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.