"Our
family desperately needs help learning
to communicate properly with Abby. We
want Abby to be able to connect with the
world around her and start to express
her needs and desires to us. We know our
little girl is in there somewhere, but
she is trapped in her dark and silent
universe.
Our big hope for Abby is to find a special
intervenor to come work with our family
to help unlock her mind and fingers so
she can become as independent as possible.
She is our sweetheart and her presence
in our family is so valuable. Her fighting
spirit and strength of character have
been such an inspiration to my husband
and me. We are looking forward to knowing
our child more deeply."
"There are many struggles having a
child with special needs. We are overwhelmed
with just the everyday issues let alone
the school issues. We have been having problems
with the school, it has been a very emotionally
draining year for our family. The deaf-blind
factor has always been an issue. It's hard
to find individuals that are trained in
this area. Trying to coordinate the blind
services and the deaf services has been
tricky. We feel that Emily is very behind
in her learning. We are always looking for
help, and are on many waiting lists. We
are afraid Emily is falling way behind and
we are concerned about what her furure holds.
Emily is a very smart girl and we want her
to learn to her full potential."
Kodiak was born
with CHARGE Syndrome. We are facing so
many issus with him. We are trying to
break the communication barrier...
This morning he woke up at 4:00 a.m. and
kept turning on all the lights and waking
up the other two kids and my mom and I.
This made it hard to get the other two
up for school. I have no way of communicating
to leave the lights off. He needs to drink
more fluids but it is a constant battle
that can take up to an hour just to get
in 4 oz. Eating is us feeding him. I want
to potty train him but don't even know
how to begin... I feel so overwhelmed
that I just want to go to sleep in the
middle of this stress. I feel so exhausted
all the time. I do have a lot of hope.
"Trying to communicate with a child
who is either deaf or blind is one thing,
but both is very difficult. In her classroom,
she does have a vision specialist that comes
in a few hours a month to observe Tori and
offer suggestions, but I feel that having
a trained intervenor is the only way. To
me, having a well trained intervenor is
as necessary as her needing her wheelchair
to get around most of the day. The school
district wouldn't deprive her of her wheelchair
when she needs it, so why should they prevent
her with a link between her and her environment?
But they do."
