Wednesday, December 26, 2012

My Bad Day

It can be a very normal day, a good day even.  The sun can be shining, the birds can be singing.  All may be right with the world, but when one little thing goes wrong, it becomes Katie's "Bad Day".  The littlest, tiniest thing may get it started.  Not getting to eat when she wants to, or being told that she spilled something on her clothes.  It may be due to an argument she has with a sister, or if I tell her we can't go to Mc Donalds.  If she is upset, angered, disappointed or embarrassed at all, she will well up with tears, hang down her head, and say, "This is my BAD DAY".  It sounds kind of cute when you hear it in a story, but it is NOT cute at all when you hear it so often.  My oldest daughter got so tired of hearing it that she exclaimed, "Every day is your Bad Day!" 

When someone tells you that they are having a bad day, you want to reach out to them, to help them get through the hard times.  You might feel sympathy, or treat them a little kinder or more delicately.  You might give them a break on things, and even pick up the slack so that their burden isn't so great.  But, like the boy crying wolf, Katie is loosing sympathy points at my house rather quickly.  Don't get me wrong.  If something is really bothering her, or if she is hurting or struggling, we are all there to support her in any way that we can.  But after it was originally  comical, and now rather tiresome, it is all we can do to just get her through her moment of heartache without getting frustrated with her.  Because once the waterworks start, and the yelling follows, there is no talking her down off that cliff. 

I am sure some degree of Katie's angst is stemming from the fact that she is a teenager.  I am positive that parents of teens out there deal with similar situations on a regular basis.  I have an older teen, so I know this well.  But when you mix teen angst with Autism, it is a lethal combination.  Now the doors are slamming, the feet are stomping away, the music is blaring, and the term, "It's not fair!" are common occurences.  And you know how sometimes you can't figure out just WHY your teen is upset about something?  Try that with an Autistic teen that not only doesn't understand the feelings they are going through, but also doesn't have the words to express those feelings.  Or, in Katie's case, when she is so upset about something and crying, you can't understand a word she is saying!  There is one phrase I do understand, "It's my bad day!"

This is how it all gets started.  Katie will get off the bus from school, happy and laughing and looking for snacks.  "Katie, how was your day?"   "It was good Mom.  We watched a movie and I had a student council meeting and my friend sat by me in lunch!"  "Katie, do you have homework?  Let's do that before you have a snack (or watch TV, or listen to music)."   "No, Mom, I want to...(fill in the blank)."   "No, Katie, you have to do your homework first."    "TODAY IS MY BAD DAY!"      stomp, stomp, stomp SLAM! 

Sometimes it feels like I must have the patience of a saint to deal with Katie.  But then sometimes, even more times, it feels like I am the worst monster of a mother for the frustration that I feel.  I talk about Katie alot, because I love her so much, but also because it helps me to deal with my uncertainties and anxiety I face when I struggle with raising her.  I also talk about her alot because so many people are interested in her daily adventures and triumphs and tribulations.  I live my life with Katie like it is an open book, and I guess when you leave your book open, people tend to pick it up and read it.  I have been told by friends and strangers and coworkers and family that my husband and I are strong and are doing a wonderful job with Katie and her sisters.  I can't tell you how good that feels to hear, because it doesn't always feel like we are doing the right thing.  It doesn't always feel like we know what we are doing at all.  I know I share alot of Katie's success stories, but I have just as many stories that make me want to cry.  But if I can turn "My Bad Day!" into a good night, then our Adventures in Autism will be a success.

Sunday, December 9, 2012

Saving The World

We were so proud when Katie was selected to become a member of the Honor Society.  I thought that it was THE biggest deal, and nothing could make me prouder.  Once again, I stand corrected by the daughter that I (unconsiously) underestimate over and over.  Her projects for honor society began almost as soon as she was selected.  At the end of the school year the group was cleaning out lockers.  Then before school started they hosted the open house for new students.  They have had meeting every other week, candy sales, bake sales, hosted the parent teacher conferences, ran "slipper day" at school, participated in "Rake and Run", and most recently went shopping for needy families at Target.  That is a lot of projects for one group, and Katie has insisted on participating in ALL of them.  She writes down all her events in my calendar, reminds me about her plans before hand, and enjoys every minute of the project.  I am blown away by how involved she is in this group.  I am blown away by how much she enjoys being a part of something bigger.  I am also blown away by how the group excepts her for who she is, and includes her in everything.

On the way home from her latest project, Katie started to make her own plans.  She decided that she wanted to help "all the children in the world"......"you know, the ones in Tennessee and Florida".  First, she wanted to host a lemonaide stand.  I told her I didn't think that would go over very well in Michigan, in December.  So then she decided we should try a garage sale.  Again, a bad winter weather choice.  She started getting frustrated with me then, and said what she really wanted to do was earn money so she could take all the kids with cancer to Disney, and show them around.  I then had to further disappoint her when I told her I didn't think that people would allow their kids to go to Disney with just a teenager as a chaperone.  This had to be the cutest conversation we have ever had.  She was so determined to do something to help, so determined to earn some money to finace her charity events.

I know quite a few girls Katie's age that are as interested as she is in helping others, girls and boys actually.  A friend has a daughter who is just dying to ring the bell for the Salvation Army this Christmas.  My other 2 daughters, and many of their friends, have donated 8 or more inches of their hair to children with hairloss.  And of course there are all the classmates of Katie's on the Honor Society.  But Katie is Autistic.  Autistic kids generally aren't too concerned about other people and their feelings.  There are exceptions to that, of course, because there isn't a single Autisic trait that is absolutely true for every single Autistic kid.  But, having said that, Autistic kids have enough trouble figuring out their own needs and figuring out their own feelings, let alone worrying about what others are thinking or feeling or needing.  Katie takes  a whole class in school on social cues and holding conversations and interpreting the actions of others.  It is not something that comes naturally to these kids.  It is not that they don't care for others, or are selfish or self-centered, but it is just an element that is lacking in them.  So for Katie, who by her diagnosis would be expected to not pick up on these things, for her to want to help others in need, that is just remarkable to me. 

That brings to my mind the whole debate of nature vs. nurture.  If Katie, by the "nature" of having Autism, is not expected to care about others, does that mean that the way she was raised and the examples that were shown to her helped her overcame this particular hardship?  If that is the case, I have my parents to thank for that.  From the time my children were little, my parents have brought them to all their Kiwanis events.  My girls have done everything from food and clothing drives, to Kids Against Hunger, from ringing the Salvation Army bell to selling peanuts, from hosting the Angels giving tree at Christmas to walking in the Relay for Life.  It is no wonder the Honor Society snapped Katie up with a resume like that!  My parents instilled in my children the drive to help others, and to enjoy doing it.  That these events they attend are fun, and the feeling you get from doing something for the community is just a big bonus.  My parents "nurtured" in them the desire to make this world a better place for others, especially the children that need it most.  I may be completely off my mark giving them all the credit, but doesn't that have a ring of truth to it?  Doesn't that make a lot of sense?

Whether Katie's compassion was born with her, or taught to her, she has the biggest heart I have ever seen.  I am so proud of her, not only for her day to day accomplishments, but especially for her strive to be kind and giving to others.  As always, I can learn alot about life by just watching how she overcomes her hardships without being jaded by them.  Not letting them hold her back.  I don't even think she would list Autism as a disablity if you asked her.  To her it is more like a personality trait.  I have a harder time accepting it and rationalizing it and living with it and getting over it than she does.  But I am trying to learn from her example.  To learn how to give, learn how to love, learn how to serve.  I just try to keep up with her, running all over the place while she is making life better for others.  If you want to keep up with Katie's Adventures in Autism, go find her out saving the world.