Stay Tuned!

We had the Best Vacation Ever.

We got two good shots at the ocean, cool enough to not burn our feet on the sand, warm enough to really get in the water.

Joey rode every ride we'd let him on. Andy got to go fishing and win prizes.

The boys played skee ball and prize cranes in Marty's. They had taffy from Dolle's.

Allan and I got to have a walk to ourselves. We got to have fries from Thrasher's and popcorn from Fisher's.

We had crabs at Hooper's. We saw ponies at Assateague. We even tried a new resteraunt, Greenwood Farms, which was wonderful!

So stay tuned for the pics, the fun, the stories...

Preparing for the beach

Swimsuits, check.
Suntan lotion, check.
Shorts, check.
Shirts, check.
Long pants and shirts, just in case, check.
Extra towels, check.
Toys, check.
Electronic toys, check.
DVD player, check.
Little Bear DVDs, check.
Oobi DVDs, just in case, check.
Toothbrushes, check.
Rotating toothbrushes, check.
Favorite stories, check.
Extra books in case we need extra stories, or are bored with the usual ones, check.
Sweatshirts in case it gets chilly, check.
Some extra shirts and shorts, just in case, check.
Extra underwear because we have one still in training, check.
Swim diapers, because we have one still in training, check.
Sunglasses, check.
Extra sunglasses for when the others get broken or lost, check.
Sun hat, check.
Roll of dimes for the claw machines at Marty's, check.

Are we ready?
Oops, I guess I'd better pack some clothes and stuff for me...

Define "Yellow"

It was Andy's first day of preschool! I'm finding the differences between this "regular" preschool and Joey's special ed school very... well, different. None of the parents talk to you when you take your kid in. When I picked him up, he hadn't gone to the potty because they aren't allowed to go in with him, even if he needs a little encouragement.

Still, he seemed very happy and excited with his morning. He made a little handprint project, and called his teacher by name. Exciting stuff! He made himself right at home. No crying, no clinging- and since he's been clingy all lat week, that was a bit of a surprise. He found himself some plastic bugs and settled right in.

They did send him home with homework. A preschooler. There are a lot of non-academic things to learn in the world.

It's also interesting to note what the school expects from parents. I know far less of what Andy is doing during the day. I got a note, but it didn't say much. Once a month, one parent has to send in play-doh of a certain color. They send home a recipe. i signed up for September- get it done. My color was yellow. The photo here shows you the results. The neon orange was following the recipe. The pumpkin yellow is using only a quarter of the dye the recipe calls for. You will note that neither batch is yellow. Then I ran out of cream of tartar. So instead of yellow, this month, they have orange.

After all, it came from my house.

Dancing Queen

Next weekend, we're going to the beach. I can hardly wait.

This past weekend, we had a party for my aunt and uncle- they've been married 50 years! (I'm getting old!) The boys had a lot of fun. There was a big disco ball, throwing light all over the walls. Andy was overwhelmed. Joey was in heaven.

Going to a family event in my family can be something of an adventure. You can tell my family- they are the ones who all look alike. If you yell "Bud" or "Elmer", most of the men in the room will turn their heads. I am often teh tallest person there, because my brother doesn't go anymore. The ones that don't look like me or my cousins, I definitely don't know. The ones that do, I know about half of them.


The boys decided that "dancing" was the best part (besides the cake). This involved each boy taking Mommy's hand and using her as a pivot to spin with teh pretty dancing lights. Mommy ended up very, very dizzy.I didn't get to really talk to anyone; every attempt was thwarted by a small child trying to either get me to "dance" or hide under my shirt.

And so it goes.

Beautiful

With Joey in school, I have a lot more time to attend to Andy. This first week has been hard. I miss Joey. Andy misses Joey. We lost a cat. The schedule is all new. Andy doesn't start his own school until next week. We're all tired and sad and missing our Joey (he goes to school ALL DAY now...)

So when Andy said he wanted ahot dog for lunch yesterday, I decided it was a good idea to take him to Dairy Queen and get one. We also got a strawberry sundar (it technically came with my lunch, but I knew it was really for him. I prefer caramel.) When it came, he sighed happily, then said, "Oh! the red! It's BEAUTIFUL!"

"Beautiful" became the word of the day. Anything that he wanted and thought a good thing was "beautiful."

It was a beautiful day.

In Memoriam: Marmie Cat

My mom lost her cat to cancer this week. Chelsea Marmalade Blanche DuBois was a good companion and friend to my mom for fourteen years. We miss her very much.

When Blanche was brought to my mom, she had already been a mom, and traveled across the US. Aunt Ginny (who, incidentally, also gave us Luna and Ellora) had saved her from an animal shelter with the promise that "Chelsea" would be an indoor cat. All of Blanche's kittens had already been adopted, and she was being threatened with euthanasia- so that nine life thing may hav some truth to it after all.

Aunt Ginny travels with her animals, so Blanche joined the travelling family. However, she soon proved unfit for such a life. She would escape and hide on roofs and in closets, and provided ample evidence of neurosis. She hated the other animals. It just wasn't working. Aunt Ginny knew my mom had a nice, quiet house. We had lost our former long-time pet, Hubert Magic Mitten ("Kit Kat", or more usually, "Cat") in the spring. He was 17, and had a series of strokes. So Aunt Ginny brought the slender, long-haired beauty to the country, and my mother, for Christmas. Merry Christmas, Mom!

Her long orange hair and status as a mother lead my mom to initially dub her "Marmie" (Marmalade for the orange, and marmie after Little Women). However, it soon became apparent that the cat was absolutely nutso. She would hide for days in mom's closet, without food or water. If you made eye contact too soon, she would hide somewhere else and emerger several more days later, emaciated and exhausted. Mom learned to locate her without making eye contact, and leaving water. Then she would hide in the basement for weeks. If you called her, she would only answer if she thought you could see her (even if you couldn't). Again, callingtoo soon meant several more days of hiding. This was no Marmie. This was Blanche DuBois- depending on the kindness of strangers!

But as the calm of my mother and her home settled on Blanche, and she calmed down. She hid less and less, and finally stopped such insanity. Instead, she preferred ot sleep near my mother's face, one paw upon her cheek. Even when Mom was ill, sleeping out on the couch instead of bed, she would come and see where Mom was, and sit with her. They talked. Marmie (Blanche and Marmie became interchangeable names for her, depending on her mood) would want to know who was on the phone, demand her breakfast, demand that Mom come to bed. Blanche or Marmie, she and my mom were companions through thick and thin.

Six days ago, Marmie was eating a full can of food at each meal, being her usual bossy self. Then she stopped eating. She was otherwise acting fine, but she was losing weight. Two days ago, as she started looking thin, Mom took her to the vet and they took x-rays. Yesterday, the vet sat us down and explained that all that white we see in the abdominal cavity and chest cavity? That's cancer. Non-operable cancer, and chemo would buy her maybe three months- and not happy months. She was starting to have trouble breathing. She was at least 16 years old. It was time.

We lost our Blanche at 10:22 am on Sept 5, 2007.

Thank you for being our friend, Marmie. We love you. We miss you. Blessed be.

Back to School

School is here.

Joey was in a good mood after school yesterday, and even had some words left. He did fine at speech therapy. Apparently he had some trouble with the gym teacher, but then, gym teachers aren't generally trained to deal with autistic kids who are probably tired, hungry, and frustrated towards teh end of their first day of school. One thing about avoiding meltdowns with anychild is to know when they could occur and avoid those storm conditions. With autistic kids, it can be harder to know exactly what those conditions are. Echo-y noise on top of being tired and frustrated could be a perfect storm to avoid.

We also had more biting yesterday. Joey bit Andy early, and we went home; then again before bed. Allan talked to him a long time, and finally Joey said that he was afraid of dinosaurs, the dinosaurs bite. Had Andy been pretending to be a dinosaur and scared him? Or was he putting plastic dinosaurs in Joey's face? It could be either one. At least we have some headway into the problem- and now we have to convince him to use his words, not his teeth.

End of Summer

As we prepare for school to begin tomorrow, I would just a moment to say goodbye and thank-you to summer.

This summer, Joey learned to ask questions. He learned to take turns. He learned that being Little Bear is a lot of fun, especially if Brother can be Little Bear, too. He learned that he can communicate with his hands as well as his voice. He learned that mountains are big, chickens peck you if you try to pet them, pool parties are really cool, and you can see tigers and elephants at the zoo. He learned that he can float in the water, and Mommy looks silly jumping off a diving board. He learned that otters like to play. He learned to eat ice cream on a cone.


Andy learned to pee in the potty. He learned that sharing toys can be fun, too. He learned that dinosaurs are real, and they are BIG. He learned that marshmallows get sticky when they get hot. He learned that turkeys gobble, and peacocks are soft (but shy). He learned to speak clearly if you want others to understand you. He learned how to get lollipops out of his Momma. He learned fireworks are LOUD.

Thank you, summer, for helping my boys grow. Good bye, summer. We'll see you next year.

New Couch

My beautiful, wonderful mommy bought us a new couch today. I can hardly wait for it to come! It's a lovely light green to go with my livingroom, the fabric is softly comfy while seeming durable, and the lines classic.

My oldcouch belonged to my grandparents. I am very upset about losing it. As a little girl, when we spent the night at Granny and Pop's with my folks, this couch is where I slept. It was extra-deep, so very comfy for a child, and even for a teenager. (When I visited without my folks, I slept in the upstairs bedroom- I'll blog about that some other time.) It sat int eh livingroom under a huge mirror. Many a special occasion was marked by checking to see if my Granny and/or Pop would approve of my clothes, my hair, my demeanor, before setting forth. The cushions were often my fort or my playhouse or my lion's den. My little fingers would brush lovingly over the fabric, alternating between the smooth silky bckground and soft velor foreground.

However, it was also very bouncy. Joey discovered this at a very tender age, and long before we owned a trampoline. Andy followed suit. The straps and frame are broken, the springs are sagging to the floor, the fabric wearing threadbare and thin. After all, the couch- and the fabric- is 40 years old.

May the new couch last as long, and be as loved.

Book Quiz

You're Watership Down!

by Richard Adams

Though many think of you as a bit young, even childish, you're
actually incredibly deep and complex. You show people the need to rethink their
assumptions, and confront them on everything from how they think to where they
build their houses. You might be one of the greatest people of all time. You'd
be recognized as such if you weren't always talking about talking rabbits.


Take the Book Quiz
at the Blue Pyramid.

Meet the Teacher(s)

We went to Open House this evening. Grandma and I took Joey and Andy out to dinner, then over to school to meet our new kindergarden crew. It was really exciting. We got a copy of Joey's schedule and met both of his teachers, made sure we dragged our supplies with us, and even got to meet one of the other sets of parents. The self-contained class is really small right now, which will be all the better- everythng can be tailored to our kids, and Joey is going to be a real wing-ding of a challenge. The one teacher noted they have never started out with a kid as smart as Joey- meaning as far along academically- and we are looking forward to reading groups already! Joey spent most of the evening writing on the dry-erase board- letters, words, even "Come to school", and math (12 + 12 = 24). Show-off.

Its kind of weird to be explaining to a teacher, "well, he already knows how to read, he writes all his letters and numbers, and he can add...academics isn't the problem." When she asked, "so what's the problem?" all we could really say is, "everything else." Fortunately, these two people have seen Joey. They understand what we mean.

The adventure beings on Tuesday.

School update

I have now spoken with school folk, and the word is Joey will indeed be split between two teachers. One is the self-contained kindergarden teacher, theother is the new autism teacher. The current plan is to pull him out of language arts, where kindergardeners are learning letter sounds and writing (which Joey can already do) and place him in teh autism class to learn language and social skills. Sounds like a plan to me.

How Weird Was Your Day?

This was one of those weird days that seem like two or three days packed into one. We started off at the gym, wher ethe guys got to play with their friends while Mom failed to lose any more weight (as she has failed to do for now eight weeks running). The lady who runs the kid section takes special care of Joey, mostly because she likes him, and she said he was all out-of-focus today. This was bad because we were out of milk, which is a disaster. So we went to the store anyway, and we manage to get milk, but my legs are now bruised from little boys kicking their feet while riding on those little bench attachment things, and they threw hissy fits the whole time. So we went home for lunch, and Grandma came by. She had an appointment with the surgeon this morning because the radiologist wanted her to get her gall bladder out, but the surgeon told her if she isn't having any symptoms, call him when she does. This is good news, and we celebrated by having lunch delivered instead of cooking it. Then I inflated our pool and let the guys splash around in it until the sky looked threatening, but it never rained. They spent the rest of the afternoon lounging in the livingroom with various amusements and watching Little Bear. I managed to get a chicken in the oven for dinner. Very surreal.

Joey starts back to school next week. I need to sort through his clothes, organize his room, get the huge box of stuff the school wants all packed up to send in, and buy them both lunchboxes. I keep forgetting they need lunch boxes. I still don't know how many classrooms I am buying supplies for. If they split him between two teachers, do I need to send supplies for both classes?

Orientation is Thursday. I'll ask.

Being nice

Niksmom has kindly nominated for the "Nice Matters Award." This award is really cool, because you give it to people you think are nice and supportive:

This award is for those bloggers who are nice people; good
blog friends and those who inspire good feelings and inspiration. Also for those who are a positive influence on our blogging world.

Once you’ve been awarded please pass it on to 7 others who you feel are deserving of this award.

Yes, good feelings and inspiration. Well, that would be all the blogs I read. Which isn't really that many, but tagging all of them would also be unfair. Tag. You're Nice. (I can't be fair all of the time!)

If I had to pick to top seven people who "inspire good feelings and inspiration" in my life right this minute... hmm... I mean, beside Joey, Andy, Allan, and Mom, because that would take up four slots, so maybe I can just put "Family" in slot one. Now I can still pick on six other people.

My friend Christina is a great inspiration. She keeps on chuckin', and then calls me with her bright, cheery voice to shine some sunshine on my day. Gotta love that!

My friend Sue, whom I don't often blog about, is anther one of those tethers to reality and cheerfulness. She has an NT son who is just a dollface, and sometimes its nice to hear about some normality.

Maddy must be included on this list. Maddy was the first person to comment here, letting em know I wasn't all by myself after all. There are other places where "goldfish" is a food group.

Whenever I think about nice people, and what "nice" means, I think of Howard and Kimberlee. When my cat Puma was very very sick in the last stages of feline leukemia, she needed an emergency blood transfusion. They were the only people we knew who had healthy cats, and though we didn't really know them that well, we asked them to help us with one of their beloved babies. They never even hesitated, asked questions, nothing- they grabbed their young, healthy cat Pepin and came to the rescue. Their kindness gave us another week with our Puma, and I will never forget it. There are real, courageous, nice people in the world.

Another great inspiration is my friend St. Anne. Her little boy has been a great companion, classmate, and buddy for my Joey this summer, and she's just another epitomy of a nice person, with supportive comments and advice for everybody (especially me!). Thanks for the Diet Cokes on my rough afternoons.

I'd also like to mention Joey's first preschool teacher. Even when she moved off to another distrcit, she has stayed interested in Joey, and helped us learn how to advocate for him. Shes the kind of teacher I wish everyone had- interested in her students, willing to go the extra mile and do the extra research to make sure she is doing the best she can to help her kids and their parents. You can't ask for much nicer than that. She always has an encouraging word (and supportive indignation) when we're at wit's end. Thanks, Miss Angie.

Yes, folks, he IS reading!

Our ABA therapist, Becca, came up from a decent session this morning and gave me an in-depth report about the fact that Joey is reading. Not on a sixth-grade level or anything, but definitely reading- three-letter words no problem, some longer ones. We think this is pretty darn cool. I was reading pretty good by his age, and so was my husband, but neither of us had any language issues.

This evening, I pulled out a new book for him to look at. It was about Cars, to catch his interest, but not one he had seen much of. I had read it to them once, but bedtime storytime is not an activity that usually including paying attention to teh mom reading a story, so I wasn't too concerned about him memorizing the thing from one reading.

I am not a teacher, and I know very little about how young children read or learn to read. I know there are two ways to read, sight reading (recognizing words on sight, rather than sounding them out) and phonetic reading (sounding out the words). In reading our new book together, Joey clearly has some words by sight (like "the" and "and" and "car"). Words he didn't know by sight, we worked on sounding out, and he tried sounding out. As far as I know, this is a normal way to read. What I found interesting was the attempts at sounding out. Joey is very familiar with letters and the sounds they make, However, he often made the sound for a similar letter, rather than the letter he was looking at. For example, looking at the word "slowly", he would try it as "slooty" or "stewly" or even "stowly". The inconsistancy of it, and the use of similar letters, was kind of odd to me.

But he got through! We read the whole book, and he was SO PROUD, and I was so proud of him! It was the coolest thing ever! When he really catches on to this, we'll have a another visual avenue of communication with Joey- and he'll have a new avenue for communicating with us! How cool is that?

Plotting

I am thinking of trying to have a camping adventure with my guys, hopefully before school starts. Oobi has a camping episode, and Little Bear goes camping with Father Bear, and one of our Signing Time videos mentions camping, so there has been some interest in tents and things.

The question is how to do it. Camping even with non-autistic young children requires planning. First- inside or really outisde? To have this adventure inside requires clearing floorspace for the tent, but the plus is controlling the temperature and immediate access to such things as bathrooms, comfort objects, and the television. Not exactly camping, is it.

What is the point of this adventure? Exposure to new things, discussing the night-time, learning about nature. Ideally, we'd go out to Grandma's and camp in the woods, with a real campfire, seeing if Joey could deal with roasting marshmallows. Ther would be owls and wood ducks and deer and wild turkeys, as well as rabbits, squirrels, and plenty of trees and bushes.We could wade inteh river and look for crawdads and mussels and minnows. However, what about Joey wandering? If he got really uncomfortable, would Grandma's house be enough of a comfort? Or would he wander into the trees? What if he heard something that interested him? How would I find him? What if the river was a draw?

An alternative plan would be our own back yard. The yard is fenced. i'd need to get a chain and lock for the gate. But we'd be in the town. I suppose that's OK for a first adventure. Backyard it is.

I actually have a tent. Amazon had them cheap for a while. We could use the BBQ as a firepit for marshmallows. It would be kinda Oobi-ish. Now, what activities to keep the attention of small children until they pass out?

telling stories isn't really advisable, as they don't hold attention. Joey's tenuous grasp of narrative, sequencing, and language means he has a very difficult time following stories. Maybe soem kind of craft would be good early on, then marshmallows, and see if we can entice them with songs.

How would they deal with discovering that we are actually sleeping outside all night? That the bedtime routine will be altered? Willthis lead to meltdown, or controllable excitement? Do I have enough ASL to keep Joey focused and able to understand? Should I try to dig out the Oobi episode and talk about this? How far ahead?

It's not really the questions that are out of the ordinary- it's the answers. But we have to prepare, just like everybody else.

More insanity

Our special ed director retired this summer. I could write a whole post about the pros and cons of this, but right now, I'm just hopping mad about a con. There is some confusion about how his job is going to be filled, which has resulted in the person in charge of HeadStart beleiving they are in charge of the building- the WHOLE building- that HeadStart shares with ECSE. They decided HeadStart needed a room on the first floor for their 3-year-olds, so they moved one of the ESCE classrooms upstairs- and THEN informed the ESCE teacher that this had ALREADY HAPPENED. On top of that, this person won't even let them move all of their stuff- they have decided, for example, that the para doesn't need a desk, so did not approve moving the desk.

What the... ?

My buddy Jack is still in that room. Why they think it appropriate to move a child who cannot walk on his own upstairs is beyond me. If the elevator isn't working- and its use is already strongly discouraged- how will they access the cafeteria? The gym? The playground? What if there is a fire? Normal 3-year-olds can safel use the stair. Jack can't. They would have to carry him- putting more people in danger.

Angry, angry, angry. What a way to start a day. :(

Just a little crazy

We're about to go into a crazy period here in JoeyWorld and AndyLand. My apologies if this results in spotty blogging. There are only 24 hour in a day.

I start back to teaching this week. Two sections online. Next week, I have a live double section. I love teaching live courses. Online ones, not so good. Online students have no qualms sending nasty emails- after all, they never see you, so you're just the faceless Establishment. Why put on a respectful face?

Then the boys start school. Joey starts on the 4th. Andy starts on the 11th. Let's hear it for school! Shame its a game of Russian Roulette. And I always miss my Joey- now I'll be missing my Andy, too. My boys are getting all grown up!

And now my mom is being told she has to have her gall bladder out now, now, now. I had mine out right after Joey was born (I was still in the maternity ward when it went bad- they forget to tell you how prevalent it is for recently pregnant women to have gall stones), so I suspect it will be at least a week before she'll be able to do things like walk around the house by herself, much less make food and take her sugar numbers. She has her first meeting with the surgeon on Tuesday.

So if I seem a little battier than usual...

I have returned!

I'm BAAAAAAAA-AAAAAACK!

I was thinking I was going to have more time to blog over the weekend. The hotel had access and everything. Silly me. But the time was not frittered. My husband figured out how to do video conferencing over the computer. I got to SEE and TALK to my boys each evening!!! How's that for Hero Husband? Go JoeyAndyDad!!!! Let's hear it for my Allan! ***CHEERS!!***

Unfortunately, my train was late and I didn't get to see the boys. I went in and smooched 'em anyway. How can one resist those sweet little sleepy heads?

We've gotten some red flags tossed up about school. We thought we had everything settled about kindergarden and his new teacher and stuff, and suddenly the messages we're getting is that the summer school teacher is going to have him and she "reminded" me that he needs to be registered. He's already registered, and I thought we were having the teacher I've been talking to already? Not good. We're really nervous. Not that the summer lady hasn't done OK, but she's not like the other teacher, and we were really excited about the other lady, really feeling comfortable and happy. Silly us.

We still don't know what "keem" is. It hasn't come up again.

But I'll keep you posted.

Prepping for a trip

I have to go to NJ this weekend for work. I have a great job. I get to work at home most of the time- but twice a year, I have to go to NJ. I always worry when I go away. Its not that Allan can't take care of the kids, or anything like that, but I know Joey gets off-kilter. Even more, I miss my guys.

I do try my best to do some recharging in NJ. The food is usually pretty good, and I don't have to cook it. ;) Sometimes I get a single room, which is much nicer, but I usualy have a room-mate, which can really suck. :P I'm hoping to get my syllabi together. We'll see.

Bu there will me no boys to squish. No little diaper-free butts to pat. No lollipops to fetch. No goodnight kisses.

I hate traveling.

Forays into the unknown

Every once in a while- usually when Joey is not feeling tiptop- we have a meltdown for which Joey knows the reason, and is trying to tell us, and we just cannot make out what the hell is going on. He is looking for a specific object, but the words he is using to label the object make no sense. The game of 20 questions trying to discover what the object might be is rarely useful, because he does not answer questions accurately. Let's take this evening for an example.

"Can I have my keem?"

I have no idea what a "keem" is. Twenty Questions begins. What is it? A keem. You may have it; go get it. I want my keem. Where is it? It's there (accompanied by pointing in random directions). OK, show me. I want my keem!

So now we get off our butt and start looking for what this object might be. He was playing with some matchbox cars and Cars is playing on the tv. Maybe the object is a car. Is it "The King?"

I find The King, but this is not the object, and is rejected.

What color is it? It's green. He shakes his hand to sign green. OK, I am looking for a green object. I find a green car he was playing with earlier. This is not the object. It is immediately rejected.

Does it have wheels? No. Ok, not a car. What else could "keem" be?

Joey is now spiraling into tears because I'm an idiot who doesn't know what a "keem" is.

How about "game"? He's been perseverating on a little electronic thing that does math. Does he want his game? No. Green car.

So it's a car. Without wheels. That does not compute.

And unfortunately, though the game is "Twenty Questions", we've actually maxxed out on the number of questions he'll attempt to answer on the subject without complete meltdown. Any more inquiries are either ignored or meet the same response: a wail and gnashing of child, screaming "My KEEEEEEEEEEEEM!"

I give up and send him up to his bath. I may never find out what a keem is. I hope he will sleep without it, but one can never tell. This may re-blow-up after bathtime, or it could be transitioned and done. Only time will tell.

12

Today we ran up to my aunt and uncle's for a dip in the pool- Joey's request. Last night, that sweet little guy asked if he could "go swimming, go to beach, go swim with the cousins" meaning my cousin's twins and a trip to my aunt and uncle's to swim in their pool. I called them immediately to ask to come, and they were all for it. Yay, the part of the family that gets it!

A good time was had by all.

Then we got the usual signal that it was time to go. Joey began to perseverate.

We had been there all afternoon. The little guy was tired. His brother was exhausted. They were having fun. My aunt has one of those wooden German calendars on her wall, and one of the little wooden peices is, of course, a number 12. This is Joey's favorite number.

I am not sure why 12 is the number of choice. I could theorize on the subject, discuss the patterning and the sequential allure of the number 1 next to the number 2 to create the number 12, or a whole gambit of other associations possible, many of which would seem completely random to most people, and incomprensible to anyone not intimate with autism generally and Joey specifically. Whatever the reason, perseverating the number 12 means bedtime. Tired. Done. When he starts going on abotu the number 12, it's time to check for tiredness, exhaustion, or (if in the middle of the day for no apparent reason) fever. This is one of those ways Joey communicates that is hard to explain to people who expect other people to simply state what they need, or use words and language in direct ways. These are the kinds of little signals we've always picked up on with Joey.

12. {I'm tired.} I was 12. Give me 12. Look, a 12. I am 12. Where's the 12? 12. 12.

Fortunately, this is the part of the family that gets it, because they raised the daughter of another cousin, who was special needs (epilepsy and probable FAS). So when I suddenly announced it was time to go, and hustled everyone out the door and to the car, no offense was, I believe, taken. I think the sudden change in demeanor was a cue for them, too.

He's right now 12-ing on Allan's recliner. We don't have the heart to move such a 12 boy.

Going to the restaurant

Joey was just a little talking bug today- jabber, jabber, jabber. Gotta love it. He ate three slices of pizza for Daddy. PIZZA. You know, with tomato sauce and cheese and bread and sausage, all together, mixed up and layered to be bitten through, not picked apart. PIZZA. Joey. I am still on the floor in search of my teeth.

I was working over at Mom's today, so I got this news via phone with husband, rather than witnessing the event myself. Our van is on the fritz, so mom had to shuttle me around today, so we took Joey to church for music. He sat there and listened like any sweet little darling, curled up on the pew next to Grandma. He tried to sing the songs today and everything.

He was doing so well, that when we returned home to find Andy had fallen asleep, we decided to just take Joey out to eat.

He was SO excited. He just learned the sign for "restaurant" so he was showing it off gleefully, while informing all and sundry, "I am going to the restaurant! I am being in the restaurant! I eat in the restaurant! I am going in the restaurant!" He got to order his food himself ("I want the french fries and the chicken!") and pick out his food from the salad bar (he wanted mashed potatoes, cottage cheese, and watermelon), and even got his ownself-serve ice cream for dessert. But most amazing of all, he tried new food! He ate Grandma's cabbage (with and without cheese), and baked potato!

Who is this child, and where did they take Joey?

Seriously, he had a grand time, and really seems to be turning a corner on food and oral sensitivities. But now he is complaining that the church music is too loud, and covering his ears.

The Dog Days

We have just entered The Last Week. Joey's summer programs all end a week from today. Then we have two weeks of basically nothing- an abyss- before school begins.

We're not the only family to sign up for eight weeks of speech camp this summer. Or summer school. While maintaining our regular therapies. And then add a social skills camp to these last two weeks. Andy has patiently sat in the therapists office from 1 o'clock on, sometimes to 6 o'clock... all summer long. He has also not been alone.

There is a little girl who has sat in the office most of the summer while her brother is in speech camp. Is she seven? Eight? Old enough to like to do cartwheels across the waiting room and spruce up her pretty little face with Hello Kitty lipgloss. There are two preteen girls who come less often, but armed with DVDs and drawing pads, also waiting for speech camp siblings. There are two little girls and their baby brother awaiting a child in OT, who like to play with the plastic dolls' house in the speech room. The baby likes to climb the stairs and look down at his Dad through the rails. He also happens to have Down's Syndrome. There are some other siblings that come less often, or who I have seen less of at any rate. One is only eleven days old.

Whenever I think its been a long summer, I think of these kids. It's been a long summer for them, too. They didn't go to day camp, or cheerleading camp, or sports camp, or any of the things other non-special-needs kids seem to be doing. They didn't get to do lots of enrichment programs, or spend lots of lazy days by the pool. They didn't go to the beach. They stayed mostly right here, supporting their brothers and sisters as best they could by letting mom or dad or grandma or grandpa drag them to the therapy office day after day, and thus allow their siblings to have their therapies.

Next summer (and yes, I fully expect to be doing this again next summer), I'll probably ask the therapists if they mind if we have a Sibling Camp. Something to offer these kids besides sitting in the waiting room doing... well, not much. It could be free. I've got enough art supplies laying around here to put something together. A sprinkler in the parking lot would be OK for a brief activity when it wasn't absolutely boiling. Singing new songs and maybe even playing some Signing Time or other activity-related DVDs wouldn't cost anything. It would even be easy enough to have stuff that kids could easily walk-in/walk-out from; stations or quickie crafts so that anyone can join in, or opt out, as appointments allow. Just something so these kids don't feel like they spent the summer sitting around a waiting room. Something to get them through these last dog days of the summer, before the Abyss.

A World of Delphiniums

The Dormouse and the Doctor
By A. A. Milne

There once was a Dormouse who lived in a bed
Of delphiniums (blue) and geraniums (red),
And all the day long he'd a wonderful view
Of geraniums (red) and delphiniums (blue).

A Doctor came hurrying round, and he said:
"Tut-tut, I am sorry to find you in bed.
Just say 'Ninety-nine' while I look at your chest....
Don't you find that chrysanthemums answer the best?"

The Dormouse looked round at the view and replied
(When he'd said "Ninety-nine") that he'd tried and he'd tried,
And much the most answering things that he knew
Were geraniums (red) and delphiniums (blue).

The Doctor stood frowning and shaking his head,
And he took up his shiny silk hat as he said:
"What the patient requires is a change," and he went
To see some chrysanthemum people in Kent.

The Dormouse lay there, and he gazed at the view
Of geraniums (red) and delphiniums (blue),
And he knew there was nothing he wanted instead
Of delphiniums (blue) and geraniums (red).

The Doctor came back and, to show what he meant,
He had brought some chrysanthemum cuttings from Kent.
"Now these," he remarked, "give a much better view
Than geraniums (red) and delphiniums (blue)."

They took out their spades and they dug up the bed
Of delphiniums (blue) and geraniums (red),
And they planted chrysanthemums (yellow and white).
"And now," said the Doctor, "we'll soon have you right."

The Dormouse looked out, and he said with a sigh:
"I suppose all these people know better than I.
It was silly, perhaps, but I did like the view
Of geraniums (red) and delphiniums (blue)."

The Doctor came round and examined his chest,
And ordered him Nourishment, Tonics, and Rest.
"How very effective," he said, as he shook
The thermometer, "all these chrysanthemums look!"

The Dormouse turned over to shut out the sight
Of the endless chrysanthemums (yellow and white).
"How lovely," he thought, "to be back in a bed
Of delphiniums (blue) and geraniums (red.)"

The Doctor said, "Tut! It's another attack!"
And ordered him Milk and Massage-of-the-back,
And Freedom-from-worry and Drives-in-a-car,
And murmured, "How sweet your chrysanthemums are!"

The Dormouse lay there with his paws to his eyes,
And imagined himself such a pleasant surprise:
"I'll pretend the chrysanthemums turn to a bed
Of delphiniums (blue) and geraniums (red)!"

The Doctor next morning was rubbing his hands,
And saying, "There's nobody quite understands
These cases as I do! The cure has begun!
How fresh the chrysanthemums look in the sun!"

The Dormouse lay happy, his eyes were so tight
He could see no chrysanthemums, yellow or white.
And all that he felt at the back of his head
Were delphiniums (blue) and geraniums (red).

And that is the reason (Aunt Emily said)
If a Dormouse gets in a chrysanthemum bed,
You will find (so Aunt Emily says) that he lies
Fast asleep on his front with his paws to his eyes.

I worry that Joey will grow up in a world full of Doctors. Right now, he is such a happy little dormouse, in a world bright with red and blue. May he never let them dig up his geraniums.

Ask Before You Touch

There was a new mom at therapy today. Not new as in "new to autism"- new as in "baby is nine days old." Her older child was in therapy, but she had teh brand-new baby with her. Andy likes babies. Joey LOVES babies. And this was a teeny-tiny, brand-new baby with big eyes and headfuzz, and mom still very round and new-mom looking.

The boys were very good. They washed their hands, and only touched the baby on her head to feel the soft babyhair. They smiled and giggled and made faces at the baby, and didn't get in her face. Joey talked about the baby being little, the baby was awake, the baby was soft, and said he liked babies. He turned to Mom, and talked to her about the baby. Very nice social moment.

Then he reached out with one finger an proclaimed, "I want to touch the booby!" and gave her very round breast a stroke with his finger. Then he was off to another point of interest in the room, leaving me, the Mom, the office manager, and a couple other moms in a moment of speechless awe.

I must say, the Mom was an absolute sport about it, very gracefully not saying anything. The office manager just abotu died on the spot trying not to laugh. I initially thought he intended to say "baby" and only touched the Mom because he remember he wasn't supposed to touch the baby, but apparently everybody else thought it was quite clear.

I wonder where he's picked that up. He often likes to touch peole, especially on exposed lower arms, but I've never had him do this before. I've been trying to teach him to ask before touching someone, and I honestly think he was trying to do just that by making the announcement that split second before acting. Now we just need to go back to just arms, please. Thanks.

No quacks

New t-shirt design. Thought it might be a good thing to spread around.

That ducky place in C-ville is calling. I guess they need some more business. Not enough suckers going in and giving them their life savings to fix their kid. Caller ID is my friend.

New Shoes

Joey isn't feeling very well. I got the hint this afternoon after church, when we went to buy shoes.

This weekend is Virginia's "tax-free weekend." That means we instantly save 5% on everything we buy for school- supplies, clothes, shoes, etc. That may not seem like a lot of money, but around here, every little bit helps. And when shoes cost $50 a pair (holy frijoles!), and you've got two of them who are going to need shoes, that's a quick $5, before we start on anything else they need. So off to the shoe store we go.

Both boys have extra-wide feet, so the selection is limited where-ever we go. Walmart shoes don't fit them at all. Nope. We have to go to the $50 shoe store to get shoes on these feet. Great. And we still have all of two pairs to choose from. Fortunately, both are velcro. Joey picks out a pair that have those flashy lights in the heels. Good- those are the cheaper of the two pairs. Andy picks dark ones over light ones. Fine- we won't see them get dirty as quickly. Done. Let's get out of this madhouse of running, screeching children before I have two meltdowns on my hands.

Then Joey decides he wants to wear his new shoes out of the store. Nevermind that they are for regular school- a month away- and have already been boxed back up and bagged. He wants those shoes. Now.

Of course, it's really a problem of the noise, the heat, the change of schedule, the heat, the unfamiliar store, the heat, being tired, and of course, the heat. This is not about shoes at all. The store folks are very nice, and they know Joey, and they know about the autism, so as he begins the spiral into meltdown, they do their best to hurry things along to get me out the door... but it's too late. In his frustration, Joey bit me.

The biting is new- at least the biting of other people. He's picked it up from Andy, and I have no clue where Andy got it. Andy will do it if he feels in immediate danger or extreme annoyance, such as another child trying to snatch something from him. Joey does it with deliberation and thought. You can see the wheels turn and the decision being made, that half a beat of deliberate-ness that makes the whole mess seem that much more not a failure on his part, but a failure on mine. Somehow, I have permitted, and reinforced, this as an appropriate tool to get what he wants, or make himself "feel better" (I doubt he actually feels better for doing this, but before the action is done, it seems like a good idea to try it, if you know what I mean. Kind of like on a sunny day, it may seem like a great idea to go to the beach, until you realize the sand is burning your feet, the sun is burning your skin, and you forgot to bring sunglasses.) What's worse is I feel I have never tolerated this behavior. This is an instant-reprocussion situation. The full shop of parents glare at me as I pick up my 70-odd pound screaming child, toss him over my shoulder like a sack of potatoes, take his smaller brother by the hand, and march out of the store to the van.

I'm sure I'll get lots of wonderful critiques about that. Did picking him up and/or removing him reinforce the behavior? Should I have allowed him to melt down right there in front of the door? Is a time-out in a van really going to help? How does one correct such behavior, and what behavior can one expect of an overwhelmed 5-year-old?

And here is how I saw it: I made the mistake of trying to get the shoes on a day the store was crowded, the five bucks be damned. Once the mistake was made and the consequence in full swing, the appropriate course of action was to remove the child so that he could regain control and calm. Strapped into a car seat with the A/C going was the only option I really had available. There was no way, once Joey realized he had actually bitten me, that he was going to walk out of that store on his own two feet- the next action was going to be complete puddle of child, because meltdown was complete- about a level 4, if you leave the bite out of the calculation. But definitely meltdown- he was no longer functional. All my fault. I'm the stupid person who tried to take him into the crowded store to buy shoes, remember. On the hottest day of the year, no less.

I'd go into what one should expect from an overwhelmed five-year-old, but I didn't like the hate mail I got last time, so I won't. (I got the gambit from "How dare you think/wish this child should behave any differently than he does?" to "How dare you let him behave that way?") I will say that these are the realities here. Five dollars may not seem a lot, but it is a week's worth of breakfasts. Five dollars is an extra t-shirt for school. Five dollars is 10 minutes of speech therapy (thank you, insurance, for finally kicking in!) Five dollars is a trip to the pumpkin patch. Five dollars is milk for the week. How many crowded stores have we been in, and out of, and not had a single whine from Joey? Hindsight is 20/20- better, when you find yourself constantly judged and found wanting.

Which brings me back to the beginning of this ramble, which is that Joey is not feeling well, and I know this because our trip to the shoe store ended in meltdown. We've been having more of those than usual, but not more than usual for summer, does that make sense? Anyway, they still can be those first little inklings of trouble. I wouldn't say he was grumpy the rest of the day, no more than usual on long car rides (we went to pet goats in Madison), but he wasn't right. Sure enough, we put him to bed early with a little fever. Poor little guy.

Hair cut

This week, I cut off my hair.

This may not seem like a big deal to most folks. After all, it's hair. Hair grows. Hair gets cut. It is the way of things.

But here, my hair cutting is an event worthy of blogging. For one, the last time it happened, Andy was a babe in arms. Three years ago- my life was so completely different, the only thing I can say is, way back in that other life, there was time to get a hair cut.

For two, my boys accepted the change without a hitch. There was a time when cutting my hair- a sudden change in appearance- would have been very upsetting to Joey. He still gets excited if he catches me with my hair down, like when I brush it in the morning, or if I need to fix and replait it during the day. It's different, Mommy looks funny with all that hair everywhere. Andy thinks its funny, too- especially playing peek-a-boo with Cousin It.

And finally, there's something odd about going from hair to your butt to hair only to your shoulder. It now only takes me three minutes to shampoo my hair. Weird.

It has to be done occasionally, mind you. Otherwise the weight pulls it out, and at my age, hair loss can be permanent. Also, it tends to get a little frayed, since I don't have time to take care of butt-length hair properly.

And hey, even with trimming up the ends, I have twelve inches to send to Locks of Love!

Small Bites

We have more new foods this week! Joey ate a ham and cheese sandwich- with proper bites- for his OT this week, and he will also eat fresh peppers, sliced up! We are SO excited! Perhaps we have turned a corner with oral sensory issues? Could we be seeing real progress for healthy eating?

Joey's new "thing" is sharks. He saw some prehistoric ones at the museum, and then the prizes this week at OT have been sharks, and he's hooked. Add a new love of Finding Nemo, and bingo! Boy finds new obsession. With plenty of teeth.

On the other hand, we've also added a new biting issue- the boys have decided to bite each other when angry. Joey already bites his hands and clothes if he gets frustrated, but this biting other people thing- not good. We'll keep you posted.

Random Moments

It's three am. There is a low noise down the hall that threatens to turn into a scream, so I roll out of bed to intervene. It's Andy. It's almost always Andy these days. Apparently the bad dream involves something with Joey, and he wants brother. I left brother fast asleep in my room, sprawled on Allan's big recliner (unreclined). I manage to diffuse the problem. I return to find my half of the bed filled with boy. I give him a kiss, then waddle over to the other side, where I do the same for the handsome man I married, who is also fast asleep, cuddled with said boy. I get in the recliner, recline it, and try to go back to sleep.


It's mid-afternoon, another day in the waiting rooms of the therapy clinic. Our speech therapist has taken pity on Andy. He likes to play with one of those plastic dollhouses they use for teaching social skills and household words and stuff to kids. She isn't using it today, so she's put it out on the lobby floor for Andy. He's stretched out on his tummy, in the middle of the carpet, playing his littleheart out, sucking on a lollipop he "won" by having dry pants and going potty like a big boy. The house is inhabited by two "baby" dinosaurs. The peace is broken by a crunching noise, and the stick emerges from his mouth, devoid of candy, so that he can say: "Mommy! Need the potty!!!"


The lull in activities before dinner. Two boys are clomping through the house in my shoes, round and round from kitchen to diningroom to livingroom to hall to kitchen, around and around. One has them on the wrong feet. They are also screeching, and hanging their arms, reminiscent of gorillas in Danskos. I realize they are actually both T. Rexes in Danskos.


Morning again. I've managed to retain my space in bed. A soft little hand touches my face. Then little lips find mine. Yes, the boy is up. Suddenly, a small body crashes atop mine with a wild giggle. Yep, the other one is up, too. Now four sets of little fingers are poking, wiggling, trying to tickle me. Get up, Mom! It's time to PLAY!!!


The big yellow bus chugs up the street, sighs and squeaks to a halt in front of the house. I head down the porch steps, admiring the way Joey can now step off the bus and come to me, instead of me having to go fetch him from the bus door. He turns and waves as the bus pulls away, with likely the last words I will hear from him for the next hour: "Bye, bus! See you tomorrow!"


Sometimes, one must stop and admire the normalcy.

Dinosaurs (Act II)

We headed north again today, and spent the afternoon with the dinosaurs in the Museum of Natural History. I was kind of expecting them to hot-foot it in to the big dinosaur hall and spend most of the time there. I was surprised by side halls.

If you have never been to DC, and never seen the dinosaur exhibit (or not recently), then you're probably saying "Wha?" so let me take a little detour for you. The Museum of Natural History has changed dramatically from when I was young and wandering along the halls. For one, most of the exhibits have been scrubbed to unmerciful and character-less sterility, or tossed altogether. All of the exhibits my great-uncle Watson set up are gone, so that none of the animals in the mammal hall have any sense of habitat or context, the stuffed examples are stuck on glass shelves in glass cases. Being in the art business, this is exactly what most art and cultural museums are trying NOT to do. Why it has become fashionable in the curating of natural history, I haven't the slightest clue. Anyway, the dinosaurs have been partly spared this catastrophe, and whomever was in charge of scrubbing at least, for the most part, understood the idea of context and why it is important. The old hall retains interest. It is split into four main sections, three halls backed by a fourth. The three halls have ancient oceans and ancient forests flanking the main dinosaur hall, and then in teh back are the ancient mammals. A new cafe has been set at the far end of the dinosaur hall. The big fossil bone collection- things like brachiosaurs, tyrannosaurus rex, triceratops, stegasaurus, etc.- are in that middle main hall, will a very high ceiling (and a loft area for pterosaurs). The Oceans and Forests halls flank this main exihibit, but are seperated by walls, and have lower ceilings; so you can sometimes glimpse into the great dinosaurs from the side halls, but mostly, they are seperate exihibits with more carpetting and fewer echoes.

Another difference from when I was a kid is the sheer crush of people. When I was young, you could walk into the museum on a Sunday afternoon and have the place almost to yourself. Just not a popular day to go museum-hopping. Now, there is never a dull moment there. The crush of humanity is incredible. With the crush of human life comes the noise. Now add the echoes. It is enough to make me frantic. You can imagine what this is like for my guys.

The side halls, however, do not have the echo, or the draw. It still is crowded, but not the great, noisy, echo-y crush of the main dinosaur hall. To my surprise, despite the draw of t-rex and allosaurs, the boys made for the side halls. Quieter. Softer surroundings. Movies about fish mouths being made for sucking in worms. This is where they chose to spend the majority of their visit.

Yes, we did go out and say hello to the bones I consider old friends. My brother used to love the pteradactyls, hovering overhead, running up the stairs and reaching to as if we could touch them. Brachosaurus arching over the walkway, so it towered over you, the empty sockets gazing into space as if back to its flesh, long lost to time. But we spent most of the time exploring the world of the ammonites, the mosasaurs, and ancient mudpuppies.

These boys have a talent for finding what makes them comfortable. This is a good thing.

Initiating

Every Saturday, Joey and I head over to the church to listen to the music. There is a little band that plays contemporary Christian music for the Saturday service, and Joey likes to watch the drums and the guitars and whatnot. We practice some signs and some social skills and that sort of thing, but we usually scoot out before the sermon- sitting still through someone else talking is not Joey's forté.

There is a lady who has taken a liking to Joey. She's an older lady with not the best health, but plenty of smiles. She is very tolerant of Joey pleying with her jewelry, and one week she even brought in a puppet to play with him.

Before the muic starts, Joey usually spents the time running up and down the aisles, tracking the pews. Since this is what he does to make himself comfortable, no one is really there yet, and it isn't hurting anybody, I don't curtail this much. What five-year-old doesn't relish his first little tastes of freedom from Mom? He also hands out hugs to church members who ask for them as they wander in, like the pastor, and his friend, and the Sunday School director. When the first note strikes, he settles next to me for the music.

Yesterday, we were doin our usual wandering, when he saw his friend in the vestibule. We were at the front, and he caught sight of her- and made a beeline to her, said, "Hi!" and gave her a big hug! Then he stayed to say things like, "How are you?" Scripted, but appropriate, and self-initiated!

She hadn't called him over to her. She didn't ask the questions first. This was all on his own!

Yes, we're coming right along here in our little corner of the world.

Life is Good.

More reminders that Life Is Good:

I have a quilt on my bed that has sealife on it. The boys have decided it is a "pool" and they are "whales"- and dive on.
Signing the entire alphabet with Joey singing the ABC song.
Andy's eyes when he gets a new dinosaur- even though he has more than I can readily count.
The squeals of joy when you hit I-95 and announce, "Let's go on an adventure!" They just know they are going someplace good.
Listening to Allan singing the goodnight song he made up himself, just for his boys.
Andy chasing kitties.
Baking cookies- Andy and Joey like to take turns putting the cookies on the sheets and squishing them flat. (Next step: getting them to roll the balls!)
Joey reading the clock and then saying, "what comes next?" And when you answer, he says, with all enthusiasm, "You're RIGHT! Good job!"
Asking Joey what comes next at 12:59, and he says, "One o'clock!"
Swimming with boys as they run through sprinklers.
Andy asking for one more hug. One more kiss. One more story?

Big Ten

Taking up the thread from Mom-NOS, here are ten ways Joey and I are alike:

1. Neither of us like hot water on our hands or feet. Water than my mom thought cold used to send me screaming when I was a kid. Joey hates hot stuff, too.

2. Neither of us like to wear shoes. Bare feet are best.

3. We both love numbers. Onceupon a time, I was the top math student in my high school. Counting is comforting.

4. We both collapse when tickled. As in, lose all motor control, heap on the floor.

5. We both love Christmas, and sparkly Christmas ornaments. We both love nothing better than to spend an afternoon at Valley View.

6. We both love to cuddle. Even when Joey was teeny tiny, he loved nothing better than to be in bed with Mom and Dad, getting squished. :)

7. We both love the ocean. We could just stand at the surf and watch the undulation of the sea forever.

8. When in doubt, we both smile. Joey excudes positiveness. I have often been asked, "do you always smile?" I wish I could honestly reply "yes."

9. We both have little patience for eating. It takes me a lot of effort and energy to sit until everyone at the dinner table is finished- as soon as I have eaten, I'm ready to move on. Ditto for him. Sitting still is not something either of us do well.

10. We both have scattered interests. I know the common idea of autistics is a hyper-focus on a narrow range of topics, but for us, we tend to scatter and not hold too much interest in a single topic for too long. I'll watch one movie over and over for a few days straight, but then my brain moves on to hyper-focus on the next topic. Joey does this- he hones in for a few days, then moves on.

Ten ways I am like Andy:

1. We both love strawberry stuff. Yum!

2. We both like to look at packages in the graocery store. Some labels are really interesting!

3. We both like animals. I wanted to be a vet once upon a time and another life ago. Andy just adores anything furry. Or scaly. Or breathing.

4. We both have the devil in us. And that's a good thing.

5. We both like to look at books in bed. Usually together. :)

6. We both like flowers. I like looking at them and smelling them. He likes pulling them apart and finding out how they grow.

7. We both find car rides relaxing. He still gets to take a nap.

8. Neither of us like cacophony. We both find it highly disorienting and irritating. Andy will actually scream, then pace and track like Joey after being exposed to sudden loud noise, like when the band starts up at church.

9. Neither of us like cheese goldfish. I prefer plain. He likes pretzel.

10. We both like to make things. Andy loves little art projects, even if he likes keeping his fingers clean.

Anyone else want to play?

Communicating

As an art historian, part of what I am studying and analyzing is how people communicate. You have an idea (or your patron has an idea) and it must be communicated. How will you acheive this? What will need to be shown? How much of that message should be overt, and how much covert? What images and techniques will be used to convey meaning?

One thing I have notived is that when communicating a new idea to a culture, it is often communicated using images and ideas the culture is already familiar with to get the new idea across. For example, in early Christian art, much of the early imagery is taken from pre-Christian art. These images had meaning for early Christians because before they were Christians, they had been non-Christians; their culrue had been non-Christian.
Images of Apollo, with the connotations of light, power, and protection made excellent early Christ figures. The bearded Zeus, with the connotations of kingship, power, and maturity became a later favorite, particularly the image of Zeus at Olympia, where he sits enthroned (the image of Lincoln at teh Lincoln Memorial is also based on the Olympia Zeus). The Good Shepherd, with its roots in images of sacrificers and devotees combined with teh idea of the shepherd who protects his flock was another great favorite (usually in the youthful Apollo guise). Early Christians quickly and clearly got the idea of who Christ was and what Christianity was about by viewing these images.

This is a useful strategy for speaking to people about things they don't understand: put it into terms and ideas that they do understand, and go from there. Images and words are metaphors and analogies; re-presentations of ideas and experiences that another person may not have. How close can you come to the original, when the original is beyond reach of the viewer?

From this idea, we get the use of rainbow spectrums for autism. Puzzle peices. Trips to Holland. Are these analogies, symbols, metaphors good ones, or not? It depends on how they are used, really; but no analogy is perfect, and some of them are downright off-base; but can they still be used to communicate? I don't care for the way the puzzle peice has been used, but it is very useful in starting a conversation about autism, because it is so recognizable. The spectrum thing, taken from the diagnosis "Autism Spectrum Disorder" has its usefulness, but also its difficulties. Even the trip to Holland has its problems as an analogy, but when trying to explain the experience of parenting to a clueless person with no special needs kids, it can be really useful. Trying to explain parenting generally? Probably not. The image has its limitations, and those must be recognized; but don't toss the baby with the bathwater.

Trying to find new ways to discussing autism and being human with people who have more ignorance than sense is a great challenge.

How does one communicate to people who have no idea what you are talking about? Have never experienced what you are talking about? And do so in a way that makes not only the experiecne itself a little clearer, but also communicates what you want to say about that experience? What should we emphasize?

I've been putting together a variety of t-shirt designs as alternatives to the ubiqitous puzzle peice, because I think the puzzle peice misses some of the point. The way it is used implies that only autistic children are "puzzles"- but any parent can tell you that isn't true. All children have that mystery, all children have needs, we are learning about all of them. We are all puzzles.

The misuse of the symbol has lead to it being used not to refer to kids, but to autism itself, as a puzzle that needs to be solved (and thus reradicated) rather than as a symbol of unacheived understanding. Bleah.


During the Renaissance, a person's uniqueness was valued. Genius was something to pay an artist extra for. Being in control of your own destiny, educating yourself, creating your own life was valued. Today this individuality seems to be more of a subculture, an alternative lifestyle, rather than the mainstream. The lessons of the Renaissance may need to be re-taught.

Sometimes We Let Him Sleep

Oh, dear. This morning, Joey woke up grumpy. Mommy woke up grumpy. Not good. Most of you can see what's coming.

I have been, as you may suspect from my absence, using every spare moment of any point of my day to read Harry Potter. That is now complete. I refuse to give anything away. However, this has also cut into that most valuable commodity, sleep. No sleep=grumpy mommy. Silly mommy, she needs to go to bed, but she's readignHary Poter instead. Silly,silly mommy. Sleep is a waste of time.

So naturally with me grumping about the house this morning, and Joey grumping about the house this morning, when the milk got spilled, all hell broke loose. Level 8. Just what mommy wanted this morning. Worse, he was still in the middle of it when the bus arrived. The bus aide actually came into the house and got him- the idea being that the bus is very calming for him, so we wanted to get him on it. But I felt really, really bad, because I'm sure he was picking up on my grumpiness, which was my own fault in teh first place, because I didn't go to bed, because I was reading...

Meanwhile, someone bit Andy. I took him to the gym, and then took him swimming, and there are nasty bite marks on his shoulder- too small to be Joey, but Joey doesn't bite anyway. So we made sure to reort that to the gym people, so they can be on the lookout for a biter. Andy didn't complain about it until the gym people started fussing over it. I didn't intervene on that point, because I want him to understand he needs to tell somebody if he's bitten.

So when the boy camehome from school, I scooped everybody up an took them to Arby's for lunch. Spiced, curly french fries were a far bigger hit than I expected them to be, and I got to have a reuben for lunch. ;)

I think everybody's feeling better now. The power of food...

It's here! It's here!

Harry Potter and the Deathly Hallows is here! Woo-hoo!

I ran downtown and got one of the last copies available for the midnight madness. Very exciting. But I haven't gotten a chance to crack it open yet- working today. So here are ten things I hope are in this book:

1. I want a real nagini to come kick Nagini's butt. I know it won't happen. But I can dream. I still fume that Nagini is not a cobra.
2. I want Snape to turn out to be a complicated good guy. He's such a delicious character, I'll be really disappointed if she flattens him out and makes him evil.
3. More centaurs, giants, and house-elfs. I want to see the magical world filled with more than just us, and have them have their own struggles with good and evil.
4. I want Ron, Hermione, and Harry to live.
5. I want to know more about the curse that killed Dumbledore's hand. Was he turning into something really bad? Or was it just killing him?
6. I want Molly Weasley to go medieval on somebody's butt. She must be a pretty powerful witch, but we haven't really seen any of it. Ditto for McGonagal.
7. I want to know what Dudley was sweating bullets about when he was attacked by the dementor. What was his worst memory?
8. I want lots and lots more about Lily Potter, and when James learns not to be a little twit.
9. I want to know what happened to Ollivander.
10. I'd like more about Slughorn and the Slytherins. I'd like those shades of grey clarified- being a Slytherin is not being evil, but ambitious and self-serving.

Here's to J.K. Rowling, and the world of Hogwarts!

Strolling down Memory Lane (without a ding-dong thing on my mind)

There was something I was going to blog about. I've beenthinking about it since Wednesday. I thought about it on the way home from therapy. It was really, really good, important, pertinent to other conversations floating around the blogosphere. Now I have a minute at the computer.

I cannot remember what I was going to blog about.

I'm fairly new at the joys of memory loss and brain hiccups. When I was young, "steel trap" was an understatement. According to teh new ABLLS report we have for Joey, he can repeat back a series of four numbers. At his age, they never figured out how many I could do, because no matter how many they gave me, I could recite them back. I could recite exact conversations I had with people years before, and in my head could even see the faces of participants and the setting around us, and sometimes even the exact floor layout of where=ever we were. I would have made a fabulous witness, but fortunately, I didn't witness much that was that important. I have retained snatches of these memories, but like most people, the majority of my life is now lost to the sands of time. Sand on the brain.

This began in earnest when I became pregnant wih Joey; and then the pregnancy with Andy excelerated it alarmingly. I understand this is normal, especially for women- the hormones of pregnancy actually cause brain damage. I just find it incredibly annoying to walk into a room and have no idea why I am there- or even how I got there. I've taken to hooking my keys on the curtain rod on the door, otherwise I'd take an hour every morning to find them. This time of year I stock up on 10-cent spiral notebooks, because I use them everywhere- whenever I have a thought, if I don't write it down, I risk losing it forever to the sand in the brain. I started using the engagment calendar in my computer. If changes don't make it long enough to be recorded there, I get into trouble- miss appointments, show up for one that were cancelled or moved, etc.

Growing up really sucks.

Don't Be Afraid

Abfh has put up a really funny and thoughtful response to one of my favorite essays I use to try to knock a clue into the clueless, Welcome to Holland. If you're one of my friends without special needs kids, I recommend reading both essays. They are both wonderful gazes into coping with a life that isn't going as expected.

One thing I mentioned in my comment to abfh is that there is a basic attitude and ignorance problem in the "normal" world regarding not only autism, but special needs generally. The example that goes in context here are the parenting and childbirth classes I took when I was pregnant with Joey.

The textbook that came with the class does have a chapter on special needs children. It mostly focuses on problems with premies, but it also mentions things like Down's Syndrome. Autism isn't mentioned at all. The information is mostly about testing, and "talk to your doctor." Thre is very little useful information. The possibility of having a special needs child was only mentioned in passing in the class itself- mostly Down's Syndrome, and a mention that some kids might need some time in the NICU, especially if they are premature.

Why omit this very real and natural possibility? Why not bring it into the discussion, and let expecting parents think about preparing for the possibility? It's like being on a plane to Italy (you knew this part was coming, didn't you) without even having the suggestion that landing in Holland would be a possibility- and in fact, many excited holiday-goers have no clue that a plane routed for Italy could possibly land anywhere but Italy, or even that other countries exist. I mean, what if the plane lands in Lichtenstein (a country of which I am also fond)? I know a lot of people who have never even heard of Lichtenstein.

Wouldn't it be far better to note the possibility, so that we can at least take a peek at a tourguide of Holland before getting on the plane, or have an idea of where the embassy might be? But this is not the prevailing attitude "out there" in the "normal" world. Instead, instructors are concerned about frightening new parents "unnecessarily." Frightening them?

Standing in front of new and expecting parents, I think the first thing to say is "don't be afraid." The second is, "expect the unexpected." Even "normal" kids have "special needs." Some people just need more support than others to be able to survive and thrive. A child with special needs- born with them or otherwise- simply needs some extra support. How much depends on the need. What we should be providing is some basic resource information. OK, your kid has special needs... now what?

Parents who themselves have special needs seem to have a firmer grasp on the concept, because the possibility is so very present to them. For people who have never really dealt with special needs and disability, the whole idea is foreign. These are people who have no idea what an "IEP" is, have never heard of taking a kid to a neurologist, a gastrologist, an endocrinologist, or may even not know what a perinatologist is. These things are not part of their world. When I spoke, once upon and a long time- over a year- ago, about the day the word "autism" came into my life, that is really how it felt. I had no idea. And folks, I'm a very educated person. I know why people think of Rainman when the word autism drifts in- its the only exposure people had, if they had that much. Nowthere's a couple other pop culture references, but no more real education out there for the general, run-of-the-mill Nellie or Nathan Neurotypical.

People with "special needs" and disabilities are different. Different is unknown. Different is scary. But why? Take the fear out of the possibility of having a special needs child. Special needs kids are kids, like all other kids, with their own talents and gifts to offer, and their own lives to live. Don't be afraid. All kids come with challenges.

What happened at school today?

Joey has been picking up on questions about his day. He's at least starting to understand that we expect him to make some kind of answer, and that saying something to the effect of "I had fun!" means the activity is likely to be repeated. He will answer yes and no questions with more or less accuracy, depending on how tired he is and how much of his attention you have.

However, he will not talk about school. Trying to get him to talk at all immediately after school is a lost cause. I am going with the working assumption that he is tired, trying to regain his bearings, and perhaps is simply unable to access language after a lot of hard work. I'll keep you posted as I test this theory, as he gains more ability to communicate with us. Anyway, no point in grilling him immediately after school. I'm lucky to get any words at all.

However, asking him questions about school is generally problematic. If he's really with me and I have his attention, he'll give me scripted responses (What did you do at school today? "I had fun, Mrs. Huff was at school today, Went to school" etc.) and will answer all yes/no questions with "yes" (Did you sing a song today? Yes. Did you read a story today? Yes. Did you play outside today? Yes. Did you turn your teacher into a frog today? Yes.) For other activities, I get some spontaneous answers. (Did you sing a song in Speech Camp today? Yes- Wheels on the Bus! Did you enjoy swimming today? Yes- sprinklers! Fun!) For school... nada. i have no idea what he's doing this week. The teacher sent me home a note on the first day, but since then, nothing.

I find this a little odd, and a little worrying. I could do some more peculation as to why school seems to be a taboo subject for question-answering, but it wouldbe just that- speculation. It's also worrying that I have no way to really supporting the school program at home. If I don't know what songs are being sung or what stories are being read, I can't keep up the theme at home. For example, if they are doing, say, Three Billy Goats Gruff, I can play the Leah's Farm Signing Time more, maybe plan to take him down to Maymount to feed goats this weekend, and read him fairytales with trolls, and talk about fairies and things with him. Or if they are singing "Wheels on the Bus" every morning, I can get out his buses and we can sit outside and watch the Fred Bus and the trolley go by, and talk about how people get where they need to go. But I have to wing it.

I'm starting to think he really did turn the teacher into a frog.

Non-listening

You know it's time to stop trying to discuss and just smile and nod when these words escape the lips of your conversation partner:

1. Yeah, normal kids do that, too. Or it's variant, "Yeah, my [normal] kid does that, too." Perhaps to a far lesser degree than my kid does whatever we were talking about. Usually I get this about meltdowns. "Yeah, my kid melts down in the grocery line, too. She hates to wait. She always wants a candy bar."
What I want to reply: "Really? Can she still speak well enough to press for that candybar she wanted? Yes? You have no clue what a meltdown is."
What I usually say instead: "Really? Must be tough to get her through the candy line. They need to keep that 'no candy/no tabloids' line open more."

2. You know, I'm a little autistic myself. This line is usually followed by some minor problem that vaguely suggests a desire for order, or habit. Such as "I don't like florescent lights" or "I like having my coffee with two and a quarter creamers." Small sensory issues are not autism, people. What really gets me is this usually forebodes some comment about autistic adults not needing services (see #3).
What I want to say: "Grow up."
What I usually say instead: "I have my foiables, too. If we didn't, life would be really, really dull."

3. S/he doesn't need {insert service here}, s/he just needs to grow up and learn to do things for him/herself. I wish I had someone to {provide specific service} for me!" OK, folks, I have mild executive dysfunction, some sensory issues, and an occasional stutter. These things don't get int eh way of functioning for me. As an adult, I am expected to clean my own house, keep my own records, shop for my own needs, etc. and I am able to do so, even if I need a little extra push with systems, ideas, and tools. It may not always happen, but I an able to make those compensations. Some people require extra people or extra equipment to make those kinds of compensations- such as an aide, or a communication board.
What I want to say: "So, you're saying a paraplegic shouldn't use a wheelchair, because he's got legs?"
What I usually say instead: "If you're having trouble with {specific service mentioned above}, maybe you should {hire someone to provide that service/buy equipment to help complete task.} [Since the most common one is about having an aide to do things like help with grocery shopping or household tasks, I am usually recommending a maid service or a good mop.]

4. Your child isn't autistic. He just needs a little discipline! This is usually followed by suggestions of violence.
What I want to say: "And where di you get your degree in child development or neurology? With a specialization in autism? And on what basis are you making your diagnosis? How would you like it if someone smacked you for wanting coffee in the morning?"
What I usually say instead: "Yes, we're really lucky, Joey's a good kid, working hard. However, his doctors all agree, he's definitely ASD. I see he's bothering you with his {unusual behavior- usually tracking}, so I'll let you get on with whatever you're doing- we need to go home."

5. Oh, he'll be fine. My cousin's friend's great-aunt's brother twice removed didn't talk 'til they were four! I got this a lot more when Joey was non-verbal, but it still pops up when people notice he's not speaking the way other five-year-olds speak.
What I want to say: "Did they say "momma" and "daddy"? Did they point to objects? Yes? Joey didn't."
What I usually say instead: "How interesting. Speech delays are fascinating. Anyone else in your family have speech delays?"

6. All children have eccentricities. This is another one of those red-flag phrases that means the conversation is about to bend in the direction of "Your kid's not really autistic" or the person has little experience with sensory dysfunction, ritualistic behavior, perseveration, or echolalia. Yes, some little kids like to repeat words. Few repeat entire episodes of television shows. Yes, some little kids like to jump around and crash into things. Few will want to do this for hours on end, and to the point of bruising themselves. Lots of little kids don't like sudden, loud noises. Some will even scream in response. Few will have hour-long meltdowns or have to track lines in the carpet for the next half-hour. And few would think the closing of a car door qualified as a "sudden, loud noise."
What I want to say: "Stuff it in your ear."
What I usually say: "Yes, that's how personalities are made. My guys sure are characters- didn't have much of a chance not to be, with me as their mother."


Sometimes trying to explain the difference between raising a normal kid and raising an autistic one is just not worth the effort There slittle point in trying to talk to someone who is telling you they have no intention of listening to a word you say. Tiem is at a premium here; I have better things to do. When you get that cue of "shut up- I don't want to talk about you or your kid" with the further implication of "I just want to talk about myself" sometimes the best thing to do is to oblige, and get out of the conversation pronto.

The Bright Side

Sometimes when things happen, it's better to look on the bright side.

Problem: Your kids are bored in the store and start smacking each other for fun.
Cons: Screaming children in the middle of a crowded Walmart is never a plus.
Bright Side: You aren't going to be in the store very long, so you won't spend as much money.

Problem: Your kid knocks his head against your $3000 LCD HDTV, cracking the glass.
Cons: No TV. You think we can afford to replace a $3000 TV? And we checked- it costs even more than that to fix it.
Bright Side: The Oobi theme will no longer be piped at top volume through the house, and you may get "Sesame Street" out of your head at last.

Problem: Your kid gets hold of a sharpie pen, and loves to write on anything that is NOT paper.
Cons: You now have black scribbles on every surface imaginable, and some you thought were inaccessible. The furniture, the floor, the walls, the computer screen...
Bright side: You have a blossoming artist. You discover what will take sharpie ink off of surfaces. There are no more sharpie pens in your house.

Problem: Your kid gets carsick unless you stop every 30-40 minutes, and you have a four-hour (or more) drive ahead of you, and you can't cancel the trip.
Cons: The four-hour trip is going to take a LOT more than four hours, and you are going to need to take a LOT of extra clothing, and you're going to have a LOT of cleaning to do until you figure out today's pattern of warning of signs (did I forget to mention that they change?)
Bright Side: You will know where every fast-food resteraunt is between home and where-ever you are headed. You are about to have a very clean car.

Problem: Your kids have just figured out the trigger on your Wetjet, and the entire bottle of cleaner is now in a pool on the floor.
Con: You have little wet footprints through the house, cleaner on the floor, and you're going to have to clean it up, because you don't want little hands in floor cleaner.
Bright side: You are about to have a very, very clean floor.