My Superhero…

One of the things we are working with Dom on this year is more age and peer appropriate play and interaction. He loves his superheros. He also loves to role play and sport his cape. Generally, we would not let him out of the house with the cape – we are again trying to encourage more appropriate play for a 4th grader.

Yesterday, he was wearing his Green Lantern tshirt and put on his cape. It struck me to actually embrace his quirkiness this time and do a mini shoot with him while Michela was at dance. I wanted to shoot him against a red barn to make the colors pop but had to settle for the school which was nice anyway. It really helped keep the childlike feel to it.

I told him the other day that he was my hero and he just paused and looked at me in a very confused manner. He is my hero in so many ways for so many reasons. I owe a lot of who I am to him. He has helped make me the man I am today.

He very much enjoyed playing out his fantasy and having me document it. This was definitely a moment for me to cherish and not “fix!”

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Portraits of a Disorder

Some of you may or may not know that my son, Dominic, is a special needs child. Back in 2005, he was diagnosed with Sensory Processing Disorder. SPD (for short) is a neurological disorder that affects 1 in 20 kids. That is one child in every classroom.

Here are some facts about SPD:

From SPD Foundation’s website:
Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

What Sensory Processing Disorder looks like:
Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. These are the “floppy babies” who worry new parents and the kids who get called “klutz” and “spaz” on the playground. Still other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed – and inappropriately medicated – for ADHD.

Sensory Processing Disorder is most commonly diagnosed in children, but people who reach adulthood without treatment also experience symptoms and continue to be affected by their inability to accurately and appropriately interpret sensory messages.

These “sensational adults” may have difficulty performing routines and activities involved in work, close relationships, and recreation. Because adults with SPD have struggled for most of their lives, they may also experience depression, underachievement, social isolation, and/or other secondary effects.

Sadly, misdiagnosis is common because many health care professionals are not trained to recognize sensory issues. The Sensory Processing Disorder Foundation is dedicated to researching these issues, educating the public and professionals about their symptoms and treatment, and advocating for those who live with Sensory Processing Disorder and sensory challenges associated with other conditions.

October is National Sensory Awareness Month and every October, I plan something for it. Sometimes it is an awareness event. Sometimes I offer something for the SPD community. This year, I have decided to launch a photography based project. Between now and October 1st, I will photograph 100 children with SPD. These portraits will be unveiled, virtually, October 1st via the project’s website, http://www.portraitsofadisorder.com. In addition, I will host a live exhibit at my studio October 15th. Lastly, I am in talks with the SPD Foundation to host an exhibit at their symposium in Ft Lauderdale, Florida at the end of October.

This project is important because it gives a face to an otherwise invisible disorder. It affects 1 in 20 kids but no one knows about it. Some may ask if it is like Autism, which technically it is not. It is its own separate disorder. The parallel is that most kids with Autism have sensory issues. Unfortunately, our disorder does not have any celebrity spokespeople. We do not have a major marketing campaign to create awareness. The bulk of the awareness campaigns are being done in local communities by average parents affected by it.

So, this is my own little way of contributing to a more widespread awareness! Please stay tuned for more information!

For more of our story with SPD, please visit:
http://www.spdfoundation.net/newsletter/2011/02/sensational-families.html