Code Blue

As regular readers of my blog know, my middle child has autism.  This post is a reflection for autism awareness month.

One of the hard parts of parenting a child with a disability is determining when and how much to tell them about what they face.  How do you tell a kid, who looks 'normal' on the outside, that she has a lifelong disorder, that we don't really know what caused it, and that there is no 'cure'?

My husband and I have always felt that the less a big deal you make about things with your children, the better they will deal with things in the long run.  There is no talking-things-to-death in our household.  We've tried our best to not let autism become the focus of our family.

Around age 9 was when we explained the disorder to her.  It's hard to know at that age if she realized she was different.  She had always gone to speech therapy at school and was pulled out of the classroom for other things, but so are plenty of other students.  I think it wasn't until high school that she fully understood the scope of her issues, and it was inspiring to see her try to overcome many challenges and do her best to fit in.

In public schools, students have IEPs (Individualized Education Plans), where the student's teachers are aware of the exact disability and goals.  In college, that changes.  There is usually a disability office where you go once you are accepted for admission and provide documentation of the disability.  At Middle Child's college, she is given an official memo to hand out to each professor at the beginning of every semester that states that she has a disability and lists the accomodations that she is entitled to receive.  No where does it specifically name the disability, due to confidentiality.

Last year, she wrote about her disability for a few papers in her english composition class.  It was nice to see the professor's comments of encouragement to her.  This semester, she is taking a child development class.  It's a hybrid class, meaning that it's a combination classroom/online experience.  Many of the assignments have dealt with topics that encompass issues she has faced, which has posed an interesting dilemma........how much should she reveal about herself to her classmates?

One of their assignments was to post a powerpoint about their own attachment during early childhood.  She briefly touched on her disability and how difficult it was for her.  The final project for the class is to research a childhood disorder.  She decided she wanted to do autism.  I read through all the journal articles she found and I have to tell you, it has been extremely difficult for me to watch her write this paper.  Reading "It can be devastating for a parent to find out that their child has autism," "Parents may feel alone, angry, depressed and guilty because they have a lifetime of challenges ahead, and " Parents of children with autism have a greater chance of divorce" was not something I ever wanted her to have to think about.

Two weeks ago, she had the opportunity to speak to a music therapy class at a different university about her disabiltiy and how music has helped her.  Her best friend had written a paper mentioning her and the professor asked her friend if she thought my daughter would like to come talk to the class.  Besides giving a short speech, she also played the piano and sang a song from Les Mis for the class.  Never in a million years would I have dreamed I'd be dropping her off at a university for a speaking engagement!

(To get her through the rest of this semester, I'll be taking a short break from posting)