Self Advocacy

Having Sam as my son has shown me what courage is.  I watch him wake up every morning getting ready to do his life every day and it amazes me that he doesn't crumble more than he does.

As parents we begin our Autism journey with sorrow.  It is what it is.  What we do after our time or mourning is our decision as parents.  We fight for the therapies, we fight for the respite, we fight for our kids to have an appropriate education.  And then our kids hit the teenage years.  

I am not thinking about the ranging hormones and the lanky teenager who is going to smell.  I am not mourning the loss of high school dances and Sam not having "those group of kids" to hang with.  I am too busy thinking about what is going to happen when I am no longer walking on the face of the earth.

Sure, I am pissed off that I have to think about this.  I am also pissed off that Sam had to sit in a music class at the age of 13 listening to baby songs for six weeks when I thought I finally found a place that will see him for the 13 year old boy that he is.  It was a blow to my heart that he had to sit in music class and listen to "The Wheels on the bus."  I thought the fighting was over.

What Sam did next changed everything.  Sam spoke up.  He finally said, "this won't work for me."  The school changed the music class. I still have to go into the school to make sure they heard him and are going to accommodate him but wow, my total thinking has changed.  It is time for me to let him lead.  After the multiple restraints that have happened because of Sam's disregulation from having to again endure being treated like a disabled feeble minded invalid, he doesn't want to quit.  He wants to make it to his "other side."  

Self Advocacy starts within oneself.  It comes from feeling inferior and not being heard.  Self Advocacy is alive and well in the Autism Community by the Autistics themselves.  It doesn't matter what language you use as in person first or person last.  Self Advocacy is what you think of yourself and building your self worth from within.  Sam is going to choose how he wants to be referred to. Autism isn't who he is but it is who he is.  It is a neurological difference that makes him different.  It is Sam who is going to say, "Hey people, I need this or I need that!"  I am going to do my best to have him ask in appropriate ways.

People on the spectrum are abused, ignored and believed to be inferior.  The ones who have muscles that can't form the words are spoken in front of like they don't exist.  The Autistic Brain is an amazing set of neurological differences that bring out the uniqueness in the world.  It is those that are believed to be inferior who make the beautiful music, art and words that move the soul.  History has shown that.  I am not making that up.  Sam gets to be part of that.  

I can't wait to see how his brain develops as we find the people who are going to help him find his way.  When others press him down, he bends and explodes with curiosity and adapts to his environment.  I get to be a part of that too.  

I leave this post with one example.  Sam was walking with another photographer and we were walking across a bridge that connects one side of the Genesee River to the other and Sam came up with an idea.  It was a beautiful day and he aimed his camera over the gorge into the river.  He told the other photographer to start kicking snow.  You would never know by this photo that there was not a cloud in the sky.  It is my most favorite photograph that he has ever taken.  It is this photograph that gives me a glimpse into his brilliant mind.

*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk

*The background of this blog was a picture that Sam took while looking for Salmon.