Apraxia – A Mom’s Story

Momessay Apraxia

In 2000, while earning my master’s degree in counseling at the University of Georgia, I had a poignant and fortuitous experience during a weekend Expressive Arts Class.  The object of the assignment had  more pertinent and far reaching implications for me than what the professor intended.

 

That afternoon, the assignment was to make a personalized mask that would illustrate our individual identities.  I lay down on the table and my grad school cohorts got to work.  They carefully placed wet paper mache strips across my face while I remained motionless.

 

After a few moments, they began to engage in conversations in which I was not able to contribute.

 

I was immediately reminded of my grandfather, a very significant figure in my childhood, who had passed away recently at the age of 90.  He had suffered a series of mini-strokes and was left without the capability to communicate as prolifically and easily as he once had.  This was difficult for our family members as my Grandfather was “the storyteller” and loved to talk to anyone and everyone.

 

So after the mask was removed, I burst into tears — a cathartic cry.  I felt what my Grandfather must have been feeling as conversations continued around him at the assisted living center.  He must’ve felt like an uninvited guest at a party and I wondered how many of his caregivers really talked TO him and not ABOUT him.

 

I am profoundly grateful that I had this particular class and assignment.  Not only did it create a more powerful impression than what a textbook or a lecture could’ve taught about what some of the geriatric population experiences, it also prepared me somewhat for what lay ahead – my beautiful boy being diagnosed with speech apraxia.

 

My son Jackson, now just three years old, was born with a neurological disorder which currently renders him unable to coordinate the nerve impulse messages from his brain to his facial muscles.  In other words, the wires get crossed and he cannot easily initiate the complicated fine motor movements for appropriate speech sounds.  Because my son’s cognitive capacity is intact, his reality is that he wears the “mask” everyday.

 

Imagine your child not being able to share his wants and needs with you or others — what he did at preschool that day, what his favorite activity was, what he wants for Christmas or his birthday, what makes him afraid, what makes his heart sing… or even his name.

 

My job is to help him navigate through a speaking world. On difficult days when he is feeling frustrated, I put on my imaginary mask and remember what it was like not being able to communicate with those around me.  This shifts my perspective and helps me help him better.  I talk less and listen more to body language, gestures and signing.

 

To learn more about speech apraxia, please visit http://www.apraxia-kids.org/