Apraxia? Never heard of it

As anyone who knows our family is aware, Charlie struggles to speak.  Actually, struggle is a generous word.  If I’m honest, Charlie really cannot produce spontaneous speech on his own.  He has a rare neurological condition called childhood apraxia of speech (CAS).  I pulled the following description from the Apraxia Kids.com site:

Childhood Apraxia of Speech is a neurologically based speech disorder that can affect anyone. These children have difficulty creating the motor plans to produce and sequence sounds into speech. The brain knows what it wants to say, but it is not communicating effectively with the mouth. CAS requires frequent, intensive therapy with a professional who understands the problem and knows the techniques to help children progress. It also requires full family support and regular reinforcement outside of the therapy room. These families live, eat, and breathe apraxia.

To look at Charlie, you would NEVER know he is a special needs child.  He has the most infectious smile and darling laugh.  He adores his big brothers (when he’s not pounding on them or trying to steal their toys).  After his stint in the NICU when he was born, the neonatologist told us we needed to watch his development in three areas because of the pure oxygen he received and the jet ventilator he was on (both which helped to save his life): his vision, his hearing and his speech. 

His vision and hearing had easy methods to detect any deficiencies.  A pediatric eye specialist examined his eyes when he was an infant and assured us the oxygen he received in the NICU did not damage his retinas.  So, I checked that off my worry list.   At 9 months, we did a sedated hearing test at Cook Children's, and again, everything came back a-okay.  So from 9 months on, the waiting game began to see if Charlie would have any speech challenges. 

When I think back to the summer of 2010 when he turned 1, down deep I knew he was going to have problems.  I knew there was some terribly wrong with Charlie’s speech development, or lack there of.  And Coco (my sweet mom) will tell you the same thing.  I guess it’s just a mother’s intuition.   At his 12-month checkup, he met all his development milestones…except for language.  By that time, he had said “mama” and “dada” a handful of times, but that was it. Our pediatrician, who is a personal and dear friend of mine, was concerned too, but she wanted to give him a few more months to develop some sounds.

At his 15-month checkup in November 2010, Charlie had no new sounds or words (and he’d lost mama and dada completely), so we decided it was time to call Early Childhood Intervention (ECI).   He was seen for the first time right before Christmas.  I’ll never forget the day, Dec. 22, when I first heard the word apraxia from the ECI case managers.  I couldn’t even spell it, much less did I know what it was.  During that evaluation, he was found have the language development of a 6-to 9-month-old. 

After the ECI ladies left, I did what any normal mom would do.  I went straight to the internet to found out what apraxia was.   I was so distraught by what I found, I cried.  Apraxia was not just a speech delay…something that a little therapy could overcome in a few months.  It has no cure, no magic bullet.  This apraxia was serious business, and it wasn’t something I was prepared to label Charlie with.  So we waited. And hoped these ladies, who were not trained speech therapists, were wrong.

It took ECI almost three months to assign Charlie a speech language pathologist (SLP).  After a couple of sessions, she thought Charlie might have apraxia, but said he was too young to diagnose.  So she treated him as though he had expressive language disorder until “she could rule out apraxia.”

For an hour each week, she would use books and puzzles and toys to elicit sounds out of him, any sounds.   I would clap and praise him for practically any sound he made.  The ECI SLP also suggested we teach him some sign language, which he picked up on very quickly. 

This weekly dance went on for six months.  The SLP would come to attempt to get Charlie to make rudimentary consonant and vowel sounds.  I’d cheer him on.  Then, I’d work with him during the week on the sounds he was supposed to be learning.

In hindsight, I should have dropped ECI after the first few months because as well-meaning and sweet as our SLP, she wasn’t being aggressive enough with him.  At his 2-year-old checkup in July 2011, he was still grossly behind on his language milestones.  He still had no words and one very worried momma.

Throughout last year I can’t tell you how many well-meaning family and friends told us (and my mom) one or more of the following:

    “He’s a boy.  They usually are late talkers.”

    “His brothers are talking for him, so he doesn’t have to learn any words.”

    “Your house is too loud.” – well duh, we have three boys!!!

And my personal favorite:

“           “He will talk when he’s ready.”

Deep down, I knew everyone was 100 percent DEAD wrong with their theories, but my heart hoped someway, somehow, one of their theories would be right.