Spring Party

And from the Andy front:

Andy's class had their spring party on Wednesday. His teacher is very very pleased with him- Andy loves school, and is adapting well. He's ahead taller than everyone else, even though he's one of the youngest in there. He sits to eat his snack and everything. It was fun to watch him go with the flow, follow instructions, and look at books with his friends. It's a little strange, too, since Joey didn't do these things at this age; he didn't talk with other children, tell me or show me things, insist on things. On the other hand, its also fun to see how they are/were the same- still wanting to hug on Mom because she came to school, still wanting to be the one who holds the book and trn the pages when the teacher is reading. She also mentioned another similarity- Andy is considerate of his classmates' feelings. He does his best to help them, share with them, and does his share in cleaning up.

The class is a little more cliquish than I was expecting of 3-year-olds; the boys tend to leave Andy alone and bunch together without him. He's getting along fine with the girls, though.

I'm going to be in trouble when he becomes a teenager.

Economic Options

Just when you think you've got your feet under you, the economy takes a tank.

There are some economic realities when you have a kid in therapies. One, if you own a house, no matter the mortgage, you are at the mercy of your medical insurance. If you are lucky like us, your medical insurance will pitch in for occupational therapy, and (less often) speech therapy. But educational tutoring and "therapy"? You are on your own- or stuck with what the school gives you.

Which means when the economy goes down, folks that are not being helped already by social services, the schools, and community services due to low income have to choose between therapy for the child and paying the mortgage/rent. Therapy or food? And what about the second mortgages we already had to take out to pay for therapies? What happens when home values crash, and those equity lines and second mortgages are "called in"?

Which brings us to the question we have on our minds here: continue ABA, or not?

Joey gets two hours of ABA per week. For folks who have heard kids need 40 hours per week, we're a little farther along in the program. We're not working on discrete trials for responses; we're working on supporting the school program and generalizing skills. We've moved beyond having some college kid sitting at a table with flashcards and M&Ms. Besides, at $65 an hour, who can afford it? Private pay, we get a 30% discount. That's $78 a week, or $314-$390 per month.

Imagine if we could put that money towards the mortgage, instead of taking it from the mortgage. What is more important for Joey, generalization therapy or a roof over his head?

Wordless Wednesday: Hard Work

Homework Project

Joey has a homework project we are working on- a poster about himself. So I printed out some good pictures of him in various places and with various people, places he likes to go and things he likes to do, his toys and his brother and all that kind of stuff, all our "greatest hits". Then we went through them and I told him to pick out his "favorites" for his project, in which he would talk about himself with his friends. (He's going to have to get up in front of the class and present this!) It was really interesting what photos he picked out, and what he had to say about them. I didn't limit him at all- he kept picking, we kept talking and writing. I had him write sentences about the pictures on his usual paper, and we'll cut the whole mess out and glue it to the posterboard in the morning.

So what did he pick?

We were required to have him include "I was born April 10" and "I live in Fredericksburg." To accompany these two very boring sentences, he selected a picture of his Grandma holding him in the hospital. Granted, I gave him a limited selection to go with these, but they were an array of very early pictures of him. Did he pick the one of mom holding him? No. Grandma. It's a lovely picture, though.

Then from the throng he selected a picture at the beach. I love the pic, though I would have picked the one with him looking out over the ocean. The one he picked is from the fall. Probably remember it better. Anyway, he wrote that he liked to go to the beach "because I like the water and the sand." All by himself.

He picked himself playing the snow, riding his bike, and playing in the shark mouth at DinosaurLand. He also wanted the pic from Halloween. The sentence I was trying for was "I live with my mom, my dad, and my brother, Andy." What I got was "I live mom, my brother Andy, and Joey Little Bear, and T-Rex." Poor JoeyAndyDad. But this was the photo he wanted- and notice Dad is there. I think he got a little excited and forgot words in the sentence. I thought I'd toss in a picture of me when we glued things together tomorrow.


All weekend he's been saying he doesn't like cats, and been shying away from our cats. i know he has a love-fear relationship with dogs, but he's usually OK with our cats. After all, they've been here longer than he has. But I was surprised when he pulled out a picture of the cats (especially since I didn't mean for it to be in the stack of pictures. Surprise!) His sentence? "I have 2 cats at home. They are Luna and Ellora." I had to remind him of the names, but he could pick them out in the picture. Later, when Ellora came in to remind me she needed dinner, he triumphantly chimed, "Hello, Ellora!" I think she was confused, since he's been stand-off-ish, and suddenly he wanted to touch her. She's not into being touched.


And speaking of Grandma, he wanted her to have a sentence all her own. With no help at all (and not even facing me... he starting writing with his back to me): "My Grandma is Grandmother Bear. I love her." A voluntary, spontaneous, and appropriate pronoun. Wow.

Um, Hi.

As an avid reader of this blog, I am very honored to be allowed to write stuff here.

The Mrs. had been saying how I should start a blog and I mentioned that I thought Blogspot allowed for multiple bloggers, and here we are. A put up or shut up type situation.

No more backseat blogging for me, such as the suggestion that she post the 'Dinosaur Center' comment from Andy.

Joey was in one of his totally locked-in and focused moods today, which means that he was on his Leappad doohickey all day. Now, we have learned that when he appears to be off in lala-land, he actually is only devoting 80% of his attention to one thing. There's still 20% left for other things, which occasionally includes hearing, which is always nice.

He was so focused on learning cursive writing that it appeared to everyone at dinner that he was off in his own little world. Which is basically the perception of autistic people- that they are oblivious to their surroundings. Not interested in other people. Humorless automatons.

Well, five minutes with Joey will destroy that perception. In this case, Andy was tired and telling everyone "no" and to leave him alone, when Joey piped up, "Leaf me alawwwnn", without even looking up from his toy, and began to giggle. (Poor kid, he comes by this smart-aleck behavior honestly...)

So, anyway. Hi. Thanks JM for letting me graffiti your blog from time to time. Don't worry, folks, I won't hog the mic.

Please welcome...

I have added JoeyAndyDad, my adorable and wonderful husband, as an author to our blog. Be looking for new posts by JoeyAndyDad soon! And be sure to say "hi"!

Random moments II

In a room full of school personnel, discussing Joey's strengths and weaknesses, it is much like a sea of fog with oases of insights into what Joey can and cannot do. His expressive language deficits are severe, yet he seems to speak because he scripts so well. This is not getting through to them, you can see it in the blank eyes and confused frowns. "Have you ever read A Wrinkle In Time?" I offer. "He's like Mrs. Who." Faces light up. Understanding is gained. We are all on the same page. How often does that happen?

I race over to the door of Andy's classroom- it is already open. I am late. Not much, but enough. He is left waiting. His teacher spots me, calls into the room. Out tumbles a small yellow thing, who pounces into my arms. The teacher gives me a double thumbs-up. Good day. No time-outs. The little yellow-clad child chatters at me, something about green, birds, and dinosaurs. The dinosaurs part may just be his inclination to add the word "dinosaurs" to the ends of sentences (kind of like King George in Blackadder adding the word "penguin.") He could very well have said "The trees are green and full of birds dinosaurs." In fact, he is saying something like that, as there is a shrub on the way to the car that is full of birds and newly popped buds of leaves, and he is drawn to it like pins to a magnet. If it's alive, Andy is all over it. He dances around the shrub for a minute or two before I get him to the car. He starts to yell, "No Grandma! Don't want Grandma!" until he notices that her usual seat is unoccupied. He stops. He stares. He turns to me. "Where is Grandma?" he demands sternly. "She's not here today, honey," I explain patiently. "We're going over to the office to see if she took her trip to Baltimore." He begins to melt down. No! No Grandma! Where is Grandma? (Grandma, never forget, you are loved...)

"Hard day." These are two words that strike fear and concern into my heart, especially when they are at the start of the conversation with Joey's classroom aide. I get to talk to her when I pick him up for therapy. Joey is not usually violent, but today he came for a classmate like a crazed thing as gym was ending. They had been sharing a ball, bouncing it between them in some kind of game. When it came time to put it away, the other child was putting it away when Joey came for him, and hit him. He also had been sassing the aide, also unusual. There had been an assembly, could that have set him off? I take him to the car, tell Grandma the news. There is nothing for it- we have to ask, even during after-school mood. "How was school today?" Grandma asks cheerfully, and we make ground right away (he's just been listening to Mrs. Shaw talk about his day, after all). "D. keeps taking the ball!" We want to cheer, he answered with relevant information, but we want more information. Grandma comes up with a usually calming question, as this response has upset him, "What color was the ball?" "Blue." Ah, the color of the week. All explained.

The boys bounce in, still in pajamas, having granted us the luxury of a lie-in to 8 am. I have spent another night in the recliner to accommodate our regular nightly boy visit. They happily pile on, a great heap of boys. Joey snuggles into my space, kicking me aside again. "Momma! Move!" he demands, "Not enough room! Get in the chair!" Ah, cast aside like an old shoe.

We decide to go researching some home repair materials, including a new bike shed for the bikes. Off to Lowe's! We pull around the corner in sight of the store, and Joey triumphantly reads, "Garden Center!" "Good reading!" we praise him and clap. Then Andy announces, just as triumphantly, "Dinosaur Center!" Laughing that hard while driving is very dangerous.

The pizza place is familiar, but crowded, so Joey takes in the toy du jour, a Leapfrog Phonics writing desk. Several other customers give us the hard looks of the unappreciative as the toy beeps and talks, announcing the letter and playing its little tune as it demonstrates how to write the letter. "G!" Joey announces, "My last name!" All well and good. I look over at what my kindergartener has written to see a perfectly done cursive "G". Ah yes, the toy has a cursive setting. I better send a warning email to his teachers when I get home.

Guess what?

Joey is still autistic!

Yay!

Meeting adjourned.

Triennial

Barring snow...

It's tomorrow at 9:30. Should be a piece of cake. Going in prepared for an ambush. Wish I had a new letter from Kluge to take with me, but we'll muddle through.

Wordless Wednesday: Field Day

A Field Day

Yesterday was MidWinter Field Day at school- a field trip to the Field House to play field games inside on fake grass- complete with fake dirt. Yes, fake dirt. Apparently it is good for cushioning. The kids get just as dirty, by the way the "fake dirt" rubs into little hands and smudges across little faces and clothes. But they don't get wet or cold, so there's a plus.

The whole kindergarden went. I got to go as a chaperone. I had to meet them there, because there was no room on the bus (I noticed I was the only parent waiting for the buses in the parking lot. I was also the only special ed parent. Go figure.) We had five adults for six kids. Other classrooms had four to five adults for twenty to thirty, except the inclusion room- they only had 18 kids.

Our kids had a great time. We modified the games a little, so the instructions were easier to follow and expectations more in line with success. For example, we had a relay race that required our kids to jump, gallop, and skip. We all looked at one another in dismay- none of our kids can skip. So we kept the jumping, had them try the galloping, and then had them run. Also, our group was eerily quiet. The other groups were running around, screaming, squealing, laughing, yelling to each other. Quite a din. But ours? Well, we had laughing and some squealing, one kid with several (expected) meltdowns, but really, quiet. Most of them don;t speak well.

In some ways, the day was startling. Seeing Joey next to his non-disabled peers always highlights his disabilities. I just don't think of Joey as disabled most of the time. He's Joey, he has special needs, I have to pay attention to the supports he needs- but I just don't think about him as disabled. He's Joey. Next to the general uproar, it is always a bit of a shock to see what other kids can do, and Joey clearly cannot. He's so close... so close... yet so far, so separated. It was also a little disturbing to see kids that clearly needed to be in special ed who were not. Like Joey, you could see the isolation. Left in the swarm, they were left out, ridiculed, pestered, nagged. Adults were too taken up with supervising so many kids that there was no possibility of supporting those kids properly. One kid toe-walked and flapped all the way from the bus into the building, and every time I saw him, he was sitting against a wall, instead of participating. That was sad.

But in some ways, it was great. Joey does so much more than he used to. He can follow instructions, he can catch a bean bag, he can run and jump. He even did some crab walking, though he got frustrated with it and finally gave up and just crawled. He did the limbo with his friends. They did a whole game of pretending- pretend to paint pictures, pretend to catch balloons, pretend to ice skate- and he could do these things. And he was so happy, playing among friends. He was happy his mom was there. He was happy to eat a peanut butter sandwich. He was happy to play games. Everybody wanted to be with him, sit next to him, play with him. He was having a fabulous time. He enjoys life.

He was, of course, a mess the rest of the day. That's OK. I just had to hug him more, and smooch on him more, after a morning of lots of extra hugs and kisses.

Life is good.

Rooster's meme

ghkole at Rooster Calls has put up what she may not know is a meme: questions for us to answer about ourselves and blogging. But I'm game, as usual, so here it is:

- If you blog, do you tell people in your family or at your job about your blog?

No. My husband knows about my blog, and people find it, but I don't run around saying, "Look at my blog!" I have directed a couple folks to it directly, but not a whole lot. I have a separate more photo-laden site for family and friends to follow, that is a little more of a polished and shiny happy look at our lives. This blog is a bit more down-in-the-trenches.

- If so, how does that impact your writing?

I'm not sure. I know it effects the focus here, But mostly I direct people because of the focus, instead of focusing because of the people I direct.

- Do you keep hard copies of your blogs?

I keep a back-up copy on my computer. Which reminds me, i need to make a new one. I don't keep it entry-by-entry because I am an idiot.

- Do you ever not post comments you get?

No, but I have deleted a few that were ads or inappropriate. I do not allow anonymous posting, so that cuts down on the trolls.

- How do you balance writing versus reading?

Balance?

- Do you think of it as a chore or a diversion?

It is a way of life.

- Do you use RSS to keep track of blogs, or what?

No. I don't actually read that many blogs. If I want something new, I check out where my usual crowd is sending their awards, and often see if there is anything that looks interesting on the Autism Hub. Also, I like to check out folks who comment.

- Do you worry about what you write, or what readers will think?

Sometimes. I know that my students can "Google" me and this blog pops right up, so I try to check the language and I don't often wander off my topic. But I don't do anything crazy and interesting enough to threaten my jobs or anything. Otherwise, well, this is what I'm thinking right now, There you go.

Anybody else want to help out ghkole?

Saturday Night Retropective: The Way It Was

One small voice

And here I take my own small stand in the Poling "debate."

In the Poling case, it was determined that vaccines exacerbated a mitochondrial condition in one child. That catalyst resulted in problems for that child that looked like autism. Is the child autistic? I'm wondering if that is more of a political question than a medical one. So here my politics: yes, the child should be considered autistic. I'm not convinced that what we term "autism" is any one condition- it appears to be a group of behaviors, sensory problems, and communication issues that we group under the umbrella of "autism" just as all the religious traditions of India are umbrella-ed under "Hinduism."

Does this mean vaccines cause autism? Well, no. It means that a child with a mitochondrial condition may have been negatively impacted by vaccines... which has not actually been proven, by the way. What we have is circumstantial appearance, which is enough to get money for her treatment from the government. That is what this vaccine fund was set up for, and so yes, I think they are entitled to the money, and good luck to them. May they come through this with acceptance of their daughter- a beautiful girl- just as she is, and get her the support she needs.

This decision changes no facts about my own child, though I may do some research on mitochondrial disorders, to make sure he doesn't have one. If I found he had something like that, and there were other (legitimate) treatments, that would be important. I have already emailed Joey's doctors about it. I'm not the kind of mom that dismisses things out of hand- I check it out. After all, I suspect this mitochondrial thing would have "autism-like symptoms" even without the dreaded vaccines, right? Because it just "aggravated" the condition? So I'll let you all know what the doctors say. Gotta love email.

So there it is. Good luck to the Polings. Sorry this didn't prove anything. Sorry this whipped up the anti-vaccine crowd as if it had proven something. Ultimately, I suspect that this will only lead to more folks not vaccinating, increasingly the chances of my own kids getting these dangerous diseases. This should have been a quiet case, settled and moved on, nothing more to see here.

>>UPDATE: The email our developmental pediatrician sent back: "No." So there it is.<<

In the Beginning

It is a little-known trivia of my life that I one time re-wrote the Book of Genesis as a way to pass the time and waste lots of study hours in college. However, this version is much, much better.. It's much funnier if you regularly visit I Can Has Cheezburger, so if you don't, do that first.

NIghtlight

Hmmm. We installed a nightlight in Andy's room last night. Funny, we had no screaming, no visits from that child, and no problems getting him to go to sleep in the first place. This time last year, even a sliver of light in that room resulted in all-night problems. How children change as they grow up... we're glad he had a good night. Here's hoping for a trend.

If there was ever doubt

Well, I'm not voting for McCain. No, politicians, like the rest of us, can't know everything about everything. But they have advisors. And if you can't pick decent advisors, what kind of president are you going to be?

And for folks who don't think people believe sham science, like that presented in popular media outlets and tv shows... well, presidential candidates do...

Wordless Wednesday: Dinosaurs Again!

Proud to be me

If you haven't read the latest article from Wired, go have a peek. It has its ups and downs, but its always good to know where the ups and downs are.

One comment (of several) that struck me was attributed to Fred Volkmar: "[he] likens [the idea of autism as a difference instead of a disorder] to telling a physically disabled person: 'You don't need a wheelchair. Walk!' "

This struck me because it has nothing to do with the idea of difference at all. None. Zero. Zip.

Nothing in the neurodiversity movement or the "difference model" says autistic people may not need supports. What seems to be said is that, just as a person who may need a wheelchair to be mobile is still human, so are autistic people. An inability to communicate does not mean a person is stupid. I know lots of people with Ph.D.s who are stupid, who speak for a living. It's not about telling the person in the wheelchair to walk. It's about making sure they have a fabulous wheelchair and ramps and that the doors are wide enough to get the chair through. It is understanding that a person in a wheelchair is mobile, they go out to lunch, go to the library, may need to go to the hospital.

It's about not expecting autistic kids to take SOL tests without appropriate supports. We don't ask the blind child to take a test without providing the test either orally, or in braille- and if in braille, we make sure they have been taught braille. We help them to be independent. Why should I ask any less for my child? Either child?

In a related blog entry in the NY Times, one of the commenters thought it was a "stretch" to have an autistic pride movement because "Disabilities are obstacles to anyone who wishes both to be a part of society and to function as an autonomous, independent adult, and the cognitive and communicative dysfunction that typifies autism is severe."

First, I take issue with the idea that there is severe cognitive dysfunction. This goes with the idea at 70% of autistics are mentally retarded... which we are learning is just not the case. I suspect mental retardation is no more prevalent in autistic populations than in the general population. However, this may be a problem to determine, as anyone with a communicative dysfunction or disorder is often labeled "mentally retarded" in our society. Heck, my Andy's articulation problems would at one time have slapped him with a label of being cognitively deficient or impaired! A person with a stutter may need speech therapy, but does that mean they are intellectually challenged?

Moving on to the point; what's wrong with it being a "pride" movement?

So much of the literature on autism is negative. That is part of the point of the Wired article- all this negativity ignores what autistic people can do, in favor of what they can't do. Funding is not for understanding, it is only for fixing. I still have no idea how you can even try to fix something if you can't see if or how it is broken, so I would think there would be more money trying to figure out how brains work, and how the autistic brain is different. But there isn't. Very strange.

I have wandered off the point again: pride. I certainly hope when Joey grows older and starts to explore himself and his identity, he can find pride in being Joey. Pride movements are not about fitting into society. They are about identity politics. It is about being able to seize control of labels and being who you are, and creating your identity based on who you are. There is nothing inherently evil in being autistic, it is an inherent part of who Joey is. Why not be proud of being who he is?

As Rachel says at Signing Time:
It doesn't matter what you look like
The things you can and cannot do
Just be a boy or be a girl
Feel proud that you are you!

What's wrong with that?

Joey has just as much right to be proud to be Joey as you have the right to be proud of being you. May he seize the labels and take control of his own identity with the same strength of character and joy of living as anyone else. People who love Starbucks. People who are Americans. We have a Welsh Society here, those people couldn't help being born Welsh. We have a fabulous deaf community here, and those folks didn't choose to be deaf. But there is power in seizing who you are, just as you seize the things you do control- just like the Mommy Club, the Bowling League, or the Western Line Dancing Society. We create pride movements and identities every day. Don't deny that to someone just because they don't share your identity.

Food and the Preschooler

So you may remember my preschooler decided to stop eating foods. We didn't quite get to the neophobe stage, but it was starting to drive me frantic. We seem to have re-reached the normal "picky preschooler" level, so I'm feeling better.

This week, the menu is bacon, yogurt, poptarts, bacon, american cheese, milk, soda, bacon, calamari ("tidbits"... hey, if he's going to eat something, why not?), parmesan cheese, ketchup, bacon, bacon, chicken nuggets, french fries (started back yesterday), sugar cookies, fruit snacks (which we consider candy), bacon, lettuce, grapes, strawberries, bacon, taco meat, corn chips, potato chips, and bacon.

Schwan's sells precooked bacon that is expensive as hell, but very, very yummy, right from the fridge. That's right. Cold. Its good warmed, too, but the boys prefer it cold. Coronary in a bag. Woo-hoo!

This week, we're going to try carrots, some more veggies (peas would be nice to have back on the list, they're easy to grow), and I may try chicken again. We'll see.