Autism is generally referred to as a “spectrum disorder”. All this means is that no two cases of autism are exactly alike. It manifests itself in different ways, in different people. After the weekend we had, I wonder if we could also categorize each day living with autism as “spectrum” days – no one day looks exactly like another.
On Friday night, Melinda and Anna’s school had a fundraiser walk/run. We had paid $30.00 to enter and participate in the activities. Unfortunately, we got to the school and Anna refused to get out of the car. By the time we figured out we weren’t going to make the event, we were stuck as they had closed the roads leading in and out of the school for the walk/run. So, basically we paid $30.00 to sit in the parking lot for 20 minutes. Lovely.
Fast forward to Sunday. Someone at church gave us tickets to see “Disney on Ice”. With excitement, mixed with fear, we accepted the generous offer and drove into Nashville. This time it was different. She not only went, but she had a fantastic time. As a matter of fact, she woke up this morning happy as could be, begging to go again.
I can point to dozens of other days where she is fully engaged and cooperative, and others where she refuses to do anything. We just never know which day today is. I can’t explain it, just like I can’t explain why she can do some things other kids with autism can’t, or they can do things she can’t.
Now you know why the international symbol for autism is a puzzle piece.
Below is a link to a video about living with a child with autism. We really debated on whether or not to even post this message, but after thinking about it we decided to go ahead. Please know that our motivation is purely educational. While the video is very emotional, we aren’t seeking sympathy, just understanding.
When we first saw this video we both agreed that this is the most accurate portrayal of daily life with a child with autism that we had ever seen. Most people still think of Rain Man when they think of autism, and although Dustin Hoffman’s portrayal is somewhat accurate, it just isn’t reality for most people.
There is another caveat, too – we are very blessed with Anna. Although she leans toward severe on the spectrum, she isn’t as bad as some of these kids. We experience probably 80% of what you see in the video. However, every single thing that is said by the parents in this video, we have said, thought, experienced, agonized over, suffered through, and worried about. That is what we wanted you to see. We want you to know that when we say we battle with Anna, this is pretty much what it looks like. When we are stressed about money, or we are tired, or we can’t go somewhere, this is why, and this is a lot of what our life looks like.
Extra credit also has to be given to Melinda. Unlike the women in this video, she works full-time. She sacrifices more than most when it comes to life with Anna. She is truly an amazing person and deserves all the credit, encouragement, and reward for everything she does. All day. Every day.
That being said, the video is called Autism Every Day. When you click the link, just go to the section called Autism Every Day and choose your bandwidth.