Joan
We have a great pediatrician that says "it is not what the brain looks like
but what
the child does" that will predict the outcome.
When a doctor says a condition is rare and then proceeds to give future
predictions,
I would say they are lacking a broad enough knowledge base to give such
"hopeless"
outcomes.
Everyone on this loop will say there are, without a doubt, large obstacles
along the
way. But through faith, perseverance and sheer will, the rays of hope start
to shine
through.
I think that a doctor can say there are many variable outcomes and even list
some of those variable outcomes, but offer a family time and encouragement to
assist the child as much as possible. Some of the Schiz children have made
development gains that would have taken their peer group, one tenth of the
time
to have gained, but what an accomplishment to have made it IN SPITE of the
impediments.
Our daughter has tremendous difficulty with speech but she has tons of words
and is highly intelligent. We continue to facilitate language development
and whatever she has or will gain is a true miracle, since she is said to have
an absent speech motor. She can now slowly say a sentence of 5 to 7
syllables.
She can now read a sentence of similar length, when I type it on the computer.
I estimate her speech to be approximately 2 year level for a child of 5
years, but I
think that it is impressive, considering how affected her brain is.
She might spontaneously say "hungry" and I will say give me a sentence and
she will say "I" (then I reinforce by saying "I"), then she will say "am"
(and I reinforce)
and then she will say "hungry" (and I reinforce). It gives her the positive
feeling of
being understood.
There are occasions where she is having a good day and can
slowly say an entire sentence such as "I hear water dripping", without having
to
break it down into singular words. This development milestone is just one
more
rock in the stream to stepping to the next level. I wish it were faster, but
I sure
am glad for what we get.
If parents and doctors could somehow see the glass as "half full" instead of
"half
empty", therein lies the success to not succumbing to discouragement.
Discouragement can be our and our children's greatest enemy (even for
folks with few health problems!).
When people say (or imply) "it can't be done" just say "wrong answer"!
Sincerely,
Joan