Nickolas' Story

Images captured by Studio 1079

Tiny Light Nickolas may spend as much of his day as he can playing sports – he especially loves running and lacrosse – but he always has time for hugs and kisses. This happy 6-year-old also has a creative side. He is a keen storyteller and has even made his own comic book.

Nikolas has ADHD and a neurological disorder known as sensory integration dysfunction (SID) or sensory processing disorder (SPD). This means he has difficulty taking in, processing and responding to sensory information about the environment and from within his own body. The result can be unusual ways of responding or behaving. For example, in the classroom, students with SID might act impulsive, resist group activities, fidget in the seat, or appear inflexible and stubborn.

Unfortunately, SID is not a recognized diagnosis. This has been challenging for Nickolas and his parents, Duane and Jacquie. “School has been very difficult. Most educators have never heard of SPD/SID, or if they have they have no understanding of all the elements involved and how truly difficult day to day life is for our son.”

The family takes it one day at a time. Nickolas is now on medication, and that is helping him focus better in school. This Tiny Light’s incredible resilience amazes his parents every day. “We tell him each and every day, at every opportunity, how much he is loved and that he can do anything he wants to in life.”

Written by Elaine Yong

Benjamin's Story

Images captured By HRM Photography

Meet Tiny Light Benjamin!  A mighty trooper!  Ben brings love and joy to those he meets.  Ben gives amazing cuddles, and his mom looks forward to their “treasured cuddle time.” Ben is a curious boy who loves to play with trains, computers, puzzles and videogames.  Dubbed “Puzzle piece kid,” Ben can master puzzles right-side-up or up-side-down!  WOW!  Mom says, “Ben is Ben, and he is the best!”

Doctors have been left baffled at times, researching and testing Benjamin, looking for a fitting diagnosis that best describes his needs, as well as the treatment and support that will support his needs.  Multi-challenged, ADHD, global delay and autism spectrum are just a few of the diagnoses that have been discussed at this point.  However, there is no cookie cutter diagnosis that fits right now.

At just two years old, Ben has endured and struggled with epileptic seizures.  They are investigating his seizures with hopes that they will be able to suppress them in the future, but there is much fear and uncertainty of the damage that these seizures have already caused.  To have some control of the seizures and to ultimately be seizure free would be a gift. 

Heartbreaking struggles and the feeling of helplessness overwhelm Mom on a daily basis.  However, there are always reasons to celebrate his success and growth.  Despite the challenges Ben faces, he conquers each day and brings sunshine to those who know and love him.  Mom knows that Ben is in her life for so many reasons.  Ben’s journey has made his mom a stronger person, and has given her the firm belief to learn, read, educate yourselves, seek support and advocate for your child. 

Story by:  Leah Nahirnick

Ethan's Story

Images Captured by Brooks Photographic

Ethan is a Tiny Light who loves trivia; did you know there are six different types of bacteria living under your arm?  Ethan knows!  He also loves James Bond, Tae Kwon Do, and collecting things – he will collect almost anything.  Ethan’s mom loves to hear him sing, and says that it does not matter if he is in tune or keeping time; he has a way of making it sound perfect. 

Ethan’s diagnoses include ADHD, Non-verbal Learning Disorder, Generalized Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Cognitive Functioning.  Although it seems a lot to deal with, Ethan’s parents were actually relieved to finally get the diagnoses.  Having something concrete to go on not only gave them comfort that they were not “crazy” for thinking something was wrong but also a jumping off point for dealing with all the challenges that Ethan faces. 

While he faces many challenges, Ethan also has many strengths.  He is kind and generous.  He sees the world with a child’s sense of innocence.  He is unbiased and honest.  He loves with his whole being, holding nothing back, and he has a quiet strength and resilience that amazes people around him.

Like most parents, Ethan’s parents hope that he will grow up happy and healthy.  While things seem difficult sometimes, they have faith that they will be able to get through it all.  They want him to find joy in simple things and know the unconditional love of family.  Ethan makes the world a better place and his family count themselves lucky to be a part of his world. 

Story by Shauna Salmon