children who have much worse delays and issues and even physical disabilities, and that she feels guilty even admitting sometimes that her son has autism. She feels like she's taking away something from others; like she and her son are taking up space that someone else could be occupying. I have to admit that I felt this same thing. I even remember apologizing to the school counselor once when I went in to talk about something to do with Truman. "I'm so sorry. I know you have plenty of other kids with much worse problems..." You see the other end of the spectrum and its issues, and in comparison, your battles seem small.

But if you rationally follow this logic, you (really, your child), is undeserving of the attention and/or support that might instead be used for others. We'll always find a way to keep ourselves feeling guilty, won't we? Myself most definitely included. It's not coming from the outside, because I have never felt from my friends who have kids with much more disabling autism that Truman is undeserving of the autism title. It's coming from inside. It's one of those old films dredged up from my own brain and projected out onto the world.

My promise to myself and my hope for others with kids like mine is that we see their issues as deserving of attention and support. If we don't bring attention to it, who will? If we don't see it as deserving a second look, who will? Yes, he can speak, and no, we don't have to do a lot of different therapies. We are lucky. But yes, he has Asperger's. He has problems getting along in a lot of ways, and if I don't help him learn to deal with that by seeking support and being his advocate, then I have done him a life disservice just by being a projector with a broken film reel that just keeps flipping the same distorted image over and over.

Plus, I have to advocate for him so that one day when he rules us all he'll be a really good and benevolent ruler and not use his discovery of the QX12 particle to destroy the universe.

playing with adults

I teach a birth class, so I get to see all of the hope and promise of the world bottled in one small classroom every week. Young couples on the verge of becoming new families, all so completely unaware of the dramatic change about to take place in their lives. And though some of those changes are big and do happen overnight, most do not. They sneak up on you.

One of those moments might tiptoe in one day years later when you find yourself in a little room with one-way mirrors, watching your child being tested for one thing or another while you wait for a doctor to come in and give you news that will officially shift your (and your child's) life direction permanently. It comes quietly in the door and tickles the back of your neck, makes you look at your spouse across the room and laugh, for lack of any better response, and mouth, "how the hell did we get here?" How did those twentysomethings who just liked a good beer and sitting in the front yard listening to music get into this room? Surely someone has made a mistake to put us in charge of another human being, and especially this particular one.

So, when I go to my class each week and see all of their bright and nervous expressions, I can't help but think... suckers.

I had one of these moments at the end of the summer, when I happened to be alone with Truman, so I couldn't even look at Jim and say, "holy shit!" or anything. We were invited by the Vanderbilt Kennedy Center's TRIAD program to participate in a study in which the ADOS was administered to Truman in order to train psychologists and other professionals in the use of the test. If you are a kid who is anxious and/or gets singled out for not-so-great things often, having something good in your arsenal like smarts is always a good confidence booster, so he generally likes to do tests like this. They're just puzzles and games and thinking and interacting one-on-one with a person who is very interested in him and his smarts to him.

I expected that we would be in a small room with maybe a few people and an administrator. But what we found when we arrived was a 2 day symposium in progress. It's a gathering of school psych professionals who are learning to administer the ADOS as a standardized way of testing for autism. It was on break when we arrived, but I quickly realized that we were going to be in front of at least 100 people doing this testing. On the way to the testing, Truman got a headache, which usually means vomit eventually. I had rifled my purse while driving, found a lint-y Tylenol, and when we arrived, we ran for the nearest vending machine to get a Coke to wash it down and let the caffeine do its magic to speed the process. God help us if he vomits on stage.

While we waited, I tried to explain that we would be in front of lots of people. The woman from TRIAD who was escorting us asked if he was nervous.

"No."

"Not even a little?"

"No. Can we got to the Adventure Science Center after this?"

The participants began to filter back into the room with their bagels and coffee. They put a microphone on Truman and seated him at a table at the front of the room with the doctor who, coincidentally, had been the one to give us his diagnosis the previous year in that little one-way mirror room.

Dr. Hunley is a very sweet and gentle woman, and he likes her, so he was quite ready to perform for her. The first modules were all imaginary play related; take this group of toys and just kind of play with them to make a story, that kind of thing. This is something that he's never been great at. If he does do any sort of imaginary play it's very limited to specific subjects, like getting things from A to B and not relationships or people. He was stumped. And so Dr. Hunley stepped in to facilitate the play.

She picked up a girl Barbie dressed in a space outfit. "Oh, hi. I'm an astronaut and I'm lost. I can't find my way back to space. Can you help?"

Truman picked up the male doll. "Sure."

Silence.

"Here's a book. I think there are maps in here to space. Could you read them for me?"

Truman picked up the tiny blank book and looked at it for a beat. "Actually this is an instruction manual for your spaceship and it says that you did not use your flaps in takeoff and so your climb was too fast. Also you should know that your ailerons are connected so that when one goes down the other goes up and when that one goes down the other one goes up."

Well, that ends imaginary play. Scribble scribble scribble. The room is writing things down. Not just one person in the room, but the whole room. What the hell are they writing down?

Next came questions about relationships.

"Do you know what being married is?"

"I don't know. Well, I think it means that you live with someone and you have babies? But I don't know. You just have to be a woman to have a baby, so you really don't even need to have the man part I don't think."

"Would you like to be married one day?"

"I don't know."

"How about a roommate? What's a roommate?"

"I don't know."

"It's someone that you live with. Do you think you would like to live with someone one day?"

"I don't know."

"Do you have friends?"

"I don't know. Well, John and Tom and Joe."

"Good! Have you seen John and Tom and Joe this summer?"

"Hmmm. I don't know." Editor's note: John and Tom and Joe are the neighbor boys and we have seen them approximately one jillion times this summer.

"Do you know what a bully is?"

"I think it is someone who is mean to you?"

"Has anyone ever been a bully to you?"

"I don't know."

"What about a special friend - like a girlfriend or a boyfriend. Do you have one of those?"

"No. Well, just my mom."

The room tries not to laugh. Then they all look down and scribble. What are they writing? I look down at my foot and see the tattoo I got when I was 23 years old. I got it because I was 23, and I knew I was never going to be 23 again, and if I got a tattoo when I was 40, it would be much sillier than if I got it when I was 23. Whenever I look at it, it reminds me that I was once 23, and for that moment, I can kind of see my 23 year old self. How the hell did I get here again? I want to text that to Jim since he's not here, but I don't want to be the weirdo mom texting in the middle of her kid's evaluation, so I just watch everyone scribble.

To decipher this whole relationship Q and A, you have to know the definitions of his responses. In Trumanland:

No = no

Yes = yes

I don't know = I don't know and it confuses me. And sometimes, depending on the circumstances, it might mean no.

Hmmm = I don't know, and I really don't want to think about it anymore, so you should just move on.

Suffice it to say, relationship questions are one big "I don't know."

When it was all over, the room gave him a round of applause. He was un-mic'd and led outside, where our TRIAD representative presented him with a $25 Target gift card for his time. This kid, the one who had sat straight faced through testing in a room full of 100 people, who had not changed expression when attempting imaginative play or changed his tone of voice in talking about relationships, might as well have suddenly been in a Gilbert and Sullivan show. He did a happy dance. Oh, joy! Oh, rapture unforeseen!

So, my stomach unclenched and we moved on to Target, followed by The Adventure Science Center (he did have on his "Science Rocks" shirt that day, so how could I deny him?). And I thought about my sweet students and their parenting experiences yet-to-come. Labor and birth? Pah.

Later, I asked if he had fun. He said, "I guess. But it was kind of weird that an adult would want to play toys like that with me. Especially when she used the pretend voice."

I would love for him to talk to you all about this, but he doesn't care. He might even say, "Hmmm."

the pond at the end of summer

Or at least, it's the end of our summer in terms of waking late, eating those popsicles in a plastic tube that are just basically a bag of delicious colored chemicals and swimming every single day whether we want to or not, because school has started! And that, my friends, was the whole reason I started this blog in the first place - trying to figure him out a little more so that I could make his life outside of me, with other people, a little easier.

While it was only an 8 week experiment, and not officially a real experiment of any sort of scientific kind, I learned lots about my child. Enough that I could walk into the resource teacher's office and talk in a knowledgeable and assertive way about what will work for this frustrating, funny, genius of a weird kid that I have during school. While these things that we have learned may not seem like much or particularly rock your world, they have made a huge difference to us around these parts.

1. One of my goals for the summer was that he find some friends, or that I get out in the neighborhood with him and help him to figure out the dynamics of hanging around with friends. At the beginning of the summer, friends were a novelty, and he did enjoy hanging around with them. But after having the neighbor boys over (7 and 9 and two of the sweetest kids ever made, but definitely very puppy-like rough-and-tumble, light saber wielding boy energy) many times and finding either A. Truman playing by himself or reading while the boys played with each other and Tru's toys or B. that his behavior would spiral to a place of complete loss of control ending in tears where he would eventually come and find me and say "Mom, I don't think I can do this," I officially have realized that playing and playdates and sleepovers in the traditional sense just may not be something he enjoys. He met a 7th grader this summer who also has Asperger's and who loves video games as much as he does, and the two bonded and chatted like old pals. I have come to rethink the usual "playing" in the way that my gregarious and hyper-social daughter and other kids do it. He's not going to go and hang out in a big group to play spotlight tag at night (his worst time of day) and pull it off. But he might teach me chess, and he definitely would enjoy hanging out with someone who is quiet, likes to read comic books or talk video games, and definitely one-on-one instead of in a group.

2. We have found a medication and a medication schedule that works, which is just about absolutely the best thing ever. I got a note from his teacher today that he produced 4 paragraphs without an adult hanging over his shoulder and constantly guiding him. That's UNHEARD of in our world. But as I have read comments and gotten emails about medication this summer, I have found that there is much more guilt production and judgement from those who oppose medicating kids than I ever thought before. Medication has so many downsides that I can't imagine anyone wanting to medicate their kid unless the alternative was just unbearable, so really, cut us a break. The wise Sergeant Hulka once said, "Lighten up, Francis." While I'm not sure that's the best quote to apply here, I really like the sound of it, and I'm going to use it anyway.

3. I honestly like to talk to hang out with Tru, especially when it's just the two of us. My husband would say the same. He's helpful, really kind, incredibly honest and inquisitive, and it makes for a really fun date. When they meet him when we're out together, people really like interacting with him.

4. You can love golf as much as you want, but all the golfballs in the world can't make you play golf when you have Asperger's and it's hot-as-hell July or August in Nashville, Tennessee.

5. He needs a break from stimulation several times a day, especially if he has had to interact with people quite a bit. At school we are working on getting him his own quiet space that he can go to a few times a day to decompress. His favorite break right now is to lie on his bed with his SensaCalm weighted blanket and watch Thomas or Garfield. This has helped to cut down on meltdowns quite a bit.

6. He spends a good deal of time - more than I thought originally - trying to checklist and decipher others' feelings and moods. This is not something I have ever taught him (or thought about having to teach him until now) so I am very proud that he has found, or is beginning to find, this work around to intuiting.

7. Our family is chaos on a cracker. We're loud and disorganized, at least two, if not three, of us are social to the point of crazy, and I am working on toning down the amount of stimulation and restless energy we bring to the house that we are all not even aware of that must make him feel completely nuts when he's not even aware that we're making him feel that way.

8. If you just come right out and say, "He has autism," most people will be much more patient than they would be if you don't. He looks quite normal, and is going to talk to you like he is normal, but sooner or later he's going to do something weird, and you're going to get a little peeved. Then he'll do 4 other weird things, and your patience will get thinner. Then you'll start looking at me like I'm the one doing the weird things and we'll all leave the experience glad to be rid of each other. Best to get it out in the open early on.

The other day I took him to a Minute Clinic because he had all the symptoms of strep. When we got in there, he couldn't not touch the scanner that the woman used for our insurance card. I mean, come on. She had to use the camera on her computer! For a real working purpose! That's his DREAM. And so he asked some questions. Then some more questions. Then he touched it again. I could see her patience waning quickly, so I explained, "Truman has Asperger's, so it'll help him quite a bit if you tell him exactly what you're going to do before you do it during the exam." Immediately she softened and became quite chatty. She let him push the button for the scanner. She didn't mind that he rifled through all of her mazes that were meant for kids, and critiqued them on their lack of difficulty ("too babyish"). She let him look in the ear thingy before he grudgingly allowed it into his ear (with shoulders up around his ears) and talked him incrementally through the blood pressure check while he cringed (he hates having his blood pressure checked no matter how many times we do it) and patiently described as best she could each sensation involved in a throat swab. She let him work the timer. She complimented him on his knowledge of computers when he fixed a paper jam in her printer. And all because I just said the magic words up front. I don't know what I have been thinking before now.

9. And my favorite - his lack of sleep and surfeit of erratic behavior is directly tied to his routine, his amount of stimulation, and stress. Summer hummed along smoothly and happily. The wrenches in the works were camp and a week of babysitters. Now, as I say this, know that he adores both Encore Camp and his two babysitters. ADORES. But autism, being off the routine and the ability to keep your shit together will always win out over adoration any day. Summer is awesome. It's full of mom, and home and doing things he likes to do rather than what he HAS to do. That's true for all of us, right? But imagine if your coping skills and your ability to judge the world's reactions were very little or nil. Once you were out of the safe zone of the very limited friends and family you would allow in, it might get a bit stressful. It might require more thinking and planning and judging people and emotions, none of which you are the best at. And you're a little older now, so it's not socially acceptable to cry or freak out when you feel like it, and you feel like it a lot when you're not in your safe zone. If you are spending a lot of time feeling stressed and trying to hold it together, at some point you're going to blow. Truman blew maybe a total of once over our entire summer together. He had no headaches over the summer, and ZERO sleep problems. Truman blew a couple of times in two weeks at Encore Camp with big meltdowns. I had a week of babysitters the last week before school started, and while he came home loving every minute of his day bathed in the light of sitters Miss Megan or Ada, he immediately began sleeping badly. He got up at 2:00am for the day, or he woke up 12 times a night. He got a migraine. He began getting very emotional and melting down over tiny things. But as soon as he was back on track after that week was over, we were back to pretty smooth sailing.  I don't know how to make this better, but just knowing that it exists makes it 20 times more manageable, at least in my mind.

And so we're back to school, but hopefully with a clearer understanding. I keep seeing the yogic analogy of a pond with the water broken by wind. Still the water, and you will see suddenly the whole image that was broken up - the clouds, and trees reflected in the water, and below that, you may even see the bottom of the pond and what's below the surface. That was our summer - a still moment to piece it together a little more. The challenge will be to keep the stillness and clarity year 'round.

Another challenge will be to rename the blog! I want to keep it going, at least for myself. I haven't been able to get Truman to write in a while, and I'm not sure if I can encourage him to, but I'll keep trying.

The J.K. Rowling Complex

For all of our fabulous progress of the early summer, about 2 weeks ago, Truman and I both hit a wall.

The fabulous freedom of summer turned into a constriction for both of us. I have completely neglected my work duties purposefully this summer so that I could just immerse in trying to find a track for him, but in doing that, I looked up one day and realized that I have completely neglected my work duties. There are unforgivable amounts of unanswered emails piled up, articles to edit, summer PTO duties to rev up for the school year flapping in the wind, and maintenance items for my classes unmaintained. I'm a fairly easily overwhelmed person, so once you load on some of that mental weight and then add stupidly high hot weather followed by monsoon season that doesn't allow for much outdoor-ness, you might find me getting a little nuts. There are children of all sorts running through the house like Gremlins (the evil ones, not the cute ones) bent on destruction. I practically bar Jim's office door to keep them from overrunning his office like army ants while he takes conference calls.

If it isn't a surplus of energy, then it's the opposite. Lethargy is palpable. The draw of The Screen is strong. My resolve is weak. All have collided in a train wreck that involves an obsession with Garfield and Thomas the Tank Engine and the last creative brain cells that I own. I have looked up a couple of times lately and found myself unconsciously singing that Talking Heads song to myself. What was my college degree in again? It's a Groundhog's Day of hot or rain (and now both together), zero productivity, and frustration. I have toyed with the idea of making a recording of myself saying, "Turn that TV off. No, you cannot have my iPad. Turn that DOWN. Go find something to do." I could play them in random order, and more than likely it would fit the situation, or at least be close enough.

I tried a sitter one day this week so I could make a dent in the backlog of overdue stuff. It worked well for me, but I came home to find my teenage sitter looking a little... well, like me - 30 years older and kind of like she just wanted to get the hell out of there.

Every summer this point finds me. By mid-July I am questioning my decision of even having kids, much less my own ability to handle an extra-spicy one. If I completely surrender to the summer - to the kids (and specifically to the kid), we are all pretty happy. But when that wall shows up, the one with the writing on it that says that I have to get some stuff done for work, and I realize that I am not doing one other thing other than caretake some person or the house or attempting feebly to work for someone, I begin plotting getaways and fantasizing about solitary confinement in a blissfully comfy padded room without any people and my meals delivered through a hole in the door so I don't even have to see that person either. Though a solitary confinement massage therapist would be nice, screw spas. Silence is where it's at.

And the guilt. Oy. I see homeschoolers of multiple kids and kids with special needs who seem to ride a wave of love and feed on being nurturers and raisers of young minds and seem content with that as their life's focus. Or what about J.K. Rowling, single mom on welfare, whose drive was so strong that she wrote the first Harry Potter while her kid napped in a stroller at a cafe? Instead of inspiring me, it just makes my posture a little slump-ier and incites my Jungian shadow to come out for a wise crack or two about how "welfare" implies "no job," and how "stroller" implies "small child that is contained," and how "nap" implies "break in the action where no one is talking to you." Give me those conditions and I might get something done, too. Signed, Obviously Projecting and Wallowing In It.

Do I lack the ability to surf the love wave? Am I missing the drive of J.K. Rowling? Am I selfish in my needs and/or poorly equipped at multitasking? Do I truly have too much going on in life? Or should I just strap them in a chair and reinstate nap time while I have a latte and answer emails? Thankfully there are just 2 weeks left in the summer and plenty of guilt and undone tasks to explore until then.

The Thomas the Tank Engine Checklist of Social Interaction

Truman has always loved tracks and trains, and Thomas the Tank Engine has long been a fixture at our house. It was deemed babyish for a time, but has made a comeback in this weather that's too hot for any real outdoor play. When Truman becomes interested in something it's never just a little bit, so now that he's turned his attention back to Thomas, all thoughts that it might be too young for him have been forgotten, and he's gone full bore back into the tracks, trains, accessories, books, videos, games and internet research.

The interesting thing has been to see how his interaction with Thomas has changed since he was younger. When you are a little boy and track obsessed, I think Thomas is appealing because it puts a friendly face (literally) on trains. Like girls with dolls, boys can ascribe emotions to the trains that aren't centered around fighting the way lots of boy toys are intended. (I can leave my judgement for another day about how "cross" those damn trains are all the time and the good Reverend Awdry's sadistic take on work ethics and what constitutes "useful"). As an older kid, now he is questioning Thomas' motives. He's analyzing story lines that were surely never meant to be analyzed. And most interesting to observe, he's an autistic person attempting to figure out the emotions of things that don't talk. And talking, I've come to realize is a large part of the gauge he uses to judge an interaction with someone. That is, when 20 other things aren't precluding his ability to even care about the interaction in the first place.

Last night we were reading one of the original Thomas stories where Thomas is given a train to pull for the first time. But on his first run, something happens and the train is uncoupled, sending Thomas out running around the Island of Sodor thinking he is pulling a load when he isn't. There is a picture of Thomas on one page that shows Thomas speeding away without his train while men in the station try to get his attention. The text reads, "What happened then, no one knows. Perhaps they forgot to couple Thomas to the train, perhaps Thomas was too impatient to wait until they were ready, or perhaps his Driver pulled the lever by mistake."

Truman asked, "What do you think it was, mom?" (When I am asked to read these things, most times I don't actually pay attention, so I had to ask what he was talking about.) "Why did Thomas speed away without his train? Was it a. that they forgot to couple him to the train, b. that he was too impatient to wait or c. that his Driver pulled the lever by mistake?"

"I think he was just impatient." I said without thinking about it.

"Me too. See, here's why. The look on Thomas' face is slightly different than his normal smile. The eyebrows are tilted like when you make your thinking face. The mouth is not smiling, but it is on one side which doesn't look like a smile but it isn't a frown either. And his eyes are looking behind him instead of forward, which could mean he's looking back at the men at the station like he's saying 'ha ha!'"

My whole family has this disease where they can't see something that's plainly in front of their faces. I know that if one of them asks where the milk is in the refrigerator, that I am going to have to get up from what I am doing and go in there and hand them the milk unless I want to be tortured with yelling precise descriptions of items in the refrigerator so they can locate the milk via food landmarks, and even then more than likely they still won't find it. Jim, the oldest of the disease-havers, is aware of having the disease and tries very hard to recognize when the disease is showing itself. He'll look extra hard at the refrigerator and inventory it item by item, but lots of times it still doesn't work. It's like a missing brain connection or something.

On top of it all, as a part of his Asperger's, Truman doesn't realize that he should turn his gaze to something to which you are pointing, so even if I get up and go to the kitchen, if I just point at the milk, it will mean nothing. Depending on the time of day, his attention might be so completely out of whack that he can't even follow the answer to "Where's the milk?" He might ask, and then completely move on in his head, and maybe circle back around to it after I yell from the other room 3 or 4 times about the precise location of the milk. It can be very frustrating.

As we read the Thomas story and he explained to me his way to deduce Thomas' motives, it struck me again just how much precludes his ability to read someone or something. Where I can quickly glance at the Thomas picture and read the paragraph and intuit without even knowing that I'm intuiting it that Thomas was being impatient, to Truman it's a whole checklist of a process. Facial features all have to be examined individually, followed by a thorough reading of the options in the paragraph in order to come up with an answer that you or I might just read on by. Now, let's add to that his attention and focus is absolutely nonexistent. You and I intuit, he has to checklist, but if he doesn't have the attention to check the list, then he just... won't. I can imagine that it would be pretty easy to not think at all about what anyone thinks or feels because it would be such a... job... that is, if you were even aware of having to check the list. That's a lot of stuff working against his ability to quickly process, or really, to be motivated to process at all.

It always comes back to... I get it, world. I get why you are frustrated with him. With no readily visible signs of any kind of issue, your own intuiting would say that this kid should be able to do whatever the task is at hand without a problem. Every day is a new reminder for me, a new revelation or a deeper understanding of what it's like to live under layers of things that impair someone's ability to interact with the world in a typical way, especially when the intuitive signs say that all systems should be go.

With one in 88 people in the world interacting in this muffled way, it might be worth our while to turn the idea of Autism Awareness toward actually becoming much more aware of the intricacies and differences in others' perceptions and communication abilities.

errand day and other things

I've been doing errands with my mom today. First we returned movies to Redbox. Then we went to Phillips Toy Mart. I got a yo-yo. It's a Power Brain XP. It's mix of the Brain and Power Brain yo-yos. It has a switch on it that will change it from Auto to Off. Auto will make it automatically come back up and Off you have to manually make it come back up. I am trying to learn tricks with it. Although I can't because I can't get it to come back up in the tricks. I can't even do Around the World where you make it spin around and come back in your hand. I got a DVD to show me how. I also got a Unstoppa... OK. I can't tell you. That's a secret. If we ever play golf together, you'll find out.

Then we went to Target where I got a Chameleon Gamecube controller. There's an empty spot to the left of the Z button on regular Gamecube controllers, but on this controller they have a blank button in that empty spot. And below right of the blank button it says •TURBO. What does it do? I've never seen this button. What I am thinking is a rapid thing for Z or maybe it speeds up something. It's a mystery. By the way, I just kissed my controller. I love it.

The drunk octopus twins want to fight you in Target.

I also found The Drunk Octopus twins there. 

Then we went to Costco. This is the gas pump. It looked like a face so I wanted to take a picture of it.
At Costco I got Legends of Bikini Bottom and my mom got me a hot dog for lunch. I was looking at the DVDs and I couldn't find my mom anywhere that she said she would be. I didn't get lost. I just couldn't find mom. I got upset and kind of sad. But I found her and we made a deal that if we ever get separated I should find someone that works at the place and tell them that I lost my mom. Or we should always agree to meet at the books in Costco if it's there.

I have decided that I want to take piano lessons. (Editor's note: Truman has asked me to type that he is now playing the piano from high notes to low notes to punctuate this statement.)  It looks fun. I think I might be good at music.

My mom got me a new Spongebob weighted blanket. It's supposed to be more comfortable because it's weighted. It's for autism. We heard about it from a website. It's a weight and not a squeeze like I saw in Temple Grandin. Temple Grandin was a girl with autism who made herself a squeeze machine that was supposed to squeeze you like a hug. That works for me too, sometimes. It makes me feel calmer. My blanket makes me feel nice too.

Things that are interesting

This is a blog post about things that I think are interesting, etc.

1. I noticed today that they have a Moby Dick movie, book and an amusement park ride. (I also have the book and have seen the amusement park ride but haven't done it, and the Moby Dick amusement park ride is at Beech Bend. The old book was 50 cents).

This is the movie poster for Moby Dick.

This is the amusement park ride.

This is my book. I think it's the kid version because whoever gave it to me said that it was part of these books that were kid versions of these books.

2. Back in the old days bubblegum was 1 cent.

3. The universe began with a Big Bang. Before the Big Bang there was just emptiness and space. Not outer space, but space as in "I don't have much space." (I really don't. My mom is sitting in the chair with me.)

4. I would like to look up on the internet who the first person on earth was. I don't know where they would have come from. I think it was a man. What do you think? No, wait! It has to be a woman. Otherwise there would be no more people but that one man because he can't make babies. Only women can.

So, this kid with Asperger's goes to an amusement park...

"So this kid with Asperger's goes to an amusement park..."

While it does feel like the setup for a joke, it's a real something that we do every year. If you know the checklist of symptoms associated with high functioning autism, then you'll the understand that our trip yesterday to Beech Bend pushed the boundaries of endurance for such a person. In fact, we knowingly coaxed, tickled, irritated, antagonized and by late afternoon, had flat out violated the boundaries. For example, people with Asperger's may:

1. Not pick up on social cues and may lack inborn social skills such as read others' body language, start and maintain a conversation or take turns talking.

The best social experiment in the whole world is this: Put a kid with Asperger's in the place where waiting in line is of the ultimate importance, and you'll see pack mentality, social justice, and all kinds of other things come leaping out of the human psyche like monkeys. You've never seen people -kids, and even grown ass adults - lose their minds so quickly over someone who just refuses to acknowledge that a line even exists much less that he has to follow the rules of it. And if he's addressed about it by one of them, he probably won't even pretend to know that he's being spoken to. I would think it was funny if I wasn't so busy apologizing to the pack.

2. Dislike any change in routine.


Hey! Let's all get up at the crack of dawn, get on the road smashed in a car, spend our day doing things that are completely unnatural in the real world, eat all the things that we say we can't usually eat, and after we've hopped you up on overstimulation, then pile back in the car, wet, dirty, hot, tired for the return trip way past bedtime.

3. Appear to lack empathy.

See that sweet, cherubic, round-faced 4-year-old holding his mom's hand? The one with the smile, who is so excited about riding the shiny kiddie motorcycles that go around and around that have real horns that honk? He's going to cry in a minute when my kid pries his fingers from the handlebars and pushes him off of the green one because, well, it's the green one that he's ridden 22 times today, and he cannot ride another color. He will have a completely blank expression and seem un-empathetic, but only I will be able to see the oh-so-subtle expression that says that he knows what he's doing, and he's sorry, little boy, he really is, but it's the green one.

4. Be unable to recognize subtle differences in speech tone, pitch and accent the alter the meanings of others' speech. 

I'm talking to you, Mr. Jumping Jumbos Ride Operator, who understandably tried to get his attention with a sharp tone when he tried to open the gate while the ride was (still very much) in motion.  It doesn't work to yell unless you REALLY YELL. Makes me glad he hasn't taken a shine to roller coasters.

5. Have a formal style of speaking that is advanced for his her age

6. Be preoccupied with few or only one interest.

Those two go out to you, people of Kentucky, as you encountered him doing anything at any time in the Arcade. Go ahead and add numbers 1, 3 and 4 to that as well.

7. Avoid eye contact. 

8. Have unusual facial expressions or postures.

9. Talk a lot, usually about a favorite subject. One-sided conversations are common, internal thoughts are often verbalized.

Those 3 are for you, Ms. Crazy Bus Operator, when he asked you about the control panel (without looking at you, of course as in number 7) and how it worked and then proceeded to explain in a quite lengthy way how that pertained to something in a video game (number 6), while holding his finger in the air like he was the Scarecrow in The Wizard of Oz after he'd just received a brain (number 8), and while a line of children and parents waited in the hot sun behind him. (Please see item 1 for how he got to the front of the line, and items 4 and 3, in that order, for his reaction to their reactions.) 

10. Have heightened sensitivity and become overstimulated by loud noises, lights, etc.

By 5pm I am pretty sure that most employees and patrons of Beech Bend knew who Truman was, not just because of all of the above, but because by 5pm, he had had just about all the bells and lights and excitement he could stand and lost control of all impulses and any control that still remained. He doesn't shy away from stimulating things for the most part, but instead falls head over heels into being crazed by them, kind of like a passenger on Ken Kesey's Magic Bus Trip: He looks normal, until you realize that there's a person there who has drank orange juice laced with LSD and who is seeing and thinking things that aren't part of your own reality.

But by 5pm, everyone in the park also knew who he was because he's just so damn interesting and funny and so much unlike most other kids. He had won over the kiddie ride area with his "Crazy Bus" song (including the poor Crazy Bus operator from number 9). He's incredibly difficult, but he can have more fun with more exuberance and more abandon than anyone I know. 

And so we weather this trip every year, and the 8 full hours it takes him to warm up to riding anything just so we can have the one hour where he has more fun than anyone else ever had in the history of all fun having, and so that we get to be around it, too and some of that fun can rub off on our adult selves.

a trip to an amusement park

Yesterday we went to an amusement park and it was awesome and fun. I went on Jumping Jumbos for the first time.

My day started with Jalopy Junction with mom. Then I went to the pool, I went on the lazy river that goes through the wave pool and also the regular pool that has this rope thing that goes across that you climb on with a  pad that makes it easier. There was also the Super Slide 2000 and bumper cars with dad. Me and dad both controlled it. I accelerated and he steered. Then we did Crazy Bus and The Whip and an Arcade and I did their prop cycle where you have to pedal on this flying thing to save Solitaire, this land, because some dude touched something making Solitaire fly up into the air and you have to, well, you know. I told you already. Put it back on the ground. And then I did a motorcycle thing where you have to drive a motorcycle to the end, but Sonic was there carved into a mountain. Details: In Jumping Jumbos you have a lever that when you pull it back the Jumping Jumbo will go up. Super Slide 2000: no details. In Bumper Cars you have a steering wheel and a pedal (of course). I also went on this Western Train with Theresa, and whenever we went over the bridge, I told her to ring the bell.

Everything I didn't blog I wouldn't do except the Dragon Coaster which I think I will do next time.  I am scared of roller coasters except for the Dragon Coaster, which I am only about 10% scared of.

Also, did The Crazy Bus and made my own Crazy Bus version of The Wheels on the Bus song, which you can see here. I forgot a  part when I was filming it, which should be "turns its axles and gears."



I went with Theresa and dad and mom and Sophie and Maeve (although I didn't ride anything with her) and Ben (though I didn't ride anything with him either), and Mary (though I didn't ride anything with her) and Wendy and Brian (though I didn't ride anything with them).

beech bend tomorrow

Tomorrow we will go to Beech Bend and Splash Lagoon water park! I've only bend to Beech Bend (get it? it's a pun) once, and I really liked it. There was some ride I forgot what it's called, I think it starts with a V, and it does this thing where on the turns it goes really fast. I want to try to ride that. I like the Crazy Bus that spins around and also changes which way it spins.

There are some rides that I'm afraid to get on. It's actually hard to explain all of them.

my science experiment and chess teacher

Sometimes it feels like a science experiment, this summer with Truman thing.

I'm not just hanging out with him anymore, or trying to keep him occupied during this downtime or helping him to figure himself during summer. I've become an observer of Truman at the level of Jane Goodall and her chimps.

I am beginning to see that there are patterns in the behaviors, that I've never seen before. We have always called him Princess and the Pea, because he is so dang sensitive. He's highly sensitive to sensations. He's always the guy who gets sick first and he's sick way more than the rest of us. In fact, we can usually tell at least a day or two before he gets sick because his behavior goes completely off kilter. He's emotional and anxious and easily scared. Schedule changes and transitions are hell.

But I have noticed this: Once we settled in for the first week of summer and got into a groove, he did wonderfully. Once we did Encore Camp, while he had fun, it completely threw him for a behavioral loop. Suddenly nights were hard and mornings were harder, just like school, and there were meltdowns in the day, which I'm not seeing at all in normal summer days. This weekend post-camp was a little hard, but now that we're back on summer schedule, he's really come back to a good place. Even today - heat, water, wasp sting and all - was no problem, and he hung with the whole day, having fun just like the rest of the kids, until the sting took him down.

 I mean, I know he's sensitive, but he could be just really more sensitive than I thought to changes in routine and respond not-so-well behaviorally to things that make him at least slightly anxious. Could it be that it causes behavioral disturbances that I've either not seen or ignored up to now? It makes me wonder much more about diet and other environmental factors or unknown sensitivities and allergies that  we either haven't looked into or wanted to wholeheartedly change because it seems such an enormous pain in the ass. I'm thinking now it all might be worth a look.

He continues to charm and amuse in the moments when I don't want to scream and run from the house in frustration.

the river and a wasp

Today I got stung by a wasp. I was at the playground at the river and it just stung me for no absolute reason. So I have a big fear of bees and wasps (which is why I'll never buy Spongebob: Revenge of the Flying Dutchman for GameCube because it has bees and wasps in it because one thing is where you have to get all the bees out of Sandy's tree dome) so this is like my worst fear come true. My real first time where I got stung by a bee was at Dad's RC plane place where there was a sweat bee on my arm and I thought it was a bug so I shooed it off and it stung me and it went away. That did not hurt. This hurt.

I cried when it stung me. 1,000,000%. This person looked at it and then took me to my friend's mom and then my mom came. It still hurts. And this is why I am never going outside again. Only if it's a long time out of nature will I go outside.

Before that I had a fun day. I was at the river and the playground and the splash pad with my friends. We were going on inner tubes riding down the river. If only the rapids would go faster! It was fun. But I'm still not going in grass outside again.

father's day haiku

There is this thing called a haiku that I read about in my Who Knew book, and I also saw it in a Target ad where they had Haiku-pons. They are three line Japanese poems. In the book it says that most professional poets stay away from haiku so one of them won't be posted on the web for other people to laugh at. But I am not a professional poet.

These are haiku for my dad for father's day.

My dad likes guitars
And Dr. Pepper -s too
He likes RC things.

Dad looks different
He is a boy and wears braids
and a cowboy hat

I like his golf cart
He pushes me on the bed
It makes me laugh loud

Happy Father's Day
I love you very much, dad
Day Father's Happy!