How It All Got Started

It was all right in front of me and I didn’t notice. My advice is to look for clues, especially non verbal communication. Look for the interest, not the passion.

Let me explain:

Sam’s first self portrait at Hochstein School of Music, Rochester, NY

In terms of my own life, my timetable is BC and AC which stands for Before Cancer and After Cancer. In the BC years I was in survival mode. I was blamed for Sam’s differences. His differences were alarming. He was nonverbal and I couldn’t find help. The only instinct I had was to find as many people I could in the health professional world. Chemo Brain puts a fog over everything and I only have bits and pieces of memories. Maybe chemo induced amnesia is another blessing that came out of 2 ½ years of my own hell. 

I have 2 distinct memories that fill my memory bank. In 2007 Sam was kicked out of mainstream education and in 2010, when I recovered from Cancer, my son could not read.

In a nutshell, I lost 2 ½ years to advocate for Sam. He lost all of his services. I was never able to get them back. I laugh now because the educational system had no clue who I was or the work I put in to make sure I knew everyone I could in the professional world. I called on all of them and I went to work. There was no way that my son was going to grow up in a world without being able to read. I didn’t give a damn about writing or if he was going to become an avid reader. I wanted to make sure that he could read the directions on the back of a box.

I recovered in January 2010 and the first thing I remember was going to rent a movie. A found Temple Grandin starring Claire Danes. I don’t know if I understood what Autism was in the BC years. Watching that movie was Day 1 of the After Cancer years for me. I understood what Autism was and things started to make sense.

On my journey to teach Sam how to read, I read every single book written by Dr. Grandin. I then read every book that she referred to while writing her own material. My biggest take away was her quote, “Teach to the interest and think outside of the box.” I had my answer on how to teach him to read. I just had to figure out what his interest was.

I now know that one of the pieces I was missing was listening to Sam’s non verbal communication. He was always taking my phone and shooting pictures. I used to get so angry because I could never find my phone. All through my perpetual phone search years, I let him play with my phone because he was in tune with it and it gave me moments of knowing that Sam was content. The entire scenario didn’t leave a lasting impression. I wasn’t thinking at the time that photography was something to expand on for educational reasons.

While living my life in 2010, I had a book glued to my hand with the mantra “Think of the interest.” swirling in my head.  It was November of 2010 when I had my aha moment. I had a vividly clear video like scenario playing in my head of Sam taking a picture of me and my daughter when he was 5 years old. My daughter and I both commented on how strikingly good the photo was. She put it in a locket and gave it to me as a gift. That was in 2005. I instantly combined that memory with Sam always taking pictures with my phone and I had had my answer. Photography was how I was going to teach Sam how to read. I shopped for a camera for that coming Christmas with only one thought, “Should I buy him a Canon or a Nikon.” Sam now shoots with a Canon EOS R mirrorless  camera. 

Sam at Hochstein School of Music in 2012.

The “reading project” started in January 2011 when I asked his music therapist if he would help introduce Sam to his camera and fortunately he was all in. Sam and his therapist started working on how to handle his camera. We were very proud of his very first photograph of the music therapy session room. After that, the plan was that I would take Sam out to shoot and then the therapist would work with the photos during sessions. 

Thankfully, through non verbal communication, I learned that Sam had an interest in photography and I was going to do anything I could with that interest. While the therapist worked with Sam with the photographs, I posted them on facebook and had my high school friends comment on the photos. I set aside a certain time each day and we would read the comments. 

It all wasn’t easy.

Today Sam is reading emails, researching, sending texts and everything else that encompasses functional reading. Sam has learned responsible spending through various reviews of products and comparison shopping. Sam is equipped for what he needs to live a successful life. Also, and to be never forgotten by me, he fills my world with beauty.

I do remember a day a long time ago where he read the directions on the back of a box. There was something very dear to him in that box and he wanted to make sure he knew what he was doing with it.

You always remember the firsts of everything.

*Sam started talking in 2 word sentences at 5. Three word sentences came around 7 years of age. I don’t remember when he became a fluent speaker of the English language. It is all a blur.

**Just because a person is non verbal does not mean that they are not intelligent.