Believe...





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

milestones.



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.



UNIQUE WAYS OF LEARNING - Amazing

Examples:




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

parents.



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

parent:




"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

revelation.



Parent of child with ACC

[who read a book at age 10 for the first time]

writes:




"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.