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!


Club 166 said...

Great post!

What kind of candy do they eat in Inida?

Joeymom said...

Jelabis are pretty popular- this is a sugar syrup that gels when deep fried. Barfi is also yummy- traditionally cashew butter in thin diamonds with silver or gold gilding. (Yes, you eat the metal.)

There's a fabulous sweetshop in Allahabad, Nathu's. I took a good friend with me thelast time I was in India, and he liked nothing better than to hang out there and try everything. :)

Club 166 said...

Most of those sound great. But "Barfi"????

I'm afraid I'd have to make up another name for that one.


Mary P Jones (MPJ) said...

Beautiful, as usual. I always say that being a parent is like being Cassandra -- you can tell non-parents what is coming, but they won't understand or recognize the truth until they get there.

Joeymom said...

I beleive the etymology of "barfi" has to do with using nuts. I like cashew bes, and its the most popular around Allahabad and Varanasi; but you can use almost any nut. There are some good recipes for it online. You can use "burfi"if you'd rather. ;)

VAB said...

We used to get barfi at one restaurant we went to. It's excellent, but I agree that the name is less than optimal.

Niksmom said...

Oh the beauty of understanding. I hope your "sweet" encounter is the opening of a large door or window for you and the boys.

BigDadGib said...

I think I had Barfi once.

A little Pepto-Bismol took care of it. lol

You have a great blog :)

kiribako said...

As a complete footnote to the Indian sweets thread:

You seem to be forgetting the entire Gulab Jamun family. But they're not as portable as barfi. You could argue that jalebis are not portable either.

And Nathu's had some of the sterility of a Baskin-Robbins. A few doors down from the hotel we stayed at in Calcutta there was a little storefront operation. Much earthier. I caught them making fresh Jalebis at least once.

Joeymom said...

Sahib, I stand corrected. The little Calcutta stand was indeed a treasure, and far more "local" than the more tourist-aimed Nathu's in Allahabad.

I didn't count gulab jamun as candy, its more of a dessert. But sweet! I bet Andy would love it. We'll have to find out...