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.