Saturday, June 9, 2012

Things That Make You Go Hmmmm.... OR Run Before I Smack The Shit Out Of You Part 1

"You should get a second opinion. She doesn't look autistic to me."

     If I am going to be diplomatic, I take a deep breath and I take into account that the "public face" of autism does not look like my daughter. Some people have only Forrest Gump and Rainman or an old documentary of non-verbal children in a corner, rocking, hitting their head on the wall, to base their knowledge upon. This is not Stephannie.

     BUT REALLY! Now the numbers say 1 in 88 children are believed to fall on the spectrum. Can anyone be so sheltered as to not know ONE? Can anyone watch so little tv, or read so little current information, that they truly believe the caricatures portrayed in these films are the mold?

     If I am going to be the cranky, frustrated, over-stressed bitch????

     Listen. You take the tickets at the mall carousel. That first (oh... and second... and um third opinion that I DID GET .... you know.. contrary to your assumptions....) was given by a pediatric neurologist who has written books and has lots of those pretty, framed documents on the wall. Just saying.

Thursday, April 19, 2012

"Where the heck did you get that banana?"... or... Why My Dog Is Named Anderson

With a stop light, green means "go" and yellow means "slow down". With a banana, however, it is quite the opposite. Yellow means "go", green means "whoa, slow down", and red means "where the heck did you get that banana?" - Mitch Hedberg

I was not raised to be the parent of an autistic child. I have wonderful parents. These parents have become even more than exceptional grandparents. Very little of what I learned from them in regards to raising a child can be applied to my own child. My parents, like the majority of their generation, did a dandy job raising a stop light. I am raising a banana.

I spend a lot of time translating. I am still not accustomed to it. Imagine understanding every individual word being said to you but either the words are put together in a completely foreign way or that every third word in the sentence is missing. Imagine being not the person "speaking" the alien language but being in love with that person and watching them struggle to make others understand. Now imagine everyone in the room, including the misunderstood love of your life, turning to you for an explanation that you are just not able to give. Welcome to my life. I am going to tell you how I have begun to decipher banana.

My earliest attempts at dealing with such situations was to just tell the confused parties "She is autistic." That statement was usually met with timid smiles of understanding, nods of consent or shrugs of indifference. It took a while for me to realise that all I was doing was giving people permission to dismiss my child. I was not helping her. I was "scrapping her mission". I was taking away all of her power. If you point out the banana on the floor people may not slip on it but it is still on the floor. If you pick it up it has potential.

My second plan of attack was to hover over her and give her "cues". Like the guy with his head sticking out of the trap door on the stage during a high school play, I would carry on as if I thought no one could see me. I completely invalidated anything she tried to express. Here is the banana. You can look at it. Don't smell it or eat it. It doesn't matter what you have done with all of the other bananas in your life. Just look at it. That is all.

"Children are likely to live up to what you believe of them." - Lady Bird Johnson

My current tact has been to just let her fly. Sure there are times when this has been disastrous but they have been her disasters. Not confusing muddled mixed up problems of my making. She knows that if she needs help understanding or being understood she can ask me to help out, and I will. Most times people manage to gather enough to get the point. Sometimes they walk away confused. Sometimes they ask HER to clarify. No matter what happens it has been far more beneficial to her self confidence than any other changes we have made throughout the years. She has been far more sociable. She initiates far more conversations. She brings far more joy and entertainment (both intentional and unintentional) into every one's lives.

For example.....
Our dog is named Anderson. If you ask Stephannie why she picked out the name Anderson she will tell you "... because calling a dog Bull is dumb in any language, the John Bentley part of that story... you know the story... that story is just too horrible, and Mom thought the neighbors would laugh if she ever had to yell 'Belcher' out the back door." If you need the Banana to Stop Light translation book just ask. I'll keep it warm for you.

Saturday, April 14, 2012

This is Cheers and She is Norm

Some people think a year begins on January 1st. They are wrong. Some people who work in the education field will tell you it starts the day after Labor Day. Wrong again. The year starts on the day the Somerset Patriots hold Fan Fest.

Stephannie's calendar is a little different than most. That applies on a yearly, daily, and hourly basis.  If she could go from April to October, include Thanksgiving and Christmas, and just skip the rest of the year I am pretty sure that would be ok. Like most  children on the spectrum, schedule is key. The ability to anticipate.... to predict... function and outcome is a comforting and in some cases mandatory thing. So how did baseball fit in to this?

When I became aware that Steph was not neurotypical, well before any doctor gave us the label of a diagnosis, I began down a path of allowing my life to change in order to suit her. Going to the corner store for milk was an adventure so things like baseball games and other sporting events... things that had been very important to me... just ceased to exist. She freaked out in crowds. She wouldn't go in to a public restroom. She would only eat Gerber hot dogs and mac and cheese. They don't give private showings of play off games. They don't serve Gerber hot dogs out of those insulated hawker bags. Let's not even talk about the restrooms.

Don't assume you ever completely know what is going on in your kid's head. Don't ever cheat them out of an opportunity to learn or find joy. They CAN adapt.

A friend of ours had won tickets to a game. Unaffiliated, minor league, local baseball team. They assured me they would be in no way put out with us if we accepted their invitation and then had to bail after the second pitch. I honestly thought we would be lucky if we made it through the Star Spangled Banner, but really, why not? No one was putting out money. It was fairly close so not a big deal to just turn around and go home. It was a selfish act. I wanted to go. If I could get away with hearing the ball hit the bat just once.... never in a million years did I expect the crying to hold off until the game was over. Never.

It was an overcast day/night. Cool for a mid July contest. That helped. It was a Tuesday night. No big promotion. The crowd was small. That helped. We got to our seats just as the anthem was beginning.

I have never seen my child more at home. She LOVED it! It was like a switch flipped. She asked questions. "Why is that man wearing a mask? Why does everyone over there wear the same shirt but over there they are wearing a different shirt? Why does that man get to have the ball all the time? I knew the answers to these questions and she was actually valuing the information she was getting from me. She CARED!  She paid closer attention to what was happening than I would expect any child her age to do. By the end of the night she understood what strike, ball, out, inning, score all were and could tell you all about it. Try to stop her. Go ahead. We had to do this again.

It took about 2 weeks for me to decide I was brave enough to try again. Just her and I. I checked out the team's website. I tried to pick a night that I could hope for a light crowd.

All the while Steph was doing research of her own. She watched any game she came across as she flipped through the channels. She asked more questions. She spent  a lot of time looking at the program book we had taken home as a souveneer.

We arrived early. I figured my best bet was to get in before everyone else did. Get to our seats and pretend we were the only ones there. It was like we had sat in those seats everyday since she was born. I could almost feel all of her normal anxiety fall off and she started talking again. Only then did I realise just how much she truly did get out of the last time. She could tell me most of the players first and last names as they walked up to the plate BEFORE they were announced. She knew their songs. She knew their hometowns. She could give you their line from the last game. I was blown away.

She seems to be drawn to the routine of a game. While the event is rarely what someone could call predictable,  there is structure. 9 innings. Away team bats first. #_ bats first. #_ bats second. Three outs then "our guys" get to hit. Three more outs. Next inning. 9 innings and it is time to go home. When things don't go according to the framework they go according to the rules. There are rules. They always follow the rules and that is KEY.

We still occupy those very same seats, every other game (+whenever else we can manage), going on 6 years now. There have been some difficult times (Steph can not deal with the unpredictability of rain and there was one lou lou of a melt down when we were trapped in the middle of a mass exedous after a game) but she has thrived in the patterns and ritual she has found for herself in the sport. She loves the stats. She collects information about "our team" and "our players" like marbles. She dances the Cotton-Eye Joe. She leads the chants. She endears herself to everyone around her. Everyone knows her. This is Cheers and she is Norm.