One Sound at a Time....Emily's Story

Emily Grace is a sweet and loving 4 year old.  She is happiest when her family is together.  She is never offered anything that she doesn’t want one for her sister and brother too.   She loves anything purple and her dog Sophie who happens to be four times her size.

Emily was late meeting her milestones and we knew early that her development was a concern.  She eventually did all the physical things she was supposed to do, but at 18 months still wasn’t babbling.  We consulted ENT’s and started speech therapy.  Months passed and Emily was making little to no progress.  In July of 2012 we took Emily to Miami Children’s Hospital.  Emily underwent many tests to check her hearing.  In October 2012 it was determined that Emily has high frequency hearing loss.    Although this will make learning to speak more difficult this is not the cause of Emily’s inability to communicate.  In November we started with a new team of therapist (speech and occupational) and shortly thereafter Emily was diagnosed with Childhood Apraxia of Speech (CAS).  It is such a relief to finally have a diagnosis.   Now we can focus on finding the best therapy for overcoming Apraxia.

Childhood Apraxia of Speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

Emily will not outgrow CAS and it is not curable.  Without intensive and specially designed therapy Emily will not learn to communicate.  Through hours of research on CAS I found a Speech Language Pathologist that has been instrumental in developing techniques and therapy tools for children with Apraxia.  I had the opportunity to meet Nancy Kaufman this past January.  Through video and phone conferences with Nancy, Emily was selected to be one of 12 children with CAS to attend a three-week “camp” in July.  Our family will travel to the Kaufman Children’s Center in West Bloomfield, MI.  There Emily will work with Nancy Kaufman and other therapists.  At the same time I will learn these strategies so that I can continue the work when we return home in August. 

Emily has just started a long and hard journey.  This is a journey that leads to the unknown and one she will make one sound at a time.