Naked + Glue + Glitter = Dumb Mom
Mr. Beautiful waking up in the morning!
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.
Liz,
ReplyDeleteI noticed Kai was not wearing his hearing aids in the pictures. Is he done with them?
Jeannine
Jeannine,
ReplyDeleteThanks 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.
Warmly,
Liz