Sunday, November 20, 2011

a letter to my son....

Calder, tonight at age 5 you started asking me about death. I stumbled through some explanations trying to be honest yet simple. Almost impossible, when your'e speaking about death.
"Mom, what happened to Nemo's Mom?"
"well, she died"
"why did she die?"
"the barracuda got her"
"am I gonna die?"
whew....what do you say in that totaly unprepared for moment? I gave him straitforward answers, rather grim I'd say. I realized after this bedtime discussion that I can tend to lean toward the pessimistic. So what would be the optimistic thing to say? That is the discussion of God, Jesus, and angels. I never really knew how to begin that conversation about Jesus and who he was: the bible stories. But if I had to describe death and afterlife to a 5 year old who loves doors it would sound something like this:

One day, hopefully when your'e really old and you have had a family of your own, after being given the gift of a happy and full life you will come to the end of it. Death is like a door you pass through, except you only go through this door one time and you leave your famly, friends and all your things behind you in the place you just left. Even your body, you leave behind in the other place. Only your soul can pass through this special door. It can feel very scary because you will be leaving so much behind you.

When you're young you are in the Spring of your life, still growing like the sapling. When you get older you have alot of fun in the Summer of your life and you experience so much and learn about what it means to be grown up. In the Autumn of your life you begin to teach things to the people in your life: things you have learned that you can now share. In the Autumn of your life you may choose to create a family of your own. Autumn is knowledge. The winter of your life is when you slow down. You notice the things really close to you. You do a lot of remembering. You are the wisest during the Winter of your life.

Some of your family and friends will die before you do and they will pass through this special one-way door. They will be on the other side waiting to greet you. So, although it may seem scary for just a short time, soon you will feel very good inside. You will feel so good inside that you will not want to go back through the door to your old life and your old body. You will want to stay in the new place you're in. Different people see different things in the new place. You might see Gage. Some people see bright lights, some see angels, some see meadows, some see tunnels, some see sunsets, or sunrises, some people may even see Jesus.

Remember your sunflower you grew in Jan's classroom? You saw it start from a seed you planted. Then you saw it start to grow, (when we thought it was actually a bean plant). In the summer, you saw it bloom into a flower, and in the Autumn you saw it bend over it's head and make seeds. In the winter you helped pick out those seeds, and next Spring you will plant those seeds and watch them grow all over again. Even though the new plant will look the same as your first plant, it will be an entirely new plant. And so the world goes, year after year, before and after we walk through our lives.

Thursday, November 17, 2011

Robbie the Robot

It is recommended that young kids get limited T.V. and computer time. When Calder was around 2 and 3 years old, I really had a lot of guilt and grief over letting him watch T.V., videos or be on the computer for any length of time. It was around his 3rd birthday, that he learned his alphabet, on his own, using the computer. His Grandma and Pampa were here to celebrate his birthday and had bought him a Sesame Street computer game. While Pampa and Calder were sitting at the computer together, I could hear Calder (who was not speaking yet), repeat the letters of the alphabet! No one prompted him to do that , he just did it. It didn't take long before Calder could recite the entire alphabet on his own, without the help of his computer game.

At 5, Calder now knows how to read at about a 3rd grade level, I'm guessing. Other than reading books with him at bedtime, I really have to give him all the credit for his reading skills. We never pushed him to learn his letters, or to read, in fact we DID teach him in other deficient areas, mostly social skills. But he basically tought himself to read and write.

There is a browser called Zac Browser, that was developed for kids with autism who play online computer games. It takes out any ads, membership requests, any unnessary banners and words and simply presents the websites as icons on a dashboard. There is one site in particular that is Brittish and the stories are told with an accent. They are mostly social/emotional stories: "Robbie has a hat he loves. When Robbie goes outside the wind blows his hat off. Robbie feels sad". Robbie is a simple animated guy with a monitor for a head. On the screen is a face of a real guy with blond curly hair. Personally, I think it is a little creepy, but Calder seems to really love it. He plays that particular game a lot.

I don't remember where we were, or when it was exactly, but once Calder saw a kid crying. Up until that point, Calder never really noticed the emotions of others. We had to teach him, by demonstrating facial expressions, all the simple emotions. Tell me how funny it is to take the time and mental energy to say, "look at my face, I feel MAD", when I would be furious at something. That takes great mental power.

Back to the crying kid. It may have been a friend, or a kid at the park, but when Calder saw the sad kid, he says in a Brittish accent "look that girl feels sad, we can give her a hug to help her feel bet-tuh". At this moment I had an epiphany! Since hearing a perfect Brittish accent coming from my adorable kid....since my kid recognized an emotion of another....and since my kid KNEW what was an accectable and even socially expected response...I knew it was Robbie who taught him that! At that moment, it occured to me that Calder was learning social behaviors, not from observing Eric and I or his peers, but from a computer game.

So began the letting go of all the guilt over computer time. In our family, the computer and the T.V. have been great learning tools. Sure they have to be moderated, or else he would spend hours on them. But they teach him things that he couldn't learn from us.

Friday, November 11, 2011

"I like astronomy"

John Elder Robison is an author and public speaker who has Asperger's syndrome, which is often associated with autism. John describes his Asperger's as "mild autism". There is one particular speech of his that Eric and I have listened to where he describes a personal view of missed nonverbal communication:

"If you were a kid and you came up to me and you said, "look at my new picture book", I might say "I like astronomy". And that was not the response you wanted and you would try again and you'd say, "look, it's all about horses", and I would repeat "I like astronomy", and you would wander off. And as funny as those things are today every one of those failed encounters for me, carried with it a sense of real crushing sadness because each time I wanted to say the right thing. I wanted you to like me for whatever I had done. I wanted you to share your picture book with me but I didn't know how to respond to you in a way that would work".

In our family, we often hear pretty random remarks. Adults will get asked their favorite color, then their birthday, then their age (we're working on that one). That is how Calder knows how to greet others. But when the question comes to him "what is your favorite color?", first he'll tell you his favorite color and then tell you the birthdays of all his grandparents, and just when you think he's done, he'll continue and tell you what states they all live in. And that is the answer he may give you if you asked him his favorite color. Opening up in this way is relatively new to him. Soon he will learn about 'too much information'. His interest in others is growing and he does not yet know about social expectations. One day, his greetings will be seamlessly typical, but for now, I am really loving this endearing effort to engage and commune. It puts a big smile on my face.

I had picked Calder up from school the other day and as we were walking home I decided to remind him about an appointment we had later that day. We were going to visit a speech therapist whom Calder had not worked with yet. I was a little apprehensive because I had not prepared him much for it. "Calder, remember we are going to go home and have a snack then we are going to go play with Deb at Zoe's office". Waiting for his reply, which could have easily been a protest he says: "But, but, but, but, but, but" I am worried what he will say next. Usually the "buts" mean that he is not going to comply. "But, but, but, but tomorrow is Veteran's day". Huh? I was really taken aback by this on many levels. First of all where did he learn about Verteran's day? Next, why didn't I remember it was Veteran's day? *embarassing*, and lastly it has NOTHING to do with the appointment I was telling him about. I was so overcome with suprise all I could do was laugh and lavish in the awkward silly beauty of the moment. I let it go, and I assumed that somewhere in all those "buts" that he actually was o.k. with the appointment and just wanted to share with me the new thing he had learned in school that day.

I know his greetings with peers must be awkward. I'm sure some kid has walked away from him after attempting to engage him. I'm sure Calder may not have known quite what was expected of him. A missed opportunity? Would he be sad? I can't know that yet. It's a sober thought. But, Eric and I and Calder's therapists will make sure we teach him these social tools. Instead of an instinctual and direct social mechanism, he'll have learned a work-around. The end product will look the same, but the journey getting there will look different.

Thursday, November 10, 2011

Luxury Travel

Luxury travel: trip to the Bahamas, or a sailboat cruise....flying first class....having cocktails at 30,000 feet...all, folks traveling with kids have a very different definition for "luxury" travel. For me, luxury is listening to an MP3 player while flying.

I watch all the folks traveling in airports don their ipods, ipads, laptops, kindles, nooks, heck just having a plain ole book or magazine is luxurious. Folks having hands-free phone conversations...with TOTALLY free hands! They have their hands free and no kids, now that's luxury.

For me luxury means something very different. This last trip luxury was in the form of a salted caramel 75% chocolate bar my hubby packed for me to be given at just the right moment. Luxury also can be a play area or a Mcdonalds in the terminal. Did you know that very few airports have areas for kids to play, besides the empty gates? Luxury also comes in the form of happy, listening,well-behaved kids. I noticed an interesting phenomenon recently. When you sit in your airplane seats with kids in tow, people leave you alone and don't make much eye contact. But when your kids are pretty much silent the whole flight, as soon as the plane lands, everyone is your best friend, telling you how awesome your kid/baby is (now that any chance of them being stuck next to a screaming baby or tantruming 5 year old is over).

I fly about 4 times a year. Since Calder was born 5 years ago, I have only been able to fly and listen to an MP3 player once. Listening to U2, or Radiohead while looking out my small oval window to the clouds below me, or at the sunset before me, or looking at cities with their lighted grids, is much more luxurious than hearing jet engines and making sure my 5 year old is not mindlessly kicking the seat in front of him.

Yeah, its hard work keeping everyone happy during traveling. It's a full time job. You bet I'd love a couple of those five dollar cocktails, but I opt for no drink usually, because quite frankly I've nowhere to put it.

But luxury aside, one of the best feelings in the world is to hold my sons hand as the plane takes off: to open his mind and experiences through travel. To pass on my love of travel to a wide eyed(mostly) 5 year old. To see the look on his face when he sees that for once, clouds are underneath, and that sometimes cities look really small. To realize when we are walking to school and look up at an airplane in the sky that there are hundreds of people, hundreds of destinations, hundreds of stories way up there in that little speck.

Tuesday, November 1, 2011

now I'm going to say the E-word

Every night last week Calder had been counting down the days until my birthday.  After his bedroom routine, as I would  leave his room, he would stop me.  "Hey mom, I'm growing bigger".  "Yes sweetie you are, every day getting bigger".  "And Mom, 6 more days until your birthday".  Every night he said that.  "6 days...5 days...4 days...3 days ...2 days...only one more day!" . On Friday morning, the first thing he said to me after I woke him up: "It's your birthday!"

Friday was a regular schoolday.  Regular, with some halloween activities throughout. School party and costume parade, special activities and snacks.  I was involved in these things and so I was in Calder's classroom a lot this day.  As soon as we got home from school,  I handed him off to Grandma and Pampa, who were visiting from Denver so I could busy myself with more things.

I had volunteered to purchase supplies for the Costume Ball which was that evening in his school gymnasium....which meant, bake 150 cookies as well as buy hundreds of tiny trinket prizes.  After setting up for the party I hurried home for a quick bite to eat and to nurse Elodie.  As I was walking up to the front door I noticed Calder had written in chalk, on the sidewalk:

Eric and I had agreed to celebrate my birthday on Saturday since Friday was just too jam packed with other obligations.  But we hadn't explained this alteration to Calder.
The whole gang walked to the school together to attend the Costume Ball. I danced with Calder for a little while, but I often needed to tend to the snacks and prizes, running here and there.  At one point Calder turned to Eric and said "but what about mom's birthday?"

Now that last bit really gets me.  Empathy is this huge "attainment", which sits on the pedestal of human development,  like a trophy.  Some  young kids and adults even, do not have a trophy of the E. kind. In some autism circles, the E. word is a pretty sensitive issue.  Some say empathy can be taught.  Some say spectrum folks lack empathy.  Maybe empathy is simply a skill that we are all endowed with at some degree.  But on this particular Friday, I saw that my child is quite capable of empathy.  It touched me and moved me and I think because of those innocent words from such a young kid, I may have had the best birthday without celebrating my birthday ever.