the pea and the pinball

I teach a birth class. The longer I do it, the more that I realize that I am teaching less about the mechanics of the event, and more about the preparation for the massive shift in perspective that is about to take place. Sure, I'll teach them about dilation and where the perineum is located, but I also send little pep talks out each week. In the pep talk, I give them a phrase to focus on for the week. After the first class, when I see the "oh shit what have I gotten myself into" looks on their faces, I send out a a reassuring note with the focus phrase: "I have no idea what's going on, and that's perfectly fine." I explain what surrender that phrase can bring when you're feeling the control freak in you start to control freak right on out. When you get overwhelmed thinking about all of the details that go into a birth experience, what a relief it is to know that your body knows exactly what it's doing, and in fact would just do it without your thinking interference. In fact, it might do it even more efficiently if our brains weren't meddling in the process and nitpicking every detail. It's more or less the equivalent of Step 1 of the Twelve Steps: Admitting that you are powerless in the situation and that some system that's bigger than you and your worrying is at work. If you'd just shut up and give in, the system might just do what it's supposed to do.

I don't know why I haven't taken my own advice up to this point. After all of the back pats I have received from the large support net that has shown itself since I began this endeavor, at the end of the day, it's just me and Truman. Some days that feels like a crowd. This week it really felt like a crowd. Ever since he was a baby, we have likened him to the Princess and the Pea. If one tiny little thing is off, by gosh, the whole household is going to know about it. But the cause might remain a mystery until all of the mattresses are pulled off and the tiny pea is revealed.

The pea this week was a super bad summer cold. On Tuesday, he was off - noncompliant and exhibiting what I call the "pinball" behavior - just physically bouncing off of things very randomly without any direction. On Wednesday he was tired and out of it and grouchy and had no impulse control. By Thursday, I too had that "oh shit what have I gotten myself into" look on my face since we had gotten no work done and I felt like I had fought roadblock after roadblock with him with no result other than we made it to the next roadblock. But by that afternoon he was sick. And just like when he was little, the little lightbulb dinged over my head, and I knew we had found the pea.

At some point in the mattress removal, the phrase "I don't know what the hell I'm doing." popped into my head. At first it was a taunt: " You don't know what the hell you're doing." But after it echoed around in there for a while, I realized that it was very similar to the phrase I send my birth class couples. So I changed it slightly, tacked on the ending, and it became a buoy: "I don't know what the hell I'm doing, and that's perfectly fine."

We're bobbing along trying to figure it all out: how to help his executive function, how to bring him up to grade level in math and teach him to write a paragraph on his own, how to get him to control his body and to find things that pique his interest in learning. It's a lot of ground to cover, and when he's feeling the pea, there isn't a thing in the world you can do to get him to join you in learning those things. All of his senses go into the pea with not much left over. I don't know how school has done it all of these years. I have had phone calls and emails from teachers a million times to tell me that they had hit an impasse with him and he seemed completely unresponsive to any kind of learning. Almost always it ended up being a pea of some sort, and once it was uncovered, things moved back to (his version) of normal. I know that the pea will make him unable to function, and I still don't recognize that that's what's wrong most of the time until I actually see the pea. If you were a teacher trying to get him to produce work on a very tight schedule, you might get a little frustrated. And if you were Truman, you might spend a good deal of time with people feeling frustrated with you.

I don't know what the hell I'm doing. I founder. We founder - Truman and I. But something in me tells me that we are not doing the wrong thing. Something tells me that if I shut up and give in, it actually all might be perfectly fine.

a universal shoulder rub

While the last few weeks have been a universal ass-kicking to put me in the right place to be doing whatever it is I'm doing, this week has been the equivalent of a universal shoulder rub. A giant Hand reached down out of the clouds, patted my hand and squeezed my shoulder reassuringly. The Hand did not talk, nor did it tell me what to do next (because hands don't talk, silly), but it wiped my brow, and then it patted a few angels on the ass and sent them into the game.

I live in a very traditional Catholic neighborhood, that's full of large families, and many of them homeschool. Jim and I are not Catholic. No one here has ever looked down on us or left us out. To the contrary, our daughter's best friends are those families' kids, and they know us pretty well as a result. I'm sure we've always been (not disparagingly) "those people who park their Cadillac in the yard" and "those people with the daughter with the blue hair and the father with the braids" and "those people who sit outside and listen to their jukebox loudly." But now we're "those people who park their Cadillac in the yard, have the daughter with the blue hair and the father with the braids, sit outside and listen to their jukebox loudly and homeschool their son." As Truman and I took our daily walk around the 'hood this week, I literally had people coming out of their homes handing me math books that their kids had outgrown and offers of help. I had hugs and pep talks. I had angels that didn't even know they were on the field. (Or maybe they did. Their line to the Hand might be more direct.)

I have had Facebook messages, emails and blog comments. I have had texts, phone calls and conversations that left me teary with gratitude. I've had people reach out that I had no idea had homeschooled at one time or another. All of them had different things to say, but all of it was usually pretty well-timed to my most frustrating and vulnerable moments (the Hand likes to show off, I think).

Truman is participating in a really exciting study through Vanderbilt's TRIAD, its autism research department, about the effects of oxytocin in autism and how it might help social skills. This will be a year-long study and require lots of visits and interviews. This week we went in for our first appointment, and Truman was feeling nervous. Even though we had been sent a social story that explained every single thing that was going to happen at the interview, none of which was scary, hospitals are just generally scary places to a kid. But the Hand, who must've been feeling pretty smarty-pants that day, sent in an extra special player to be the first face we saw at the appointment. One that I have known since childhood, and one with an extra special gift for making kids feel comfortable. Truman spent the rest of our time at Vandy that day feeling like some kind of movie star. You see, it's tough to be "that kid" for most of the time. And when you're at a place where all of the kids are "that kid" and the people who run the place think that "those kids" are quite interesting and in fact they study them and know how to talk to them, well, it just makes you want to go back. And in fact, you might ask your mom over and over and over when you get to go back even though she already told you that it might be a month or so but you keep asking just in case the answer has changed to maybe something a bit sooner because it was such an awesome place. See? Show off.

The Hand is cutting me a break at the moment. The Hand is giving me a refueling time. I can see the Hand's hand, and I think I know it works. It can't all be shoulder rubs all the time. There will be plenty of times when I will yell at the Hand to send a shoulder rub down because my back can't take much more, but the Hand will say that I'll have to do some shoulder rubbing for someone else who could use it a little more right then. In fact, I may be rubbing a shoulder right now and not even realize it.

For now, I'm stockpiling my universal shoulder rubs.

The practically impractical

The word "homeschool" makes me itch. It's right up there with "hashtag" in the irritation department for me. I don't know why entirely, and the reasons I do know I will keep to myself. But the universe, in its unwavering ways of justice, will almost always kick your ass when you say "never", or apparently even dislike certain words.

I don't blame my kid's school. In fact, I'm a very vocal public school proponent. I still have a kid at that same school, and she loves it and would wither like a picked wildflower if you took her from it and made her stay at home. I have a commitment to be involved in whatever school my children attend, and have served on more PTO boards than I can honestly remember. But his transitional year to middle school was more than tough. It took its toll on him, on us, and the whole household by the end of the year, and we knew that something had to give.

We don't have means to send him to a private school that would (possibly) meet his needs. Hell, we don't really have the means to homeschool him. But homeschooling means are less than private school means when it comes to nuts and bolts, and so here we are. I have put aside every personal project that I have going, which is almost always a considerable amount, and I am devoting myself to this one very personal project. It kept calling to me over the last year to come and tend to it, but I am not an educator of children. In fact, I don't even like most children who are not mine. I'm not logical or linear. I'm one of those liberal right-brain big picture thinkers who would like really just to sit in a cafe all day smoking cloves and drinking coffee while I made up stories. But like I said, the universe is an ass kicker.

My friend, who is a career educator and a former Montessori teacher told me that in the Montessori world, they call what Truman and I are doing a "practical life year." That really resonates with me. I just want to help him find his place - whatever that is. The stress of the last year of school really threw off his executive function and also his desire to learn. His confidence was low and falling by the end of the school year. His stress level was growing. He would melt down at the slightest perceived slight, and our household was on eggshells. Over the summer we saw a dramatic improvement, and it was hard to think that we could send him to school again and endure another year of watching him crumble.

What I have come to find with him is that where you can teach "normal" kids life skills on the fly as you go about your day-to-day and run in and out of the door to school and activities, that's not how it works with our particular model. And he certainly doesn't learn with the throw-and-see-if-it-sticks way that public education almost has to be given the number of children and diverse population of needs it serves. It takes an almost constant one-on-one to engage my particular kid in learning and in just getting him to do small life skills. He seems quite average and normal, and so the expectations of him, no matter how many points you put into his IEP, end up being higher than what he can actually carry out. We don't qualify for an aide, so we have to rely on what is written in the IEP. And what school can really carry out an intricate IEP for every kid that has one? It seems an impossibility. And in our experience over the years, it was an impossibility with him, for he changes all the time. What worked one day or week might not work the next. And with the handed-down-to-Moses on a stone tablet nature of IEPs, it makes it tough to be flexible and accommodate a guy who doesn't fit in framework of paperwork very well.

Our family has never been, and never will be, practical, which makes it tough to call this a Practical Life Year in the true sense. But I do solemnly promise to do my best with my kid, through good and bad, teach him the ways of the world as I know them, and give him an education as best I can until he is at the point he can do it himself or I lose my mind, whichever comes first.

And so begins our Year of Impractical Life. Wish us luck.

My Neighborhood - The Panorama Project

From Truman's Dad:
Truman's mom had a dream one night and this is what it became.

Today was pretty, so Tru and I thought we would hit the neighborhood and attempt the project.

A Guide to My Neighborhood

This is my pool. It is fun. It cools me off.

This lady (Marylin) works at the JCC. This is her dog, Major.

I love this zip line in my yard. 

This is the JCC. It's down the street and fun!

This is Sarah. She is always nice to me.

This is my friend Andrew's house. Wii play Wii together.

This is the Collins' house. My friends live here.

We ride scooters on this street.

The Heart of My Neighborhood
The heart of my neighborhood is my house.
I feel safe here, and it's my home.

The Weird Place in my Neighborhood 
The place is where the Vaughns are buried. It's very old.
This place makes me feel weird. This place is also very cool. 

Extra Credit
 Truman met old man Vaughn in his front yard and learns the history of Vaughn's Gap.

the le petomane thruway

If I had a dime for every piece of paperwork I have had to fill out for Truman, I might not be rich per se, but I'd have a shitload of dimes. Enough to get us all through the Le Petomane Thruway.

Frequently, I have to fill out pages upon pages of mind-numbing paperwork for him. Someone is always wanting to know what seems to be the very same information that I just filled out pages upon pages of paperwork for for someone else. And you can't let it be mind-numbing because you are basically charting the course for your child's life as you fill it out. You can't get sloppy and mark all Cs like you did on the achievement tests in school, cheat off your neighbor or just put your head down on your desk and give up. And the difference between an answer of "yes" or "no" might make all the difference in the world, but you don't know what that difference is. The shades of answers get so confusing that they have to have a key at the top of every page. The questions kind of sound like this: "Think about the answer and then mark the response that most accurately represents the behavior your child has exhibited in the last 30 days (except on weekends or holidays). My child has a difficult time expressing himself verbally but not emotionally during periods of stress that don't include when he is tired but do include when he is exasperated, at home only and not at school a. never b. sometimes rarely c. frequently periodically d. always during holidays or e. mostly. If you answered 'mostly' make sure to provide a complete handwritten page (on reverse) of very specific examples that occurred during your child's 14th and 17th month of life. Then move on to the essay questions of section L."

And pretty much all of them are that way. Or it least it seems like it. I always wonder who reads these. And why is no one sharing information (even within the same institution)? Because every time I talk to anyone, it's a guarantee that there will be a folder of these to fill out. I have to fill out a whole behavioral survey every time we see a doctor. I finished the above paperwork this week (approximately 5 hours' worth), and then promptly received an 8 page survey in the mail in anticipation of his every-few-months Vanderbilt appointment coming up.

The picture above is of this week's batch. It's for his upcoming re-evaluation and IEP annual meeting. Eight booklets, all asking pretty much the same questions, sometimes within the same booklet, in different words. I have filled all of these out before. Even though Truman was diagnosed through TRIAD two years ago (considered the "gold standard" of autism testing), and even though psychologists and psychiatrists have been bandying about the autism diagnosis since he was 3 years old and giving him temporary diagnoses in the meantime, and even though I have filled out enough paperwork to insulate the walls of our entire house, MNPS has its own standards of what autism is and is not. When I turned in the diagnosis to MNPS two years ago, they declined to add it to our IEP because it wasn't their own.

But I'm a little worried about public middle school and how it'll work for him, so I want to make sure all of our IEP ducks are in a row and that all of him is included in it. And to do that, it has been determined that EVEN THOUGH we have all of that great information about him, he has to be completely re-evaluated as if it's the first time ever, using MNPS's own criteria.

It's exhausting. It's like fraternity hazing minus the fun part of getting drunk and throwing up with your new-found friends. I'm lucky that I'm in the fortunate position to be able to spend hours filling this paperwork out and thinking about it and fighting the battles. I'd love to know how many kids are out there who have a parent who doesn't have that luxury and who don't get through the thruway.

If ADHD is such a problem...

Why is no one doing anything about it?

I have a friend who was recently told that her child had attention problems at school. He's an incredibly bright, happy, 2nd grade kid and an only child who makes straight As. His mom was, of course, immediately concerned. I mean, in spite of his grades being stellar, here was her kid's teacher - someone who sees lots of kids every day; an authority in the eyes of a parent - telling her that her kid had problems with focus. Nothing, but nothing, will make you sit up and take notice, lose sleep and google like a maniac, especially as the parent of a young child, like a teacher singling out your kiddo as the one with problems. She knew that he got frustrated by distractions and loud and chaotic work environments (who doesn't?) but she was unaware that it was unique enough to her child to merit mentioning. His school work is great, he has friends, he likes school and his teacher... it was a little bit of a shock. When my friend asked what to do about it, she was told by the teacher that exploration of attention problems usually starts with the child's pediatrician.

I remember going through this same thing with Truman. His issue wasn't just simple distractibility, not just the AD (though that's there, too); his problem is the H. If you ever want to be driven slowly (or quickly, depending on your tolerance level) insane, come to our house after 3:30pm and stay through homework, dinner and bedtime. If you ever were a doubter of the existence of ADD or ADHD, you'll leave our house a believer. You'll more than likely slowly back out of our door when your time is up, wish us well, maybe even offering up a little prayer for us as you wave goodbye, and then turn and run as fast as you can for your car so that you can get home to a space where no one is talking incessantly or climbing furniture or crying because the mere thought of reading 15 pages of social studies is just so overwhelming that they can't read the first word; where there's no science fair project to (quite literally) fight your way through or simple math homework that will drag on for hours until you wish your kid would be OK getting along in the world with just a 4th grade education just so you would never have to do this goddamn math homework ever again. A quiet place; one where there's Downton Abbey on the DVR and a glass of wine from a box. I'll give you a wan smile and a friendly wave from the porch. I get it. I'd run with you if I could, but I have to be here when we repeat it all again tomorrow night.

What's a pediatrician - a person of medicine who is not a specialist in mental health - to offer such a kid when they face these parents who have been told by a teacher that their child among all others, has a deficit of attention? What's a teacher to do when she has a class full of children that she has to get through not just day-to-day stuff, but testing, which now reflects how her own job evaluation? You can guess that it's not long, caring, involved classroom strategies and behavior modification. In our case, we were very hesitant about medication. And we were on the receiving end of a lot of "well, we can't do a lot otherwise. Let us know when you're ready to start meds" conversations.

It's growing, for whatever reason. I was just reading this morning about the rise in cases in California.  How I feel about how quickly we turn to ADD/ADHD medications is another topic altogether. How I feel about medicating my own child is even another. If I keep rolling the topics backwards, one is just a bandaid on top of another until we reach the core: What the hell is ADD/ADHD? Why do so many kids "have" it? What's causing it? And what are we going to do about it that isn't just medicating the kid?

Autism is something we can put a finger on and recognize the symptoms of (mostly) easily. It garners sympathy and help and research is available. ADHD is almost the dirty little secret; a shameful categorization, and medicating your child for it, even though the pressure to do so is most certainly there, is even more so.

I don't have an answer to this. And hell, I have to go fight my way through a highly inattentive and hyperactive breakfast and school preparation. But I put it out there to the universe at large - do we need to change our thinking fundamentally about what human behaviors are "normal" in children? And if not, do we need to maybe look further into what is actually causing brains to wire differently rather than to re-wire them even more differently with just medication?

I is for Intensity

In the Truman ABCs, "I" is for "Intensity."

One day it will serve him well. It will make him a captain of his chosen industry. It will make him able to solve tedious problems that you and I would hire someone else (like him) to solve for us. It will make his future spouse enormously happy that he can search for car keys for hours until they are found and absolutely batshit insane for the same reason. It's a mixed bag.

As I sit here reflecting on his Intensity, I want to say what a wonderful quality it is. But after a day like yesterday, one after which I'm left feeling a little like a wrung out dishrag, it's hard to dredge up the love for Intensity.

This is how yesterday went:

1:30am - Truman up for the day. He doesn't sleep well. If you ask him, he'll say he doesn't sleep at all which is entirely untrue. I think. He goes to sleep, it's just in the staying asleep. If he wakes with an idea in his head, it's very hard to get it to stop again. I try for an hour to get him to go back to sleep, rubbing his head, turning off lights, tucking him in, getting him milk, but after an hour of no luck I...

2:30am - Make him breakfast. He is on medication during the day that kills his appetite. Luckily, his body makes up the calories when it can so that he's growing normally. Not so lucky - it's usually in the middle of the night, one of the reasons he might wake up at 1:30am and not be able to go back to sleep. I make him frozen pancakes, sausage, strawberries and milk, and he tries again to go back to sleep. It does not work.

3:30am - I have limited him to only being able to read in the middle of the night if he's awake. There is no book he wants to read, except for that one book; the one that's in his sleeping sister's room. I quietly do some searching in there but can't find it, which is, in his Book of Intensity, an unacceptable answer. He comes out of his room every 5-10 minutes to check the time and complain. For such a little kid, he can stomp around like nobody's business, which leads to...

4:30am - His sister wakes up because of all the stomping and complaining. Now that she's up, he wants to go into her room and find the one book that he's sure is in her room. I have forbid him until now since she was asleep, but hey, since we're all up now, knock yourself out, kid.

5:30am - Two kids can't sleep. One is crying now because predicted snow did not arrive. Both are standing over me in my "office" (which at one time I attempted to move downstairs to a quiet little room of my own so that I could close a door and light some incense and get some work done. I have since had to move it back upstairs so that I can both work  - kind of, seeing that this space has no doors and is in the middle of Stomp and Complain Central -  and moderate the stomping and complaining that might wake up the rest of the house on any given night; something that has proven fairly unsuccessful on tonight) as I try to answer some emails since I am up in the middle of the night with at least 4 full minutes to kill between either a stomping, complaining or crying episode.

6:45am - Time to get ready for school, which is its own post for another day and involves intensities specific to a sensory challenged kid that revolve around Nutella, sock choices, hair combing, belts, zippers, jackets, backpack weight, toothpaste type, breakfast, the cat, the temperature, the car, the ride to school and medication timing. Thank God for Standard School Attire, is all I can say.

8:30am - 10:15am - I go back to bed. What? I'm 44, not 24. I kind of doze, the way someone can when they are sleeping completely against their circadian rhythms, until the phone rings. And rings. And rings. With calls from people who have normal sleeping hours and expect others to have the same.

11am - First email from school, which says that all is fine, but... just wondering... did he have his medication today? In my book, no news is good news. And when you say all is fine, I take that to heart and move on. No scenes? Meltdowns? Excellent. Let me know if so. Otherwise I've got a...

12pm - 3pm - Doctor appointment with Mr. Intensity. Our obstacles here are - elevators vs. stairs, a parking garage, waiting times, nothing to do during the waiting times, and a nurse who has heard of autism but clearly fully doesn't understand what it entails as she asks him to remove his shoes or not to touch the buttons on the scale and is openly judging us both as he breaks into our conversation repeatedly to ask for a screwdriver or a coin to remove a battery cover on the baby toys that they have oh-so-carelessly let run out of batteries. He's appalled. And undeterred that the nurse and I are carrying on a conversation that doesn't include us trying to find a screwdriver right this very second.

4-5pm - Homework. That's really all I can say about that without breaking out in a PTSD rash.

5-6pm - The most interesting part of Mr. Intensity's day. While I try to make some phone calls, he suddenly finds that there is a drawer directly next to me that is filled with cables, chargers, and all kinds of computer-ish odds and ends. While I'm on the phone, he demands to know what each item is and why I haven't told him about it before. I cover the phone and remind him of what we do during phone calls, but he has got to know Why? Can he use my computer right that very second so that he can find out what this cable is? What is the end of this one? Where's the flashlight so that he can go explore behind the television to see if this is something he could possibly use to hook up one device to another? What's that flashing green light on that box behind the TV while we're at it? Between phone calls, I hook him up with another computer so that he can do his research. By the end of the hour, and 27 trips downstairs to ask Jim questions, he knows what each one does. He would like to know if we have more? And can he look at those?

6pm - 8:30 - The medication has fully worn off. The festivities kick off with dinner (food issues, staying seated, actually eating while not eating like Helen Keller: The Early Years), not going into his sister's room fully nude with an inflatable guitar, not doing Parkour in his bedroom, not hooking his TV up to an amplifier, not kissing me over and over (it's not as nice as it sounds after the first 50 times) and not flushing a pound of ice down the toilet at once. I'm sure there are a few I'm leaving out.

9pm - He's asleep. If I'm very lucky, he will sleep through the night. If it's one of several nights a week, he will wake up at around 2:30am asking for breakfast and the whole thing will start again.

I remind myself frequently that he's 9. That one day he will be 29, tall, amazingly handsome, probably unable to make his bed and driving some poor person batshit insane with his intense need to do something right that second, but making a ton of cash because he is intense about something that the world needs, and he won't stop until it has been solved or invented. It won't be because of his altruistic nature for sure. It'll be because just like my drawer of of cables, it has to be figured out and he has decided it is so. There is some kind of beauty in that. It's not conventional, and the reasons behind it are not the reasons most of us have, but there is something to it.  I think. I hope.

It's just one long and intense day at a time to get there.