Wednesday, February 27, 2013

The Longest Hour

We arrived at the doctors office an hour early.  It was partly my fault, hoping that we could sneak in a few minutes before our appointment; and partly my fault for not realizing our doctor didn't even begin seeing patients until our scheduled time.  Since I had assumed (and hoped) that we would "get in and get out", I did not properly plan.  I did not bring snacks, I did not bring an I-Pod, and I did not bring anything for Katie to do.  Nothing for her to do FOR AN HOUR.  I am shuddering just thinking about the enormity of that mistake.  That is like going to the desert without a bottle of water.  Like packing two pair of shorts for a week long trip to Alaska.  It is not only unwise, but it is uncomfortable.  I have had Katie in my life for 13 years now, I should know better.  I should always know to bring too much stuff, too much food, always, always, always.  I have been burned by this before, you would think I would know better.

The foolishness of the situtation sunk in pretty quickly.  Although the waiting room was spacious, that also helped to magnify Katie's voice.  Katie has 2 volumes to her voice.  Not talking, and LOUD.  No matter how many times you ask her to lower her voice, use her inside voice or whisper, she always talks loudly.  Now, if Katie has nothing to do, she is going to want to talk.  And when she talks, there is no guarantee what she is going to say.  In a loud ringing voice.  She does not always have a filter for inappropriate conversation.  And if I don't talk to her, she is going to start talking to her pretend friends.  This day, however, she chose to talk to me.  And ask me questions.  Random questions.  Question after question after question.  It was a very long hour.

The next thing Katie decided to do was poke my face.  First she started by staring at me.  And telling me I had wrinkles.  And a gray hair.  And a bump on my forehead.  Then she pulled on my ears to see if they were clean.  Then she practically climbed on my lap to look in my eyes. "You have blue eyes, mom."  That set off a whole  'nother round of questions and comments about my eye color, her eye color, her sisters' eye color, and her dad's eye color.  After pulling my hair in a make-shift ponytail, she had to ask more questions about my hair.  Was I going to let it grow long again, why was it a different color brown than hers, why did her sister have red hair, etc.  I looked up at the clock, and about 5 minutes had past.

I bet there is a mom out there with a toddler that is reading this and thinking, "that sounds familiar".  My problem is that Katie is not a toddler.  She is as tall as I am, and almost weighs as much.  So when she is jumping on my lap and pulling my face around to hers, it is a little different.  It is also different because people in society expect that from a toddler, not from a grown teenager.  Don't get me wrong, I don't care very much about what strangers in public think about Katie, but it does add to the tension and stress and anxiety level when they are shooting us looks. 

I will be the first to admit, I am a freak about time.  I hate to be late for anything, which usually means I am way too early.  I am fine with this, I know this about myself.  My whole point of going a little early to the doctors was because we had a jammed packed day, and I wasn't sure how I was going to squeeze everything in.  It was not my fault that my schedule was so crazy, plans kept getting changed by others that I had no control over.  To alleviate some of the stress, I thought we could get in a little early to see the doctor, but as time went on as we were waiting in the lobby, my anxiety grew and grew.  My inner crazy was climbing the walls.  But on top of all my own "time management crazy" stress, Katie acting like a toddler was only making it worse.  When I am stressed out, the littlest things just grate on my nerves.   Normally if Katie is poking and prodding at me, I will just laugh and play with her.  But when I am stressing, it is like nails on a chalkboard.  The only thing that kept me in that waiting room was the fact that if Katie didn't get seen by the doctor that day, she would't get her medicine prescription.  And no one wants to see that!

I think that I have a lor of patience with Katie.  I probably have more patience with her than anyone else does.  I know how to handle her mood swings, how to calm her hysterics, how to talk her out of her tizzies.  But there always comes a situation, from time to time, that just tries me.  Makes me feel like a pressure cooker that has been steaming all day long, just ready to bust.  My problem with the doctors office situation was that I had no out.  No options, no relief that I had control over.  I HAD to stay there.  I HAD to wait for the doctor to arrive at the time that they chose to arrive.  I HAD to remain calm and cool and not yell or get upset or frustrated, because that would only make matters worse.  I HAD to entertain Katie because I didn't bring her anything else to do.  This whole stituation could have been prevented.  I could have arrived closer to my appointment time.  I could have taken the time to pack a bag with snacks, and things to do, especially her I-Pod.  I guess this is just one of those Adventures in Autism that I will never forget, for the lessons it taught me.  Lessons that I should have already known and planned for.  Life is never a sure thing.  A plan is only a plan, never a done deal.  Always over-pack, over-think, over-expect things to go wrong and know how you are going to handle them when they do.  This was all my fault, and I feel bad for getting frustrated with Katie when she only acted exactly how I should have expected her to act when faced with this scenerio.  That was just about the longest hour of my life.

Monday, February 11, 2013

The New Normal

When you map out your life, your plans and your hopes and your dreams, you follow the path that will lead you where you want to go.  Or you try to follow the path anyway.  When life events interfere, for the good or for the bad, you obviously have to alter that path.  Life events of all sorts can completely derail your train.  Births, deaths, jobs, illness, whatever happens to come up, you deal with it and make the necessary adjustments to get back on track.  Sometimes all it takes is a little tweak here and there, create a little wiggle room.  Sometimes it is so enormous that your life will never be the same.

Life for me as a young adult was pretty simple.  College, marriage, job, children.  Visit the grandparents, church, special holidays, vacations.  We lived a simple life, a happy life.  When we had our first daughter, we made the changes we needed to make to create room for her, to incorporate her into our world.  Parents do these things every day.  Life gets a little more hectic, priorities shift, and then things settle down.  Eventually you settle into a normal routine, a normal schedule, a normal family life.  When we found out we were expecting another daughter, I figured we would just have to make a little more wiggle room, juggle a little bit more to make the adjustments.  And then came Katie.

Katie, Katie, Katie.  Katie was an easy baby, Katie was a happy baby.  Our lives didn't get this complicated until we started having Katie evaluated for various reasons, and 6 months into the journey, a school assistant first said the word "Autism" to us.  No one had ever mentioned it before.  Katie did not have the "typical" Autistic habits or difficulties or quirks or mannerisms, or whatever you want to call the "things" that make people think your child is Autistic.  But after having her tested and evaluted, she was given the label.  The autistic "things" came later.  But now here we were, handed the news that our 2 1/2 year old was Autistic.  What do you do with that?  How do you figure that into the path that you are following?  How do you make that fit into your lifestyle?  And, not to mention, at the time of Katie's diagnosis, I had another baby on the way.

Our normal life suddenly wasn't so normal anymore.  Our "fairytale, highschool sweethearts grow up and get married and have kids and live happily ever after" story suddenly looked like it was going to have a very different ending.  Not only a different ending, but a different middle too.  The story started out the same, but suddenly it's going in a very different direction.  The weird thing about it was that nothing with Katie had changed.  She was the same beautiful, happy, sweet tempered girl from the one day before her diagnosis, that she was after we got the news.  She wasn't different at all.  But LIFE had changed in that instant.  Our future, her future, was suddenly very very hard to see.  What did this mean?  What do we do?  How is this going to play out?  What is a normal life for us now?

Looking back on those early years, I am not really sure how we got through them.  A lot of those times are foggy; not the life events, but what I was thinking or how I was coping.  We had to create a "new normal".  We had to make room for doctors visits, and testing, and occupational therapists, and social workers, and speech pathologists, and fighting with insurance, and trying to explain to everyone what is going on with Katie, and new fears, and new uncertainties, and now suddenly everyone is calling me because they know someone who has Autism and they want me to talk to them.  That became our new normal.  My youngest daughter never knew life before Autism came, because she was born into the midst of it.  My oldest daughter probably doesn't remember what life was like before because she was only 5 when Katie was diagnosed.  The life that they live now is the only normal they know.  They know tantrums and imaginary friends and food obsessions and talking all night and speech difficulties and leaving places early and singing loudly in church and brutal honesty and unconditional love.  That is the only normal that they know.

The "new normal" has to have a different middle, and a different ending to the story.  It is not as easy to imagine how our lives will be end up now.  It is so much harder to dream of how our stories will read.  Katie is so different now than she was as a small girl, and a world different from how she was in elementary school.  After her diagnosis,  I tried to dream some new dreams for her, and she has already far surpassed them.  I guess it sounds silly saying "my dreams" for Katie, but I cannot see my life without her being a daily part of it, so our dreams get tightly wrapped up together.  Our Adventures in Autism will lead us down a new path, and we will find out what our "new normal" is, together.