Tuesday, May 14, 2013

The Lucky One

I have heard it all, or just about, in my day.  The things that people say to me, in regards to Katie and her Autism, would just blow your mind.  Some people are ignorant, some people are cruel, some people are just plain uninformed.  I have learned over the years, to take everything I hear with a grain of salt, and not listen too closely to the hurtful remarks.  I try to give people the benefit of the doubt, that they are not intentionally trying to hurt her, or me, by what they say.  But I have to say that people don't always think before they speak.  They don't realize exactly what their comments mean to us.  I do believe the very worst part is when it comes from another parent whose child has struggles of their own.

Everyone has their cross to bear, everyone has their burden to carry.  It is not a competition to see who is the most troubled.  Who would win that anyway?  The person with the lightest load, or the person with the heaviest?  The one most troubled would invoke the most sympathy, so would that make them the winner?  Is there a hierarchy in all of this?  A pecking order?  If you have more issues, do you therefore get to complain more, do you get the microphone longer?  Should I feel that I don't have room to complain (or even voice my concerns) because they are less than yours? 

I was having a conversation with another parent, by no means the first of it's kind, and we were sharing our latest forays in the Autism world.  Now, Katie has had her share of success stories this past year.  I am extremely proud of her, and very vocal and open about how well she has been doing.  She has also had some bumps in the road as well, but I don't necessarily shout about them all the time.  During this conversation, I was listening to all the hardships and trials and disasters that had been encountered this week by a child with Autism.  I was familiar with the child, the parent, and the issues were not new to me either.  But I patiently listened and lent my support, when she decided to tell me that I was "lucky" that Katie wasn't like her child. 

I am many things in life, but "lucky" is not one of them.  I have worked very hard, along with my husband, to help Katie become the girl she is today.  She has worked very hard to find her way in life.  We started therapies and play groups and doctors when she was first diagnosed at age 2.  We had her in sensory integration therapy at age 5, and I literally got the crap beat out of me by her while we were doing that.  How many different schools, IEP's, medications, reward systems, teachers, tantrums, and prayers, prayers, prayers have we gone through up to this point?  I will not argue that some people have it worse off than us, than Katie.  There are more severely Autistic kids out there for sure.  There are physically handicapped children, and mentally challenged children that have horrors and challenges I could never begin to mention.  But I don't consider myself "lucky" that Katie isn't like them.  I think that seriously undermines the fact that everyone's life is different, and we have to learn how to take what we are given and make it work for us.  If Katie was born differently, more severely affected, and we worked hard for her to make a success out of the life she was born with, would we still be "lucky"?

To me, "lucky" implies that we were given something for free, that we did not earn.  You are "lucky" when you win a prize, or find a dollar lying on the ground.  The past 12 years of our lives have been the most challenging ones we will probably ever face.  We came out of them battered and bruised, but with the knowledge that all the hard work we did was for Katie, and we are in awe and wonder at the teen that she is today.  We feel blessed to have her, blessed that she is such a kind hearted and loving girl.  We feel blessed that she has been able to rise above her struggles.  But blessed and "lucky" are two different things.

If you are thinking that I took one small statement  and blew it out of proportion, that is not the case.  It was not an off-handed remark made once.  It was repeated again and again, and brought up in numerous conversations.  It was said in a bitter way, like a poor sport that looses a race.  Our children are not in a race, they are not competing to be the best behaved Autistic child, or the Autistic child with the least amount of trouble at school.  And, as parents of Autistic children, we should be on the same team, always.  We should be supportive of each other and of all the children.  We should delight in all of their success, and work together through their troubles.  Isn't it hard enough without attacking each other?  We, of all people, know what each other go through.  We know the ups and downs, the highs and lows.  We can go to each other and understand exactly what is going on, with only a few simple words. 

I don't expect anyone to walk on eggshells around me.  I don't expect them to choose their words carefully, lest they offend me.  I will not call anyone out, or shout at them, or lecture them, if they say something that is less than polite.  For the most part, people are very gracious.  But, there are things out there that will be said that may hurt my feelings.  I am a big girl, I can take it.  Katie is also a big girl, and might not even know that she should be offended.  If something is said, I just grit my teeth and move on, knowing that most people aren't intentional in their rudeness.  If they are obviously obnoxious I might make a statement, but otherwise, I just move on.  But, if you truly care about me, you will not call me "lucky".  Among those living their own Adventures in Autism, there are no "lucky" ones.