Saturday, November 22, 2008

Joey Returns

The boy is back.

Joey is a sweetie, there is no getting around it. I missed his smile, and the tilt of his head, and the sparkle in his eye. Now he's back, and I just want to crawl into bed with him and squish him. But I won't, because if I wait a couple hours, he'll crawl into bed with us, and we can squish him. And we'll be warmer that way.

Joey has had a lot of anxiety lately. Although I can make some educated guesses as to some of the issues he's wrestling with, I do wish he could give me more clues. Last night, Andy was having his usual fuss about bedtime and bathtime and wanting to splash (with a very large pitcher), and I overheard this exchange:

"Why are you screaming?"
"Because you are annoying me! I want it!"
"You get water all over the floor when you have this. Play with some of the other toys instead. Look, there's a bowl."
"You have a bowl to put water in. What's wrong?"
"I'm sad!"

Joey can't do that.

Often when we are headed into IEP meetings, I try to explain that there are things Andy can do that Joey still cannot do. Then they ask me what, and I find myself at a loss; because Joey is Joey, and although I know there is the skill gap, trying to come up with exactly what those skills are is daunting- I expect Joey to be Joey, and Andy to be Andy, and what does that mean exactly? I know there are deficits, but when I have my boys, I just don't think of them as deficient; pinpointing the disability is something I have to think hard to do. I get asked, "What do you want for Joey?" and my current answers seem meaningless in the context of an IEP. What does "I want him to be happy" really mean?

We're not to Christmas, but with the troubles we've been having this year- minor compared to previous years, because our caseworker totally rocks- I'm already getting ready for our second grade IEP. When I go in there to explain what Joey can and cannot do, I am going to print out this blog entry.

When Andy is feeling anxiety, he can tell us. Joey can't. The result is that Andy's acting out gets words, gets understanding, and gets fixed. You hand him his pitcher, or you explain to him that he won't be getting the pitcher, he should play with something else. When Joey is anxious, we become Sherlock Holmes, trying to uncover the clues, the trails, the sources of anxiety. Then we have to analyze those clues to try to discover the whodunnit problem that resulted in anxiety, and think of how it ought to be fixed.

I want Joey to be able to have more input into those solutions.

Now it is morning (I started the post last night), and the boys are off to their swimming lesson; the contrast between what Joey can and cannot do seems all the more strange to me. In the three short months Joey has been taking swimming lessons, he has learned to swim independently right across the pool. Ms. Heidi says he has a good, strong stroke. Maybe he'll be on a swim team when he gets older. Wouldn't that be awesome? We just need to get him to breathe properly (put his face in the water while he swims) and he'll be on his way. Not bad for six years old.

It seems strange to me that people would want this child closeted away. They can't see the wonderful things he can do, the wonderful, beautiful person he is, simply because he has trouble speaking. As he gets older, what roads will be blocked for him, not because he can't do the tasks, but because he can't put what he can do into words from his mouth? I wonder about kids who are completely non-verbal, the challenge of living in a world where speaking is considered a vital marker of intelligence. In fact, I think now the ability to see people and accept people for who they are is a far more important form of intelligence. To be able to look past what people cannot do, and appreciate what they can do. And perhaps that is a post for another day.

I miss Joey when he isn't here. I am so glad he has fun with Grandma. I am also glad to have him back.

Friday, November 21, 2008

To Grandma's House

Joey is at Grandma's for a sleepover. We miss him. There is something sad about an empty bed when one of them goes to Grandma's. Joey's room is so quiet and dark, with him there to turn on the nightlight and play the CD. He's having fun, though.

We've been prepping Joey since yesterday for the visit. He should have had his turn a couple weeks ago, but he's been struggling so that we couldn't in good conscious either disturb his routine nor foist a depressed, acting-out child on Grandma. Joey needed some bedrock, as school wasn't going well for him. When we asked him if he wanted to go, he clearly said "No."

Then came Ms. Sc. The world has changed.

He has been in such a good mood, and suddenly doing so well, Grandma decided it would be a good idea to have him come for his turn at Grandma's. We decided the main attraction would be going grocery shopping for Thanksgiving. So we started talking about Thanksgiving dinner, and he had clearly been talking about it at school, because he knew he was supposed to have turkey. Yesterday we started being more specific: what did he want for Thanksgiving? Besides turkey? And then this morning was talked about it, and I started making a list of things we would need in the grocery store to have those things, complete with photos.

Before I tell you what he wants, I should note there is method to my madness. With the new change in bus policy (which has my bus driver as confused and unhappy as I am), I discovered we did best if he had something in his hands to distract him. The best thing we had was his new schedule, with the pictures and the written out routine. He clutched it the whole time we waited, and all the way to school, and we didn't have a single "No bus! No school! I missed the bus!" wail. So I thought a nice visual grocery list would help him if he started feeling anxious in the grocery store. I take Joey to the grocery, but not very often, because he does sometimes get very nervous, and likes to run around the cart in tight circles. With him in such a good mood, he should do fine, but just in case...

So what does he want for Thanksgiving dinner? Unprompted, he came up with turkey, pumpkin pie, and cheese. Then he agreed to sauerkraut, dressing, peas, corn, mashed potatoes, and biscuits. He said "no, thanks" to asparagus, sweet potatoes, and gherkins. He was unsure about cranberry sauce or cranberry bread (though he liked the cranberry bread last year).

Joey came home in after-school mood, so at first we were unsure he still wanted to go to Grandma's. Then he suddenly clicked and got very happy.

And Andy freaked out. He wanted to go to Grandma's too. He likes Grandma's house.

So while Grandma explained to Andy he would be going to Grandma's on Monday, I got Joey out to the truck, where he was all smiles and grins. He told me he was going to give Grandma ten hugs and ten kisses. He was ready to go.

What a week that child is having. A new math teacher, new friends, baking cookies, and now a trip to Grandma's. How much more exciting can life get?

Wednesday, November 19, 2008

Wordless Wednesday: Glimpse into Fall

Alex Barton Update 7

The latest is out on Alex Barton. Wendy Portillo is to be suspended for one year. The superintendent also recommended putting her back into contract status (revoking her tenure) and having her teaching license revoked for a year (which would prevent her from being employed as a teacher elsewhere).

Tuesday, November 18, 2008

Tired? I don't think so

Niksmom just put up a lovely post about her son, and his wonderful new appetite. Go Nik! But for some reason, she thinks we're going to get bored of Niks stories and shots of Nik biting into things.

I don't think so. In fact, I eagerly await pictures of him as a teenager, biting into things. It will still seem like exactly what it is- a miracle of victory.

There are moments of miracle that you just never forget. I will never forget Joey coming up the stairs from his ABA and calling me "Mommy!" for the first time (thank you, little.birdy!) I will never forget seeing him point to a pumpkin across the room- the first time he pointed at anything. I will never forget the day Ms. Janene came out from the back to tell me Joey had eaten a ham sandwich, after nearly a year of eating about a dozen foods.

I take a lot of pictures of Joey with pumpkins, Joey pointing, Joey eating, and lots of film of Joey speaking. I may complain about soundification, but it remains music to the soul after the silence.

It isn't just a special needs thing, either. I think it may be more poignant, the miracles that other people miss, we watch with broad smiles and cheers; but people take endless photos of their kids, talk about them at the watercooler, and become jokes to people who don't have children and just don't get it, because we don't tire of those miracles. Ever.

To watch Andy put on his own clothes. To hear him tell me small doings of his day (something Joey still has a great deal of trouble doing, and rarely does). To watch him draw a picture. All miracles to capture and share with you, with the world, because miracles are meant to be shared.

So, my lovely bloggie friends, keep it coming. I will never be tired of the miracles of your children and families. What you find amazing about your world is amazing.

How could I ever tire of it? Keep it coming!

Monday, November 17, 2008

Sounds for sore ears

Mrs. Huff emailed to say the math lesson with Ms. Sc went well. But I really knew we did a good thing when Joey got off teh bus- clearly in after-school mood- and said with a grin, "My new favorite teacher is... Ms. Sc!"

Now I just need to get through the Witching Hour...

Sunday, November 16, 2008

Repost: The Turkey is a-Comin'

Originally posted November 17, 2007.

We are all excitement here. Evan is coming.

My house is a disaster. Joey is sick. The guest bedroom isn't set up, and is in fact still full of boxes of I-have-no-idea-what-because-I'm-a-packrat-queen. I got the shower re-caulked and a new showerhead, but the showerhead isn't installed. Andy is hoarding again. But it's okay. Evan is coming.

Families are funny things. Families usually have two parts- the part that you were born with, and the part that appears over time. Folks who don't get the whole humanity thing forget about the second part of the family (often while complaining bitterly about the first part). They see them as outsiders, keep them at arm's length, forget to let them in and enjoy them. More and more and more people I meet are like that- there is an isolation of humanity in today's culture. We have become so focused on nuclear "family" that the rest of it drops into a grey abyss, our children not given the skills and understanding to expand their families and relish them. After all, all families are strange. They are full of people. People are here to be loved. Too many folks now expect people to meet certain ideas and expectations before they will even acknowledge the other person's existence, much less refer to the person as a "friend." Instead of taking people as they are, and start from there, and see what happens, they automatically exclude everyone until proven otherwise. Safer? Maybe. But you miss out on a lot of family.

Joey loves the world and the world loves Joey. People like to be accepted, no strings attached. Joey has a knack for that. "Hi, Friend!" he cheerfully calls to all and sundry. You're invited- you’re a friend until proven otherwise. Andy doesn't have this talent. He's far more of a question first, be friends if the answers are OK kind of guy.

Anyway, Thanksgiving is one of those family holiday things. People's families get together and celebrate being on the earth and get to have some time to just hang out and enjoy each other. We can appreciate Aunt Susie's love of carrot cake, the lopsided way Cousin Johnnie smiles, take joy in Grandpa's old war stories and Grandma's taste in clothes. We can pick up on the little clues that speak to who we are.

When we grow up, and go out to make our own little nuclear units, holidays are great times to remember the rest of our families. Those brothers, sisters, aunts, uncles, and cousins who may not share our bloodlines, but remain our families. Those connections to humanity that remind us that we're all in this together, we might as well enjoy each other for this brief shining moment.

Evan is coming. Christmas is upon us.

I love Christmas.

With holiday love to Beth, Jean, Maddy, and Joe, and the rest of my online family.

Sunday Retrospective

Once upon a time, when I was beautiful.

That's my friend Evan (Hi, Evan!) We've been spending the week, and will be spending the week ahead, talking about Uncle Evan coming to visit, so that the boys will be ready for Thanksgiving. It's very exciting.