Living with Finley...
Our son, in 2014, was diagnosed with a cluster of disorders - Developmental Coordination Disorder, Attention Deficit Hyperactivity Disorder and Generalized Anxiety Disorder. This is in addition to previous diagnoses of Executive Function Disorder and delayed eye development.
We thought we were prepared because deep down we’ve always known Finley was different. As a baby, he cried non-stop and barely slept. We resorted to wrapping him in a blanket in his swing. As a toddler and into pre-school, he struggled to talk. He learned to ride a bike later than most kids his age and couldn’t tie his shoes until well into elementary school. Still, the news crippled us for a few weeks. It took that long to digest the 27-page report from the neuropsychologist and decide how to tackle these distinct yet intertwined disorders.
In between doctor's appointments, meetings with the school and the normal chaos of raising two children, I am documenting Finley's life to show what it is like to live with these disorders. Over the next few years, I will photograph Finley at home with family and friends, at school, during extracurricular activities and at his many medical appointments. We also will write blog posts about events, episodes, celebrations, failures and anything else to document our family's journey. We hope Finley will contribute as well.
Our intent is not to elicit sympathy, compliments and such, but to provide information about these disorders and what it's like Living with Finley. Since starting this documentary, many friends and family members have told us they had no idea Finley struggled at all, much less had these disorders. But that’s the thing about neurological disorders – they aren’t always obvious to others.
Few people know about DCD even though the World Health Organization recognized the disorder in 1992 and an estimated 5-6 percent of children worldwide have it. DCD is a chronic neurological disorder that affects a child’s ability to plan and coordinate movement. Basically, messages from the brain are not accurately transmitted to the body. The likelihood of at least one child in every classroom having this disorder is great. Yet, DCD is often an overlooked developmental problem by clinicians.
Formerly called “Clumsy Child Syndrome” children were often thought to outgrow this disorder (by medical professionals until the early 1990s), but much evidence shows that DCD continues to affect children into adulthood.
People with DCD also tend to have other learning disabilities like dyslexia and medical disorders such as ADHD. In the medical world, they call this as having a high co-morbidity rate.
In the United States, some research is being done into DCD. Most of the published research originates from foreign countries, primarily the United Kingdom where clinicians often refer to it as dyspraxia.
Chronicling our family’s journey is a way for me to make a difference and raise awareness about DCD and these other disorders. I have been a professional photographer for 22 years and I hope the pictures of my son and family educate and inspire others.