Saturday, July 16, 2016

Finding Amber 2

It was Amber's 20th birthday - the birthday that straddles the winding river between teenage-dom and adulthood. My sweet daughter - true to nature wanted to go to Skate Country and spend the day with her sister skating and having icees and pizza.  We figured that on a summer afternoon on Friday the place would be open and didn't bother to see if was before we left the house. 

We drove up to a completely empty parking lot and learned that the skating rink was only open at night.  Quickly recalculating, I said - "Hey do you want to see Finding Dory?  I know I have Group-Ons for it."  Both girls gave a resounding "YES!" and we were on our way.  

I have blogged before about what the movie Finding Nemo had meant to me.  I had seen it with Amber in 2003 when she was seven and had been diagnosed on autism spectrum for four years at that point. Here is the link for the original blog.  Click here to read Finding Amber .  We had seen the movie again in 2012 and it touched me as a parent of a child with developmental disability and how far our journey had come: from Amber's first diagnosis as a toddler,  fearing that she would not be able to take care of herself, over compensating by doing everything for her and worrying about how people would treat her.  So here we were in a dark theater getting ready to see Dory's journey as a fish with short term memory loss and her flight into adulthood.  One of the really cool things was the audience was not so much composed of little kids but of teens who loved Finding Nemo and wanted to relive the magic of that first movie. 

As the young sweet little Dory works up the confidence to ask questions of her parents or other people - she must always preface it by "Hi. I'm Dory. I suffer from short-term remembery loss."   She also worries that she's constantly letting her parents down.  Of course, I got the feels immediately.  The sight of this sweet little thing trying to find her way in the world hit home and having to apologize for her disability was heartbreaking.   Her parents try to keep her safe but a rogue current carries her away and she is lost.  Unlike Nemo, young Dory can't remember exactly where she lives and as years go by, she starts to forget who her parents are.  It's a worst case scenario for any parent but for a mother of a child with a developmental disability it exposes your worst fear.   You then see Dory over the years - growing  up, constantly asking for help, explaining her disability and swimming further away from home.  Eventually, she meets Marlin and helps him find Nemo. 

It didn't dawn on my then, but in Finding Nemo, you had two characters with disabilities who had to take control and eventually help save the day when most people would have written them off. I was so focused on Nemo and his handicap that Dory seemed more of a comic foil than a character who was also struggling with her own challenges.  But her way of handling life actually made sense - she had confidence in herself because she didn't have any other choice.   When Marlin talks about wanting to protect Nemo from everything her response is a wake-up call to any overprotective parent:

Marlin: I promised I'd never let anything happen to him.

Dory: Hmm. That's a funny thing to promise.
Marlin: What?
Dory: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

When I first saw this - Amber was a child and the idea of her

being out in the world was theoretical - it would be years before she would be on her own and it was just something I didn't want to deal with at that point.  I just wanted to keep her out of harm's way, keep her from getting her feelings hurt from kids who might make fun of her, keep her from trying something new that she might fail at and feel embarrassed.  But the reality was that I wasn't so much protecting her - I was protecting me.   The idea that the world would not embrace your child because they are out of the norm is scary so you overcompensate.   You answer for them, you do as much for them as possible to soften the blow of anyone hurting them.  

There are so many plans that you make from the time your child is born - the birthday parties, the dances at school, the first boyfriend, the prom date, the wedding day.  Then you are told that they are on the autism spectrum and will go on the special education track.  The idea of how they will be as an adult one day is sidelined so you can get them from pre-school, to kindergarten, to grade school, hoping they can make it through the challenge of middle school and then high school.  At graduation, they will get a special education diploma which means that after 12 years of school they still need to take a GED to get into a community college or get a job.  You see the posts from parents who spend the spring of their child's senior year on social media wondering if their child got into the college of their choice.  You are just hoping that your child will be able to find a job, find an apartment and make ends meet.  You worry that you need to plan financially to still support them in adulthood and provide for them in your will to help them when you're gone and pray that her sibling will keep an eye on her finances.  It's pretty heady stuff to deal with when your kid is just getting out of their teens.  

As time goes on - you realize that your plan was just that - an idea but that nothing is set in stone.  You have a chance to create something out of the norm and because there are so few books about girls with autism.  You realize that you are going to have to make it up as you go along.  A plan is not really something you can ever really count on and you have to take things day to day.  Dory exemplifies that and says rather forcefully at one point, "I've never had a plan in my life!" 

For us control freaks that line seems like heresy. How can you never have a plan - how can you go through life without knowing how to get from point A to point Z - there always has to be a plan for God's sake!   But as Dory explains further,  “The best things happen by chance."   So I reflected on that quote and having a daughter who has what the world perceives as a disability - autism.  She is in my life to teach me that the most wonderful things happen when God laughs at your plan, throws it aside and gives you something incredible that you might not be able to comprehend at the time.  

Amber cannot be simply defined as someone with a disorder, a disability, or a disease - she is my daughter and one of the sweetest, kindest people I've ever met.  While some signs of autism, particularly Aspergers, can seem like the person you love is not connected and can be obsessive/compulsive - we've been lucky that Amber's symptoms are pretty mild and how they manifest are different in girls than boys.   She gets jokes, has a sense of humor and loves animals.  She still has a hard time making eye contact but her social skills have come a long way since she was younger.   She's rarely given me any type of female teenage drama that most parents must endure.  I can count on one hand the number of times that she's ever rolled her eyes and said "Whatever!" 

In a recent interview, the director of Finding Dory Andrew
Staten explains how he sees Dory and how he wanted to bring in her back story and relationship with her mother and father.  "Her parents don't try to change her. They just want to help her own who she is. Being a parent and seeing my kids grow up and enter the world, I realize that all kids are born with certain temperaments, flaws, quirks — and it will probably be who they are. You probably spend most of the time worrying about those things as a parent, too — you don't lose sleep over the things they do well. The best quality I could give Dory's parents is that they never doubt her." 

At the end of the day, I think most parents worry if their kids can make it on their own.  If we've done our jobs hopefully they will be creative, independent and loving people you've always prayed they would be.  Dory, even in light of her short term memory, is strong, smart, loyal and can even speak whale.   To quote Dory, "You have to let go and see what happens," because despite your best efforts - you won't be around forever no matter how hard you try.   And when that day comes - hopefully you'll have a good laugh with God about your plan. 

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