Saturday, August 16, 2008

Out of sorts

What does one do when one child likes to repeat sounds to calm down, and the other needs absolute silence?

My mom is thinking about buying them both headphones. Joey's will be connected to a CD player, so he can play his favorite songs and chatter and sing to his heart's content.

Andy will get noise-canceling phones so he doesn't have to hear any of it.

Yes, the boys are out of sorts. Friday afternoon, I tried to get the boys outside- something that is usually a very popular idea- and we had a drip of rain. They both ran into the house at the first drop. That is really odd. They retreated to the basement. Any time either of them appeared upstairs, I had him bounce on the trampoline for a minute. Trying to get them calm. It worked a little.

Allan kept them moving a good bit today, in the basement, outside. We went to see Dexter, and that was a good time had by all. BUt I think the wild schedule takes its toll. Tomorrow we'll go see the cousins, and so that will be another tiring, unscheduled day. Then he will go to school, but not usual school, because its only a half-day, with no breakfast or lunch there. Joey finds that really odd. Everything is chaos.

Three months of chaos. The result? Out of sorts. It's only natural. At least we have enough structure to pull him through. The summers before, those preschool summers we failed to get ESY for him, he would be a wild ball of stimming by now. I know some folks don't see anything wrong with stimming, but for Joey, it does become problematic if he only stims.

Right now, it is a matter of management. Joey needs to chatter. It is a sort of stim, but not a distracting, drift-away kind, so I don't really want to stifle it (it would kind of be like taking a kid's teddy bear away- perfectly harmless for a kid to hug a teddy bear to calm himself, right?) Andy needs quiet. having them both stressed out in the same car can be... interesting.

How much are those phones, again?

Thursday, August 14, 2008


You know, I was really looking forward to seeing this for my birthday:

But now, it looks like I will be stuck seeing this:

Yes, that is how my week is going. Thanks.

Life is Good.

Things that make life good here:

"My tummy hungy."
Boys on red bikes at the park.
Morning tickle-fests. In my bed. With both boys. Added bonus if Daddy is home.
"I'm a clue! I'm a clue!"
A cat going by at 100 miles an hour- because you know a giggling boy isn't far behind.
An hour at the Bug Box. Especially if the snake moves.
Red cherry tomatoes that mysteriously disappear, even though tomatoes are currently "yucky."
Wimoweh. We get most of the parts in between the three of us.
Very wet boys coming to give me a hug for taking them to the beach.
Shoes on feet, and I never touched the shoes or the feet.
Answers to questions. Any answer to any question.
"I love you, Mommy." Even when it comes after just doing something naughty.

Yep. Life is good.

Language Matters III: Things I Usually Avoid

There are some things I usually don't talk about here on my blog. I sometimes allude to them, but rarely discuss them, such as specific encounters with idiotic people and negative experiences with other people. I would far rather talk about positives. It sets an example. Teaching by positive model is far more effective around here than saying, "Don't do that!"

The issue of Tropic Thunder has caught my attention because I have had negative experiences. After all, what do I care, it isn't a movie I would have gone to see, even without the offensive language; and offensive language never stopped me from seeing South Park. In reading over the remarks made on my iReport and other surrounding reports on CNN and other news sites, I have caught the pulse of something disturbing. People seem to be ignorant of the use of "retard" towards disabled people.

We have all worked hard here to help and support Joey, and Joey has done a ton of work to be able to function in everyday situations that most people take for granted. We can go to a store. We can eat in a restaurant. Most people don't know he's autistic unless something is said, or something goes really wrong. However, there is no missing that he is unusual. Eccentric. He sometimes comes off looking spoiled, because he gets antsy and needs to move, or doesn't return immediately when I call. He sometimes dashes off and has to be called back. He sometimes needs to be contained in a shopping cart, even at six years old (and big enough to look 8 or 9). He sometimes babbles nonsense. For some reason, people think any of this is any of their business.

Which is fine, we're in public, we're not invisible. It is how the questions are sometimes asked.

"Why is he acting so retarded?"
"Why don't you tell him to sit down and stop acting like a 'tard?"
"That is so retarded! Why is he saying that?"

Excuse me? And it isn't even the question itself; it is the tone of voice when it is asked. They are not asking me if my son is intellectually challenged, and if they can help or get more information about his challenges. It is a judgment against him, against me, said with a broiling distaste and hate that results in just one response from me: we walk away. I don't even dignify such questions with a response.

Yes, this word is directed at people with disabilities. Yes, it has been directed towards us. Yes, it hurts.

I'm not out to ban movies like Tropic Thunder, or Something About Mary, or anything like that. People have a right to make movies. People have a right to ask me these questions. This is a country with free speech, and no-one will go to jail for coming up to me in a Wal-mart and asking, "Why is he acting so retarded?" That's wonderful. I like knowing who the bigots are. I also have the right to write this blog. I have the right to tell those people they are bigots, jerks, and even... well, fill in the colorful metaphor of your choice. That is free speech.

I find it disturbing that people don't realize this term is used to disparage disabled people. It is. We have the right to free speech, but with rights comes responsibility.

Just because you can say something, doesn't mean you should.

Just walk away.

Wednesday, August 13, 2008

Wordless Wednesday: Campout!

Tuesday, August 12, 2008


Hey, we made the CNN iReport! Did anybody see it?

Language Matters II

As Joey learned to talk, my husband decided to teach him to say "let go, please" when he was done with being hugged. We would catch him, hug him tight, and then just hold on until he said (usually through his giggles), "Let go, please!"

Now he uses this phrase whenever he is done playing with us, and is ready to move on. Andy does, too. And we always let go, even if we aren't really done hugging yet (is one ever done hugging a boy?)

The purpose of this exercise was multi-fold. It provided Joey with words to end a situation and control his environment. It encouraged him to talk and use words. It provided the lesson that words have meaning. Words are tools, and used correctly, have results.

In some ways, self-advocates are just now starting to garner words and expect results. This is partly a "Horton Hears A Who" effect- you need enough people using words at once for people to hear you. And it is partly because improvements in interventions, supports, and communication skills among persons with disabilities- particularly communication disorders- is improving at a rate that many new voices are being added to the chorus.

It is a sad comment on society that people are not protected unless they yell loud enough to be heard. But there it is. We add our voices to the cry: "We are all unique! We are all human! We all have rights!"

That is really what the din over Tropic Thunder is all about. A tip over the top of the volume to, "Being mean is not funny!"

Monday, August 11, 2008

Language Matters

Battles over what is a semantics problem, and what is a real language problem, rattle about the blogosphere all the time. What is a meltdown? Autistic or person with autism? What do our words really say?

One thing I am telling Joey a lot is "words have meaning." It is important to use words carefully, and think before you speak. Words have meaning. Why is that so hard to remember?

Farewells: A New Year Turns

As summer draws to its close and a new school year dawns, it is time for Andy to say goodbye to old friends. First, a goodbye to his first successful preschool teacher, who has also run his summer camp classes, Andy's Mrs. S (not to be confused with Joey's Mrs. S). We brought Andy to her class with some trepidation, as he had a lot of sensory issues and an unsuccessful preschool experience. Fortunately, Mrs. S runs a tight ship, and Andy learned what was expected of him double-quick. She was sensitive enough to his sensory needs that together, they were able to negotiate a successful preschool experience! Andy loves his school, he loves Mrs. S, and we will miss her. At least he will see her around and about next year!

However, we will not be seeing MIss Cindy any more. Sadly, she is moving to Texas. We said goodbye to Miss Cindy on our final visit on Friday. I don't think Andy really understands, but we're going to handle it just like another new teacher, because he will get a new therapist. We don't know who just yet. The difference Miss CIndy has made in our lives is earth-shattering. Without other serious issues to address, sensory integration OT really does work wonders with sensory integration disorder. We have gone from a child we thought would be going into special ed, to an excellent shot of him entering a "regular" kindergarten class (though I'm personally shooting for the inclusion class- I know those teachers ROCK!) Goodbye, Miss Cindy. Thank you. We miss you already.

Sunday, August 10, 2008

Mysteries of Life

First, two boxes appeared on my front step, one for Joey and one from Andy, from Alivan's. We have no idea who they are from. Apparently, the person has specifically requested Alivan's to keep their identity secret. So if they are from you, thank you. The boys- and their mom- was surprised and it really made our day!

Then there is the Mystery of the Tomato. We finally have a tomato from our garden- a real one, from a plant we actually planted. I put it on the counter to ripen, and take with us to Grandma's today. We were having a "campout", which was more of a cookout with a tent on the porch. Anyway, I picked it up to pack it, and noticed these odd marks on it...

Hmmm. I wonder where those came from.

Meanwhile, Andy's new favorite phrase is, "I'm hungry!" He's still picky about what goes in his mouth, but at least food is now being eaten. In fact, I think if I let him, he would do nothing but eat. I am trying to take advantage of the new interest in eating to introduce new foods, but unfortunately, I think he would also spend this entire time eating Poptarts.