fun stuff about asperger's

Some fun stuff about my kid with Asperger's:

• He doesn't have any pretense. I asked him last night if he was sleeping with his golf shoes purposefully, and he said, "Yes. I really like them." OK, then.

• He doesn't lie, ever.

ª I may not be able to trust him to cross the street safely, but I can give him my credit card and know he not only can make a purchase on his DS but that he can be implicitly trusted with it to not purchase one other thing.

• He's a rule follower in the extreme as long as the rules make sense to him. Whereas if I just happened to maybe, say, drop a curse word in front of my 11 year old girl, she might possibly try it out at another date, I know that Truman would never ever ever ever in one billion years do it because the rules say not to do that. In fact, he might spend part of the day reminding me and admonishing me for the slip up. Not that I know this firsthand.

• He has a very rigid structural idea about how life should work, which also means that his expectations are very high about others' behaviors.

•  He can't read the mounting emotional queues that say, "hey, you are doing something that's really pissing me off and I'm about to blow my top." It keeps you on your toes. Temper loss will crush him because he can't see it coming. You learn to take a deep breath before you talk to him when you are just about to lose it because the resulting emotionally blindsided Truman is about the saddest thing in the whole world.

• The above also means that when he's focused on something he may push past you or run into you and not say "excuse me" or even look at you. Small, social niceties and nuanced interactions don't mean much to him. But if you are very upset about something it will get to him. He doesn't recognize small emotional upsets, but large ones trigger his empathy like nobody's business.

• He is very literal and doesn't get or tell jokes very well and doesn't understand or use sarcasm. But when he is funny purposefully, it's usually either extremely, eye-rollingly stupid or very sophisticated.

• If he's not interested in something, there is nothing in the whole world you can do to motivate him about it. He won't even pretend to be able to get through it. (Unfortunately, much of school falls into this category.) But if it's something he's interested in (e.g. golf) you can expect that he will research it, talk about it until your ears bleed from boredom, read instructions manuals about it for fun, practice it, dream about it and master it.

• He does weird stuff that I love like put a a spatula to sleep in a doll bed; hang his shoe color inserts on the wall categorized by left and right; make a very serious note to himself not to mess his room up in the first place so he doesn't have to complete "clean room" on his chore chart; collect every single (and I mean every single) free newspaper, from Out and About to real estate listings, whenever we see them; read Rube Goldberg art books but see them as serious machines and not funny or ironic; write things in semaphore; decide to call himself only Dr. Graham; write his name backwards on all of his homework.

• He thinks having Asperger's is cool. (He would like to have a shirt made that says "autism golfer.") He thinks that it makes him interesting and smart.

can I make it?

I think the real question of the summer is going to be, can I make it through the summer?


I'm exhausted. We were not meant to have children this late in life. I am sure of it now.

It was a really fun day, but boy he talks a lot.

errand day

Today I got my Nike Golf shoes. They have 8 different colors that you can put in the side in the Nike swoosh. Actually 9. The 9th color is black that you can put in if there's no other color in there. And also these are called Nike Golf and they also have shoes called Nike and they make you win because they are named after the god of victory.

Today on Poptropica I met my friends on a multiverse that I made and we played different games like Starlink and we also chatted with each other. We made us the Pac Brothers. We all named our names with a "Pac". I am Pac-Tru, Joe is Pac-Joe and Thom is Pac-Thom. They live close to me but they are not my actual neighbors because they don't live right next to me.

So yesterday we saw a double rainbow and I was able to make 2 wishes. And also today we saw another double rainbow and I made 2 more wishes. We were playing with the hose and we pointed it somewhere and we saw a rainbow and then we pointed it somewhere else and we saw another rainbow, though it was a bit faded, but only about 10% faded.

Today we went to a place and I got hot chocolate. My mom didn't want me to have it because it was too hot outside. But I kept trying to tell her that it wasn't BECAUSE WE WERE INSIDE! Then she let me have it.

We went to a store and we saw these signs. One of them was of the alphabet made out of license plates.

I also went to Costco about all 3 types of Kindles. I think there are 4, but the 4th one wasn't there. There's a Kindle, a Kindle keyboard for searching up a book, the Kindle Touch that has a touchscreen, and there's a Kindle Four, or maybe it's a Kindle Fire.

We were at Target and saw an Arctic Blast machine that was COMPLETELY out of order. You could tell it was completely out of order because the out of order signs weren't working. They were blinking instead of just being on.

I saw this box of Rice Krispie treats that said you could write on the wrappers. It's kind of weird because what's so special about wrappers you can write on? Why do you NEED to write on wrappers?

memorial day

Yesterday we went to a lake. They had a water trampoline and a paddle boat. The next time we go there I want to get in the paddle boat by myself although I don't know if I can actually do that. I found an interesting rock that was really flat, and I was finally able to skip rocks. I also threw a rock really far, over the creek and into the woods. I liked the creek. I think I might be a creek person after all.

There was this thing there called a Stair Master and how it worked is that you put your feet on both things and one thing will go up and then it will go down and then the other one goes up and then it will go down and then this keeps happening.

I have 3 hobbies and they all have something to do with watching. Which means that I may have the hobby of watching. And those 3 things are: Watching leaves go down waterfalls in creeks, watching TV and watching marbles go down marble tracks. We took a video of me putting a stick down a waterfall so you can see an example.

We are using this for my golf blog for right now because we can't start it right now because it takes longer than my mom has before she goes to class. Here's the beginning of my golf blog:













THE GOLF CLUB
Yesterday I had my first golf lesson. It went really good. First we got a token and put it in this machine that filled our basket with a bunch of golf balls. Then what we did is we learned how to grip a golf club. And then we learned how to swing it the correct way and then we hit golf balls. When I hit the golf balls really good that was my favorite part. I liked the man who was teaching me. And then we went inside to get something to eat from the snack bar.

perspective

As I get older, my whole life perspective seems to have ratcheted like a telescope, widening its angle to reveal more of what's going on.

It's kind of like that scene in Blazing Saddles where the movie bursts its seams and the camera pulls back to reveal that the whole thing is actually on a movie set. Only in our case, the camera pulls back to reveal that we're all just one big consciousness that has been squeezed individually into these bodies that we travel around in. And then these bodies have a mind of their own, quite literally. And think of all the teeny tiny (and also gigantic) little intricacies of the mechanics of these bodies, and how one tiny little thing - from a common cold to a the food you eat every day to how much sleep you got last night to your unconscious memories of traumatic events to something that you're allergic to in your own home -  can affect the whole system and how it works and responds every moment. And then think of that one big beautiful infinite consciousness squeezed into these very finite bodies, all of us running around and bumping into things and fighting ourselves and each other because our telescopes are all so ratcheted down to focusing on the minutiae of just getting by.... well, it just kind of seems like a waste of a lot of valuable consciousness real estate.

Once you have a moment of seeing that, it gets harder to see the world as just full of annoying assholes. Instead, we all start to just look like we're doing the best we can (even if some of us really look like we're stretching the definition of the term "doing best we can" or are even aware that we're doing the best we can.)

That's kind of how I've come to see Truman. Here's this fabulous consciousness, that for whatever reason, has been squeezed into a body where the chemistry is off. The brain misfires and sends wrong signals and clouds his perceptions. The consciousness is still in there, but how the body sees and interacts with the world is skewed. The brain is so stuck in being worried about how scary bees are and running the obsessive loop over the ultra secret hidden level of a video game that it can't feel that there's more in there, and that if it that more, whatever it is, could be harnessed with a clear space in the brain that it might be a quite glorious result.

I see those clear spaces sometimes. I guess the trick - if there is a trick - is to stitch those moments together enough for him that he's able to ratchet out his own telescope as he gets older.

open territory

Who knew the prospect of golf lessons would energize him so much? He's talkative and active and he'll string whole paragraphs together that do not have anything to do with video games. I have spent the better part of my last 9 years trying to find things for him that might catch his attention, but I think I was trying things that I liked. Once I figured out that he does not like the summer in the same way that I do, (canoeing, hiking etc. etc.) it has really changed how things are going around here. He doesn't just want to hide in a computer. But it takes reminding him how much he likes to do other things.

The reading alone thing today is HUGE. And that it wasn't one of his 7 "safe" books (he reads the same things over and over because he knows precisely what is going to happen in them) is also gigantic in our life. And that he picked it out on his own and didn't spend all of his time just trying to get to the card catalog computer? I'm blown away. Add too that that he played with a friend for several HOURS yesterday (OK, granted, it involved the Wii, but he allowed the boy to play two player games with him, which I know doesn't SOUND like a big deal, but it is) is big new territory.

golf balls and books

Today I got my Spongebob golf balls. AND I learned how this golf simulation works that they have at Dick's Sporting Goods. They have red sensors that sense where the balls moves and how fast it goes. They use it to see how your golf clubs compare to theirs. I think that the Dick's golf clubs would win unless you are using Dick's golf clubs that you bought.

I got a new book at the library and read it for AN HOUR alone today. It's called The 39 Clues: The Black Book of Buried Secrets. It's supposed to be about all these people from different groups that make this book about all these different other groups and the most dangerous one is the Madrigals which also call themselves the Cahills. They're dangerous because whenever someone sees a Madrigals sign that it will make even the best spies scream in fear.

I had a good time with my neighbor Thomas yesterday. He came over. We made a good team on Wii Sports Resort but Outdoor Challenge said we had 50% teamwork but that was just because the blue left button was not working.

We got a Dick's Sporting Goods Rewards card today. I was excited about that until I figured out that it was really just for Dick's to find out what products we buy and that they make you do big things for little things like you need 300 points (and one dollar equals one point) to get a $10 reward certificate so you'd need to spend 300 dollars to get 10 dollars. That makes me feel bad.

My next blog is going to be about my golfing. It will be called The Golf Club. Get it? If you don't get it, it's the "golf club" as in the one you hit golf balls with.

clubs, haircuts and a slip and slide

Today I got my golf clubs. I can't remember the man's name who gave them to me. I got a Snoopy putter with them. They're like real golf clubs only my size. I like them.

Next we went to see Sam, the haircut person. I like Sam. I think she's pretty. She's nice to me. ]

After that we went to buy a slip n slide. The slip and slide didn't really work. The only one who got to the end was Maeve. I thought it wasn't slippery enough. I wanted to put something on there  - something slick  - but my mom wouldn't let me.

first day of summer

We started out the summer by picking up the new golf clubs, which were a huge hit! Thanks so much to our friend John for the clubs! Golf lesson first thing Monday.

We got haircuts today to kick things off. Now, it's not nearly as bad as it used to be, but Truman is still not a huge fan of getting a haircut. Haircuts and fingernail trimmings are his nemesis, and we still have to practically play Let's Make a Deal with him in order to cut his Howard Hughes length finger and toenails. When he was really little I had to literally hold him down for haircuts and fingernails. It was like we were trying to cut his head off and not his hair. Then for a couple of years I made the terrible mistake of trying to take him to cheap in and out places like Supercuts. No one ever understood why this kid refused to sit in the chair or if he would sit in the chair, refused to sit on the platform that they have for kids to raise them up higher. Or if he would do that, why he wouldn't put the drape on, or let them touch his ears or let them use clippers. And there was always the possibility that the whole thing would become too much and he would have a meltdown right there. That's why I wised up and now take him only to our friend Sam, who knows Truman in all his idiosyncratic glory and obliges and doesn't bat an eyelash when he asks for a bag so that he can make sure to collect all of his own hair that gets cut and take it home with us. He loves her so much that he will let her get away with a curse word periodically (she's a very creative and prolific curser) and only makes faces when she gets near his ears instead of screaming. That's progress, friends.

With haircuts a success, we hit Toys r Us to buy the best slip n slide we could find for a little afternoon hose fun. I'm trying my hardest this summer to make sure that he has some help navigating neighborhood relationships in the group of kids that runs around here. And it is an awesome group of kids. All ages, couldn't be better with each other or sweeter or more helpful with one another... it's really optimal for a guy like him to begin to learn how to work in a group of kids unassisted. He did a wonderful job. Everyone else was obsessed with getting the hose and spraying one another and running around like banshees. But Truman took on the role of making sure that the water jets sprayed directly on the slip and slide for optimum slide-y-ness.  He took a couple of turns on the slip and slide itself, but really, the angle of the water jets was the most important thing. He even stayed 30 minutes without me.

Hey, as long as he thinks it's fun and it's not a video game, it's all good with me.

smart cookie

He's such a smart cookie. I love what he just wrote. He does have the best ideas.

I went today and talked to the golf pro at Harpeth Hills about some lessons for him this summer. I know absolutely nothing about golf, sadly, and he is ALL about it though he doesn't know anything either. He's been crazy fascinated with it since he was little. He even has a golf ball collection. I thought it might be cool for us to learn together this summer. It's very intimidating for some reason, but when I told him about it this afternoon, he's beyond excited. I need to find him a set of clubs for free or cheap, so someone let me know if you know of any!

awards

My third grade awards ceremony was today, and I got Honor Roll 4 times this year, Perfect Attendance, Certificate of Participation in Science Fair, Certificate of Writing for writing and producing the play, <i>12 Things I'm Not Allowed to do Anymore,</i> an Art Achievement Certificate for the Art Show and I was voted the person with the Best Ideas in my class. I enjoyed the awards ceremony. It made me feel good. Afterwards we played outside and signed yearbooks and then watched <i>Stone Fox</i>. Maggie died in the sled race but when Little Willie got home he got another dog, so it wasn't as sad as I thought it was going to be. Ib the book at the end, instead of his grandpa giving him the dog, Stone Fox gave him the dog. Stone Fox is a guy in the sled race who's never lost before who is racing to get his land back, which you can only find out in the movie because it doesn't say that in the book, only in the movie.


Last night I made a marble run that goes from my bed to the ground. It may be the best thing I've ever made, but not in the future eventually. Here is a video of it. I say that in the video. I don't use the word "maybe" anymore. I like to say "eventually." 

3D

In Tech Lab today we learned about this Portaportal website. And there's one thing I want to do in there: Place Value Golf. Today we had a substitute. It was my teacher Mrs. Dunn dressed up as Viola Swamp. It was funny. I can't exactly describe what she looked like but it was funny. I was reading in the car about how 3D works. It's called binocular parallax. I don't remember exactly, but it's something to do with an image for your left eye and one for your right. And also how the 3D camera works is that with only the outer cameras (because the inner camera is only one camera so it can't do this,one camera takes the image for your right eye and the other one for your left.

Medication

Given that yesterday was headache day, it seems like a good day to talk about.... medication.

Do you remember that Gallagher concert they used to show on Showtime or something back in the 80s? He used to do this schtick about having a baby. Near the beginning is this great part where he throws an anchor wrapped in a diaper across the stage and says, "We'd like to go out with you, but we've got.... the baby."

That's precisely how I feel about the whole medication dance. We'd like to go out to that restaurant with you, but... the medication will be wearing off. We'd like to perform well on the TCAPs but... the medication won't have kicked in yet. We'd like to stay at your house later than 8:00pm but... if we don't give him his medication, we'll all be sorry. I'd like to get some work done but... I have to run around town for 3 hours and find this medication that no one seems to carry. I'd like to use that medication that's worked better than any other we've tried but ... it's $400 a month and insurance doesn't cover it. See what I mean?

I was against the whole medication thing. ADHD, kids overprescribed, teachers just need to let kids be kids, boys are high energy and all that stuff. Was is the operative word there. I'm over it now. From the time Truman could walk, we said he had Pinball Syndrome. Typical kids get into things. Truman bounced like a pinball in a machine - rhyme-less and reasonless - from person to thing to dangerous item in a fashion intense enough that quite literally you couldn't take your eye off of him for any length of time. After he became verbal, we got into the phase that we privately called (and still do since this shows up in the mornings before meds are given) Young Helen Keller. (Think: the breakfast scene in The Miracle Worker where Helen runs around the dining room and puts her hands in people's mouths and pulls plates off the table and throws food.) As he grew it became more about impulse control and how that hampered social relationships and safety since his impulsivity will overrule any sense of danger or his surroundings.

When kindergarten started, about midway through the year, the teacher let us know that she thought he could benefit from trying some medication. What the hell? It wasn't working as is, so why not? We see the lead autism specialist nurse practitioner (with overseeing by a psychologist and a psychiatrist) at Vanderbilt for medication management. Something that she always reminds me about is picking the thing that's affecting his life most problem-wise and to start there. And for us, that's definitely his inattention and impulsivity problems from the ADHD.

But it's not so easy, at least for us. I have talked to many people who have a teacher or some other caregiver tell them that they think their kid has ADHD. They run to their pediatrician, who prescribes a stimulant of some sort, and voila! Everything improves and they all live happily ever after. These people, at least in my world, are the exception and not the rule. All bodies are different, all metabolisms are different, and the things that can be factored in to how a drug will react are innumerable and enervating to try to track. A brand name and the generic form of the same drug almost always react differently with Truman (and usually the preference goes to the one that costs about the same as a really decent car payment). Don't get me started on the cavalier suggestions from others that the medication needs tweaking and the "have you tried...?" which leads to the time it takes to get an appointment (especially at Vanderbilt) to tweak the medication and the time it takes to keep the appointments (God helps us if there's an illness on appointment day), and since these are controlled substances, the pain in the ass it is to GET the prescription (they cannot be faxed but must be handed over in paper form in person), or that they aren't always available or convenient to just run down the street and get from Walgreen's in any consistent way, and really, heaven forbid that it needs to be given at school because that will entail more errands and paperwork and followups with the school nurse (if there is one).

Really. How do have people have actual out-of-the-house jobs and have a special needs kid?

Here is the short list of things we have tried:

Methyphenyldate: aka Ritalin. We have taken it in the form of Concerta, Focalin, Metadate, and now in the form of a patch, Daytrana. All of them have been fairly successful, but they seem to work well for a while and then stop working. They start taking longer to kick in and become quicker to wear off. We are in that very frustrating zone right now.

Adderall


Vyvanse


Intuniv


Strattera: We also take this right now in conjunction with the Daytrana.

He also takes Clonidine, which is an old school blood pressure medication that has the side effect of sleepiness. He takes it at bedtime to at least help him get to sleep. It doesn't keep him asleep, but it does help him to get drowsy.

For sure they help with his impulsivity and inattention, but there's a trade off in side effects. He doesn't eat at all during the time he's on it, and he's already a fairly thin guy so this doesn't help. When he's coming down off of any of them, he's a wreck - lots of meltdowns and crying. They make him sleepless. And the worst has to be the headaches, which he talked about yesterday in his own post. He gets these migraine size headaches about twice weekly, and just about the only cure is to throw up. And none of them provide consistent coverage for very long. Throw some kind of illness in there and all behavioral bets are off, medication or no. Drop one down the sink and you literally just threw a $5 (or more) bill down there.

And the judgement. OH the judgment. And I know it's out there because I've done it with similar kids, and I have one of those kids. The judgement that you're covering a problem with a bigger problem. The judgement that you aren't monitoring it closely enough. Or maybe you're monitoring it too closely and being obsessive about it. It's it not just from other people. It's a merry-go-round of judgement and justification from yourself that you are setting your kid up for a drug problem, making his life miserable, buckling to the desire to have a more complacent and "normal" kid, and a host of other things that if you let it will keep you up at night (if you aren't up already with your sleepless kid) with a bag of guilt on your chest so weighty that it keeps you down and flat.

After 4 years of trying a world of meds, I can honestly say that we are no closer to feeling satisfied with any one thing than we were when we started. We have moments of beauty when he is on the medication when he is feeling fabulous and tuned in and is hitting all the right marks, but it so short lived. We live ever in hope that this is the drug or this is the point in his life, but it never sticks. There isn't an ending to this that's happy or even upbeat. I hate the medication. I wish I could erase it all, blink like I Dream of Jeannie and he'd sit in his chair and listen nicely, not run in the street, not scream or grab people or do inappropriate stuff. But I can't. So we keep on plugging, and researching and prescribing and hoping.

strawberry vomit

I threw up today. I got a headache and it made me throw up. I had just had an Icee, and my throw up was red and smelled like strawberry. I get headaches a lot. The internet isn't working. So I changed it and it still didn't work. So then I tried asking dad, and he said a truck came by and ripped the wire off. If you look out my window you can see the wire that got ripped. Man, I wish I could've seen that. I wish someone made a video of that happening. I don't like not having internet, but I finally found someone's internet I could use but it's really slow. When I don't have internet I do un-internet things like my 3DS. The un-internet parts. There is this website I like called EdHeads. I really like the games. I have to go lay down now. My head hurts. I'm going to let mom put a picture of me with my head hurting on here.

Well, getting him to respond isn't as easy as I thought. One of my hopes for this blog is that I can get him to open up a little bit about how it feels to be him every day. I could be asking for too much, but I hope that if I can get him to post regularly he might soften. For now, he's very aware that there's an "audience" out there.

One of the people who works with him regularly wrote me yesterday to ask about yesterday's post and sleep. Her question was - If he has so much sleep trouble (and he does - more on that in a sec) why in the world would I reward the anti-sleep behaviors by letting him stay up late and watch a movie with me?

Truman hasn't slept since he was a baby. Or I should say, he hasn't slept well since he was born. It has always been a struggle for us. To complicate it, he is on medication that can mess with sleep. We have to be very careful about when it's given so that he can begin a wind down period. It also suppresses his appetite, so he ends up not eating for a good bit of the day, but then is STARVING when it wears off. Sometimes he'll eat his way through a night. He has trouble going to sleep, staying asleep, and he'll get up for the day sometimes at hours that some people are just going to sleep. And let me tell you, unless you want everyone in the house to be up at those hours too, someone had better be getting up with him. And that someone is me since I'm the one that can afford a nap later, but that doesn't make a person feel any less terrible the next day or generally feel off kilter from the odd hours. And if I feel that way, how does he feel? And how does it affect behavior and every other little thing in his life?

All that to say, it's an incredibly valid question, and one for which I have no answer other than to plead guilty. Here are the lame excuses: #1: I am at the end of 6 days of single parenthood while Jim has been out of town, and my will is quite weak.  #2: I am just so happy that he's not running down the hall at 11pm from his room to the kitchen or worse, his room to Maeve's room an waking her up, or just not running in general. And #3: I really want to just sit down and watch some TV, for the love of all that's holy.

Now, here is the one excuse for which I won't apologize: It's a really wonderful time of night for him, and the only time that he'll really talk to me. There's a sweet spot between the medication wearing off and actual tiredness where he becomes more of himself. He'll talk to me about things that he normally would shut down about. For a moment, there is a wonderful flow of communication and sharing, whether it be about why silent movies are silent or why he thinks he's such an interesting person if he does say so himself. That is worth the price of sleepless admission right there. Don't get me wrong - I don't encourage that he stays up just so I can enjoy a little lucid time with him because I really want to just do #3 up there if I'm being honest. But when it happens, it's something that I can't even turn down.

This is a picture from a virtual road trip to the moon from the Spongebob game Oh Snap! Road Trip! It's a picture of Mr. Krabs floating in space and screaming. We went to a picnic yesterday. It was really cool. You got lots of stuff for free like guitar picks, frisbees, and also you could win prizes in this ball game where if you got 2 or 1 balls in a bucket you got to choose prizes from this table or if you got 3 balls in you won an inflatable guitar. I got 3 in the bucket and won the inflatable guitar. I built a playhouse at the Collins' house. The mom needed help and I thought I would be helpful. I put most of it together for her. I just used a screwdriver and screws. I like putting stuff together. I've decided I don't want to talk about Help! I'm a Prisoner in the Library anymore because I don't want to ruin it for you in case you want to read it.

It's very interesting that since I've decided to write here, the more I note his behaviors, both good and not-so-good. Sometimes you just get stuck in your normal day-to-day headspace and forget to look up and take note of what's so dang interesting about life.

Here are some highlights of yesterday:

1. Medication is an issue around here right now. I'll leave that to talk about for another day because it definitely is its own topic, but suffice it to say that it could use some tweaking. Because of that, timing is everything in our day. I wouldn't dream of trying to get him out of the house to do errands before it kicks in and always dread when we have to be out after it wears off, so it dictated the better part of our plans yesterday - timing of giving the meds to him, where we went and at what time.

2. The errand was to the library, which he loves to do, but which can be really tough. The librarians don't take kindly to the guy who can't speak in a whisper for over 1 sentence before he forgets. They don't like his quick, darting movements. They don't like that if I am out of his sight for more than a few seconds, he'll start to yell, "Mom. Mom. MOM. MOOOM. MOOOOOOOM!" ever louder and more intensely and in rapid succession until he sees me. They don't like that he has to be peeled from the card catalog computer about 14 times a visit (because that's what he really cares about at the library - not the books, mostly the card catalog computer). They don't like that he is in a singular frame of mind while he's there, and so he may run into them or patrons and not bat an eyelash or look back at them or say "excuse me." It's an opportunity where we practice those social niceties that come naturally to most ("say, 'excuse me'"). But dammit, I keep taking him. Librarian stink-eyes be damned.

3. It was hot. And hot makes everything just that much more difficult. And when we got to the library, we found out there was a community picnic, just the kind of thing that I sincerely do not want to get into with him. Crowds, things to grab from tables, people to get angry... you just never know. I mean, if people are handing out free things at one table, then it only makes sense that the things are free at the next table, right? In his mind it does. In the thick of it all, when the other kids that were with us were having great fun, he had gathered his share of free things and was completely done with the heat and the crowd and began saying that he wanted to leave, a phrase he will repeat until it becomes so. Since it often isn't possible (or plausible) to just pack up and leave when he decides he's through, the group of us just have to listen to him just get progressively more distressed until...

4. He melts down. There is just no more patience left in the world for him. The crowd and heat and stimulation of being handed free things and then having to discern the rules from table to table finally gets to be too much and BAM. An opportunity for a breakdown will present itself (yesterday it was a guitar pick for dad) and he'll do it until he's completely spent his frustration and overwhelmed-ness. About an hour's worth yesterday, I'd say. His immediate method for release in a meltdown is to go into video game playing mode - his comfort zone. But we're working on finding different soothing methods this summer, so it took some convincing, but I got him in for sitting with me and reading. And it worked. Small victories.

5. We went to dinner with family last night, early enough that his medication was still working so it wasn't too much of an issue. But it was loud and stimulating again after a day of already having a lot of stimulation, so when we got home he couldn't relax. Too wound up. At 11pm, I finally convinced him that I needed to go to sleep and so did he. But it took a couple of hours to get there. Thank God we decided not to go to the fireworks that were scheduled for last night.

But all of that can be balanced by the following things:

1. He played a serious game of Go Fish with his cousin last night. He didn't piss anyone off because he refused to play by the rules or anything, he just played the game at dinner and interacted and was fabulous.

2. He built a playhouse for my neighbor yesterday. She was trying to put together a little kid playhouse outside, and he took the screwdriver and put that sucker together. The kid lives for instruction manuals.

3. In his winding down time of trying to sleep last night, he laid on the couch with me and watched a Marx Brothers movie. It's his best time of day when he's tired enough to not be ruled by impulsiveness or obsession. We've done this several times together, and it never fails to be wonderful. The whole house is asleep except for the two of us, and we watch Charlie Chaplin or Buster Keaton or even Joseph Campbell's Power of Myth lectures. He'll ask me questions about it and draw great inferences.

And that's just a weekend day. One of our goals this summer is for him to talk about some of this stuff, too. So I'm interested to see his take on yesterday.

With a big sigh, and if I can be totally honest, a lot of trepidation, we're staring down the barrel of summer.

My husband and I both work out of the house, and this is just about how summers usually go around here: Strong start, busy middle, cranky ending with a very long recovery time. I never seem to get any of my work done and end up being frustrated. Neither one of us has very much tolerance for chaos, so the unstructured days, while they sound great, end up playing havoc on our nerves as the kids run in and out.
But really, if ONLY Truman would run in and out. I can never get him out to play with the other kids. Navigating the intricate social structure of the pack of neighborhood kids is very tough for him, and he ends up preferring to just play video games. Alone. Every day.

Since I don't get much work done anyway in the summer, I've decided to really try to get out there with him this summer and help him figure out how to play with kids. How to do other things besides hide in video games. I don't know if it'll work. But what the hell?

Mom and I are reading Help! I'm a Prisoner in the Library. We went to the library this morning and I found this book on the 4th grade reading pamphlet. It sounded like a cool book. We read that the one of the girls had to go to the bathroom and it was an emergency, so they went into a library that was open for at least 5 more minutes. So they went up the stairs and saw something that looked a wagon with people in it, but then they saw a restroom sign which made them remember why they were there. One girl said that she wished that they could stay there longer. My suggestion would be that they come back tomorrow. We'll find out what happens, and I'll let you know.