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…
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.
Rather than see her in such mental anguish, her family goes to extreme lengths to “live” Barrymore’s day over and over again.
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.
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 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?