Saturday, June 23, 2007

Swimming in the water

We ran up to my aunt and uncle's today. They have a pool, and Joey loves pools. A big, in-ground pool. Joey was excited the whole way up. We told him he was goign to see his cousins and go swimming, and we had a joyous chorus of "Joey's swimming in the water!" all the way there. It was only an hour and half.

This is one of those days when the idea of Joey being disabled simply isn't in the equation. He simply is who he is. Yes, we had a good bit of tracking today, and that meant he didn't engage with his cousins so much, but he did enjoy seeing them. He loved being in the pool. Andy certainly had a blast hanging out with the "big boys" (the boys are actually my cousin's kids, and they are some 4 years older than Joey). The thing was, even if Joey couldn't focus on a game or fully engage with the other guys, he was having fun. He was trackign because he got worn out from all the excitement, but that is just his way. We only had one screaming fit, and that was because Joey could have stayed in the pool for the rest of life and been happy, but he was exhausted and cold and really needed to get out and get dressed. Like any little kid, he anted to keep doign what was pleasurable, despite falling asleep on his feet.

It didn't matter that he couldn't talk like other 5-year-olds. It didn't matter that he couldn't really socialize like other kids. This was his family, and he could be who he was, just as he was, and that was fine. I wish all my family was like that. Ah, wishes again...

Sometimes you pick your battles. We'll just keep taking him around to the ones who love him, and not inflict the others upon him whenever we can avoid it. He has better things to do. Life is short.

Friday, June 22, 2007

Life is good.

Things that remind you that Life is Good:

Two faces smeared with cupcake frosting- preferably bright, neon colors.
That joyous victory squeal as you pull the vinyl from the shed: "Yes, Mommy! POOL PARTY!!!"
A boy curled up in the crook of your knees.
A good-morning kiss that wakes you up- that you didn't even see coming.
Giggles from down the hall after bedtime stories are all read.
Pretending to make soda in the bath tub.
Getting in the car to the chorus of "An-muls!" knowing you're going to oblige with a trip to the petting zoo.
Tickle fights.

That first trip to see Dinosaurs at the Smithsonian.
A boy with a lollipop in each fist.
Teaching boys to play skeeball.
A big, chocolatey kiss... and you don't know where he got the chocolate.
Waking up to two boys on your bed... playing quietly.
The cheer when those boys discover your eye is open.
Watching a boy chase bumblebees in the clover- all afternoon.

Wednesday, June 20, 2007

Dreams of Joey and Andy

It is amazing that people expect parents to be perfect. Infallible. Paragons of virtue, wisdom, and grace.

Parents are not people. They are... moms and dads.

Joey did not have a name or word for me until he was well into being three years old. Until then, I simply was. And then, I was mom. This is perfectly fine. Joey is only five years old. But it gets old to see adults who still don't get it. You don't stop being a person when you become a parent. In some ways, you become more of one, because you gain so many new social and cultural roles.

The day you realize and understand your parents are real people- with thoughts, dreams, feelings, and and life completely seperate from your own (which existed before you!)- you stop being a child. You become an adult, with new roles.

I have a hard time describing what it is like to be a parent to people who have no children. I was the first of my circle to have children, and most of my friends, upon discovering their own pregnancies, called and asked, "What is it like to be a mom?" These same friends who had been giving me parenting advice for years suddenly looked parenthood in the face and realized they were in alien territory. People who advised me on how to get Joey or Andy to eat, stop wandering about a room during a library reading, go to bed, brush their teeth, or go to the bathroom suddenly got the epiphany that they had no idea what they were talking about. Oops.

All of these people have dreams for their children. Ideas of how to raise their children. Beliefs of how children should behave, what is socially appropriate for them, what skills they need to survive, and how those skills should be taught, practiced, and communicated. That is what parents do.

I love the essay Welcome to Holland. It is a glimpse at what it feels like to have life not go the way you thought it should, the way you were taught it would, the way things are planned, dreamed, hoped for. The best part of the essay is at the end- when you appreciate the wonders of life as it is. And yet the essay acknowledges the pain. It is not swept away in some righteous, virtuous, Stoic ideal of saying "so it is." When life takes unexpected turns, you are effected- as is everyone around you. When Joey was born, life changed. When the words "He is either profoundly deaf, profoundly autistic, or both" fell from the lips of the SLP at Mary Wash, my life was changed. My life. Why do I not have the right to mourn for that life?

My life changed. Joey's life changed. My mother's life changed. Andy's life changed. Allan's life changed. In a single moment, we entered a new world. The plane landed.

Before the plane landed, life looked like everyone else's life- we didn't know we were already on course for somewhere other than Italy. No one on that plane did. We were all busy chatting in Italian. So the shock of the change is when the plane lands.

Personally, I have never really been sad about the "might have been" for Joey. He didn't really change; I did. He is still Joey, just Joey with a lot more help than I would have otherwise known to get for him. I do wish his challenges were not so great. I wish people who are supposed to be helping him would actually do so. I don't remember what dreams I had for Joey before we realized autism was a part of our lives. I hope they were what they are now- a drive to help him develop his talents, enjoy his life, and be happy. Right now, i'm not sure entirely what that will entail, because I have to listen close and watch close to see what he wants for himself, and to see what develops. Same for Andy. Actually, what they want right now is to have cookies for dinner and chocolate on immediate stand-by, 24 hours a day. It is my job to guide them to more appropriate joys and talents. In order to do that, I have to have some idea what those are.

I have been sad for the "where I was going." My life. Remember me? I'm still a human being. I would very much have liked to spend my life with my boys lounging at the Ganges View with lemon Mirindas all-round, pondering the mysteries of ancient India while enjoying the laughter of little boys. But folks, the liklihood of me landing the career path that would have allowed this is now exactly Nil. That is the reality. I have to change course, think up new dreams. But I still think about that one. I'll get these boys to India, but I doubt they'll be very young when I do so. Or that it will happen very often. Economics remains a major factor in reality.

And while I'm here in an insomniac ramble, I want to go back pick up the thread of the word "understand." Knowing something is very different from understanding it. Most kids know that their parents are people. They don't understand that parents are people.

Joey and Andy are learning ASL. We often make a game of quizzing each other on the signs, and they are both pretty good at it. They can tell me the meaning of almost every sign I throw at them (which is admittedly limited to the signs we have covered on our DVDs). Joey's favorite sign is fox. Andy's favorite sign is candy.

Andy knows the sign for candy. He thinks its funny to twist his finger on his cheek It tickles. If I say, "show me 'candy'!" he will make the sign. When I show him teh sign he pipes up, "candy!"

But today he understood the sign. Joey came out of therapy with a lollipop. Andy wanted one. So I asked him to sign what he wanted. He looked at me lie i was a crazy person. I asked him if he wanted candy, and he automatically said yes... and then I held up a lollipop, unwrapped it, held it out to him, and signed and said, "candy." You could see the little lights switch on. He popped it in his mouth. He squealed, pulled it out, signed and squealed "Candy!" and got excited. He got it. He understood. He knew the sign and what it meant before- but now, with the candy in his mouth, he understood. Candy!

Tuesday, June 19, 2007

Surprise problem

This was a morning I was so glad we have the new locks.

White Car (our van) is in the garage being fixed, so we are temporariy in our old red Jeep to get around. Usually Joey is begging to "go in the Red Car" because he loves red, so I didn't worry too much. We also have Green Car, which is the car Allan takes to work.

Yesterday we played a little bit of musical cars because of the drum lesson timing, which is also on a new day (see what is coming yet?) So Joey and I ended up coming home in Green Car.

This morning, I was awakened by a wail... "Green Car gone!!!!" Rememebr, Green Car is the car Allan uses to go to work- and he went to work this morning. So we talked about Daddy going to work, but that made it worse- now he started to wail, "Daddy's gone! Daddy? Where are you?"

Andy was still sleeping, so I got Joey into his clothes, and then went to go put on clothes myself. Andy woke up, so I had to stop and put him together, too.

We came downstairs to find Joey with his shoes on (hey! Look! He put his shoes on all by himself!) pulling on the back door (the lock we just changed) sniffing about "Green Car! I want my Green Car!"

Poor little guy. Start of summer has his schedule all topsy-turvey. So I'm hugging him lots this morning.

Monday, June 18, 2007


Joey is learning sequencing. He has a difficult time with sequencing as a general skill. The idea of something happening first, then the next thing happening, and then there being a result or conclusion is something he finds either uninteresting or challenging. Unless...

I had to go to the big IEP for Kindergarten a bit ago. Grandma watched the boys. Joey has been having a lot of trouble with me leaving the house without him, so this was a Big Deal for Grandma to have to watch them. There was nothing else for it. Off I went, and home I came.

Joey spent the couple of hours plotting. When I left, he screamed his head off for 45 minutes. Grandma explained to Joey that I had gone to school to talk with his teacher about kindergarten, and that I would be home soon. The screaming gave way to the plotting. There was a black truck parked across the street; he could see it through his favorite window.

"We get in the black car. We go to school and see Miss Kaila and Mommy."

There we go. Three-step sequencing.

Joey can escape from the house if the key is in reach, and has done it. This requires going to the door, turning the key, then walking out of the house. Three-step sequencing.

But he cannot tell you what he did yesterday, or what will happen tomorrow. Taking three related pictures and put them in order? Forget it. He can pick up random things in a story, but cannot retell it.

He can recite the entire Silly Pizza Song and gets upset if you get the foods out of order, but has trouble completing simple "obstacle courses" for his OT (though he is improving!)

How does one communicate the concept of first- second- third?

Sequencing may not appear to be a "critical life skill." After all, who cares if you know the order of a story, the teacher can read it to you? But sequencing is about learning conclusions and consequences. I get hungry. I eat food. I am not hungry anymore (or, I have energy to go play.) Doesn't seem like a big deal unless the sequencing is a problem, and then connecting eating to staying alive and having energy gets missed. Or how about, I want something across the road, I run out into the road, I get hit by a car?

At our next IEP meeting, I am again going to have goals flagged as "critical life skills." It makes it easier to get ESY if flagged goals are not mastered, and it lets the school folks know what skills I find important. The sequencing goal is definitely getting flagged.