The Stars Go Up, The Stars Go Down

We have started a new motifvational reinforcer system here. The old system was based on 1-2-3 Magic, where they had three shots, then the reward was removed. We were working for stickers, and at teh end of the month if we had enough stickers, we got to go to Chuck E. Cheese. We haven't been in two months. Not working any more.

For the new system, they have to earn ten gold stars over the course of the day to get their sticker. Whenever they have earned ten stars, they get a sticker. However, in this system, they can also lose stars, so getting to the top of the star chart to get that sticker is tougher than it looks. Good behavior gets rewarded, poor behavior has a consequence. Or is it just a punishment? I suppose we'll soon see.

No one got a sticker today. The net result was one star a peice. Yikes. It's been a long week.

***EDIT: After a few days of this system, we're realizing that if the guys make it to the top once, they are going to CEC. This is a lot harder than expected.

A Bump in the Road

Ah, yes, you know it is going to be a long afternoon when you arrive to pick up your son, and your usually cheerful aide comes around the corner and gives you The Look. It isn't a frown, really, but it definitely is not a smile, and you know its bad when you see it. Joey bopped around the corner, asking for sandals. His feet are too hot in shoes. This shoe-less thing is something both my boys are experiencing right now-neither want socks or shoes. For Joey, this is very bad, because without socks, his shoes become a military-grade chemical weapon (something he shares with my brother and father). I was hoping that was what The Look was for. I was disappointed.

Joey is back to spitting. This is a huge, huge issue, because spitting is so completely and utterly unacceptable. He's been spitting on the floor and smearing it around, which is bad enough; but spitting in his aide's face is a quick ticket to Ms. T. So we have come back to The Look.

"Don't you have something else to tell your Mom, Joey?" Ms. Macy prompted him sternly.

"I need sandals," he evaded.

"No, Joey. What is the other thing you have to tell Mom?"

He plopped onto the bench. "I went to Ms. T today at 11:35." Time is one of Joey's passions. However, this pronouncement heralded a long, long, long afternoon. Whatever the spitting is about, it means Joey is feeling out-of-sorts. It probably doesn't help that his visit to Ms. T became a bit of a theme to the afternoon. Even Ms. Nikki had to talk about it in speech.

So when I asked him to leave the car seat where it was in the back seat, the world came to a well and proper end. By the time we got home, he was so out of sorts, I had to send him up to his room to calm down. Unfortunately, he didn't; he got more upset, and so I set about making sure he was at least comfortable. Changed clothes, removed shoes, adjusted room temperature and fan speed, found favorite books, picked up items that he had thrown about the room. He didn't want to talk to me, but he spent another ten minutes up there, between raging and talking to himself.

Thank goodness for Dad. A new face, and we can at least get calmer and talk things over. IN talking about what happened today, Joey and JoeyAndyDad also talked about Ms. Macy, and all she does for Joey; helping him through his day, and especially letting him go out into other classes and see all his many friends; and by spitting at her, he made her feel bad. That seemed to really strike a chord with Joey; both that he made Macy feel bad, and that she does so much to help him (especially that she lets him go to other classrooms. Joey really does love having lots of other kids to interact with). He has made her a card and now says he's going to apologize to her tomorrow. And I think this time, it will be more than a kid being told to apologize; this time, it will be Joey telling Ms. Macy how he feels about it. He's sorry, and doesn't want to make her feel bad.

Ah, the Theory of Mind be damned.

Joey: Mythbuster

Myth 5: All autistic people take everything very literally. Consequently, they have trouble with imagination.
I have been recently introduced to two very interesting new characters. The first is a small white bear named Gyp, who likes to drive trucks. Today, Gyp was trying to go to Mystery Island. We went to the park, and at our park there is a rock outcrop, and Joey decided that was Mystery island. He spent the afternoon with Gyp in a truck trying to race to Mystery Island (running back and forth between the playground and the outcropping).
The other we met just this week: Gravy Dillider. I have our first Gravy Dillider story for you, as soon as I get the illustration scanned in to share. No imagination? Um....

Myth 4: Autistic people don't talk. If they talk, they they have Asperger's Syndrome.
Asperger's Syndrome is an ASD. In other words, people with Asperger's Syndrome are autistic. However, it is more than just a distinction of language use. A person with a diagnosis of "classic autism" doesn't suddenly become "Asperger's Syndrome" if they start to talk. In fact, Joey had some language when he received his diagnosis. In fact, one of the hallmarks of Asperger's is normal language development- and one cannot turn the clock back and say Joey has had "normal language development" of any kind, even as his language skills emerge and we start playing catch-up. There is such a thing as a verbal autistic person.

Myth 3: Autistic people do not want contact with other people, they prefer to be alone, or they are anti-social.
I seriously doubt autistic people are any more likely to dislike being around people than anyone else. They may have more trouble expressing themselves in a manner that invites social connection by non-autistics, they may have issues with social skills and maintaining conversation, but that's not the same as not wanting to be around people. (Just like not being able to speak doesn't mean you have nothing to say).
Joey is extremely social, and loves other people. He likes have other kids around, he likes playing with other kids, and he likes knowing lots of people. Joey loves everyone.

Myth 2: Autistic people are savants- what they lack in communication and social skills, they make up for in wonderful gifts.
The idea that autistic people are all like Rainmain remains strong in the popular imagination. I get asked a lot what Joey's "special gift" is. Joey has strengths and weaknesses, like other children. His weaknesses happen to be more visible than other people's, and get in the way of his ability to function and communicate. His strengths help him overcome his weaknesses, and give him talents to enjoy and share- just like everyone else. The older Andy gets, the more I realize how true this is- both of my boys have strengths and weaknesses. Sometimes Joey's strengths are also more noticeable, because his weaknesses are so noticeable, and the contrast becomes striking, like a Caravaggio in a world full of Raphaels. As yet, Joey has not shown himself to be particularly a savant, but he is a very smart and very talented person, and I'm definitely keen to discover what other talents await to unfold.

Myth 1: Autistic people have no sense of humor. (Often this is connected to a lack of social awareness).
Yes Joey has difficulty with jokes. It isn't because he doesn't enjoy them; he has trouble with the subtleties of language required to tell one. However, Joey loves being silly and funny and jokes that aren't language-heavy. Well, perhaps even that is a myth. One of the teachers at school discovered I was Joey's mom and launched into a wonderful story: She encountered Joey in the hall. He's usually such a sunny, happy kid, but that day he was grumpy and making a terrible face (one of his Pinky Dinky Doo frowns, which are quite dramatic-looking). She asked, "Joey! Where's your smile?" He replied, in his grumpiest voice, "Not here!"
She met him later that day. He looked up, saw her, smiled like a Cheshire Cat... and pointed at the smile with both hands, to let her know his smile was back.

Myth busted.

Happy Mommy's Day!

Joey has invented a creature/character to tell "made-up stories" with : Gravey Dillider. So far, Gravy Dillider is a light purple bear who likes to swim in purple water in a pond, he likes to splash in the purple water. He is a main character in today's story (though we haven't heard the story yet!) so stay tuned... we may have The Adventures of Gravy Dillider!

I can't think of a better Mommy's Day gift from my son.

Happy Blogiversary to me

Three years ago, semesters were closing, IEPs were looming, we were coming to the close of one age and entering another: kindergarten. Speech was a new thing, something to celebrated with every syllable; answering questions was something to blog about. Andy had just moved into his Big Boy Bed. Joey's default mode of communicating any kind of frustration was to scream loudly in my face, the closer the better.

We were already three school years into our "new" life of being diagnosed; of interventions, therapies, IEPs, and and accommodations. We had plowed through the fear, and emerged on the other side with the realization that Joey was still Joey. He hadn't changed. We had. Why had we been afraid? Because so much was unknown, and people who were supposed to be helping us were actively blocking us, fighting us, making it difficult to get Joey help, for us to get help. We wanted to help others get through the fear, fortify themselves with information, and share our experience. Don't other people get tired of reinventing the wheel all the time?

What we discovered after a while was a network of other folks, and we have soaked up your experiences and knowledge to help us help Joey and Andy. Today, Joey can ask questions and initiate conversation. He reads and writes and lets us know what he needs. Andy is about to start kindergarten. Both boys are toilet trained, screaming is not the primary form of communication, and we are saying goodbye to old friends like Oobi and Blue's Clues... my boys are growing up!

And to you guys: thank you.

I may not be a big, wide-read, famous blog, but I think we are achieving our purpose: a comfy corner to take a breath, shed the fear (and the exhaustion), and know we are all here having our favorite beverage of choice on the comfy couches. We're pleased and honored to have you here. And today- have some cake and ice cream, too.

Update soon

We are through our IEP for Joey for next year. Joyfully, it was a smooth meeting, and things look good. More later when everything is processed and wine is consumed.

What is "Tongue-Thrust" in Spanish?

In Andy's preschool, they have Spanish class every Wednesday. I think it is useful to learn new languages, especially since I have a difficult time with it and the world is full of people who do not speak English. Unfortunately, I failed to consider the issues my own child might have with learning a different language.

To be honest, Andy has very little trouble with language, so I didn't think much about it at all. It is the speech that is the trouble- articulation. Why wouldn't I think, if he has trouble articulating in English, that he wouldn't have trouble articulating in Spanish?

Lately, he has been very upset about going to school on Wednesdays, because he doesn't want to do Spanish or Music, his two Wednesday specials. So I have doing a lot of trying to pull out of him why he doesn't like Spanish or Music. And this morning, I got some answers. Apparently his little friend thinks singing is "yucky" and Andy is upset about that, because he likes music, but he doesn't like his friend saying that the songs are yucky. And then there was Spanish.

"Worth er yucky."
"The Spanish words? You don't like the Spanish words?"
"No."
"Why don't you like the Spanish words? What words have you learned?"
{Tangle of sounds that included, I think, "Spanish", "pretend", "words", "don't like", "yucky."}
"Spanish isn't pretend. It is a real language. We speak English. Not everyone speaks English. People in other places speak different languages. Some speak Spanish; people in Spain and Mexico speak Spanish. Some people speak French, or German, or Hindi... and Mommy learned a language called Sanskrit! People spoke it a long time ago."
{pause, then something that I think included something about sounding funny.}
"Are you having trouble saying the Spanish words?"
"Yeth."
"They don't sound right?"
"Yeth." {Something that included the name of his friend.}
"Does {Andy's Friend} say the words? Can he say the words?"
"Yeth."
"And you have trouble saying them?"
"YETH!"

Oh, dear. So we talked a little about how it isn't his fault that he has trouble saying the words. And I told his teacher that not being able to say the words is frustrating him, and I suspect someone was making fun of him not being able to say them properly- or he perceived they were making fun of him. Perhaps the Spanish teacher needs a little birdie to remind her he has an articulation issue?

End of another semester

Well, here it comes. If you want the snark, you need to go to another blog. Here, its just exasperation.

I'm an adjunct. Just as my career was about to kick in, I had life happen, so here I am. And I can tell you, it gets very frustrating this time of year. At the end of spring, you find out your fall schedule, and try to wrap up another year of academic fringes. Students start to cuss you out, especially online (hint: don't start snarking me on Rate My Professors until AFTER the grades are turned in. I can kinda tell who you are by what you complain about.)

Funny, but the vocally negative students are the ones you wanted to smack upside the head most of the semester. Who continues to read a book after the professor finishes roll call and steps forward to start the lecture? Who goes three weeks into a semester without either buying the textbook or locating it in the library, and thinks this is a legit excuse to have deadlines extended? What is the point of being a good teacher if people are going to complain that you actually expect them to do work, and do it by the due date. Do these kids really think their future employers are going to accept unproofread work, or late work? Talk about the fast track to no where- or more likely, the unemployment line.

And hey, our new department head seemed really happy with the student reports about my teaching, so much that she mentioned it at a faculty meeting... but it looks like I'll have fewer classes in the fall. How does that work?

Someday, I will get a real job. That day is coming. I can feel it. I was kinda hoping it would be at one of these local colleges, actually, because I grew up here. This is home, and I want to really be adding to it. But if this is the way it is going to be, maybe a change in career is in order. Adjuncts are a dime a dozen anyhow.

IEP Flashback

Yes, IEP season is once again upon us. Ours is Friday. So if there is no- or a lot of blogging this week, that's why.

IEP meetings are one of those facts of life with a special needs child. Here's some of the useful (I hope) advice I have given before:

The Crazy Season
Powerpoint Thinking
And for a little comic relief, For Stimey.

I'll share thoughts as I move towards this year's IEP, and continue to think about the meeting with the principal about Andy.

Happy Birthday to my MOMMY!!!!

Happy Birthday, Mommy!

Blogging Against Disabilism

How important is language? How important is it to be able to speak?

I had a student in my college courses with a processing issue. They needed supports for auditory processing. They also proved to need supports for language. This was a smart person who could communicate; but I soon realized that although the speech was clear, I was doing a lot of the connecting and fill-in-the-blanks and word-order-untangling for them when they spoke in class. Because my own son uses odd word order, I did it without even thinking. I know exactly what the student was saying, and it was really wonderful; and in my lecture style, I automatically translated for the other students, because I often re-word what students say to give them appropriate and more exact vocabulary. No one thought the student was stupid, or not an asset to the classroom in any way. However, when I got that first paper, I was in for a shock. Also like my son, this student wrote exactly as they spoke- with odd word order, slightly misused words, and jumbled thoughts. I started paying attention to how the student spoke; and beyond the crystal-clear annunciation, it was exactly what I was seeing on paper. We worked hard on that writing, but there is really only so much I can do as a professor and three writing assignments.

My sons do not speak clearly. Neither of them. Joey has a sort of stuffiness to his speech, like he is trying to speak with a mouthful of bubbles. It was a lot worse when he was just getting started- it probably has to do with controlling his mouth and facial muscle tone. Then, though I compared my student to Joey, Joey's word jumble is a lot worse. I expect all this to improve as we work hard on it, with speech therapies and occupational therapies, his muscle tone and tense use and word jumble will improve. But will it ever be enough? Will he be able to get through a college class if he wants to?

And what about Andy? All of his substitutions and rapid pace has been determined by the school to be "normal"... but none of his classmates sound like this. Once we figure out what he says, it is clear that language is not the issue; but will people assume he is not intelligent because they can't understand what he is saying?

The answer, as we know from adults we know with speech issues, is yes. Speech is very much taken as a cue of intelligence. It is one of the social cues our society considered important. We forget how culturally determined those social cues are; and it is important to remember when we are trying to teach our autistic kids how to see and read social cues!

How we consider others is culturally determined. How we view others is culturally determined. How we communicate with and about each other is culturally determined. How we treat others is culturally determined.

And we can- and should- change culture. A culture where people are valued for who they are and what they can do, instead of devalued for what they can't, is a culture that can build and move forward in solving problems and functioning to everyones benefit. A culture of respect for other people means less crime, less violence, less bigotry; and so more exploration of life, more enjoyment of each other, and more understanding of the world- even universe- around us.

Move beyond the social cues, to consider the possibilities of the people around you. Some cues are useful. Some, in reality, are not. Just because a person cannot speak doesn't mean they cannot think. Or feel. Or be.

Are You Aware? XXVII

Well, this is it- April has come to a close, and with it, Autism Awareness Month. I hope this series has provided useful info to get a range of information and approaches to autism (whether you agree with all those approaches or not, it is good to know about them). You may have noticed that I focused more on sites and information about and by autistic people, information about education strategies and organizations, and support materials. This does, of course, reveal my own views and biases.

I have one more for you before we move on to Disability Awareness Day.

The Organization for Autism Research is not about finding cures, but providing information about education and services, statistical information, and treatments. Again, you may or may not agree with everything on the site, but it does have useful information, and lots of things to think about.

Autism is part of our lives. For each and every one of us, autism is a fact. We are autistic, our child(ren) is autistic, our cousins, our friends, our neighbors, our extended families- somewhere in that milieu, there is an autistic person. It is important that we gain understanding of autism and accept autistic people, just as we would want to be understood and accepted: with respect, with love, and with joy.

Happy Autism Awareness Month.

Are You Aware? XXVI

Feeling overwhelmed? Want some help and training in education techniques and strategies? How about workshops for educating your community (or helping you educate your community)? Check out Parents of Autistic Children (POAC). This is really a great resource for information and training.

**Note: this organization is out of New Jersey, but a lot of the info is good everywhere.

Wordless Wednesday: Taste of Summer

Class Observation Update

I have the report back from the class observation. It is a very brief report that I found more interesting in reading what the observer thought was important to note, rather than as anything really useful. There was very little opinion expressed. I was really worried about that, because often admin think of lecture-format classes as "old fashioned" and prefer more Mickey-Mouse approaches (where kids get up and do a lot of singing and dancing and playing with computers, often giving them facts in fun formats, but not really encouraging skills for critical thought, communication, writing, or making connections between facts and events). And when push comes to shove, these are intro classes, and I do them lecture-style. Not droning, one-way lecturing, but I share a lot of information really fast.

Some things I thought interesting to be important? They noted I responded quickly to the request to be observed. Um... what, you think I would wait weeks to respond to my boss? Are people that stupid? Also, they noted I "fulfill the requirement to turn in syllabi." Yeah, one time I mistakenly emailed my syllabus to the wrong address (the secretary had turned over, oops) and I got CHEWED. OUT. I seriously had no buttocks for weeks. Do people really not send in syllabi? Where are their buttocks???

They also noted that I was in control of the classroom, because the students were respectful. That was really interesting to me. I consider that really more about the students (especially the ones who showed up) than about me. It also was a striking contrast to the issues I've had with my online kids. My mom always says I have "presence." Maybe I really ought to implement that "one live meeting" and whip those online folks into shape. See if I can reduce rude email.

Another interesting note? That I could work the slide projector. Um... I'm an art historian. I'd better be able to work the projector. This implies to me that there was somebody who was trying to use the projector and couldn't work it. Yikers.

Otherwise, mostly just facts. I arrive on time, I set up the room before class starts, I ask and answer questions, etc. Oh, I was surprised how long they must have been in the room before I noticed them. The notes they made about what I did before class included a lot of stuff I had no idea they had seen. Need to be more aware of my surroundings. Seriously.

Are You Aware? XXV: A World of Extremes

When I read articles like this, I often wonder about the extremes our world seems to be pulling in to. And how many of the people I know don’t exist on either side.

On one side, folks who seem to believe that autism is only a deficit, something to be eradicated like polio. Do all of them believe that vaccines or heavy metal poisoning is to blame? I suspect that is not the case. What bothers me about this end of the interpretation spectrum is that Joey would not be who he is without autism. He would be a different person completely. There is something in this idea that denies who autistic people are as individuals, insisting they are actually someone else. That really, really bothers me.

On the other end of the spectrum is extreme neurodiversity. This is the idea that autism is “just a difference” and shouldn’t be addressed at all. This complete acceptance and embracing of autism may seem like a great idea, especially compared to the complete denial of the opposite extreme. However, there are problems here, too. Extreme neurodiversity wants to put an end to therapies such as speech therapy and ABA. If you‘ve ever tried to work with a bad therapist or poorly done ABA, you know why. If you have a therapist who is domineering, rather than supportive, what are you really training the child to do? What does it mean to be “functional”? Do all stims need to be squashed? What about the gifts my child has, the way he sees the world?

Here at Life With Joey, we prefer middle ground, thought, and individualization. This is a middle ground that rarely gets talked about in the media. We believe therapies are tools, and our purpose is to support Joey and provide him with the skills he needs to thrive and appreciate his talents and strengths… which, you might note, is the exact same purpose we have for using tools available for Andy. There are domineering parents in the world, with and without autistic children. If you just dictated to your child what they will study in college, you might what to think about that again- is that really supportive, or are you projecting yourself onto your child? There is a difference between guiding and forcing, and it is important to know the difference when trying to raise children (who will grow up whether you raise them or not.)

So well-done ABA can be a useful tool. Floortime, TEACCH, RDI, pivotal response training, PECS, sensory integration, speech therapy, occupational therapy, physical therapy… tools, not ends. Be aware that the first therapist you come across might not be a good fit. That finding what is right for your child or loved one can take time and work, and lots of research. Not everything is helpful or necessary for every child. Joey didn’t need 40 hours a week of pure discrete trial training. Often being aware of different methods and being able to actively adjust and mesh together different methods and understandings is key to individualizing your approach to your loved one. Don’t just dismiss things out-of-hand; check it out. Pay attention. Document what works.

For us, Joey needed to be able to speak and use language. It isn’t a matter of just putting a keyboard in front of him; he types like he speaks (the processing issue is in putting the words in correct order and tense, not just getting them out of his mouth). He needed to stop tracking in the classroom so he could focus and learn (he can come home and track to unwind all he likes). Yet he is still our Joey, and we wouldn’t want him to be anyone else.

New Development: Andy

So we are preparing for Andy to enter kindergarden. Andy is not autistic, but he has some definite sensory issues that need to be addressed. He can't deal with noise. He needs movement. And we're not even addressing his speech at this point- the school SLP keeps saying he's fine, but then I hear him next to other kids his age. And even by ourselves, he can be difficult to understand.

We had him evaluated, and it was determined he did not require special education. Well, OK, not even speech? Hmmmm. Stay tuned on that front.

Our OT put together a nice little letter about his needs and methods that might be effective. I sent it to the school. Today, I got a nice email asking me to make an appointment... not with the special ed coordinator/vice principal, but with the principal. I called and set it up with the principal's secretary right away.

I'm a little nervous. First, I'm leary of meeting with someone whom I was unaware of being part of special ed services loop. This was higher than I thought was necessary to discuss my child's placement. This could be a good thing, perhaps she needs to sign off on a 504, or I need to ask for one from her, as part of the process. Or it could be a railroading tactic- getting in there and being told there is no such thing as sensory integration dysfunction and I should shut up and go away. That happened when we noted the school OT wasn't doing sensory integration for Joey, and we had to go to the Special Education Director. I have to think of a plan in case this is a railroading- like putting the new special ed director on speed dial on my cell phone (and remember, I don't usually carry around my cell phone.)

Second, should I be prepping for this just as I would for an eligibility meeting, if I am going to go in and ask for a formal 504? I don't have a lot of time. The appointment is Thursday. What paper do I need to bring with me? Should I have Andy's notebook in order? I suspect it would be a good idea to be prepared. Perhaps having some statement from Joey's teacher- who has at least glimpsed Andy and his issues- might be a good idea. Or not. We don't want to get her in trouble.

Finally, what if I am told something like, we'll do this, but we don't do 504s?

Are You Aware? XXIV

The world of autism parents is a labyrinth of warnings, therapies, insurance, school personnel, services, institutions, government agencies, private agencies… and quacks. I had no idea that snake oil was so alive and so very well until I starting looking at what to do for Joey. Some of the stuff practically screamed “SNAKE OIL HERE. ALSO HAVE BRIDGE FOR SALE.” More often, it was far more subtle. Scare tactics were always a big red flag for us. “Cure your kid for $5000” was another common red flag.

Want to know the latest in what’s been studies, and what is woo? Ned a place to start your own research into different methods, theories, and therapies? Try Quackwatch. They even have an autism-specific site.

Are You Aware? XXIII

Sometimes you just need the basics to get you started. What is autism? NIH offers a basic overview page.

Here are some things autism is not:

Autism is not schizophrenia. However, I feel people should also be aware of schizophrenia, there are a lot of ugly myths abounding about it.

Autism is not bad parenting.

Autism is not mercury poisoning. No, it isn't. The symptoms do not match up. (However, I do recommend having your pediatrician check for heavy metal toxicity if you are concerned. There are valid tests for it, and valid treatments for it.)

Are You Aware? Stimey Edition (Gerbils)

Hey, someone might be thinking of you at 12:17am. And gerbils.

Here's a site about Gerbils.
Thinkquest's intro to gerbildom.
A free gerbil coloring page.
The ABC Gerbil Clan.
Twin Squeaks- where I first learned that most pet gerbils are Mongolian.
The American Gerbil Society
Sexy Gerbils. Seriously.
Church of the Gerbil.
It's a Yo-yo trick. Really.
Run! The gerbils are coming!
Do you support gerbil access to contraception?
Gerbil genetics explained.
Why we need spoiled gerbils.
Bonding With Gerbils. (Is that kinda like Dancing With Wolves?)

Enjoy.