I was at our friend's house one day. Her son is Evie's best friend at school, and he has autism. She and I were discussing the things we have to do in order to try to "work with" autism or sensory integration problems, or even 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" see 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. Eat, medicine, brush teeth, brush hair, get dressed, read books, go to Grandma's, play, put toys away, eat lunch, ... bathtime, medicine, read books, prayers, sing, bedtime. Whenever she would start to panic, I'd say "let's look at our 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. He quickly comes to learn that she was in an accident that caused a head injury which resulted in her inability to retain memories post-accident. So, every morning when she woke up, she thought it was the beginning of the day she had her accident. Her family had reacted to this by adjusting their lives to live that same day over and over again. They printed up newspapers to make it seem like it was that day. They would give her the same task of painting the garage wall over and over again, and then at night they would paint the wall white after she had gone to bed so she would never know that she was living the same day over and over again.
They let the injury run their lives. They put their dreams on hold. Their future was living that same day over and over again.
However, Adam Sandler came in and said, "I love her! There has to be a way that we can make this work." He had to find a way to help her learn to "LIVE" with her limitation. Okay, 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 was. 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. Day in and day out trying to teach you to LIVE, to SURVIVE, to THRIVE despite your limitations." The obstacles they face in just making it through a day are incredible, yet 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, "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.
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