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.