Wednesday, February 5, 2014

WAGR Wednesday~50 First Dates Revisited



I wrote this piece back in 2009 just after Evie returned to school from winter break.  I’d like to share it on this WAGR Wednesday because I think it is so relevant to some of the daily struggles that we as WAGR parents face. 

As I announced yesterday on Facebook, our family will be going through a big move soon, and that could create enormous amounts of anxiety for any one of us, but especially Evie.  I will use this story as a reminder that I just need to continue to help Evie integrate the present with the future so she can understand how and why her life is changing.  We will get through our big move one day at a time; even if it takes 50 first dates…

One day, several years ago, my friend and I were discussing the things we have to do in order to try to "work with" autism or sensory integration problems, or even Obsessive Compulsive Disorder (OCD). For example, the joy of Christmas trees for us is like a thorn in the side of our kids who need routine and structure. A snow day or Christmas vacation, while a thrill, throws our kids into panic because it's not how they "normally" schedule their day.

I looked at the Velcro-schedule board that I constructed for Evie in order to help her get through each day of Christmas vacation.   The pictures showed her when she would eat, take medicine, brush teeth, brush hair, get dressed, read books, go to Grandma's, play, put toys away, eat lunch, ... bathtime, take medicine, read books, prayers, sing, bedtime.   Whenever she would start to panic, I'd say "let's look at our picture-schedule." We'd pull off the pictures of things we had done so she could see what was coming next.
After a moment of reflection, I realized, this reminded me of the movie 50 First Dates  
Adam Sandler's character meets Drew Barrymore’s character.   Sandler learns that Barrymore was in an accident which caused a head injury and resulted in Barrymore’s inability to retain memories post-accident. Every morning when she wakes up Barrymore thinks it is the beginning of the day she has her accident.

Barrymore’s family has reacted to this by adjusting their lives to live that same day with her over and over again, because whenever Barrymore would learn of her condition she would have an extremely scary sort of breakdown. 
Rather than see her in such mental anguish, her family goes to extreme lengths to “live” Barrymore’s day over and over again.   
They print up newspapers to make it seem like it was that day. They give her the same task of painting the garage wall over and over again; while at night they paint the wall white after she had gone to bed so as not to destroy the mirage that they create.  She and her family even sit down each night to watch the same football game as was on the night of Barrymore’s accident.
They let the injury run their lives. They put their dreams on hold. Their "future" would be living that same day over and over again.
However, Sandler’s character comes in and says, "I love her! There has to be a way that we can make this work." He has to find a way to help her learn to "LIVE" with her limitations. But, wait, she couldn’t remember beyond that day! She would wake up every day seeing him as a STRANGER not the man she loved! How could this ever work?

Because I don't want to be a SPOILER, I won't tell you what his solution is.   But, I'll strongly encourage you to seek out this movie to see how love can create incredible ideas that lead to incredible solutions.

It's our love for our special kids that keeps us going even on those tough OCD, autism, sensory integration problem days.
We are choosing to live our lives in order for our kids to be able to live theirs
We're not going to close ourselves in our homes in order to avoid the panic of the mall, or never take them to a theme park or Chuck E Cheese because they might get over-stimulated. 
We painstakingly prepare them for these events days in advance with social stories, and pictures, and discussions of "See Evie at Disneyworld." "See Evie on the airplane".

There are days when we don't want to fight the fight. There are days we want to give up and say, "I can't do this. It’s too tiring to day in and day out try to teach my child to LIVE, to SURVIVE, to THRIVE despite her limitations." However, the obstacles our kids face in just making it through a day are incredible, their bravery is astounding, and we love them and we want them to succeed. Sometimes it takes medication, sometimes it takes a ridiculously detailed schedule of pictures, sometimes it takes challenging the OCD by saying, "I’m sorry, but the light stays on, this is how we live!"

The reward in the end is seeing our lovely kids succeed...seeing them with Chuck E Cheese, seeing them smiling in the dental chair, seeing them use a spoon or fork rather than their fingers. 
Isn't love amazing? 
Sometimes it takes 50 first tries to eventually make it work, but those 50 first tries lead to the greatest reward of all--LIVING.

2 comments:

  1. I like this post. It just resonates for me. Love is amazing and is more powerful than we realize.

    ReplyDelete

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