Andy's Show

Patiently waiting for the cue to go on stage.

Mom had to help get the star warmed up.

Then the sticks came out- and Andy was all about the Stick Song!

Then Andy got rockin' an rollin', and did fine. If I am always going to be that distracting to him, how will I ever be able to see him perform at school again?

Kindergarden preparedness

Andy had his concert tonight, singing with his class. It was a little rougher than anticipated. The noise was getting on the nerves of several of the other kids.. so you can imagine the state poor Andy was in. I stood with him for the first few songs, coaxing him from the bleachers to his spot on the stage.

Mommy won't be there to coax him in three months. Mommy won't be there to hug him and comfort him when the cafeteria gets overwhelming. Mommy won't be there to get him to his feet and into his place.

I wont be there.

None of the other kids needed to be coaxed, hugged, and have Mom beside them to get them going. And once he got going? He was great. Perhaps not perfect. He didn't seem to know the words the way the other kids did. He wanted to run around more than the other kids did. Getting him to stay in his spot between songs? Oh, right.

How do you explain this problem to people? How do I get the school personnel to understand? Do I really have to slap him with a diagnosis to get them to listen to what i am saying? am I not saying the right things, in the right way? Does it take a label to get people to really look at anecdote and think about evidence?

What do I do if Andy isn't ready for kindergarden?

Quick update

We saw the gastroenterologist, took some blood, took some pictures, and he'll call me next week. In the meantime, Joey is on Kiddie Zantac to try to get his stomach more comfy. He's really out of sorts. He hit his aide today. I hope once he is more comfy, these bursts of inappropriate behavior will cease. But I suppose we'll just wait and see.

Circles

Oh dear, is it Tuesday already? The semester has begun again, the boys are going in circles, we have an appointment with the gastroenterologist tomorrow, but the paperwork didn't get here and I have no word on having Joey's test pics to take with me (which may make it a wasted trip to Charlottesville), I'm running about like a chicken without a head, and... is it Tuesday already? I thought of four or five really good posts, didn't write any of them down, and where's my head again? Oh, there it is. Anyway...

Yet Again

Yes, folks, we have yet another victim of the Blue Bunny. Joey has asked the tooth fairy to bring him a truck. So I am off to the toy store, since all my reserve stuff is cars, not trucks.


Edit: I got him a watch and a matchbox truck, and I'm still under five bucks. Because I rock.

How I Got on the Radar

How did I miss this? I'm famous! But now, I'm also apparently on the radar. I said a lot more to the nice lady who interviewed me, but this looks like the heart of it.

Edit: Hey, look, the quote is all over the place, like here and here. I'm now better known for autism than for South Asian art history.

Is that a good thing?

Rainbow Days

Rainbows have become associated with autism, mostly because of the term "autism spectrum disorders." The wide variety of children's abilities and needs "over the spectrum" is represented by the range of colors, blending one through another. However, I like the rainbow for another reason. I was brought up with the story of the Flood, and God's Promise.

the details of the story are unimportant. It is the idea of God's Promise: hope, life, and love. that is what is important, especially when you are in the thick of things. The rainbow reminds you, even at the edge of a storm, that there is sunshine ahead, that the sun is there behind the clouds, that no storm lasts forever.

That is good to remember in the midst of a hurricane.

When you find yourself in the midst of stormy days, it is good to remember and think about the Rainbow Days. We've been in the midst of a storm here. Joey has been having a lot of frustration and discomfort. Andy has been bouncing around like a pinball. I've been having a lot of bad days, especially the confusion about the fall schedule and what classes I may or may not be teaching; and when I am having a bad day, I can Guarantee You that Joey will be having one, too. These boys are very tuned in to my moods, so when my mood fails, everything goes to pieces.

That is when we think about the Rainbow Days. Days when the boys get to go play in the park, and have fun running about being boys. Days when Joey uses a lot of words and draws lots of puppets to cut out and play with. Days when we have pool parties, days when everyone is up for a nature walk, days when we make cookies. When things are clicking along, and everyone is making progress, and life is sunny. Looking through the storm to that sunshine, you can see the rainbow.

Not every day will be stormy. That is God's Promise.

Screaming Mimis

It has been a rough few days here. Joey is not feeling tippy-top, and his schedule has been thrown to the four winds. Monday was a holiday, and yesterday was a field trip. His aide said he did great on the trip, but he was a screaming mass of child at speech therapy. Today should be a "normal" day, but we'll see.

My work is all screwed up. I usually teach online, but the new person isn't getting much training or mentoring about the system or the class structures. She keeps offering me "classes" that don't exist, or seeming to conflate live with online sections. Consequently, I have no idea what is going on, or what I am teaching, and don't have my fall BlackBoard shells, and it's almost June! Oh, and did I mention I have to redesign the classes because we are going to be using a new textbook?

Ok, this morning's job: find a gastroenterologist for Joey. Yay.

Twelve Years

Happy Anniversary.

Life With Joey and Andy: What I Have Learned So Far

One of the great joys of having children are all the things you learn from them. They can teach you a lot about dealing with life, people, and reality; they bring you a breath of youth and new eyes.

1. People do things for a reason. No matter what you think of another's actions and words, none of it comes ex nihilo. That kid tantruming in the store aisle? That's not random. Is the child tired, hungry, bored, overwhelmed? That adult tantruming in the store aisle? That's not random, either...

2. Don't judge people without knowing those reasons. Overreaction, or inappropriate reaction, makes everything worse. Even the Witching Hour has a reason- tired, overwhelmed kids excited about the day and seeing each other easily turns to bickering, whining, and hitting. Distract and Engage works far better than Yell Until your Throat Is Sore, and is far less traumatizing for everyone involved. Assuming someone is "just spoiled" or "being unreasonable" leads to trouble. This screaming is reasonable to the child; it is our job as a parent to sleuth out the reason and work on the cause, rather than trying to just treat the symptoms.

3. Let them be in control sometimes. This one is very hard on me, much harder than I was expecting. If you don't let kids have control, they don't learn how to do for themselves. Yes, it is faster and easier for me to make the peanut butter sandwich, zip the jacket, and water the flowers. However, it is important for Joey and Andy to learn to make their own lunch, zip their own clothes, and care for our garden and world. Assuming competence includes allowing them to practice and demonstrate that competence. Oh, and if you let a child have control of a hose, they will spray you. Just saying.

4. There is a whole person in that package. My folks used to say this about babies all the time: "There's a whole person in that tiny little package!" But it is true. Your children are not you. They are their own people. Its one of those lessons you have to learn on your own, no one can tell you (no matter how many times they tell you). These boys are two very different people. As I told the school folks on registration night, Andy isn't Joey, or even Joey's twin; he's a compliment. Joey is laid-back, Andy is a firecracker. Raised in the same house by the same parents. Wow.

Yeah, there's lots more. But it's been a rough week. So take one more lesson: Life is short. Squish your kids often.

Happy Birthday, Andy!!!

Five years ago today:

Wordless Wednesday: Brother Break

Ups, Downs, All Arounds

We had our yearly check=up today, Andy needed to be up to date for his school health forms for kindergarten, and Joey is looking round again. We left with a fist full of paper, four shots, and lots of recommendations, along with instructions for more appointments.

We are getting an upper GI done on Joey. We are looking into whether his stomach is emptying at an appropriate and consistent rate. We are also interested in sensory issues related to feeling full- does he feel fullness in a timely manner, or does he have some kind of delay?

Andy is headed to the psychiatrist. We are screening for hyperactivity as well as pinning a recognized label on the sensory issues he's having (sensory integration dysfunction isn't in the diagnostic manual yet). Our doctor also wants some more medical eyes on the situation, and documentation for the school. The results of my meeting with the principal haven't been exactly comforting. She also felt we needed to emphasize the need for small group situations and minimizing noise to avoid overstimulation.

So there we have it. They are both pretty healthy, and in the 95% for height. Wow.

Sunday Vignette

We've been having trouble with Joey and his seatbelt. He doesn't like it, and is always unbuckling it. He knows I get upset when he does this, which I think only enhances the charm.

We finally reached the top of our star charts today! Off to Chuck E. Cheese we went! JoeyAndyDad and I are both feeling crappy, but CEC involves sitting mostly in one place and having children appear at regular intervals to claim coins. We were really proud of those boys- they were good enough to get the CEC, they were perfect in the CEC... and then we rode out to tell Grandma all about it.

Two tired boys in the car. Yes indeedy, what were we thinking. We had several rousing rounds of the latest soundification (which is clearer than usual: "If we eat or drink on the bed, we might get the bed all dirty!") We rounded the corner for home, and JoeyAndyDad glanced into the rearview mirror.

"Joey! You're unbuckled!"
"Shhh!" came the anxious reply, "Don't tell!"
After a single heartbeat, JoeyAndyDad shoots back, "Don't tell? Who am I gonna tell? I'm just your father!"




(By the way, this post is with Joey's approval. He is reading it as I type, and giggling hysterically!)

In the garden

We've been playing outside and enjoying teh nice weather when we can. Uncle Lou made us a great game to play, and we've been having at it!

Yay, sensory overload of outside! the sky is high and blue, the roses are bright and smell great, the grass is cool and green!

Time for a freezy-pop.


I put out the bubble-machine to make things even more exciting!

Joey showing off his new sandals. He decided his feet were hot in shoes. I don't blame him a bit.

Be sure to come in my garden gate.

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.

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.