Training the para

Yep, apparently the majority of the training of Joey's new para is falling on me. So I put together an awesome powerpoint, starting at the beginning ("What is autism?") and tossing in all sorts of awesome tips for Speaking Joey. He actually had a decent day on Friday. I should do this a few times a year!

The first thing about my Speaking Joey guide is to remind the viewer that they should toss anything they picked up from pop media and culture about autism. None of it really applies to Joey, or not in ways you expect if you are stuck in the pop media model of what autistic people are like.

Dr. Grandin's idea of thinking in pictures and attaching every example she has ever seen of a noun to that word may seem a fascinating insight about autistic people- and it is. But with Joey, you need to apply that not just to word labels. He uses this technique of filing every word and sentence and paragraph he's ever heard or seen, and using them as placemarkers in language. When he needs a word or sentence, he zips through his catalogue and comes up with the one he wants, and puts in the relevant words as needed. The result at least sounds relevant, if not exactly what you would expect him to say. If he has no sentence in his arsenal to use, what comes out as he tries to construct one himself is an odd word-salad that has to be untangled.

Autistic people are often portrayed as needing sameness and ritual. This is mostly true. But for Joey, that translates to needing to know what is coming in terms of what the activity will be, when it will be, and who he will be doing it with. He tolerates subs at school really well if I know the night before that there will be one. He likes routines in his days as most kids do. However, when there is a sudden change, he can't process and recover as quickly as most kids.

The presentation goes over how to keep Joey participating and coping smoothly. Safe spaces, breaks, maintaining engagement/avoiding boredom, paying attention to his cues and communication style. It then goes into what to do if something goes wrong- how to handle different kinds of meltdowns, different types of bolting, and how to redirect him and de-escalate a situation. He goes through his strengths and specific issues, his likes and motivators, and things that we, as his parents, just know to do and say and think about, every minute of every day or every situation.

I understand this has now been printed out, studied, and distributed not only to the new para, but to all his teachers, with plans of distribution to the admin.

I should do this a few times a year. He had a fabulous Friday.

Wow, a first!

We were selected in a list of awesome autism-related blogs by Kwikmed.org! We've never been included in that kind of thing before! And it looks like I am in excellent company- whoever their judges are have good taste in blogs. Check them out!

Then a Storm Blows Up

I was really looking forward to tomorrow.

I've been running about like a crazy woman who beats up turkeys with santa hats, getting kids settled into school, getting new speech evals and OT sessions and appointments for more evals. Also, teaching classes and trying to get stuff up in my Etsy shop. And clean my house, which still looks like a tornado blew through after the bomb went off. Oh, and there's baseball. And my ETS job. And some other stuff. And trying to get Joey transitioned. Yay, me.

Tomorrow is the first day I was really going to take some time off for just me, doing me stuff, while petting cats. The morning would be spent working my ETS job, and then the afternoon I was going to sit on a couch, playing autumn favorites like Disney's Ichabod Crane and maybe a bit of Harry Potter or Fellowship of the Ring, I hadn't really decided yet. I was going to finish making hair scrunchies and maybe bake some cookies. I was going to clean the front hall.

And none of it is going to happen.

Instead, I will be at school, sitting in on Joey's math class to figure out what the cow is going on in there. He keeps bolting from it- sometimes twice in a single lesson. The new para they tossed at us yesterday, without warning, has no experience with autism or even working in education (her parents, yes. Her, no. Apparently her college degree is in business). I feel for her. She's about to have an unhappy parent come crashing into her life on Day 3 of her first real job ever and give her what-for. That's what happens when your boss tosses you into a job when a child's safety and life are on the line, without training you, transitioning you, or even informing your new co-workers that would be arriving. Talk about "no support." Sheesh, poor girl.

My first priority, however, is my Joey. He needs appropriate support available to him at all times, and he needs it three weeks ago- well, five months ago, actually, but let's start with where we are. If he can run out of a classroom and across a hall, he can just as easily run out a door to the parking lot. He needs his academics to be brought back up to par. We started at this school reading four grade levels high; now we are "below basic." They never bothered to hire an autism specialist for the school, they just borrow the one from the lower elementary.

I can't let him lose more time- academically, functionally, emotionally. We're already trying to dig our way out of the pit he's already fallen into. We've worked too hard to let him down now. He's worked too hard. Ichabod will have to wait.

Things That Don't Wax In The Night

Welcome to a new school year. Andy is transitioning OK to his new (rocking!!!) teachers. We've had a little trouble getting them to understand that "dygraphia" means "please don't send home long writing assignments or you will drive both he and I to eat large quantities of ice cream all night", but other than that, we're good.

Joey, on the other hand, is in the grips of anxiety. Everything is new again. New teachers. New schedule. New para support. Autism program only twice a week instead of every day. Lots of new testing. He has all but completely refused to have anything to do with books. He will let me do small amounts of reading to him, but his auditory processing and focus means we have to read passages several times before he grasps what is going on, and that drives Andy to distraction ("Mom! You've read this part FOUR TIMES!!!") I've gotten him to read one picture book; aloud, but independently, and one page from Encyclopedia Brown. Both are books I know he can read easily. The problem is something else.

One facet is definitely the Anxiety Monster. One night this week, he was up and down, in and out of my room all night, to the point I woke up and asked him what was up.

"I didn't throw up on anything!" was his cheerful reply.

Yeah, you bet I was up in a hurry and checking bedrooms, bathrooms, hallways... but no sign of waxing. He said he didn't feel sick. He tried to sleep some more. I listened to him toss for a while. Then he got in bed with us, and tossed for a while. That brain must have been going like mine- a mile a minute, revved to the full. I could nothing more out of him to help try to ease whatever is bothering him.

The next night was the same story, with the same proud explanation: "I didn't throw up on anything!" Naturally, this makes him tired at school, so this week has been even worse than the last two- which have been predictably roller-coaster wild.

Then the Anxiety Monster struck at school.

Math class. Joey's best subject. No one really expects him to freak out in math. However, boredom is not our friend, and we have a whole new crew who are not used to speaking Joey, and without the excellent team communication and ready resources we had last year. Joey had the work done before the teacher had even finished explaining the lesson, and there was nothing else for him to do. Naturally, he started messing with stuff and getting into things, and so was told to stop. With nothing else to occupy him, and stress already at the full, he melted and bolted. The new para (who is a sub while we look for a new para to replace the one who was dangerously bad at the end of last year) leapt into action (yay!) and managed to cut him off from exterior doors. He ran to the principal's office.

This used to be a safe haven for Joey. The principal we had in third grade had football stuff all over his office, and Joey found that comforting, so he soon started running there. The old principal even had a little pillow and rug for him, in case Joey needed a corner while he was away from the office, which was totally so cool of him. But this principal doesn't do that. Joey didn't really need it last year, he was pretty comfy in his classroom or the autism room (which doesn't exist this year).

Joey hit that office, had no corner, and lost it. Loudly. With choice colorful metaphors and words. An admin tried to step in, and Joey responded by saying he was going to shoot him and kill him, so there was talk of suspending him. (Hey, folks- most stuff geared toward ten-year-old boys involves guns. You know, cops and robbers, cowboys and Indians, Star Wars, G.I. Joe... what do you EXPECT an echolalic child to say when he's upset with you???) They had him corralled back his classroom by the time I arrived, grumpily shouted at all and sundry to... well, to suck his balls. A glorious term he picked up from one his classmates last year.

And now, I think the new team knows what I mean when I say, "boredom is not our friend."



Meanwhile... JoeyAndyDad and I have been stressing over the coming of Middle School. Yes, a year away. Yes, already trying to figure out what to do. We crunched numbers to see about homeschooling, and that made us feel like we had an option, though it would mean a major shift in how and when I work, and for which jobs. But it is an option- perhaps an important one, because as he gets bigger, people no longer think the echolalia is cute. They understand it less, and have less tolerance for what he is saying. Joey is big, he's smart, and people readily forget what his disabilities really are. He appears to speak so well, you can forget all that good grammar is echo and script. When he uses a script someone doesn't expect, it can be startling. We worry about it being catastrophic. If he gets to middle school or high school using words that sound like a threat of violence, we are going to have a huge, huge problem on our hands. If he lashes out at someone like he lashes out at me, we'll likely have to homeschool, anyway.

Am I really ready for that?

So I've been spending a lot of nights listening to the wheels rev in my head, like wheels stuck in the mud; listening to a boy who is not throwing up on anything, creeping in to find some comfort in Mom and Dad's bed, trying to find some rest.

Because Stimey Rocks My World.

Watch this awesome woman talk about her son, Jack, and how he is just as awesome as he is.

"Not Even Wrong"




If we all work together, I bet we can make a world like this. Or at least a nice comfy corner of it. For Jack. For Joey. For Sam, and Quinn, and Andy. And for your loved one, too.

Walking the Tightrope

Middle school is coming.

Joey started the fifth grade this year. He's ten years old. We have long been in the process of preparing him for the next step, the dreaded Middle School, where kids get nasty, life gets harder, and social circles dominate the school life. As such, my ears have been pricked up more than usual for stories and information about autistic and other disabled pre-teens and teenagers, especially how they are spoken of and perceived. Fortunately, I am not reliant on mass media, or I'd be running screaming into the night.

Uneven development is often mistaken for far greater disability than it actually is. When I see masses of comments about autistic people "with the mind of a 5-year-old," I worry- there are far too many of those comments. Yes, intellectual disabilities do appear in autistic people, just as they appear in people generally. On the other hand, I still have a book I received from the doctor's office when Joey was diagnosed, saying that 75% of autistic kids are "mentally retarded." I realize now that this is how we feel about people who communicate differently and develop differently- whether they have actual intellectual challenges or not.

I got Joey's SOL* scores yesterday. I don't understand them at all. We are talking about a child who, at the start of the third grade, passed the end-of-year tests in math for fourth and fifth grade, and yet barely passed the math SOL. His reading score... the child who can read anything... "Fail- below basic"(yes, that's very bad). History? Fail. He can recite all the facts about Jamestowne at me, but can't pass a test on it. And why?

Well, since understanding questions and how to answer questions is one of his major issues, that could certainly explain it. His differences in communication and language use make learning to take tests a serious problem. When you have a variety of ways to "show what you know," you have more opportunities to prove you understand material and can apply it. When there is only one way- and one you find particularly difficult- then what you show is that you are not very good at that testing format. (Yet his school's funding and his teacher's pay are both tied to that testing format... something is very wrong here.)

Joey stands out socially, too. Everyone knows Joey. He's a cheerful, friendly person who likes to connect with people.** We have already seen both the good and the bad that goes with his semi-celebrity at school. Most of the kids know him, and he is very likable (hard not to like someone who greets you with cheerful smiles and fusses over you like a mother hen if you get hurt). There are the bad apples who think he is funny (not in the good way) and taunt him, teach him foul language, and try to get him to exhibit his deficits for their own sick amusement. My job is to teach him how to identify these people, avoid them, and manage himself when they try to bully him.

But there is something more, harder to lay your finger on. He is not intellectually challenged, but his emotional development is definitely different. Other ten-year-olds run around playing active, dynamic pretend play- with boys, that tends to involve guns and bad guys. Joey's idea of a "bad guy" is a Thwomp. Ten-year-olds around here are into  Transformers and Star Wars and fancy video games. Joey is in Mario Brothers and Angry Birds, but more in the way a younger child might display such a liking- imitation, echolalia, and obsession. For example, most ten-year-olds do not wander about the house and the grocery store in a full Luigi costume. Just saying.

Most ten-year-olds are also not interested in hugging their teacher. Or quoting Little Bear. Or actively giggling hours upon hours about Shaun the Sheep. Most ten-year-olds read chapter books, like The Wizard of Oz or How to Eat Fried Worms. Joey isn't interested in all those words at once (I still think if I put one sentence per page, he's read them fine). His friends are noticing. The world is noticing.

We are entering an age when Joey's volume control issues and repeating are getting more stares than knowing smiles. He's grown out of many of the "oh, well, my little one does that, too" comments, because Their ten-year-old stopped doing these things when they were six. Why does it bother people to have a ten-year-old in the grocery store telling his mother about a Mario Brothers Level by reciting it step-by-step? What was cute when he was four is no longer "cute."

But it is who he is. We have come to the point of the tight-rope walk, balancing social acceptance with comfort. We all have to wear fancy itchy clothes sometimes, because it is expected that we not show up at a formal occasion in a t-shirt and jeans. Yet if the clothes are too itchy, the occasion becomes not just a chore, but torture. How to balance comfort with expectations? How do we balance out teaching Joey what is socially appropriate without squashing who he is?

It is a knife's edge in parenting, and in growing up. Andy seems well-balanced on it. For example, he loves Timmy Time, a preschooler show. He finds it funny and comforting. But when choosing items to take to school for show-and-tell, he chose to leave his Timmy doll at home, telling me he knew quite well it was a "baby show" and that it might be embarrassing to talk about it in front of his friends. Then he sat down and gladly watched it. Hey, I still love my Disney movies, and I'm 40. But I also know not to dress up in a blue Cinderella dress and dance around the Walmart singing the Work Song at the top of my lungs.

If I think this is a narrow path for me to tread, I can't imagine the anxiety it may be causing Joey, or about to cause Joey... if I let it. He is the real tightrope walker, I'm just down at the bottom holding the net.

And my breath.




*SOLs are "Standards of Learning", the standardized testing for our state.
**For folks new to the blog, yes, you read that correctly. He is autistic, and likes to connect with people. He always has. And before I get a mountain of "he must not be autistic!" email and comments, I recommend reading our blog, and allowing me a pre-emptive "bugger off" to those comments and emails. Joey is autistic. If this statement bothered you, you need more exposure to and understanding of autism.

New School Year Approaches

Most of my friends have sent the little ones off to school again, but I have until tuesday to get my act together, as case manager for two. Here's my to-do list for now until the end of the first week of school:

1. Buy new supplies for management: 2 3-inch binders, two packs of sheet protectors, 2 packs of dividers, 1 pack of post-its, 1 pack of pens, 1 pack of pencils, 1 sharpener, 2 composition books for phone/meeting logs, 2 composition notebooks for school-home communication.

2. Set up this year's binders with copy of birth certificate, IEP, and latest evaluation reports, each.

3. Attend school open house, and firm up the teacher assignments.
  a. ask who is the case manager this year, each.
  b. note teacher contact information: cell phone, email, telephone, home contact info.
  c. note other adults in classrooms, such as paras.
  d. note daily schedule for each child.

4. Make appointments to meet with each teacher (Joey usually has 3 or 4) and make sure everyone is on the same page.
   a. Make sure Joey's teachers are aware of bolting and meltdown issues.
   b. Make sure teachers for both children are aware of language and speech issues.
   c. Make sure Andy's teachers understand his need for snacks and eating issues.
   d. Make sure Andy's teachers are clear about dysgraphia and what it is.

5. Check over IEP, each, and note changes from summer.

6. Arrange IEP meetings for each.
   a. Have powerpoints ready and up-to-date for both children, with copies to leave with teachers.
   b. Have "help manual" ready for Joey's teachers to deal with bolting and meltdown.
   c. Update goals and needs for both children.

7. Call Middle School and begin transition process for Joey for next year.

Then I'll get started on Week 2.

More Beach

I have a serious ear thing going on, so I thought I'd give y'all some more beach pictures while I get it cleared up. 

You're welcome. 

Beach

Yeah. That's what it's all about. 

My Son's Life Is Worth Saving

Why do hospitals and people without disabilities so firmly believe that people with disabilities are somehow "less"? That they don't deserve to live their lives, just because those lives are sometimes different from their own? Why do I have to sit here in fear that Joey might one day be denied a life-saving medical intervention, simply because he is autistic? That is a mistake that you can only make once, and you can't take it back.

Please support Paul Corby and his family, friends, neighbors, and community, and send a crystal-clear message that denying medical intervention because of disability is wrong, intolerable, and... well, it is evil. Pure and simple. Sign the petition and take a stand against discrimination.

And this is not just random discrimination against a faceless other. This is direct, horrifying discrimination against my own son, my Joey. If this happens to the Corbys, it could happen to us- and happen that much more easily.

This is a life worth living, and a life worth saving. I have dedicated my own to both of these beautiful lives. Please help make t unthinkable to deny these lives a chance, because of discrimination and ignorance of autism.

Please read another family thinking of Paul Corby and his family. 

Another post to support the Corby family. 

Descriptors

Mountains are not mountains...

Mountains are mountains. 

                          -from Zen Master Dogen

I walked into the OT office to bad news this morning. The social skills groups my guys have been in for the last year are no longer considered "occupational therapy" by the insurance company- they have to go private pay only, because they are now considered "educational." But trying to get the school to pay for this "educational" but vital program is going to be... impossible. According to them, Joey gets plenty of service already- and certainly "appropriate." And we have learned how far "appropriate" and "adequate" are from what we consider the definition of either term.

We find ourselves in a war of semantics and a labyrinth of language. Part of the problem is how people view Joey and autism, and the goals different folks have for him. We always make sure to include our long-term goals for Joey in our IEP presentations: we want him to be happy, we would like him to independent, we want him to be able to live as an autistic person in what is a non-autistic world and be able to self-advocate. His therapists want him to be able to self-regulate, communicate, and move. His teachers want him to be able to read, to write, to be able to consider concepts and analyze information effectively. These may all seem like worthy goals- more or less- but they are all our goals for Joey. That is an important distinction. Keep that in mind for a moment.

Because Joey speaks and has made solid progress towards all of these goals, he has a number of labels added to him, in reference to autism. Mildly/Moderately autistic. High functioning. Low impact/mildly or moderately effected. With these labels come judgements, comments, ideas. And though some, such as "he is doing well!" seem benign, I sometimes wonder what kind of value judgement that entails. Does that mean a person who is "severely effected" or "severely autistic" is not "doing well"? And what is "well"? After all, we had an entire year of regression and missed goals, from which we have never recovered. When I see how children around Joey's age function, act, and respond, and see what Joey can and cannot do, how "well" is he really doing? Or am I drowning in another morass of labels, semantics, and language?

After all, Joey is Joey. He develops at his own pace, in his own time, and I'm just here to help as he needs it. And like my buddy Snail, he does things in his own Joey way. He's been Joey a long time now, he's gotten pretty good at it; but its nice for him to get help when he needs it.

So how much does help does he need? And doesn't that depend not on my goals for Joey, but Joey's goals for Joey? At what point do we transition from raising a child and helping them form a plan, to the plan they form for themselves? I worry when I see other fifth graders who seem to be able to self-advocate and have goals for themselves, and I'm still trying to play the super-sleuth in figuring out what Joey thinks, feels, and understands. I worry about getting caught up in words and goals and losing sight of Joey being Joey.

Because Joey is not the words, or the goals, or the thoughts we have about him. He is himself. And that is a very important distinction.

More New Designs!

Another new design for the Bazaar- also with white lettering if you want the dark shirts and stuff. 

New designs!

Two new designs for the Joeymom shop!

Then the Day Comes When...

I was upstairs for a few minutes; I had been playing with Andy, looking at "silly kitties" on the computer, part of a lazy Sunday. We don't have many of those, so it was just nice. Andy bounced downstairs, I checked into my online life and went into the bathroom to start dressing.

Andy popped back up. "Where's Joey?" he asked. I don't know, did you check his room? Is he in the bathroom? I replied something to that affect.

"Joey!" Andy called, as I finished up business. "He's gone!"

Still unperturbed, I headed out to peek into his room myself. Andy had gone back downstairs, and started wailing, "Joey's gone! Joey's gone!"

The front door had the key in the lock, and was open. He hadn't slammed it behind him, we would have heard that. He was just gone, his game still playing its music.

He was just gone.

JoeyAndyDad lept into the Jeep and started tracing the path to the pool- the path of greatest danger, as it had water on the other end. Andy and I called for a moment outside. How long had he been gone?

"Andy, when did you see Joey last?"
"Downstairs on his game."
"When, Andy? When?"
"He was downstairs!" Andy was getting scared. He knew this was not good.
"Was he there when you came upstairs to watch kitties?"
"Yes." OK, so we were talking in the 5-10 minute range. It was still too long. We hopped into the van and made the block, the second favorite path of frustration. He was no where to be seen.
"Maybe he went to D's," Andy suggested, a great idea, only two blocks over. We drove over and knocked at the door, but no luck, he wasn't there. I called for reinforcements in the form of Mr. Wesley,  then the police. Time was of the essence.

There is something surreal in giving a description of your child to a police dispatcher. How tall is he? Weight? What is he wearing? Autistic- how will he react to police officers? Will he yell? Will he run? Is he violent when stressed? Does he have an item he would find comforting?

I managed to get a bra on while I was talking, I have no clue how I managed it. I ran back down the stairs with instruction to call again if he was found. After giving Andy the job of searching the house again, more to give him something to do than with any hope, I stood outside on the sidewalk, caught because I had Andy and couldn't search, couldn't leave him. I called my mom, she could come watch Andy while we searched. The path to the park was being ridden now by JoeyAndyDad. Wesley was canvassing the downtown grid, as he could have gone anywhere at this point. Twenty minutes. He had been gone twenty minutes!

And then, as I was telling my mother he was missing, the nightmare ended. I could see him, at the end of the street, he was walking towards me. Where had he appeared from?

"I see him! I see him!" I told my mom, and ended the call, walking towards him; but Andy! A neighbor was outside. I asked him to make sure Andy didn't leave the house, I'm not even sure he understood me. I stopped; Joey had sat down. Was he hot? Did he see me coming and melt completely? Would approaching him make him run, or encourage him to come home? He started walking again, I met him, asked him where he had been.

"I got lost, so I came home," he explained as if nothing unusual had happened. He babbled about his game.

"Good job," I said, emphasizing the positive, "Good job coming home, buddy, that's what we need you to do if you get lost."

The police officer was waiting for us, and as I stopped to thank the neighbor and call JoeyAndyDad and Mr. Wesley, the officer chatted with Joey, praising him for coming straight home, too. He had JoeyAndyDad take Joey into the house. He was safe. He was home. 


We got the name for Project Lifesaver in Fredericksburg. "You may not remember me," I heard him say, "but I was the officer who came a few years back, when Joey had to go to the hospital." When Joey turned blue. Yes, I remembered the face. He told me the department was aware of him- I had taken him over to the station and explained Joey a little to the officer who was there. He asked again about comfort objects, about the stick Joey was carrying. Now they knew he was a bolter, it was definitely time for a tracking anklet. "We can find him in seconds," he explained, giving me the card. "She comes on at nine. Just give her a ring."

Because now, we know what the trigger was, and he's still young. We know his paths. But here comes adolescence- and we may not know what is going on, and why he goes off. He may not know himself. We are going to work on setting some of his frustration paths a little more, but ultimately, he's going to go his own way. And while he remains vulnerable, we need to be able to find him- fast. Even when he doesn't yet know he is lost.

Frustration Regulation

"Joey, honey, your twenty minutes is up," I announce apologetically, the last of a string of transitioning prompts to get him off his Mario games and onto... anything else. He was doing OK with it, but when he got the five-minute warning, he switched to the level that usually sets him screaming; I think it might be level 8-4. I flinched, knowing how this has been ending lately. My shoulder throbbed at the very thought.

"I can't beat this level!" he shrieks- not at me, but at the computer screen. He bursts into tears, his already-pink face going beet red all over, a sure danger sign. He screams at the game, heartbroken. "First rule, Joey cannot beat all the levels! Why did the designers put a hammer bro there? I can't beat this level!"

"One more try, darling," I assure him as the all-too-familiar death music rings out. "Then it is time to put Mario away for today." I pat his shoulder to remind him I am there. To my surprise, he shuts the computer off instead. I brace for impact as he empties his lungs.

"I'm ANGRY! I'll never defeat Bowser!" The house might not shake with it, but my own heart is wrung to its core. I step away, for a tautness in his shoulder tells me the chair is about to be flung back in my direction. He pushes back hard as I expected... then begins to stomp through the house.

I wait for the ugly words to come, the colorful metaphors, usually directed at me, being a safe target. Instead, he rolls on with his game talk.

"Stupid Bowser! I hate Bowser! I'll never save the Princess!" he yells, at the top of his lungs, as he stomps up the stairs. I hear him reach his room, and scream that blood-curdling soul-wrenching scream that often sends people at school scurrying to his aid. The one he uses for pain.

I reach the top of the stair, the door of his room; I must have flown there, I don't remember my feet on the stairs at all. I expect to see a child with a shattered arm or at least a paper cut or a stubbed toe. He is in his favorite chair, wailing about the game. The hurt isn't physical.

And I stand there and ponder as he screams out the hurt, gives it words, and slowly, painfully, loudly, subsides. I stand there, amazed, almost in shock.

He knew he was done, stopped the game himself, went to his favorite chair in his room, and was working on regulating himself. All without lashing out at anyone, other than the noise. The worst word that emerged from his mouth was "stupid." Holy cow.

He comes to the door, wanting a hug. I give him one, I whisper that I love him. He goes on about Bowser. He goes back to his chair. We repeat this a few times until the sobs stop, and he sits in his chair, drawing and air-writing, his fish light on.

And I realize, he did it. He finally did it, after months and months of not doing it. He managed to calm himself out of a meltdown, himself, without lashing out to hurt anyone else. He did it. He made it up the stairs to his space, and calmed down.

He did it. 

Wait... The Zoo Is Closed On Sundays? (Lessons in Otter Sex)

We haven't been on too many adventures lately. The boys have been tremendously busy, as have JoeyAndyDad and I. Also, neither boy has been riding well, so long drives are not on our agenda right now. Add another jump in Joey's anxiety level, and our apparent incompetence in helping him cope, and well, we haven't been on too many adventures lately.

With the day overcast and cool for once (this has been the Summer in the Oven here), we decided to try the zoo. So we packed everybody up and merrily began our jaunt, which did really well until we almost arrived- everybody was hungry, car-weary, and the battery on the iPad gave out. We pulled over to get some food.

And that is when I decided to double-check when the zoo actually opened, to find it was completely closed on Sundays. Who ever heard of a zoo being closed on a weekend day in summer? Really?

So we took our $60 elsewhere (yep- we were going to shell out $60 to see a zoo. But you get to feed giraffes, people. We are totally going to try again on Friday.) That elsewhere was our old stand-by, Maymont. We re-upped our membership, and got down to business- which was wandering through the children's barn, through the little zoo to see the bear, and then hiking back up the hill, huffing and puffing because no one was expecting to be at Maymont, and no one brought a fan, water, or an inhaler.

The boys liked the raptor display best. It's shady, clean, and full of awesome birds. They liked the hawks and owls best, though I must admit the bald eagle is always the show-stopper for me (and I love owls).

One of the cool parts is the viewer, which (for a quarter) lets you see with the acuity and range of an eagle. Andy was especially excited, as his new powers of vision and focus let him really be able to use the thing. Joey balked as usual at having to use both eyes. We are totally having that checked out, as soon as we know we have the up-front fund to put down on the therapy.

They also liked the snow-cone stand, an especially vital feature when one has not brought a fan, water, or an inhaler. It's a very pleasant walk to the bottom of the little zoo, and very cool and lovely down there, but the humidity was a mess.

And did I forgot to mention that we were taking Sonic the Hedgehog and Luigi to the zoo? For some reason, as soon as they realized we were going adventuring, they both dressed in costume. Anxiety is a strange thing. 

Joey as Luigi, with his stick for his air-writing.

Andy as Sonic the Hedgehog. 

We did manage to see the bear, who was the biggest black bear I have ever seen- that thing must have been 300-400 pounds, it was definitely as hefty as me. Not a bear I'd want to meet in a dark forest with a fish in my pocket. Awesome creature. 

Joey had some trouble picking out the animals from their environments, but he was happy to at least see this bear. And hug it. 

As lovely as it was, it had to end. We didn't have tickets for the tram, so we had to trudge back up the little mountain, past the raptors, the fox, the bobcat... Andy was so excited to find the bobcat out on our way back! He usually hides in his den most of the day, especially hot days. 

We finally arrived back at the car, so we could head for the Nature Center and cool off. It isn't a big center, but it is pretty nice, and full of aquariums, little activities, a hall with night animals, a beautiful discovery room, and Joey's favorite, the otters. 

The volunteer brought out a snake for everybody to pet, which made Joey very happy. He loves handling snakes. I think he was kinda cold and smooth, but Joey was very excited. The volunteer was very patient with Joey, and I can't tell you how much that was appreciated! She was ever so sweet as Joey sat next to her with a toy snake, and started "interviewing" her as the snake. The two snakes had a very nice little conversation about being snakes. 

We spent a nice long time watching the otters. They were doing a show when we first arrived, but once the tricks were over the otters were fed, the folks cleared out and gave us back our nice, quiet otter corner. We took some photos, and laughed about the otters wrestling and playing, and Joey followed them and played with them, and all was happy. 

In watching them, as Joey started talking to me about them in his chatter-chatter-otters-are-awesome way, I noticed that the one otter now had the other firmly by the neck. I have watched enough nature shows to realize what this means- and obviously, after dinner and a show, otters get... um... frisky. Amorously frisky. 

Lately, Joey has discovered the power of colorful metaphor, and his favorite word to use is the one that gets the most heads to turn. I was sorely tempted to have him turn around, and explain that every time he used that particular colorful metaphor, this behavior is what he was referencing. Fuzzy, frantic otter sex. Sorely, sorely tempted. But I was good, and didn't scar my child for life. 

Instead, I decided to treat otters as I would have otters treat me, and discreetly maneuvered Joey back to the fish and snakes in the other room to give them a little--- ahem--- privacy. Besides, it was time to head home. We had two very tired boys. 

But never fear- we managed to stop at the Russell Stover outlet on the way home. 

My Joey

I love the way Joey cocks his head to one side as he air-writes, as if to get the whole word just perfect, every time.

I the love Joey's soft smile when he leans his head on your shoulder, that supreme happiness of being there.

I love the way he creeps in to bed and whispers, "I love you, sweetie pie."

I love it when he dresses up as Luigi and says, "Mama Mia!"

I love the way he stomps so deliberately up the stair when he is frustrated, as if he was squashing the mean out of the universe.

I love to see him curled up in his favorite chair in his room, watching his fish lamp.

I love how Joey has found a favorite spot in the park, at the top of the stair to the slide. And that he always moves aside when a little one wants to go down, with encouraging words, "You can do it!"

I love the sound of his squeal when he wins a game.

I love it when Joey very gently, ever-so-softly, touches your face when he wants to connect with you.

I love the way he dives into the pool, full-throttle.

I love the way he inflects his voice, so he not only says the words, he means them. Even the echoed ones.

I love how he giggles when he knows he's being mischievous.

I love how he sometimes gets up suddenly and announces, "I'm going to feed the kitties!" with such pride and love.

I love how he kicks his feet out a little as he walks.

I love the way Joey exaggerates his face when he wants to clearly communicate an emotion.

I love the look on his face when he hugs his brother.

I love the way he can be completely engrossed in a game, until you whisper, "...cookie."

I love the way he laughs when he lets you tickle him.

I love how he sneaks into our room at night and snuggles himself between us, so you can't tell where one person ends and the next begins.

I love how saying the word "hug" prompts him to stop whatever he is doing and lay on you.

I love it when he quotes Quack: "This is the worst thing I've ever tasted! Ick! Bleah!.... You gotta try it!"

I love watching him come down the stairs at Christmas. And seeing Santa Claus at the mall. And walking into Valley View at Christmastime.

I love the pictures he draws: Mario, Luigi, Angry Birds, Roadrunner, Coyote... and Dad.

I love listening to him sing. Even the Mario Brothers music.

I love how he manages to accrue all of my wood spoons.

He's my baby. And I love my Joey.

Thoughts from the Morass

I have no clue how people do it.

I poke around and see what people are doing all the time. Its is easier now that we have Twitter, Facebook, Google, blogs, more blogs, etc. etc. etc. I see what other people are managing to get done. They have kids, special needs kids, families, jobs- they write, not just for their own blogs or magazines or whatever, but several of these. They lecture and publish and still cook dinner. They have hobbies- knitting, baking, gardening, reading. They have fresh news stories to post, which I assume they have read, as they have comments to offer on them. Life goes on, and things get done.

And it is all I can do to say my kids get to bed still alive and fed at night.

I got up this morning. Having been kicked out of bed by sprawling boys, I had spent most of the night in the big recliner. There was a boy in the bed, so I snuggled and smooched on him until we absolutely had to get up if he was going to eat before leaving for school.

I don't drink coffee. I didn't get a shower. I was lucky to get my clothes on before going out to the start of my day. I forgot to brush my hair, but did manage to take my meds and put on deoderant before putting the clothes on. I thought I might try to write a letter to a friend later today, they aren't online anymore because they live on a farm and various other reasons. I have the thought every morning.

It was a lazier morning than usual, because Andy didn't have vision therapy this morning, so I just had Joey to get together. I made him some breakfast- which consisted of putting two danishes on a plate and pouring him a glass of milk, because we snuggled so long- and made sure he got his medicine down. I fed the cats. I packed Joey's snack. I looked outside to check for the bus, and noticed the fledgling on the porch. I quickly flipped open my laptop to make sure I didn't need to try to get him back in the nest, but everything I found said he was OK as long as he wasn't hurt, which he wasn't. I tried to get Joey to look at the bird, but he was already on a Mario spiral. The bus came. I got Joey out the door as calmly as possible, so we didn't frighten our fledgling. I noticed the sunflowers still need to be staked (they are all crooked form the derecho that came through) as I waved my "I love you", and the bus pulled away with a little bit of my heart on it.

Andy had awakened and was coming down the stairs, so no snuggle time for me. More breakfast, then I popped on Twitter and Facebook and the news to make sure the world wasn't falling apart. My friend sent me a message about services for Joey she had discovered, awesome. I told Andy about the fledgling, and we watched him for a minute before heading out to his OT group. We saw the mama bird come land on the porch with a bug in her beak.

As we drove, Andy chatted about his nerf gun needing new darts and missing his vision therapist, and we thought we might get to the Bug Box this morning after we stopped by mom's office. I got Andy to OT, and got the session paid for, then hopped over to the CVS to see if they had nerf darts. They don't. I got a beach chair on sale, because we would be at the McDonald's later, and this McDonald's doesn't have the nice tables with the separate chairs, and the attached benches are the perfect size for skinny preteens, but not for a fat middle-aged mom. I got back to chat with one of the moms from the group, she's having some issues we've seen before. Swapped some info, gave her some names of folks to call, all good. The other mom homeschools. I think she thinks we're nuts to have our kids in public school. As the kids came out, she asked about when the fall session would be. It was thought it would be Tuesday or Thursday, about 4. I noted Andy's bus often arrives at 4, another mom had a similar issue. The homeschool mom proudly noted she didn't care, since she homeschooled. Consensus voted for 4:15, and I noted I could sign Andy up for soccer now I knew when therapy would likely be. Well, his, anyway. His 1:1 therapist is going on maternity leave, so we didn't know when 1:1 would start back up, or what slot we would get. We were supposed to practice "whole body listening" by asking the Andy about cues he could get from body language, what he thought people were thinking based on how they were holding themselves or gesturing for emphasis, and we were supposed to talk about how to learn the "secret language" of social interaction. I pondered how I would also help Andy understand that Joey doesn't "speak" that "secret language" very well, and see if he could figure out Joey's "secret language." I think he can actually "read" Joey better than I can.

We got in the car, and went over the plan for the rest of the morning. We needed to pick up mom's medicine, then go to the office, then perhaps the Bug Box? But Andy didn't want to go to the Bug box anymore. He wanted to go "somewhere fun", then decided he wanted to go home because it was hot. And mom didn't get nerf darts, so he was extra grumpy.

We got mom's meds, and headed to the office to see if the phones got fixed and catch mom up on work stuff. Andy got a soda and a snack, the phones were only sort of fixed- we need to replace the phonesets, and business phones are expensive. Mom's computer monitor was also toast from the storms.  I got mom up to date on stuff and showed her the stuff I had photographed to put up in the Etsy shop. I lost track of time, getting things settled. I got a text from Joey's teacher, he was OK until a game started going wrong for him, then he had pulled out his verbal arsenal and let it fly. Andy played quietly, pretending he had a bookstore. Suddenly, we had to race home, and we got there just in time to get Joey off the bus. The fledgling was chirping in his nest.

We had a quiet lunch, sandwiches, grapes, chips, sodas. Joey had me watch him play one the Mario levels he had designed. Andy was being grumpy because he was still out of darts. I forgot to make myself a sandwich, I got distracted by the begging for me to watch a level. Andy wanted to watch a Shaun the Sheep episode, so I got it on. I checked my email, but there was nothing interesting. I posted something about the nice check I got yesterday from my Cafepress shop. I glanced over Facebook to make sure everybody was OK. Someone had published an academic article. Someone got a new job in a museum. Someone was in London, lecturing at a conference. I remembered I needed to start re-vamping my classes for Fall, we have a new texbook. I checked my email and classes to make sure the students were all good. I answered a couple of questions. I thought about the school supplies that were still in the van, and they needed to come in and be sorted. I talked to my mom, who had a brilliant idea about getting Joey some quiet space, since he's been a little anxiety- ridden lately. There were a couple articles posted in the newsfeed I wanted to read, but they would have to wait. It was time for Joey's vestibular and core group.

Joey chatted about Bowser and Mario and Luigi and then the boys bickered as we drove. They bickered in the waiting room. Andy brought in his gun and a stuffed doll, and pretended to shoot zombies. Two of the kids in Joey's group played along. Joey ran and got an exercise ball out of a therapy room, and I reminded hi, that he needed to ask to use equipment. He ran off with the ball, but apparently the answer was "no' when he asked, because I jumped up to sounds of a scuffle and "Joey, put the ball DOWN." A therapist was wrestling the ball from him, then he shot past me and raced down the hall,  kicking off his shoes as he bolted. The therapy office is set up in a big circle, but there is a back door; fortunately, he decided to do the circuit rather than the door. I think the therapist said something as he went past and I ran past her, hot on his heels lest he now go out the front door. The words were not helpful, something like, 'Joey, go wait in the waiting room" or something like that. The hall was narrow enough she could have put out an arm and caught him, but she didn't. IT was Andy's voice that drew Joey past the front door instead of him bolting through it. The waiting room was a dead-end for him, I got him to sit and have a hug. Another of the group kids came in, and I tried to talk to him, but got rebuffed- he was too anxious about group already. I didn't push it. Group started, and away Joey went.

Andy and I headed to Target to get darts. The end of July is clearance season; the summer toys are cleared out to make way for Christmas merchandising. They had a huge nerf gun on sale for $7. It got purchased, making for a very, very happy boy, who chattered about all the cool things it did all the way to the car. We also got a present for Andy's therapist while we were in the Target. We got back to the OT office, with an agreement that he needed some targets to shoot at in the yard.

Andy shot at his zombie, a parent from Joey's group chatted about a listening program she was trying, and how it was going to cost hundreds and hundreds of dollars to get the equipment in her house, plus the cost of the sessions. The program we did consisted of the cost of a set of really really good headphones, a good CD player, and at most it would have been the cost of the CDs, so about $250 all together- only we rented the CDs from the office, so for us it was only about $150 plus the therapy sessions themselves. I wondered what the program was like that required hundreds and hundreds of dollars just in equipment. I hope it works well for them.

The therapists tried to tell us something about the session, but these folks aren't as good at controlling hub-bub of released kids as Ms. Lisa, the main therapist in the office, is; so we didn't learn much. Apparently, there had been a lot of spinning, and Joey was unused to it, so there was some advice about counter-acting possible side-effects. I caught "suck through a straw," but the rest was lost in the general din and the clacking of the nerf gun.

I got the boys gathered and over to the playplace at McDonalds, as we had 45 minutes to kill between sessions. I sipped a coke in my new chair and listened to some Sherlock Holmes while the boys played- well, what I could hear over the squeals and yells. Some other kids arrived, and there was a rollicking game of hide and seek.

Then it was time. Back to OT we went. Joey saw the temperature according to the car was 101, and started to freak out: "too hot! It is too hot to swim! I'm going to burn! There's hot lava everywhere!"

Joey got happy when Ms. Lisa appeared. Off he bounced. Andy and I hopped back in the car, and headed to a small hardware store. We picked up some reflectors and things to use as targets, and some stakes for the sunflowers. Andy chattered about the targets he was going to make, and how different colors were good or bad, about whether Lego or Nerf would win the Epic Battle, and a smattering of chatter about Smash Brothers. We headed back to the office, where he could shoot at his zombie doll (which is actually a Genie from Aladdin doll).

One of the "targets" is a large screw eye, which I took in and proceeded to screw into a thick dowel for him, and he then merrily used as a target (go figure). I chatted with one of the other moms in the group about some of the trouble she's had with the schools, and she talked about going back to work. Her husband is the one that usually is home, though he also has a job and is a big-time advocate-activist out in the county. We talked about how we are both locals- I grew up in the county, she in the next county over. Her husband is local, too. She chided me for not having a gps anklet for Joey yet. Her son has one, and I know its been invaluable to them. We mention something about how different life was going to be. THe boys are now 10 and 8; we're supposed to be trekking all over India now. She also says something about travel, but having to work for the health insurance.

Ms. Lisa came out, and explained what the kids had been doing this session, learning about social cues and that other people think about them, and cues for determining what people are thinking about. We are supposed to practice at home, asking Joey what he thinks we are thinking about while looking at objects around the room, to see if he can follow another person's gaze or line-of-sight (joint attention skills).

The kids then appeared. Joey looked tired, and practically crawled into my lap. We got him into the car, and decided we should go home and have spaghetti and meatballs for dinner. The boys then commenced bickering. They bickered all the way home, all the way into the door, all the way through the living room. Andy started to watch a video of a Smash Brothers game, but one of the teens in it started using foul language, so he had to turn it off. He got grumpy and stomped into the livingroom, and started shooting Joey with his nerf guns. Joey started screaming about being shot. Ten minutes later, we were back to playing games on the computer and shooting zombies, so I started the meatballs.

The bickering continued, so I screwed up the meatballs, since I was only half- attending to how many crumbs I was adding. Joey gets so upset over his game he sobs uncontrollably; I try to hug him, but everything I say or do seems to just make it worse. My shoulder takes a good knock, but I've had worse.  The noodles goet cooked, the meatballs get cooked, and after another screaming fit over a game and resistance in going to his room to calm down, both noodles and meatballs are consumed.

I started checking my computer. A couple of students had questions. I clean up the photos of the stuff for the shop. I check my social media. A friend was posting about a fabulous article they had written. Three had new blog posts. I noticed my brother had some kind of mention in the Huffington post as a lawyer who also gave lectures and wrote books. I have one of his books in my case for special books, but I haven't gotten to read it. Someone else commented on reading a new book. Another friend had gone for a 12-mile bike ride after work. Another friend was apparently made a member of the Order of the British Empire for their work on Autism. Another friend just finished the quilt she's been working on this month. It's beautiful. Another published article, a published book, a lecturer noting their tidy little honorarium. Another friend has put up a dozen articles- I want to read them all, but when? I think about a video on crocheting I want to watch to try to learn how to do it. My Uncle Lou crochets beautifully. I think about the friend who just came and I got to see her, I wonder how her kids are today, I should call her more. I should call everybody more. I start getting some of the new stuff up online. It's after 7.

JoeyAndyDad arrives home shortly thereafter, and reminds me that I need to get some things from the office. I run out, I try to get something at a store, but I get the wrong thing. Thinking it is possibly the right thing, I happily go to the office and get what I need- a book I need to get in the mail, a monitor. Some yarn that was given to me is still in the floor there. I toss it in a box to send to my friend on the farm, who was teaching herself to knit when I saw her last. I'm not likely to learn to crochet with it, so I should send it up to her and let it be put to good use. I load everything into the car, and I am off. I stop at the grocery on the way home, picking up something I forgot. I head home.

I finish getting the stuff into the shop, but I still have school supplies to sort. Its getting late. I decide it can wait, even though the stuff is all over the livingroom and front hall, along with bins of other stuff I pulled form the car a few days ago. It all needs to be sorted. I have no room to just stick it in the basement anymore. I go upstairs anyway.

The boys want hugs. I get undressed, and a boy comes in for hugs. I try to read some of the articles I wanted to read, but another boy wants attention. I start writing, when I normally would be trying to catch up on blogs I read, grade some papers, maybe get in a few articles. Boys come in wanting attention at intervals. I realize it's almost midnight, as a boy plops between me and JoeyAndyDad. We were supposed to talk about something when we came upstair, I forget what it was. I wonder if we remembered to talk about it. We send the boy back to his room, and I am finishing up this post.

It is now 12:21am.

I have worked on no articles to publish, done no research, not even read the articles about autism other have posted today. I didn't read any blogs. I gave no lectures, nor even started writing one. I didn't even write a letter to my friend... again.

I have no idea how people do it.

Awesome Thank You!

Thank you to all the awesome folks who have purchased form my Cafepress shop- just got a check that will cover a whole therapy session! You rock!

Proud Graduate: Vision Therapy DONE!

I am SO proud of my Andy; he completed twelve weeks of hard work- vision therapy, three days a week, plus home activities every day- to bring his focus and eye convergence into normal range! We will still be doing exercises to maintain muscle strength in his eyes, but my boy can now SEE!!!

Now we can really focus on the dysgraphia and get him rolling at school again. I am hoping he will start enjoying reading books, now that he can see them. And perhaps he will start drawing and coloring again, now he can see. And perhaps... just perhaps... he will start writing down all those stories that run through his head. They always sound so exciting!

Thank you, Ms. Colleen. And great work, Andy!!!