Friday, June 18, 2010


When you have a baby or child who has
Agenesis of the Corpus Callosum you want
to know what to expect and how or if it
will affect them. Unfortunately, because
ACC has such a broad range of effects,
there is no way to tell for certain or to
predict what you can expect for your child.

Not knowing what to expect can be one of the
most difficult things to deal with emotionally
and can also be overwhelming at times...
especially if your child is making progress
very slowly and is slow to meet their milestones.

I can raise my hand high and personally
attest to this because my own child, Matthew,
who has Agenesis of the Corpus Callosum, is
developmentally delayed and he took a long
time to learn new things and to meet

One of the sections of information that was
included in the ACC Reading and Comprehension
document dealt with this very subject in
quite an inspirational way. I think it's worth
repeating as a separate post because I believe
that the information that other parents share,
who have a child with ACC, is heartfelt and
encouraging and I hope that you will too.


When you think that a child with ACC isn't
learning...think again. They very well could
be taking in all kinds of information with
little to no progress showing outwardly.
Then one day it just appears out of the blue
much to everyone's surprise...even the child's

First parent writes:

"As a baby Abbie didn't babble. She was a very
serious baby. At about age 2 she went from
virtually no speech, apart from a few single
words and their varied mutations, to almost
full sentences. She'd obviously been listening
and observing."

Second parent writes:

"Lexie never babbled either. No mamamama or
bababababa. Also, she never said uh-oh like
all other babies. Same goes with what does a
cow say...."mooooo" Nope! She, too, was a very
serious baby. At age 2 she had virtually NO words.
Then suddenly, somewhere after 2, she began talking.
I would not say full sentences over night, but to
us it was drastic!"

Third parent writes:

"Ryan started speech therapy at 15 months old.
For three long months, once a week, his therapist
would go over the signs 'more, all done, open'
and maybe 3 or 4 other ones. He couldn't care
less! He never seemed to be looking at our
hands (of course I kept trying to teach him)...
he had lots of fun playing with her, but didn't
pick up on the sign thing AT ALL!

At 18 months we were on vacation in Ireland,
when his daddy realized he forgot the video
camera in the car. So he went to get it.
While he was gone, I was tickling and picking
up Ryan for about five minutes. Then I stopped.
Then we looked at each other and he signed "more".
I screamed 'what'? And he did it over and over
and over again. Just in time for the video camera!
By the end of our two week vacation, he was signing
more, all done and open. The amazing part is that
it really seemed like he never paid attn to the
therapist and to me for the three months we tried
to teach him those signs!

Luckily he got kicked out of speech therapy at
three yrs old when he said his first 10 word
sentence. Speech has never been an issue again."

Fourth parent writes:

"My child was not dry by herself at school until
first grade, and even then had some accidents. I
know some schools are icky about wearing Pullups.
She was in Pullups until she was about 11.
She also was not dry at night until 13.

And she started learning to drive at 15.5, but only
got good enough to pass the tests after years of
practice, both written and behind the wheel, at 20,
a fairly long learning curve.

She got her permit at 15.5, then took drivers' ed,
which was very hard. She took the written tests
for the class over and over again until she passed,
but her driving was very nervous, and her drivers'
ed instructor never passed her on it. She drove
with us quite a lot, but not with much confidence.
It helped when we got a smaller car, as she feels
more confident in that one than the minivan
or--heaven forbid--the pickup. But her class for
students with disabilities at the community college
did a lot of work on preparing for the written
(actually computer) part of the driving test.
They worked on it one whole quarter. They also
used the practice tests a lot of states have online.
I'm pretty sure that intense practice in that class
is what gave her the knowledge to finally pass it,
on her second attempt. She took the actual tests
for her license when she was 20, and passed both
the written (computer) and driving parts of the
test, each on her second try. Until she actually
did it, I never thought she would be able to.
We were in denial that it would ever be possible
right up until she actually had it in her hand.

Now she has wheels! She drives the 30 miles each
way to school almost every day. No sweat!"

I shared a story about my own child, Matthew,
with another parent recently:

"I had worked with him for one whole year trying
to teach him how to say the word "bye bye". We flew
to Hawaii and were waiting for our connecting flight
to Maui. My husband went outside for something and
out of the clear blue tropical sky I heard Matthew
say "buh bye" and I nearly did a little dance...the
kind of I can't believe he just SAID it dance. My
husband was gone and couldn't hear this wonderful
new first word that our SEVEN year old child just
said. I grabbed my cell phone and called my mom
(as Matthew was still saying "buh bye"..."buh bye")
and I got her answering machine. I put the phone
up to Matthew's mouth and he SAID "buh bye" a few
times. My mom heard it later and kept it on her
answering machine for years.

While Matthew is still non-verbal with only a
handful of words...I continue to help him with
speech because he makes a lot of sounds and is
trying hard to put simple words together even
though he doesn't know he's doing it. I hear him
sometimes out of the blue say a word while he is
watching TV. For example, he saw a baby on TV and
said "bay-bee" clear as day without any problem.
I will never give up on him talking and will
continue to work with him and believe in all of
the things that he is capable of doing no matter
how old he is or what anyone else thinks."

Fifth parent writes:

"Parker started reading in kindergarten, much
to our surprise. Nobody even knew he could
until his special-ed class had returned from
a field trip to a pumpkin farm. They were
sitting in circle time reading the kids names
that were written on the bottom of the pumpkins.
Well Parker started reading all the kids names,
mind you he didn’t really start talking until
age 5. The teachers were shocked and so they
went and got some flash cards to see if he was
reading or had just memorized the names. We
found out he had about 75 words, some of them
very odd like goat. I don’t even know where
he had ever seen that word. He didn’t like
me reading to him when he was little, but he
LOVED the close captioning on the TV. I guess
that’s where he learned it all!"

Newspaper Article: Finding 'the keys to Matthew'

In 1998 a newspaper article was written by
Meredith Goad titled: Finding 'the keys to Matthew'
The article is based on an interview with Gary and
Kathy Schilmoeller and their son, Matthew, who has ACC.
He was 22 years old at the time of the interview.

Finding 'the Keys to Matthew'

The interview reveals surprising and interesting
information about Matthew and his abilities and also
explains how ACC affects him.

Recently I shared my thoughts with another

"I have come to realize that even in those
--what seems to be little or no progress times--they
are working hard and learning in their own way,
making connections and the results of all that
'silent' learning appear one day out of the blue
after what seemed like the longest dry spell.
Finally, a rainbow!"

Never Underestimate What a Child With ACC is
Capable of Learning:

Always keep the door open to what a child with ACC
can do and learn. I speak from my own experience
as the mom of a child who has ACC. He beat the
textbook odds and took his first steps at the age
of 7 years among many other things. He continues
to amaze me all the time. I am not alone in this

Parent of child with ACC
[who read a book at age 10 for the first time]

"I cried the first time Noah read for an hour by
himself. It sounded terrible to the normal mom
(he was very choppy), but to me it was beautiful."

This same parent also wrote:

"Now [at 11 years old] he is at a 3rd grade level
in 5th grade. He is still not very fluent. I
was told he may never read by his last teacher."

Parent of 16 year old child with ACC writes:

"My son William had a list of things (an entire
page long) we were told he "would never do." REALLY?
He was 3 years old when we received this list from
our "doctor". At 3, he spoke 5 words that were
understandable (mama, dada, jojo, baba, & more).
His speech was defined as "largely unintelligible
sentences" for *MANY* years. Meaning, we were
the only ones who truly understood him....that
was from age *3* to age ?? (sorry I lost track...
but it was a LONG time).

Well, let me tell you what a difference 13 years
of advocating for speech services can make...I
CANNOT keep him quiet now...he pretty much NEVER
shuts up (and I say that with TOTAL LOVE in my heart)
and he is *completely* *understandable*. He talks
"a mile a minute!" There is NO misunderstanding
him now!! He is even described by his teachers as
very polite and social. He has no problems with
his socialization skills.

Oh yeah one more thing, about that list we received
when William was 3 years old...I'm elated to say,
he does everything on that list and much more, with
ONE exception....he still cannot read, but he will
(I have Faith)...and as GOD is my witness, if it is
the *VERY* last thing we teach him...HE WILL READ."

What do you think? Please go ahead and add your
own comments.

1 comment:

  1. That was very beautiful Sandie. It reminded me of when Brianna started walking (I believe I shared the news with you as well as the list) and my husband called me at work and told me BRIANNA IS WALKING and I was in disbelief until I went home and saw it with my own eyes... and she hasnt stopped since :) You word everything so beautifully, thank you for all of your posts (which I am catching up on now).


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