Josh's Story

Images Captured by Luke and Lee Photography

Meet 8 year old Josh.  This Tiny Light is a very active, helpful, and happy little man.  At the age of four, Josh was diagnosed with Childhood Apraxia of Speech (CAS).  After over two years and countless tests for things such as Autism, a brain injury, and genetic abnormalities, Josh’s parents were relieved to finally have a diagnosis.  They finally had a label, and would be able to start helping Josh learn to communicate.  That relief soon faded to dread as they learned that there is no cure for CAS, and without substantial help before the age of five, there is little hope of ever achieving proper speech patterns.

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with Apraxia of Speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.  It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.  It is challenging to firmly diagnose CAS in children that are having difficulty learning to speak.

In the four years since the diagnosis, Josh has made amazing strides in learning to speak, even though it has been a hard fought battle to get access to programs when Joshua’s disorder is so rare.  They have used all of their available funds under their insurance plan, and without any type of government or private funding available, they are unable to provide him with the recommended amount of therapy.  They work hard at home on a daily basis and will continue to, even though at times it feels like they are floating all alone in a very big ocean.

The day Josh read his first book cover to cover without help was the most amazing day.  It compares to watching him smile for the first time or seeing him take his first steps.  For children with Apraxia, learning to read is a major issue.  Without being able to properly sound out words, it is incredibly hard for them to learn to read. Josh entered grade one with no reading ability whatsoever.  By the end of grade one, he was up to a Kindergarten level.  With a lot of hard work and determination by the end of grade two, he was almost at grade level, and now that his grade three year nears its end, he is at the top of his class.  Josh knows who he is and when he is confronted by the occasional bully on the playground, he takes his time to explain why he sounds the way he does.  He rarely lets their taunts or teasing bring him down. 

Although Josh has made great progress since his diagnosis, there are times, especially before bed or when he is particularly tired, when his speech is so bad that even his parents cannot understand him.  He is patient and will repeat things numerous times until you have finally understood what he wants to tell you.  No matter how tired he is, he never gives up – not ever. 

When Josh’s mom starts to look to the future with fear, she just reminds herself how terrified she was to send him to kindergarten when he could only speak four words … or about how nervous she was when he played his first soccer game and had to call out to his teammates … and how she almost started to cry when he brought home his first public speaking assignment from school.   “We have made it through all of those moments, and we will get through all the rest to come."

Story by Sue Renaud