Saturday, April 20, 2013


 Naked + Glue + Glitter = Dumb Mom

Mr. Beautiful waking up in the morning!
"Childhood apraxia of speech (CAS) is a neurological childhood (pediatric) speech sound disorder in which the precision and consistency of movements underlying speech are impaired in the absence of neuromuscular deficits (e.g., abnormal reflexes, abnormal tone). CAS may occur as a result of known neurological impairment, in association with complex neurobehavioral disorders of known or unknown origin, or as an idiopathic neurogenic speech sound disorder. The core impairment in planning and/or programming spatiotemporal parameters of movement sequences results in errors in speech sound production and prosody."
American Speech-Language-Hearing Association (ASHA) Ad Hoc Committee on Apraxia of Speech in Children (2007) [19]
This is the latest diagnosis for Kai Kai Sweetie Pie.    It is the “official” reason why he can’t talk.   Sounds like a nursery rhyme, the little boy with Ataxia and Apraxia. 
All neurological conditions are hard to diagnosis, Apraxia is no exception.    Does he have Apraxia because he has oral motor delay?   Will he ever be able to talk?   The answers are all vague.     There are no definitive answers in the neurological world.   The good news is that I have met a little boy through Northern Voices who had Hearing loss, Cerebral Palsy and Apraxia and he learned to speak well.  I have learned that most children with Kai’s hearing loss learn to speak.   Can he overcome this huge obstacle?   I am hopeful because of his spirit and tenacity. 
With that said, Kai likes to sign.   Talking is VERY hard for him.    He has a mountain to climb, yet there is life to be lived.   I don’t want his memories of childhood to be one of trying to fit a square peg into a round hole.     We need to meet him where he is at, which puts a lot of responsibility on us as a family to learn a new language and culture.   
We are looking at possibly a different school placement for him next year.    His expressive language is American Sign Language.   He needs to be able to sign with peers and to learn in one full language. 
We have observed the local Total Communication school.   Total Communication means that the teachers speak and sign at the same time, so that both modes of communication are being taught at once.   Children are expected to sign and speak if they have the ability.   At the school that we observed, none of the children signed or spoke.   When I inquired as to why, I was told that the parents don’t sign or talk to their children.   It made me so sad, it definitely is not the right placement for Kai.  
Next week, we look at the Metro Deaf School.   The negative of sending Kai to the Metro Deaf School is that it is considered a “voice off” school.    The teachers and students are deaf, therefore there is no verbal communication.   Kai can hear and he is still building his receptive language pathways.   How critical will it be for him to be in an environment where there is verbal communication?   
There are no easy answers.   Being fluid and trying new things and going back and making adjustments for your child is part of parenting all children.   With our special kiddo’s we just have to do it more frequently.    For now we will make the best decision we can for Kai educationally and we will readjust in the future if needed. 


  1. Liz,
    I noticed Kai was not wearing his hearing aids in the pictures. Is he done with them?


  2. Jeannine,

    Thanks for asking, but no he still wears his hearing aids. In the bottom picture I caught him waking up and he was at the top of the stairs looking down. No hearing aids yet. The other picture, we just didn't get his aids in yet. Sometimes on the weekends he doesn't want to wear them which I heard is common with aided children. They need a break. I try to keep them in as much as possible though.