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.

Autism Awareness Month

I am not really sure if this is the proper place for my post but maybe it is.  It is all about Sam after all.  The question for me is this, "Why are we so behind the times when we live in 2014."

This is where I am heading with this.  While walking I was texting and it says, "Don't text while walking."  Has anyone died while walking and texting?  Maybe?  Why do they say that?  They say it because texting is our way of life.  Who makes a phone call anymore?

How did I discover Sam's talent in photography?  It all had to do with my phone.  All our phones have cameras and he was always stealing mine to take pictures.  I am running around trying to leave the house yelling, "Where is my phone!  Where is my phone!"  Sam always had it.  It drove me nuts.

Today, with all of the conference, speaker series and books I have read, I know that it was all non verbal communication.  He was telling me that he wanted to take pictures.  The photography started to teach Sam how to read.  It all happened from technology.

The big question today is how to get Sam to write.  Everything goes in a progression of events.  Sam can now work his camera like the pros but he now needs help in learning how to edit.  I am tired.  Sam now knows how to read, he learned how to read by reading his comments on his page.  He needs to learn how to write.  I am tired.

Somewhere someone has got to pick up the ball.  I am frantically trying to get my point across to someone. When Sam was two years old he would smash his crayons.  I particularly remember this blue crayon.  Blue is all I see when I think of Sam writing.

I also remember the screaming.

He would also write on the walls but every child does that.

I am lost, I am always lost.  I have lost count of the restraints that have happened over writing.  Fighting is what people see of me.  No wonder I don't have any friends, right?  That is what I have been told.  I have to learn radical acceptance, right?  That is what I have been told.  

Everything changed March 14th 2014.  That was his first restraint in his new school.  He also says that the guy grabbed his shirt, twisted it and pushed him against the wall.  A State investigation happened and the approximately 250 pound guy still works with my son.  We were late today and it was that guy who met me in the office to pick up Sam.  He was all smiles, I wasn't.

Sam is known as the kid who takes pictures.  OK, correction, the community knows him as the kid who takes pictures.  I don't know how the school sees him.  "But we gave him a computer?"  So, Sam can't spell.  He can talk into a computer, he can start the word and have the computer finish it for him with the right program.  Sam recognizes the words because he can read.  If I thought he could be writing with a pen and paper I would be doing that.  I try to get him to do things with writing but it is way beyond me.  Again, I am tired.  If I had a choice of Sam either knowing how to read or to write I choose reading.  I believe I have made the right choice.

I wish I could say that I didn't just give Sam a camera.  That is exactly what I did.  What took the work was getting him to read.  It is the same way for writing.  Sam knows how to work a computer.  He needs to learn how to work it for writing.  That takes time, patience and somebody who knows what they are doing.  It takes someone trained in Assistive Technology.

I will keep fighting.  

*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.