Friday, July 18, 2008

Visit on Demand

This was my first morning with Joey; the first week of ESY 2008 has come to a close. We were thinking of going swimming, but my trainer kicked my patookas yesterday, and walking, rising, or sitting sets my thighs on fire. Four ibuprofens haven't touched it. Tylenol? A joke. I have a high pain tolerance. I'm a lady who got through her first c-section on Advil, not Percocet. Swimming was out.

However, I had some things to mail, so I thought a trip to the post office would be good. Joey's been talking about post offices lately, and his new re-interest in Blue's Clues includes Mailbox. So off we went, to chat about the post office.

Most of the short trip was a barage of questions from me ("What do you do at a post office? See what Mommy has? What are these? We're going to send these thing to other people- mail them. We pay to have them taken to the other people. See the postman print out the stamp?") with only grunts, deliberate silence, or sullen "I don't know" in response. This was not going well. So I decided to switch to letters instead. Mailbox gives letters to Steve. People write letters. They tell other people all the news and all about themselves. Would you like to write a letter? Who would you write a letter to? Dexter? Andy? Max and Charlie?

Joey perked up. "Want Max and Charlie." I finished up my business and persued this interest.
"You want to write to Max and Charlie?"
"Want to see Max and Charlie."
"You want to see them? You want to visit?"

Alrighty, then. Into the car, we're off to see Max and Charlie. I'm worried he might be thinking of his cousins, one of whom is also called Charlie, but when we get to Aunt Christina's, he goes over and says hi to Max and Charlie. He wanted to see them. Then he plays with Jack, their younger brother (Jack and Joey were in the same class at one point).

Why is this amazing? For one, Joey doesn't often communicate what he wants. He tends to go with the flow and take what comes. This is especially true in activities. For two, we haven't actually gone to play with Max and Charlie in months. We haven't even played with Jack in a long time. It was probably around Christmas when joey saw them last. Finally, having a playdate with Max and Charlie is a little different than having one with other children. Their mobility is highly limited. Their communication is highly limited. Its not like he could play his favorite game, duck-duck-goose, easily with these children. Even Jack is a different matter. Joey does make them laugh, especially if he is running about or acting very silly. Perhaps he enjoys making them happy. I don't know. Joey has always liked them- now I know he has missed them. We need to get over there more often.

And yes, he had them all in stitches. He played with Jack, too. I got to talk to Aunt Christina. A good time was had by all.

A thought on life

When I drop off Andy at school, there is a van with one of those "in loving memory" decals on the back window. The loving memory is of a child who lived just shy of six months.

I know a lot of kids that some people think would be better off not being here. In fact, there are people in this world who think Joey is one of those kids. They make it clear with their attitudes towards prenatal testing, their attitudes towards disabilities, and even the way they act when they discover Joey is autistic.

I just want those people to know a few things.

I love Joey and Andy. I wouldn't trade them and who they are for all the tea in China.

Just because autism is part of who Joey is, and I love Joey as he is, doesn't mean I don't want to help him, support him, and raise him. I want him to grow and be happy and enjoy life. He's doing a good job of that.

Let me make that really clear: Joey loves living. He enjoys life. He wants to be here, too.

I know several children who are more disabled than Joey with various conditions. I assure you that they all enjoy being here, too.

There are things far worse than having a disabled child. I cannot imagine the pain of the parent at Andy's school. And I hope I never know what that is like. I am absolutely sure it is far worse than anything I have ever experienced. Ever. And to that parent- I am thinking of you and your family.

Thursday, July 17, 2008

No sales in July.

And its even free shipping this week.

But I did get a nice check from Cafepress for the Christmas sales. Thank you!

Wednesday, July 16, 2008

Phrases of the week

Imagine these repeated over and over within a single "conversation":

"Mommy? A Dragonfly has strong jaws."
"Mommy! No Dogs! Say 'No dogs', Mommy!"
"Mommy, dogs can bited me."
"Duck... duck... goose!"
"I love you." (especially if he knows he just did something wrong or inappropriate.)
"Mommy, I have fun."
"My school at the farm!" (It isn't. Andy's school is a farm.)
"Where my school go?"
"Mommy? Mommy? MOMMY?... I'm being quiet!"
"No Mr. Shelby today. We stopped that."
"Mommy, we don't talk to wolves."
"Where's Grandma, Mommy?"
"Mommy? Mommy, it says WAAAAAh-Waaaaaah." (Andy: "No, Joey! Wa-wa!")

And for the sound-only phrases (see if you can figure out what words they come from):

And it beats the silence by a long shot.

Wordless Wednesday: In the Rainforest

Monday, July 14, 2008

Alex Barton Update 5

Well, now that some publicity has been given to Alex Barton, other parents want to chime in about their own frustrating experiences- and the Attorney General of Florida is saying he wants to hear all about it. If you are in Florida and have a story to tell, now's the time.

Oh, and unless you want your blood pressure to shoot through the roof, skip the comments to the linked article.

My Extra-Ordinary Boy

Sunday, July 13, 2008

Back to School

Joey and Andy go back to school tomorrow*.

So you know what I'm doing tonight.

Yes, yes, labeling clothes, putting together snacks, checking off supply lists, and packing backpacks. Sure. I also had to run out to my mom's, because her basement flooded and I'm helping her clean it out (we spent most of the day today out there- JoeyAndyDad heroically took two loads of trash to the dump so I wouldn't have to lift bags full of sodden clothes and cardboard.) And I cried all the way home.

Yes, its only half-days. And I'll get Friday mornings with just Joey, which is a rare treat. It will only be four weeks for Andy, six for Joey. And then I will have one week, most of which JoeyAndyDad has also taken off work and we hope to be at the beach for, before they go back to school for real. And we have had an amazing few weeks, with trips all over the place, which I can't afford to do for another seven weeks. And I am an utter failure at providing Joey with the structure he needs to get through his day with any sort of normalcy (and before you post, "Yes you can!", be aware that I know it is a failing on my part, and really would rather not feel worse about it). I'll still have afternoons- well, when we aren't running to therapy. Or the gym. Or running errands. Maybe some afternoons we'll do some of these craft projects I was planning. Or visit some folks on the weekends.

But its just not the same as having my buddies here with me.

I'm not saying all day, every day is sunshine and roses and easy living. But that's life, and I wouldn't miss my babies even in those moments when everything seems to be in melt-down. Every moment is part of who we are.

I know they both do better in school, they learn a lot, they have a lot of fun, they learn to be independent and confident and themselves, without Mommy's shadow. All children need some freedom to breathe and be themselves, and learn who they are, and process what I am teaching, just as time with me permits them to process what school is teaching.

But I feel I am missing out. And I miss them. And life is just very different when there aren't two little guys giggling in the back seat. Even when its just one, its not the same. They're my little buddies.

*I wrote this last night, but we lost our internet connection- so here it is this morning, as we await the bus!

Painting for Grandma

We decided to make some pretty pictures for Grandma. These are actually from a couple days back.

Andy working on his masterpiece, "Dinosaur Paths."

Andy was wearing this dog hat after Joey spent the day in his Little Bear hat.

Joey prefers making calendars and writing. He did make a lovely portrait of Chuck E. Cheese.

I have to say, the boys worked on their pictures for a good half hour. I need to have Art Time more often.