Monday, July 11, 2011

We're All a Little Crazy

Autism is an interesting animal. Early on, it's signs and symptoms are pretty clear. Usually, you have a distressed toddler that can't figure out how to communicate. At all. Not only can they not talk, they don't know how to point, gesture, drag their parents to the desired object. Communication is a mystery to them. So, instead, they just stand there and have a "meltdown". It's a scary, embarrassing and very difficult time for the parents and the child. There is a great divide that exists between you and your child. Your little toddler spends all their time retreating within and the parents spend every ounce of energy pulling them out.

I think of my son's years between 1 and 5 - and it's all a blurry fog of tears & frustration combined with triumphs & mini-successes that we celebrated like he graduated Harvard. When I meet a parent in the throws of toddlerhood autism, my heart aches for them. Because it is a very hard time. But I always say to them - with absolute confidence - it DOES get better. Time, maturity, age, developmental progress, education... is the friend of autism.

It is around age 5 or 6 that autism becomes much more covert. As the child with autism gets older, he learns to "manage" his autism. He learns that some of his crazy behaviors, desires, and obsessions are more appropriately enjoyed in the privacy of home. He also learns that other kids will make fun of him if he brings his brand of crazy to the table. (No disrespect.... because God knows I am in love with the autistic mind and it's amazing capabilities.... but some of the behaviors and compulsions are indeed crazy. If you don't believe me, come and stay at our house for the weekend).

And so begin the years when autism mainly blooms at home. And you start hearing people say "I would never even know he had autism". And that's ok with me. I don't want my son to be defined by 6 letters. He is many things, and autistic is just one of those things.

An interesting and brilliant coping mechanism kids with autism have is that when the going gets tough, they assume the words and personalities of fictional characters. When my son was little, he could insert a line from any TV show or movie into a conversation so seamlessly that 90% of the time the listener didn't detect the plagiarism. Awesome, right?

Older kids & even adults with autism still rely on this method to cope. However, it's on the down low. For instance, today my son was having a rough morning. So, he went to school as Chris Kratt from the TV show "Wild Kratts". Now... he didn't wear a Halloween costume or anything. He wore regular jeans and a T-shirt. However, this mom knows that his choice of jacket (orange) and tennis shoes (black) was critical to the "look" of Chris Kratt. He will spend the day pretending he is Kratt especially when the going gets tough (recess). He will have a whole show going on his head. He will draw diagrams during art class that Kratt needs to accomplish his mission. He will eat his lunch and picture himself in the jungle tree eating bugs and leaves.

He is not delusional, he knows he is imagining and pretending. But it's more than "fun" for him, more than a game. It is the way he socially navigates the very difficult-to-navigate first grade. When he is Kratt, "John" is off the hook for a few moments. Ahhh bliss.....

So, lots of times, you may see an autistic person muttering to themselves, deep in thought, seemingly checked out. They aren't insane... they are brilliantly, amazingly COPING.

It's actually quite something.

Friday, July 1, 2011

That's What I Want

I will be 42 years old in September. Some days I feel really old. Some days I feel really young. Most days I feel about right.

It's hard for today's generation to imagine what life was like when I was growing up. We lived a life without computers, phones (for several years we didn't even have a land line), internet, cable, iPods, movies on demand, or camcorders. We had one car, one TV, one bathroom and no microwave. Most moms I knew didn't work outside of the home and I had only one friend whose parents were divorced (scandalous!).

The joy of our summer involved loading up into our family's Pinto Station Wagon and heading out to the farm to visit my Uncle Johnny and Aunt Suzanne and their eight children. Can you imagine? Eight kids, three bedrooms, one bathroom, and one income. And they didn't even have a reality show! They lived down the gravel lane from my Uncle Gene and Aunt Judy and their four kids. They had a big house and a trampoline that was level with the ground - built over a hole. So you could jump and jump and never fall off. Genius.

We would arrive at Johnny and Suzanne's house - jump out of the station wagon (quickly, because we were unencumbered by seatbelts) and run free. My cousin Tabatha and I were the same age and best friends since age 5. When I was really little, we lived on the East coast and when I was in Kindergarten we moved "back home" to Iowa. I remember the DAY I met her. She stood there, skinny and sorta quiet with tan skin and straight brown hair. I walked over to her with my pale skin, chubby cheeks and big laugh. I hugged her and pronounced us "Best Friends". And so, we were. Still are.

Tabatha and I would quickly take off and try to find a place where no one could find us. We were always hiding from older, annoying big brothers and cousins and ditching the younger ones. We climbed trees, hid behind the bushes, ran into the barn. When my uncle would line up giant bails of hay in the field, we could play "tag" on top of them - jumping from one bail to the next. Without fail, the older ones would shove us in between two bails and leave us screaming for help because we were too short to climb out. In the summertime, we swam in the above ground pool. It was actually a horse trough filled with hose water. And we LOVED it. At night we played Kick the Can or caught fireflies in Butternut coffee cans. Before we came in the house, in order to knock down the first layer of dirt we were often given a preliminary shower in the yard, via the ice cold hose. Then we all took baths - 3 at a time. If someone had to use the facilities while you were in the bath, the rule was to cover your privates with a wash rag.

Evening was when the real fun began. We kids played in the bedrooms - we did a lot of make believe. We did "plays" for the adults; we played church complete with communion wafers we made out of flattened Wonder Bread. I often swiped a Velour robe from my Aunt Suzanne and wore it in my role as "Priest". Even then I was a women's libber. ha ha

The bathroom had two doors. One went into the bedroom where we played and one that led into the kitchen where the adults were. Tabatha and I would often peek out into the kitchen and spy on the adults.

We'd see all the grown ups gathered around the kitchen table... ashtrays & beverages overflowing. There was usually a radio on and sometimes even a little dancing. Games or cards came out at times. Mostly I remember the laughing and the animated, lively conversation. It seemed like someone was always telling a funny story. This was more than family, this was friendship at its finest. These were all the people I loved most gathered around a vinyl covered table. As a little girl, peering into that 1970s kitchen, I remember thinking "When I grow up, that's what I want. I want to be a mommy. I want to laugh and dance and tell stories with my family. I want to be cool and groovy and stay up late. That's what I want."

Today, we laid my Aunt Suzanne to rest. Five years ago, she suffered a severe brain aneurysm. Since then, she'd been unable to walk, one arm was paralyzed, she lost her ability to speak for the most part. She required around the clock personal and medical care. During the past five years, her husband took perfect and constant care of her. He put his own needs on hold. He remained by her side ten to twelve hours a day. He fed her, talked to her, bathed her, took her on field trips. He never wavered. Never complained. He was a dedicated and loving spouse upholding his end of the marriage vows each and every day. He never lost hope, never gave up. He was a true example of what marriage is and should be.

In her final days, her weak body got pneumonia and simply was not strong enough to fight anymore. Finally, the pain left her body and she gracefully and beautifully went to her Heavenly rest. Her husband John by her side. Even in death, he stroked her cheek and kissed her goodbye. They'd been together for 56 years. Till death do us part? Not even close. Long past death, they will be together. How could they not be?

As I watched my Uncle Johnny at the funeral... surrounded by his eight children, their spouses, his eighteen grandchildren & great grandchildren... and seated to the right of his beloved wife's casket.... I could FEEL the love in the air. I am not being dramatic. It made the hair on my arms stand up. It was, and is, a love story for the ages. And I thought to myself...

"That's what I want."

Who wouldn't want that?

Rest in peace, Aunt Suzanne.

(carved in the back of her teenage bedroom vanity)