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.

Project Spectrum

A friend sent this to me via Facebook, and I thought I would pass it along, because it looks like it might be a good idea to tuck away- Google is advertising 3-D software, SketchUp, and offering it for use by autistic kids. The site says you download the program for free. You can also read about the program on the SketchUp blog.

Am I oozing stress yet?

Ever worry about stuff and realize you really shouldn't be worrying about it, because after all, what are you gonna do? Or its taken care of? Or whatever?

I'm still freaking about the class observation. To be honest, with some other events going on at the community college, like having no idea what I am teaching this fall, I'm really suspicious. But what am I going to do? I can't beg for classes, and I can't change my students much. To be honest, I'm a decent teacher, and even my worst FAIL student learns something in my room, if they bother to show up. I know folks with full-time gigs who can't say as much. If they value decent teaching, they'd give me more work, or at least be considerate enough to tell me what work I have. If they are working to sack me, or rip my teaching, or whatever, there isn't much I can do. I'm just an adjunct, anyway. I'll just keep plugging away, making the material fun and relevant, or at least make them remember something cool. Life a professor bouncing all over the room.

IEP is coming up. We'll be doing ESY and next year's plan. I had a frank discussion with Joey's teacher that I would love to share, partly because it was a little vindicating, mostly because it would prove that I have the coolest, most awesome, most on-the-ball case manager in the history o the universe, but I don't think it would be in Joey's best interest to discuss some things on a public blog. Still, I'm worried. The things we had to be so blunt about, and which I cannot make public, are very, very worrying. We have a plan to deal with it. Mrs. H has things totally, totally in hand, and really makes sure Joey has a good plan and a solid IEP. Between now and the meeting, I'll be observing and thinking and researching and asking questions and quizzing therapists. What else can I do?

I have 35 papers left to grade. By undergrads. Finals are coming up. Crunch time.

Oh, did I mention I'm fat? Very, very fat.



And then Joey wanders in, looking around.
"What do you need, Bud?" I ask as he looks all around, then settles his eyes on me.
"I need you."
Then he hopped into my lap. That's my boy.

Are You Aware? XXII

I am the mother of an autistic child. My baby is autistic. He is now seven years old. We are working hard to help him, to support him, to give him the tools he needs to survive, thrive, and be a part of society, to enjoy his talents and his strengths and overcome his challenges. This is, as far as I know, what parents do.

And as a parent, there are things that keep me up at night, wondering. Is it enough? Will he be OK?

I have been weighing the idea of going down to the police station and seeing if there is anyone I can talk to about Joey. See, Joey is a runner. Not a predictable, tries-to-go-all-the-time-impulsive runner (which would be terribly hard). He's a get-mad-want-to-go-somewhere-else runner, or sometimes a thinking-of-something-across-the-street runner. He's the kind that would follow a dog into the woods and not know he was lost, until he was seriously lost. It is completely unpredictable. Some days he runs. Most days he doesn't. We keep the door locked, but yesterday, Andy got the keys down with a broom handle, how long until Joey figures that one out? It isn't a question of if I need to talk to the police and make them aware. It's a matter of when. And I want that when to be before I or JoeyAndyDad is arrested for child neglect because someone reported Joey being in the street.

We hear of other families facing ignorance, being arrested, their loved ones abused or worse, and for what? Because you can't see a disability?

Don't read these if you need a good night's sleep. Because these are the kinds of things that keep me up at night, and many other parents I know.

The Chicago Incident
Kevin Lazare in Brooklyn
Not moving to Minnesota.
Alva, OK. Why do people tape this stuff? Do they really think this behavior is OK?

Are You Aware? XXI

With special needs kids, getting things for them to do- including homeschooling projects- is a concern. We need ideas, and free is a good idea.

So we think you should check out:

DLTK
Childcareland
Lil' Fingers
First School

Want online games for free? Our favorite is Starfall.

If you have $20 for a yearly subscription, we also like Enchanted Learning!

Roller-coastering

Wow, some days are just like glass: placid, or at least expected, with a regular rhythm and up-and-down. And some days you're tugged all over the place in a roller-coaster of curves and hills.

The end of the semester is upon us. The instructional dean's office has decided they need documentation that they have "helped" all the adjuncts, and even though I've been there ten years, they came and "observed" my class ("we have to treat you like a first-year adjunct because we don't have this paperwork..."). Oh joy. So stress is running high, because basically, telling a ten-year veteran that you are going to treat her "like a first-year" is really, really suspicious. And of course, it was the worst lecture I gave all semester.

I'm running around trying to get papers graded. Why do I even assign papers? Oh, to help them learn to write. Right. Sounds like a great idea until you are in the thick of it, and realizing they can't write a coherent sentence, much less a paper. And you can only "teach them to write" if they give you a draft.

I decided to check my enrollments for summer and fall, to find my summer online 102 is doing really badly (I have to have at least 16 students for it to be a go; I have 3) and I have no info for fall at all- odd, since they are currently registering for both summer and fall. So I pull up the class schedule- and discover the only live class I was offered isn't there. There are several classes that I have no idea whom our new department head has gotten to teach, since she hasn't asked me, and she made noises of not offering classes to one of the other adjuncts who doesn't turn up for things like meetings. That's neither here nor there; if she's cancelled my class, it would sure be nice if she at least emailed me to let me know, right?

I got back to mom's office to find I had screwed up the book we're publishing, and had to re-do the cover.

Andy has been in constantly motion for three days. He made circuits in my mom's house, bouncing on pillows yesterday. Today he got very sensitive to anything that didn't go his way. He was pretty good for Grandma, and through a nice lunch with Grandma. Then we had to chase Joey's bus down because we got out slightly late. That put everybody off. Having to run off to school to talk with Joey's teacher didn't improve things.

We had a nice chat at school about the upcoming ESY and second grade and what kinds of goals we think he might need and how he is doing now in inclusion. We have the most awesome case manager on the planet.

Then I came home to two melty boys. Grandma needed to be taken home, and the boys were offered the ride, but Andy was so tired and out-of-sorts he started waling on his brother, and had to be left at home with JoeyAndyDad.

Now everyone is in bed. I have no idea what my income will be in the fall. I have no idea what moods anyone will be in tomorrow. Ever just want to go hide under the bed for a few days?

Are You Aware? XX

When you have a child with special needs, sometimes you need special toys, equipments, and supplies. Where to get them? Where does one get weighted vests, assistive communication devices, or PECS cards? These catalogues have great stuff, and great ideas. Do include your own favorite sources in our comments!

tfh (Special needs toys)
Different Roads to Learning
Discovery Toys
Enabling Devices
Kaplan Early Learning

Edit: One Step Ahead has an "able-rated" section!

Are You Aware? XIX

Do you know the latest and greatest in autism news, science, and debate? Find out- and find lots of great info about the science and news concerning autism and autism research- at Left Brain Right Brain. Even if you don't agree with Kev and the crew who write for lbrb, its a great place to find out what's buzzing.

Wordless Wednesday: Our Week

Holding Together

Yes, we made it through Spring Break. Hooray, hooray, a whole week without schedule, and we survived. The boys returned triumphant to school. Joey actually did pretty well, the first few days of break (with the zoo, etc) were fine. We started having the breakdown Friday, and Monday morning, we were all ready to get back to routines.

On Monday, I got stellar reports about both boys from their teachers. Joey had a great day. Andy had a great day. Everybody was great. Wow, great, wonderful.

So who stole those children and put these two wild things in my house? The Witching Hour on Monday? Holy Hannah. And today? I think Andy bounced in constant motion from the minute he woke up until the minute he passed out in bed. At Grandma's, he pulled out the floor cushions and the couch cushions and made a circuit of bouncy spots to walk over- a little circuit he walked the whole time I was at work, apparently. Even strapping him into the carseat did nothing for keeping him still. His little bottom bounced and wiggled all the way to Grandma's and back. We went to the park and bounced there. We picked up Joey, and another great, wonderful day at school meant another bouncing child in my car. They bounced into speech therapy. Andy ran around outside while Joey worked. Then we bounced home (very loudly, I may add.) Then they bounced all the way to Andy's art show, bounced back out to Grandma's (so we could give her Andy's T-Rex sculpture as a gift, since she's been taking care of him while I've been teaching), and bounced at Grandma's before bouncing, wiggling, and shrieking all the way home. Can we bottle this stuff?

Lest we mistake this constant motion for normal four-year-old-ness, Andy's OT gave me a letter to send in to his school. She listed a number of strategies for meeting his sensory needs in the classroom. I now am supposed to call the school and set up another meeting about looking this over and seeing what we need to do now (since the ChildFind screening committee decided he doesn't qualify for special ed). Vestibular breaks. Transitioning strategies. Visual cues. In some ways, it just looks like good classroom management to me, but then i realize that most kids don't need these things to get through a day. They can have lunch in the cafeteria without having a breakdown (or a meltdown) for twenty minutes afterwards.

Monday was rainy. The school Andy goes to has an "open floor" plan- ie, the classroom walls only go halfway, so the cacophony of seven classes echoes throughout the day. It must drive Andy crazy. Regularly, he would get a break from the noise when the class went outside to play- but with the rain, there was no break. No wonder the poor little guy was grumpy. He holds it together long enough to get through school, and then he's had it. As we emerge from teh change of season for Joey, we have some of the same thing- he is now at least able to hold himself together to get through school, but its exhausting. He comes home and is done. So he and Andy go picnicking on each other. The Witching Hour begins.

Are You Aware? XVIII

Ah, IEP season. If you've never been through an IEP meeting, you have no clue what it is like. You can get an idea of it here and here, as well as here. Most of us would rather go to the dentist and have our wisdom teeth out without novacaine than go to an(other) IEP meeting, but you know without you in that room, your child doesn't have an advocate. And it is the attitude that would otherwise leave your child to the wolves that makes attending the meeting so painful.

Some of the challenges and responses and run-arounds to try to deny our kids their needed supports, services, and rights are so common, they become well-known jokes, t-shirt slogans, and bumper-stickers. In fact, we have a "Pop-up IEP" webpage with the common obstacles and suggested responses! How sad is that?

Folks, kids with disabilities were being so abused by our society, we had to enact laws to protect the rights they should have had simply as fellow human beings and citizens. The fact that schools and government personnel still seem to want to circumvent those laws and deny their fellow humans and citizens their rights is frustrating, aggravating, horrifying, depressing, and traumatizing. This is what special needs parents go through at least once a year; often more, because that IEP you set up in May probably needs to be revisited in September, and with us, December and March are also good times to take another good look. And every time you walk into that meeting, you are in the Danger Zone. We've been lucky these last couple of years, and our case manager has been supportive of Joey and his needs. The couple of years before that, we weren't so spoiled, but we weren't faced with the extreme horror stories we hear from other parents across the country, and when faced with what we still believe was an attempt at active sabotage, we held our dignity and got through. (The one time I didn't hold my dignity, it turned out all right- we ended up with our wonderful case manager and para).

IF you need some of those bumper stickers and t-shirts, allow me to recommend The Parent Side and my own Joeymom's Autism Awareness Bazaar. Just reading them can at least put a grin on your face after a hard IEP meeting. And after all- 'tis the season.

Are You Aware? XVII

Blogging Against Disablism Day will again be May 1. Come join us!


What is Disablism (or Ablism)? It is the assumption that non-disabled people are inherently better than and superior to disabled people. It is the discrimination that has parents of "regular" students screaming about having special ed kids in with their kids in class. It is the attitude that encourages kids to be mean and even cruel to Joey on the playground, with the parents dismissing it as "well, they're boys!" It is what keeps adult services difficult to get, makes IEPs so extreme for way too many parents, and forced lawmakers to create laws to protect the rights of disabled people (laws which non-disabled people then complain about!)

We're all human beings. It would sure be nice of everyone remembered that. Let's write some reminders.

Are You Aware? XVI

One of the most annoying issues that schools like to sweep under the carpet is the "twice exceptional" child: children who are both "gifted" and "disabled." Autistic kids aren't the only ones who suffer from the reluctance of school to place children in both the Gifted and Talented program and the Special Education program, but certainly ignoring gifted kids simply because they are also special needs is something that needs to stop. Frustration and boredom are terrible enemies to learning, progress, and development.

What can be especially dangerous is in the push to get gets "mainstreamed", intellectual gifts can be used to end much-needed special education services, or can mask special needs in the controlled settings of the classroom. Just because a child is able to complete a worksheet and hand it back to a teacher with all the answers right doesn't mean that child doesn't need accommodations to function!

One place to begin your look at gifted special needs kids is Uniquely Gifted. Also, check out this article.

Are You Aware? XV

As Joey gets older, he is starting to face the stereotypes and myths that increase discrimination against him. People often judge others by how they speak- and speech is one of Joey's most prominent challenges. Other kids aren't going to care that he reads three grades levels above his class or is the top math student. Heck, most adults don't care. They see a child speaking oddly, saying things that are unexpected or apparently without context, and the myths emerge like gorgons to block opportunities and relationships. And why? Because he talks "funny"?

ASAN, the Dan Merino Foundation, and Kent Creative have gotten together and created a wonderful public service spot that everyone ought to see. For a version with captions, visit this link (thanks to kev and codeman38).

Are You Aware? XIV

Looking for an organization where you can find all sorts of viewpoints about autism and autism awareness? Find yourself in need of service, support, and advice about local autism issues? Want to connect with families dealing with autism? A good place to check out is the Autism Society of America. In the local chapters here, you have the gambit of attitudes, theories, and methods under one roof, so you can get a really good idea of the spectrum of not just ASD, but of how families feel about ASD, cope with ASD, and form communities for their loved ones with ASD. There are even a few folks with ASD who participate, with a whole spectrum of views of their own lives and experiences. You'll get the gambit from "pure acceptance" to "curebie" here, just be aware this is a very catch-all organization. Your local chapter may be not as cosmopolitan in nature.

Are You Aware? XIII

If you want to know more about autism and autistic people, you need to talked to autistic people, and look into organizations run for and by autistic people. What kinds of supports and services are needed to accommodate autistic people to live in a society designed for non-autistic people? Check out the Autism Acceptance Project to get an idea! Because after all, autistic people are here, and they need the support to function here and now.

Wordless Wednesday: Zoo Day

Rainy Day Passtimes

So, what do you do with two excited boys on spring break when it rains? Dye eggs!

Are You Aware? XII

A common part of ASD is sensory integration issues. You can also have Sensory Processing Disorder (SPD) or Sensory Integration Dysfunction (SID) without being autistic. Most people have sensory issues, but they usually don't get in your way. They just make people like and dislike things. If the noise hurts so that you can't function, if the flicker of lights drives you mad, or wearing clothes is just too painful to bear, you might be in the realm of SPD. Check out the SPD Foundation!

SPD is not accepted as a problem by everyone. We struggle with explaining SPD to our school OT. SPD kids are often labeled misbehavers and trouble makers, so it is important that this get recognized and understood, and these kids get the accommodations they need to function. It's amazing with an incandescent light bulb and a seat cushion can do for an SPD child.

Hopping Down the Joey Trail

Another lovely Easter. We've had a couple of really good days here. I hope it lasts.

The boys did get to go out and find all those pesky eggs the Easter Bunny was so not-nice about scattering all around instead of leaving them in the basket. The boys cleaned up the yard nicely, finding all those chocolates and jelly beans in bright plastic containers. Andy was delighted that some of them were dinosaur-shaped.

Then the boys headed for the porch, where their Easter Baskets awaited with more chocolate (well, not so much for Andy, who doesn't really like chocolate), more jelly beans, peeps, and toys. Andy was very excited about the jelly beans and the peeps, and the stuffed duck (which he had picked out himself the other day). Joey liked his blue car and his blue peeps and his chocolate rabbit.

Andy had a great time exploring the baskets and showing us all his new treasures. I got them pads with tic-tac-toe, very exciting, and these hands that point on a stick, teachers use them in classrooms. The boys think they are fabulous.

Finding cellophane to wrap the baskets has become increasingly difficult. That's actually last year's cellophane, the baskets never got unwrapped. I just stuck the new stuff in the same way you reach in to get it out. Next time I see rolls of cellophane, I'm stocking up. Don't other people wrap Easter baskets in cellophane anymore? The magic effect is well worth the $2 for the roll, trust me. An Easter basket without cellophane is like a Christmas present without paper.

Remember that chocolate rabbit in Joey's basket? It didn't live long. Joey loves chocolate. When it comes to candy, he and Andy are like Jack Sprat and his wife. ANdy doesn't care for chocolate, Joey doesn't care for lollipops or jelly beans, together they eat the whole store.

I love the way Joey seems to contemplate sweets and food. Its a very careful, conscious process of relishing it.

This is the way Easter really ought to be. The pure enjoyment of a Peep.

Are You Aware? XI

Fairly early on after we started putting together our first IEP and trawling the internet for information and resources, I stumbled upon what I think is one of the best essays ever written. I use it a lot to explain to people, especially friends with kids, why my life is so much different from theirs- and yet isn't, really. Especially early on, before the wheat separated from the chaff of my life's accumulation of relationships, these words let people at least try to get a grip on what I was going through, and why I had come out on the other end not bitter, not sad, and not in need of sympathy or pity, but support- like any other parent. Just different.

The essay is called Welcome to Holland. I recommend to anyone who finds that life doesn't always go as planned- but that's OK.

I know there are some folks who really hate this essay, but I find that they usually misinterpret it. This is not an essay about being autistic or having Down Syndrome. It is an essay about finding yourself someplace other than you planned to be, and rolling with that. It is about learning to accept life and your children the way the are, instead of the way you thought they were supposed to be. And folks, there are lots of folks- including parents of autistic, Down Syndrome, or myriad other disabled (and abled) kids who really could use some reminders about acceptance, rolling with what life gives you, and enjoying the ride.

Overheard on Easter Morning

When Grandma called, she told Joey about the eggs the Easter bunny left all over the yard for them.
"He took them out of the basket?" Joey asked.
"Yes, he hid them all over the yard!"
"That wasn't very nice."

Are You Aware? X

If you are in search of services for both children and adults with disabilities, it can be a great idea to check out your local chapter of Easter Seals. They now have a specific section just for autism services.

Please be aware that Easter Seals works with the Autism Society of America.

Are You Aware? IX

One of the things we are working hard on here is moving Joey into inclusion settings. That means slowly moving him out o the more protecting settings of self-contained special education- where all the children have IEPs- and into the general population. One of the bigger hurdles is the parents of non-disabled peers. there is a general belief that their kids are better than my kid, because their kid isn't disabled- as if the benefits of inclusion go only one way. Joey's strengths and talents be damned.

Today I bring you a video about inclusion and the attitude of being inclusive. If you've ever wondered about the benefits of inclusion for your non-disabled peer- remember the attitude of acceptance that it implies. Your kid may need to be thinking about it when they hit those hard middle school and high school years.

Bring It On! Birthday Celebrations!

Happy Birthday to my little Buddha Buddy!!!

We took the boys out to dinner, just for fun. Joey of course got Mac and Cheese. I also took one of his presents with us, a huge box of crayons! He really liked getting something at the restaurant. Having it be a huge box of crayons was extra bonus. The boys had a really good time, and did a good job staying in their chairs and eating their food. I was very proud of them!

Then it was time to go home and open more presents! Mrs. H sent this awesome Wubsy toy for the bath, and Joey ran right up at bedtime to take his bath and try it out. When you put soap on it, and squeeze it, it makes suds. (It works.) He was also very pleased to get his own clock for his room (part of the stay-in-bed campaign, but he hasn't really figured that out yet), a bubble machine, a ball-dart game, and an electric Uno game.

What was super-cool was that he figured out:
1. he was getting presents
2. they were for him
3. he actually liked opening them, and did it with some speed.

He would open one, look at it for a minute, ask for batteries to be added when appropriate, and then moved on to the next gift. It was incredible. He really wanted to fixate on the clock, but his hands went out and picked up the next package and got going. This is an amazing advancement over Christmas, when he opened one package, saw it was the car he wanted, and for him, Christmas was done. The rest were just chores, requiring the entire day to plow through, more or less.

Then we had cake! Another amazing feat- Joey blew out all the candles, all by himself! Yes, it took three puffs. Who cares? He was excited, he was happy, he blew hem out without any help from Mommy or Daddy. Totally, totally awesome. My baby is getting all growed up!

Joey put on a whistling concert while I cut the cake (that's right- the child whistles... without his front teeth. No, I haven't a clue how he does it. He's just proud and pleased as punch to be doing it.) Then we all had the cake he asked for- one with sprinkles inside and outside, and chocolate frosting. Yum! (We took the blueberry muffin-cupcakes with blue frosting in to school, they were yummy, too.)

Happy birthday, little buddy! May there be many, many more!

HAPPY BIRTHDAY JOEY!!!!

I let the boys pick their birthday theme. For past couple of years, things have been pretty predictable. Andy wants dinosaurs. Joey likes Cars. So this year when I asked brightly, "Joey, what do you want for your birthday?" I was a little broadsided by the answer:

Pinky Dinky Doo.

In case you were wondering, Pinky Dinky Doo is not widely merchandized. You can't just run out to the party store and pick up some Pinky Dinky Doo plates and paper and call it a day.So we've been working on this for a few days, and finally came up with a plan. I printed out coloring sheets, colored them, and stuck them onto a plain white paper tablecloth. I've also put up some sheets as decor. I might do more if I have some energy tomorrow; I'd like to stick up some birthday Fluffy Buns and that sort of thing. Grandma is working on the cake, I can hardly wait to see it!

Happy Birthday, Joey. We love you.

Are you Aware? VIII

Navigating the world of special education can be a real challenge. Often we discover we not only need to be teachers, therapists, ad doctors, now we also need to be lawyers, just to protect the rights our children have under law. The shocking ignorance of the law in school administrators and other folks who are supposed to be providing services to our kids creates an atmosphere of stress for all concerned. (We won't even discuss the school personnel who seem to be deliberately attempting to circumvent the law). Folks who don't have to fight for every facet of their child's education and well-being have little idea of what special needs families go through just to get their children basic education!

We can't control administrators. All we can do is educate ourselves, and do our best to be positive, effective advocates for our children. KNow your rights, know the rights of your kids. For a great place to start, check out Wrightslaw.

Wordless Wednesday: The Blue Bunny Claims Another Victim

Are You Aware? VII

In the new campaign to "end the R-word" I've gotten a lot of comments to the effect of "Joey isn't retarded, what do you care?"

Just for a moment, let's put aside the fact that we are all human beings, a huge thing to put aside.

One of the organizations that does a great deal here for autism and services, especially adult services, is the ARC. For those who are unaware, and it take a bit of initial digging to discover, this organization's name stands for Association of Retarded Citizens. Originally set up to support people with mental retardation, it has became apparent that many of these citizens were actually autistic, yet still require advocates and supports. The ARC has stepped up to the plate to include many intellectual and cognitive disabilities; autism, with its outward signs of communication and social challenges, is included.

Please check out the ARC and what it does in your area.

Finding a Good Book

Since Joey has begun reading, we were hoping to see him take an actual interest in reading. After all, reading gives us a whole new avenue to get information to him, and he does really well with it. We have bought a plethora of books of all types, a huge range of topics, anything to try to catch his attention. I could open a library, and I don't see that as a bad thing. I figure once his interest gets caught, he might start devouring them like Cookie Monster in a bakery.

But that didn't really happen. We encouraged him to read books, let him pick out the books, but it always seemed a chore. He did have a Blues Clues book he liked to read, but only at bedtime, and it was far below his reading level. We had another bright spot when he brought him Mouse's First Fall from the library, and read it to me. Joy of joys! But when he got his own copy, it was returned to the shelf- and again, it was far below his level. I figured the real excitement for him was the success; he could read these books all alone.

Lately, he has shown interest in Do Unto Otters, a book about manners, and would read that to himself at bedtime. However, he preferred certain pages to the whole book, mostly the one with the word "Snotter." Oh dear.

Then I bought a Pinky Dinky Doo book (Back to School). It is closer to his reading level, though still a little below. He's been loving watching Pinky Dinky Doo, so I thought it might catch his eye.

He's been carrying it around as if it were Bus. He reads it on the couch. He reads it in the car. He reads it in bed.

Folks, I think we have found a winner. And may there be many more to follow.

Are You Aware? VI

Here's one off the beaten path: what about communication? One of the greatest hurdles for kids with ASD is effective and functional communication skills. Finding alternatives to speaking can be a great thing, especially to lower frustration and increase communication. Keep in mind that the goal is often not perfect speech or even language, but communication.

We found sign language to be a great support for Joey. He was better able to process both receptive and expressive language with the signs as visual and kinetic cues. Although he doesn't do a lot of signing himself, often using signs (especially in chaotic environments) really helps keep Joey focused and communicating!

Want a quick, painless way to pick up some functional signs? We recommend Signing Time!

Are You Aware? V

I was referred to this post by a great parent, Niksmom. When I talk about "Are You Aware?" I want to remind folks that there is a difference between knowing something and understanding something. Awareness needs to mean an increase in understanding, not just knowing.

And this article by kristen is exactly what we mean.

Are You Aware? IV

Some of my favorite links for awareness include little essays and stories about being a special needs parent. How did I feel about parenting and parents before I had a special needs child? How do I now relate to those Other Parents, the ones who are living a life that now seems so far away from mine. How can I explain to those Others what parenting is in my life? How do we reforge those connections of "Parent"?

One of the essays I liked early on was Mother at the Swings by Vicki Forman. It describes a scene I find myself in so often- being at the playpark, with one of those Other Parents who want to connect, and don't know how, but are trying their best. The paradox of isolation while standing with Others doing with they are doing is something I related to at once.

Are You Aware? III

When researching autism, it is a good idea to consider a wide variety of experiences. A good place to look for a variety of blogs is the Autism Hub.

Campaign update

Last month we started charting out a number of campaigns to encourage independence. So... how are they going?

Well, if you were expecting me to come back a month later and report spiffy rooms, made beds, yummy sandwiches, and new jeans put on by a child who spent the whole night in his own bed, then excuse me while I laugh myself silly. I believe these days are all coming, but such campaigns are kind of like IEP goals- see where you are a year from now.

However, if you were expecting, like me, just some progress towards the goals, then we're doing just fine. Mostly. Considering we've had a rough patch (ah, spring...), any progress is a victory. I don't expect any serious progress until we can get through the rough bits and really focus on the campaign goals.

Joey has successfully made a peanut butter and jelly sandwich, with some help. Our first step into a wider world. I have purchased wheat flour, yeast, and honey, but have not really gotten to open up the Elmo cookbook and get going. I need to either improve my prep skills so I can be cooking with two kids at once, or I need to create more one-on-one time for my guys.

The bed-making campaign has not been started. That will probably be easier to start after we get him to sleep in his own bed all night- which we also haven't started. They aren't little long. I am torn, though I know it is a good thing for forwarding independence- I will miss waking up with a little guy snuggled in.

Dressing has been tricky. I have him consistently dressing himself, including picking out his own clothes, taking off his pajamas, and putting on all his clothing independently, but we still haven't added fasteners. I have, however, managed to get some jeans as hand-me-downs from a friend in his size, so we're ready to try.

However, I think we'll be taking a brief break here, as Joey has his turn at Grandma's getting spoiled tomorrow. He's earned it.

Are You Aware? II

Part of being aware is knowing people who are autistic, and knowing families with autistic loved ones. A great way to understand autism and and remove the fear is to read blogs related the experience of the autism community.

So today I'd like to bring out one of the best-written ad affirming blogs on living with autism: Whitterer on Autism. Go check it out!

Are You Aware?

I am celebrating Autism Awareness Month by posting links I think people new to the autism community should know about- places and faces and organizations that everybody would be better off knowing.

My plan is to do this every day. Please place your bets on whether I manage this. Ha ha ha.

Anyway, my first link?

Autistic Self-Advocacy Network. You'll know a lot more about autism when you know a lot more autistic people. Joey teaches me a lot, but when I am working for autistic services and right generally, its not enough to know just my son. Also, on of our goals is to help Joey be able to advocate effectively for himself- no one knowshis needs better than him.

We Are All Unique

Here comes Autism Awareness Month. Let's work hard to bring in real awareness of the uniqueness of all individuals, including autistic people. Respect for everyone is key to a bright future for all of us.

Blowback

We are having a whopper of an afternoon. Joey has so far broken one of Andy's toys, written all over one of Andy's artworks, and "ruined" something else we haven't yet clearly identified, but JOey came out and informed Andy of the deed. In the world of sibling rivalry, it is the deliberate nature of this destruction that is concerning us most. Here come our deerstalkers and pipes- another mystery is upon us.

Is this simple sibling rivalry? Are we acting out in place of lashing out with words? Instead of calling brother names, we scribble on his things when he isn't complying with our wishes? And what does Joey want? Does he want Andy to play with him? Was there some other action we missed- for example, did Andy tease him, hit him, threaten him? Did Andy tell Joey to go away?

Is this something deeper? Is he lashing out against his brother because he is having troubles elsewhere? Is he using Andy as a surrogate to lash out at, instead of someone at school or the playpark?

Is this a acting out against something totally unrelated? Other frustrations, other issues, other discomforts?

If we solve this mystery or not, we still need to do something. This is not acceptable behavior. Joey needs tools for dealing with frustration, discomfort, and unhappiness that are not destructive. We need to help him manage stress. He needs a better way to communicate stress. Screaming at the top of his lungs when we express our disappointment is just not that helpful or constructive.

UPDATE: We finally got Joey calmed down enough to talk to us. Apparently, some of the kids at school are calling him names, and it makes him angry. He felt much better after telling JoeyAndyDad all about it.

On the Playground: Another Day

Not one to waste a decent afternoon, I took the boys to the park after Joey got off the bus today. We've been spending a good bit of time at the park whenever we can, because it is good for the boys and Andy begs to go. He likes it best when there are lots of other kids there. It likes it even better when Joey is also there, because he is guaranteed a playmate.

However, we have been increasingly running into issues at the park. Joey has a very set way of dealing with large spaces, with other people, and with play. He cannot see a couple of kids playing and just jump into the game; he has to be told very specifically what the other children are playing, and what his role can be. This has left him open to some very unfortunate situations when children are not so nice, and there are some children at the park, and even in his classes at school, who are, to be frank, mean. They don't just casually exclude Joey, or fail to include him; they actively go out of their way to make it clear that they are shutting him out and casting him off, so that he knows it. Honestly, it takes a good deal of going out of your way to make it painful enough to Joey that he actually says something about it and knows you are doing it on purpose. Little jerks.

Joey and Andy kind of help each other on the playground, as many siblings do. Andy often gives Joey a few extra cues to catch on to a game, some extra repetition to pull him into play. Also, nobody messes with his Joey. When he sees those mean kids taunting him, he has been known to walk right up to them and say, "You weave my Joey awone!"

However, this propping of his older brother sometimes gets on Andy's nerves. He wants to run and be in the game. Also, often Joey wants to play with Andy, but not always the game Andy wants to play. The natural result is that Andy wants to go play the game he wants to play, not the game Joey wants to play with Andy. The result is frustration, and often a few rounds of "I don't want to play with you!" and someone's feelings being hurt- usually Joey's.

Keep in mind that the vast majority of time, the playground chorus is, "Come on, Joey! Come play!" from Andy. Or after a few minutes, Joey's offers of, "Andy! I want to play with you!" is often met with unreserved enthusiasm. But a touch here and there, Andy gets tired of Joey, and wants to play with someone else and do his own thing; and Joey has a very difficult time playing with anyone else, because he and Andy know each other very well, and so Andy automatically and efficiently compensates for Joey's needs. Andy knows how to talk to Joey, how to play with Joey, how to draw Joey into a game and include him. Because of Joey's difficulties with language and social cues, other children have a harder time even when they are trying to be inclusive.


We were in the middle of a "I don't want to play with you!" mood. Joey gave up and started playing alone on the slides (I offered to push him on the swing, but I guess playing with Mom isn't always cool when you are feeling uncool). Andy headed over to the merry-go-round. Not too long ago, the idea of Andy getting on the merry-go-round was ludicrous. He still doesn't care to get on it, he prefers to push, or kick slowly and control the speed. But this time, he was with some new friends, a boy about his age, another older, and a third probably between the other two. They were playing pirates, and they all piled onto the merry-go-round to go "sailing." The bigger boy started pushing, faster, faster. I moved closer, because I knew the breakpoint was nearing. It was crossed. Andy hates feeling like he is going to fall off, and the merry-go-round was going too fast. He started to wail.

Suddenly, Joey darted in from my left. He must have heard Andy and slid down fast to get there so quick. He was calling to the bigger boy, "Stop! Stop! Andy doesn't like to go fast!" and he grabbed the merry-go-round and dug in his heels to slow it down. The other boys were voicing their displeasure, but Andy hopped off, Joey let go.

"Can I play with you, Andy?" Joey asked.

"Sure, come on, Joey!" was the happy reply, and they both ran off to the climbing platforms, leaving the new "friends" behind to spin at their own pace. Because, after all, they're brothers. That's what brothers do.

Defeat

One of the great myths of autism: people with autism understand things very literally, and therefore do not "get" jokes, especially jokes involving puns or other non-literal language.

Joey has had a very difficult time with knock-knock jokes. After all, knock-knock jokes require punning.

Knock-Knock.
Who's there?
Blue.
Blue who?
Why are you crying?

Joey's version:

Knock-knock.
Who's there?
Blue.
Blue who?
Blue is my favorite color.


Yes, the literal side of things shines through. Uncle Lou, famous in my family for his jokes, even did his best to get the point across when we visited at the holidays, to no avail. I think it really hit my family that Joey really is different when they couldn't get him to understand a joke. Fortunately, I bet Uncle Lou will keep trying, because it is clear that Joey understands that you are trying to make a joke, and that jokes are supposed to be funny. He just can't figure out how they work- and the faces he makes are precious.


I was in Andy's room, reading our bedtime stories, and generally trying to convince the little guy that he was, indeed, sleepy and needed to be rested for school in the morning. I had just gotten him tucked in, and snuggled in (Andy likes to be snuggled to sleep. Oh, gosh, darn. ;) ), when here comes Joey.

Joey hops into the bed, sticks his feet on my tummy, and giggles, "I defeated* you!" and leaves.



Myth busted.





*De-feeted.

Wordless Wednesday: Field Day, First Grade