Wednesday, May 19, 2010

Meet Patty - An Adult with ACC

Patty & her daughter

The process of telling Patty's story came about
through a series of e-mail conversations that
took some twists and turns along the way but
ultimately wound up revealing her character,
her personality, her sense of humor and helped to
give a better understanding of who Patty is.

In much the same way that Patty's story unfolded
before my own eyes, through a series of questions
and answers, is how you will see her story revealed.

Patty is an adult who has Agenesis of the Corpus
Callosum. But she is also a terrific lady, a
dedicated and passionate teacher, a loving mother
and wife, a Sunday school teacher and so much more.

I know I certainly enjoyed interacting with Patty
and getting to know her better and I hope that you
will too.

It is a privilege and pleasure to introduce Patty.
Here is Patty's story as it unfolded quite
unexpectedly and yet quite naturally in a style
that seemed to fit Patty perfectly.

I received an unexpected e-mail from Patty for the
first time in August of 2009:

*Note: ACC-C = complete Agenesis of the Corpus Callosum

"I am a 34 yr old married mom that has ACC-C.
It was discovered about two years ago. The
neurologist was not much help to me. I have
enlarged ventricles in my brain which I think
are a link to having ACC. I am not sure. I have
educated myself via the websites I have browsed.
My daughter has not been evaluated for any ACC
for herself. Yet she has issues that some kids
have that have ACC. Especially the social aspect
of school and crowds. I am really tired so I am
giong to finish this now. Good Night. Patty"

Many months passed with no further contact.

In May of this year I posted another adult's ACC
story on this blog and then invited any other
adults who have ACC to share their story.

On May 4, 2010 I received a second e-mail
from Patty:

*Note: I have interjected my questions/her answers
within the content of Patty's original e-mail to
help the conversation stay organized and flow more

"I think I have told you my story. I did not
find out I had ACC until after a car wreck. The
difference is that I was about 31 or 32 year old
before I found out that I have ACC-C. Many things
that don't make sense to me I chalk up to ACC-C.
Even around here I have been researching things
myself since I have been left in the lurch medically.

you said:

"Many things that don't make sense to me I chalk
up to ACC-C."

Can you explain this more and give examples?

"My thyroid hormone imbalances are something I
believe are not accurately measured when my brain
throws a wrong signal to my thyroid. I firmly
believe that my coordination as a child had a lot
to do with having ACC-C. I walked within the normal
range of time, and talked within the normal range
of time. I grew up with 6 brothers and 3 sisters,
so I think that I had some natural OT [occupational
therapy], PT [physical therapy] and ST [speech therapy]
built into my daily routine. (One of my brothers ,
child # 3, has some learning delays because of
having the cord wrapped around his neck at birth
(blue baby).) So, I think that by the time I came
around, being the youngest of the family, my siblings
were going to make sure I was going to be “normal.”
I did not learn how to swim or ride my bike at the
average age. The coordination of some sports
activities were very tough for me to conquer. I
learned how to do it a year or two past the normal
age kids. I was very clumsy as a kid with a lack
of coordination.

I had a huge head from birth until my body caught
up to it. It was not an ugly head but a large head.
There are pictures of me between growth spurts that
I look at now and think “wow, now that is a big melon.”

back to Patty's original e-mail:

"I am a state certified school teacher for WI.
Currently, I teach 4K ( the little guys). I enjoy
it very much. I have to admit that I think this is
the best age for me since I have discovered some new
limitations or rediscovered limitations I used to have
that are present again.

What is 4K (the little guys)? Is that Kindergarten
or 4 year olds in preschool?

"4K is a program was originally designed for
children who struggle with basics, (alphabet,
counting, colors, numbers, and SOCIAL SKILLS) to
have a jump start before kindergarten. It is what
kindergarten used to be 30+ years ago. What I did
as kindergarten student is what I teach my students
minus rest time."

back to Patty's original e-mail:

"It is amazing how when you are diagnosed with
something like ACC-C, a lot of your developmental
years can make more sense now in restropsect. I did
not do well in Math and Science, anything that dealt
with memorizing facts with numbers is not on my favs
list. I did enjoy band and choir class in middle
school and high school."

Since memorizing facts and numbers is difficult for
you, was/is there anything that you do to help you
memorize something more easily?

Can you list specific things that help you memorize?

"I don’t really have much of a short term memory most
times. I have to write down a lot of things in order
to remember dates, times, events, etc. If its not
written down somewhere, consider it not having a chance
to be remembered for long, unless it’s a randomly odd
placed bit of info that has stuck in my brain. I have
to be a creature of habit or I won’t remember where
some important papers or things are kept. If I don’t
tell myself “ I am putting such and such IMPORTANT
paper on top of the refrigerator,” then I may not
recall where I put it. Ie) My mom bought a Younkers
ticket for shopping last school year in November. I
knew she paid for it. I knew I had it. I did not make
a verbal statement to myself where I put it. I did
not find it until the following summer, when I was
searching for something else. It’s pretty sad but
that is one thing I do.

I read it once, read it again, and sometimes read
it a third time before information sinks in unless
I take notes on what I am reading. If I takes notes
my brain see it as a picture, then I can recall it
much faster. I see snapshot pictures of things or
notes in my head and I can recall it better than
just hearing it or reading it once."

back to Patty's original e-mail:

"I wish I could write more but time is ticking
away and I need to finish filling out some
kindergarten screening reports. Patty"


How did the doctors tell you that you have ACC
when you were diagnosed?

"I was diagnosed with ACC-C after an “abnormal”
EEG(’07), led to an immediate MRI (’07) . A
doctor saw it in ‘03 after a CT scan but chalked
it up to “nothing abnormal,” “nothing that can
be fixed, looks like it was inborn.”

Did the doctor in 2003, who saw that you were
missing your corpus callosum on your CT scan,
give you a specific diagnosis of ACC and then
simply dismiss it as "nothing abnormal"?

"No specific diagnosis, mumbled words with a
nothing abnormal ….. BULL!"

Did the EEG reveal seizure activity and what
kind of "abnormal" activity was revealed on
your EEG if you know?

"NO seizures…. (does a happy dance!) Abnormal was
the gaps due to the ACC from what they had told me.
Again sometimes looking through mud is clearer than
getting straight answers from doctors who are
clueless on ACC-C."

Did the doctors explain ACC to you?

"The neurologist did not know what to say besides
saying it was a Complete Agenesis of the Corpus
Callosum. My mom and I asked him several questions
but he had no experience with patients with this
diagnosis. He explained what he saw on the MRI images.
I had “texas long horn” ventricles in my head. It
was a little concerning to him because one end was
sooooo oversize while the other end went to a rounded
point. (hence the jargon Texas long horn). My optic
nerves showed damage but the damage did not lead
back past the optic region much. Since there was
no corpus callosum, the doctor was impressed to
see the parts of the brain that show without the
c.c. [corpus callosum] there. There was nothing
that he suggested as a treatment. “You seem to be
doing good otherwise neurologically. So I hope you
have a good life.” This was received to me as to say
“good luck, don’t let the door hit ya where the
good Lord split ya.” GRRR! Thanks!"

I asked Patty several questions in an attempt
to piece together why she needed to have an EEG
in 2007 and a CT scan in 2003.

Why did you have an EEG in 2007?

Was the EEG ordered after your car accident?

Were you ever referred to see an ophthalmologist
due to the optic nerve damage that was revealed
on the MRI in 2007?

Why did you have a CT scan in 2003?

"A doctor saw it in ‘03 after a CT scan but chalked
it up to “nothing abnormal,” “nothing that can be
fixed, looks like it was inborn.”" I was pregnant
with my daughter and had fallen down some steps and
bumped my head I think (can’t recall all details of
the day) The CT scan showed the ACC-C back then. I am
sure of it. But whatever doctor who reviewed my results
saw mine and concluded “ehh no biggie.“ So he literally
mumbled something about something being inborn but not
to worry because everything else looked fine. Can we
say drop kick the doctor and then say… “ehh he’ll be
fine once he catches up to Mars….“

OH YEAH! CT scan in ‘07, I was hit T bone style in an
intersection in the city near here. I was given a CT
scan then since I told me neck hurt. They said the
results of the CT scan was nothing alarming…..
(DUH! They saw the ACC-C, but nothing alarming)
BY THE WAY since this accident I have had the most
issues with brain related functions, thyroid, memory,
moods, etc.
I was having a routine eye exam with
an Opthamologist suggested by my regular family med
doctor because I was feeling like I was encountering
some optical migraines mixed with hypoglycemic episodes…..
(Talk about the wrong type of medical cocktail NOT to
have when driving…… I plunked my car in the ditch on
its side, as gracefully as a Buick Lesabre can tip
that is….. Meanwhile I am saying JESUS OHHH JESUS! )

So the ophthalmologist did his normal exam. I flunked
the field of vision test once and retested (guessing
on about 25% of flashes)passing the second or third
time. Also he discovered there was optic nerve damage
in each eye. I want to say my left was worse than my
right… He was a bit concerned because I was in my early
30s. So that optho ordered an MRI and BINGO…. WE HAVE
what is this? What? Agenesis of the corpus callosum….
Not much said to me EVEN THEN! “Let’s watch your optic
nerve damage and use this as a baseline.“ says the

Do you have a specific diagnosis involving your
optic nerves?

"N o diagnosis but the picture of my optic nerves
are forever as a picture in my brain seared there,
with the cupping and the gaps,, oh yeah! I see it!"

"The ophthalmologist saw the nerve damage but the
MRI showed it did not extend into the brain at a
dangerous point. He was “not concerned”."

"*******Since all this my awareness has been heightened
by my own research. If you don’t look out for yourself
who will? Doctors… cha… right… anyways

New doctors ordered new tests when I switched clinics
after still having hypoglycemic issues….. So the new
doctor orders an EEG to make sure I am not having
seizures and rule in that it is borderline hypoglycemic
so keep eating routinely…..WHAMO….. ALERT! ALERT !
why I ask “all it says was there is abnormal readings
on the results. Just please come in on a Saturday for
an MRI.” man that tracer stuff gets you cold …brrrr!
A few days later, I go in for my “results” of the MRI
with my mom,. Since my mom knows more developmental
questions than I do, I take her for answers if they
ask me any of those questions. Which explains the :
I was diagnosed with ACC-C after an “abnormal” EEG(’07),
led to an immediate MRI (’07) ."

you wrote:

"man that tracer stuff gets you cold...brrr!"

Can you please explain what you mean?

"At one point during the MRI they took me out of
the MRI tube and injected some "contrast" fluid
into a vein in my arm. IT made my hand very cold
and then the cold feeling ran up my arm. The
tracer helps to see the flow of fluid moving from
point A to point B. It was a small amount of
contrast but it left a metallic taste in my mouth
for a little bit of time."

Did you find out most of the information you know
about ACC from your own research on the internet
and from other people who have ACC or parents who
have a child with ACC?

"I found out most of my information by looking up
ACC on my own through research on the internet.
I found MRI images that looked identical to mine
from a medical website. I am sorry I can not recall
what site it was, I looked up information by using a
specific ACC-C search. It is simply nothing better
than feeling validated when you see someone else in
the world that has a brain that looks like yours.
Through my research I found out more correlations
to my optic nerve problems and thyroid issues."

Earlier in your May 4, 2010 e-mail you wrote:

"I have discovered some new limitations or
rediscovered limitations I used to have that
are present again."

What are some of the new and rediscovered

Can you explain them in more detail?

"Since my automobile accident March 7, 2007 and a
minor one in October 2007. I have discovered
limitations I have as an adult. I truly believe
that those minor bouts of disorientation have
short circuited my brain more than I would have
preferred. I say that because I have less
capability to process information as quick as I
did in college. I have to slow down when receiving
new information not ever learned before. My ability
to process information that adds to what is stored
in my long term memory is still doing okay.
(e.g. I recently took a 2 cr. [2 credit]-8 lesson
Spanish class for teachers. I finished it in 9 days
doing it after my house was quiet for the night. The
last time I took Spanish was in h.s. although I have
spoken minimal Spanish with my students). I have
less capability to handle stress, and process it
effectively, that used to roll off my back.

My hypothyroidism has put limitations on me as well.
Since the hypothalamus runs most effectively with a
functional corpus callosum, some months have turned
out to be a “crap shoot” for the lack of better terms.
I say this because I do not know if thyroid is going
to receive the meds properly or if its going to not
receive it because I did not follow every letter of
the law when taking the meds. Regardless I need more
sleep than most people, on average. I have to watch
my diet because food can affect absorption of the
thyroid meds. I need to keep moderately active, too
much is bad and too little is bad."

When were you diagnosed with hypothyroidism?

"1995. Holy cow it has been 15 years…. Yikes!
Spring of my first semester away at college
(2nd yr in college)."

Does hypothyroidism or thyroid disorders run
in your family?

"My maternal grandma had thyroid issues since my
hypothyroidism diagnosis, one of my sisters has
been on meds for it also for about 4 or 5 years

you wrote:

"Since my automobile accident March 7, 2007 and a minor
one in October 2007. I have discovered limitations I
have as an adult. I truly believe that those minor bouts
of disorientation have short circuited my brain more than
I would have preferred."

Can you explain and give more detail about the "minor
bouts of disorientation"?

"These bouts of disorientation had come more when my
thyroid hormone levels were off along with my sleep
pattern or eating patterns. If I am not a clockwork
kid with my life, then I can wreak havoc that trickles
into my sanity. Last summer, my thyroid TSH levels
were so whacked along with something else undiagnosed
that I had a terrible summer overall. We are talking
emotionally off, physically un-energized, and mentally
not being able to handle much stress, even the healthy
amounts of it.

Did the "disorientation" begin after the car accidents?

"Yes and No."

Do you still have "minor bouts of disorientation"?

"I don’t get it much any more. Although a few weeks ago
I had it and my chiropractor wants me to time it and
chart it on a calendar because it may have something to
do with hormonal changes so many days after menstruation.
Great thing to talk to a male Chiro. about right?!"

you wrote:

"I truly believe that those minor bouts of disorientation
have short circuited my brain..."

When you say that the disorientation has
"short circuited my brain", are you referring
to the loss of short term memory that you deal
with now?

"YES I am talking about my memory."

Did you at any time BEFORE the car accidents deal
with any short term memory loss or difficulty with
memory and remembering things?

"No. I did my college all before that and even having
kids before my short term memory loss started going.
If you can maintain memory in college and during
pregnancy and childbirth, then you are pretty good

Do you have any other medical conditions in addition
to having complete Agenesis of the Corpus Callosum
and hypothyroidism?

"I have no curve in my neck. But that gets adjusted
by a cute, sassy, younger than me, knowledgeable
chiropractor that has helped me more with my thyroid
problems more than my own med doctor in the past few

During our e-mail exchanges Patty revealed a few
additional things about herself that I will include
here for those of you reading her story.

Patty said:

"I can have random, unorganized thoughts, hence that
is why I answered the question right after it was
asked. So if you can piece everyting together that
I told you, it would be"

On the contrary, it is definitely the other way
around; I am impressed with Patty the person,
the teacher and the Mom amidst her challenges.
I am especially impressed with her kindness,
openness and I am thankful for the enlightening,
insightful and very valuable information that
Patty is willing to share with others.

Did you struggle with social skills as a child
in school?

"I did not struggle much with social skills. I knew
the social graces and proper manners to have when in
public. I have been “very emotional” since little on.
So, I have been easy put to tears over small things.
I was not a popular student. It probably was because
I was a sensitive child to getting my feelings hurt."

Do you struggle with any social skills or
socializing now as an adult?

"I am pretty social as an adult. As my husband says
“ you can make a good conversation with an ant.” I
avoid useless people, people who I have been kind to
or friendly to and they don’t give me the time of day.
Phooey on them. I am selective on how I socialize. I
have a select group of friends I like to hang with.
We don’t get to see each other much, so face book has
helped me connect with old friends and make new ones
through acquaintances."

Did you attend a mainstream classroom?

"I attended a mainstream classroom. I was a good
reader so I was in the above average reading group.
I did take years of summer school for math because
the drill and practice of math facts were painstaking
for me. It paid off when I went to a prep school for
h.s. [high school] and took for years of math. I only
did average in those classes but it was better than
taking remedial classes."

Did you receive Special Education Resource help?

"I did not qualify for SP.Ed. [Special Education]
Resource help. The more cerebral multi task problems
just took me longer to do but I completed them in the
given time."

Can you ride a bike and drive a car?

"I ride a bike and drive a stick shift car. I love
my car because I feel like I am back in college.
(The best part of my early adult life. Ahh the memories!)"

Did you attend college and get a degree? I assume
that you did attend a four year college and you
received a teaching degree."

"I attended the University of Wisconsin -Stout.
I received a Bachelor’s degree in Early Childhood
Education, in 1999. I taught one year at a day care
without having my license. I was hired from just
having my degree. I am in the process of renewing
my license a second time, every 5 years I must take
6 credits of classes. I have taken several classes
that relate to managing a classroom with a variety
of students, ELL [English Language Learners] and
special needs."

Is your daughter your only child?

"I have a daughter who will be 7 in June and a
son who is 5."

What do you enjoy doing the most in life...
what are you passionate about

"Personal: My deepest passion is that I use my
knowledge to make informed decision and to empower
other people with the information I can pass along
to them. I want to learn as much as I can about
ACC-C from educated neurologists. So I put the
puzzle pieces that are still missing into my life
with solid answers."

"Career: I am most passionate about having my
students have my classroom as the best environment
for learning to happen. I want to be as fluent as
I can in Spanish to communicate effectively with
families of my students."

It is very evident to me that Patty is a dedicated
teacher who cares about helping her students learn
and I have seen her passion for teaching and helping
kids/students take place before my own eyes.

Patty belongs to one of the same ACC online e-mail
support groups that I belong to. In fact, just
recently Patty reached out to the parent of a young
child who has Agenesis of the Corpus Callosum who
was asking for help with her child's learning needs
and challenges. Patty gave advice to the parent and
offered specific, detailed teaching methods and ideas
to try. Along with Patty's specific reply to the parent
she also included this information:

"If you stimulate the different hemispheres of the
brain with crawling activities and stretching across
the body activities, the brain will begin to be

Even with having a ACC-C myself. I have found that
these midline crossing activities help my cognition
to engage better that day, and I am the teacher!

Look into a local S.M.A.R.T. training program near you.
The program is for struggling students in the early years.
The program is very hands on and was designed by some
people who had children with special needs. It combines,
OT and PT and ST mixed in. The activities themselves are
between 2-5 minutes each."

S.M.A.R.T. stands for:

Stimulating Maturity through Accelerated Readiness

SMART is a multisensory program.

Many kids who have Agenesis of the Corpus Callosum
have benefited from using a multisensory teaching
approach. The midline crossing exercises that are
incorporated into S.M.A.R.T are an added bonus for
someone who has ACC.

The S.M.A.R.T program is being implemented into
some schools in pre-kindergarten, kindergarten and
in some first and second grade classrooms and seems
to be a big hit with the students and staff.

Because I have a child who has Agenesis of the Corpus
Callosum, I was curious to learn more about S.M.A.R.T.

I asked Patty:

Do you know of a specific website for S.M.A.R.T.?

"I have my resources at school. go figure. SO I
would have to look the website information when
I get back to school. I can check on Monday.
I know there is a 4 day training seminar that all
"moderators" (and teachers too) are supposed to
take to be accurately trained. I am doing the
budget version and having my sister train me
(until my district would pay all or part of my
way of course.) My sister is the moderator for
her school. So she does the activities with all
kindergarten, all first grade and some second grade
students. She had them on a weekly scheduled time
just as gym or art would be scheduled. The reading
and math scores have greatly improved in one years
time from the impletation of this program. She has
several of the large motor activities done in her
classroom. In addition, each of the dedicated
teachers do more activities in their daily routines
such as I do. The only class that did not show
improvement with measurable success was from a
teacher, who had students in a half day program.
She was "too busy" to be consistent and take time
to do the activities. I heard that and knew I
could make it work in my half day program.

I will send you an email containing exact details
off the materials that I have at school. I should
have time to grab the books on Monday... if I
remember.... ha! I crack myself up! Note to self:
bring SMART books home! I know the creators of this
program set out to help their own child with special
needs. It worked for them so they wanted to share it
with others!"

I love that Patty is able to make a joke about her
difficulty with short-term memory loss and can laugh
at herself.

In my own research I found the following information
about S.M.A.R.T. and will share it here for anyone who,
like me, may be curious and interested:

Check out a school in Wisconsin where a teacher uses the
S.M.A.R.T. program with the PreK students in her class.

The teacher, Miss Beth, wrote:

"The S.M.A.R.T. curriculum is designed to help each
student progress at her or his own rate and to enrich
and enhance the student's abilities in a positive and
"play-like" atmosphere."

Have a detailed look at S.M.A.R.T. in the News


A S.M.A.R.T. new program at Jefferson

Minnesota Learning Resource Center-S.M.A.R.T. Info.

S.M.A.R.T. News-April/May 2008

S.M.A.R.T. Newsletter Archives and E-Mail Sign Up

S.M.A.R.T. Online Resources

I asked Patty:

Do you do midline activities with the students
in your classroom?

"I do midline activities every day. I have received
many compliments from parents that they have new
children with their profound improvement of skills.
I have not done a ton of "academics" I do a ton of
"train the brain" activities. It may look like we
don't do much to the untrained professional. Yet by
golly I have a class of students, where 95% of them
are ready for Kindergarten. Hallelujah!"

"I do the "hulk stretch" where we reach up and grab
something, with both hands, big from the sky on the
left and carry "it" over to the right side with our
arms going from extended up to lowered down and SMASH
the thing across our knees. My 4 year olds of course
have to show me a good "grrr" muscle pose before it
as a added humorous body building move! Hulk-smash...
get it! Then we do the crossover "smashing about five
times on each knee, alternating left/right/ left right/

alligator crawl - picture not Patty's class

"We do the alligator crawl where their belly must
stay on the floor but they have to crawl with
their bottoms down also, Their knees alternate
as if to crawl, left arm up right knee up, right
arm up left knee up. Their bottoms must be down
at all times and their arms can not carry them
they must bring their knees up in te correct
pattern. I had 3 to 4 kids who could not do it
in October that are able to do it more successfully
now. THey do not do it 100 % all the time but their
success is up from 0% correct body patterns to about
75% of the path is done correctly. My path for this
is about 10 - 15 feet long. I moved tables and chairs
away from a part of the room."

"I do the bear crawl where their hands and feet
do the crawling pattern with their bottom in the
air....I had a few kids tip over from having their
legs go faster than their hands...The length of
the path is the same as the gator crawl.

I do a flamingo stand with one foot in the air at
a time, counting to 5 at first, then building to a
count of 10. Also I do a heel tap where the child
stands up and taps the right heel with the left
hand both in front of the body for x amount of
times and then behind the body for x amount of

sensory crawl - picture is not Patty's class

"There is a sensory crawl where pictures of objects
are in clear pockets taped to the floor. The child
names the object and taps the picture. then he
crawls to the next picture on the floor and does
the same. use 10 pictures of objects at least.

Hook board- little mug hooks are on a post and a
child puts varying size washers on the hooks all
with one hand and then uses the other hand to take
all the washers off. start with bigger washers
and then move to smaller washers.

Wipe off boards- Make simple maze patterns and
have the child follow the right path with their
finger first. Another activitiy is drawing letters
or lines on the wipe off board and have the child
erase the lines using their pointer finger.

Use small tongs (without the sliding ring- it
pinches fingers) and have kids pick up pon poms
from small bins, putting them from one bin to
another bin.

Do the same with eye brow tweezers and small
pon poms or beads. Boy do they really have to
concentrate on that! I love their little tongues
sticking out trying to focus on a steady hand."

spin in circles - picture is not Patty's class

"Spin in circles counting to ten. or get a
"sit and spin" and let it rip (counting to 10)!
Then reverse the direction they are spinning.
I had horrible problems with one girl's need
to spin before I was told by my sister
(trained in SMART) " let her do it"
"do it daily" we did it daily for 4 weeks.
She was a new child! She sat still better
and had better focus after we spun! Spinning
builds the core muscles in their belly needed
to sit better on chairs.
I could on and on....."

She could go on and on and I could listen to
her with great interest.

In closing, during our ending e-mail exchange,
Patty shared some information with me about
herself that I believe is valuable and should be
shared here:

In actuality, thinking of all these specific questions
has worn me out a bit mentally. I need to recoperate and
get my gears switched to more college classes within the
next week. I have a three credit class starting soon. I
have not taken a 3 credit class in 5 years. So with my
preparation for a church youth rally, 4K graduation,
spring concert, end of the year picnic, my college class,
and being a Sunday school teacher, my next month is going
to be out of control buzy. I pray my brain keeps up so it
doesn't short circuit and make me an emotional basket case.
My limitations are very apparent with needing sleep
having hypothyroidism, food to keep me from becoming
hypoglycemic, and personal time so my brain can process
and organize the day's events- overstimulation can make
my brain hemispheres feel further apart. (my speech gets
garbled, my mental fog becomes as bad as pea soup, and
my emotions become a roller coaster ride)
God Bless, Patty"

As a mom myself of a child who has Agenesis of the
Corpus Callosum, I am highly interested in what Patty
has to say from both the perspective of an adult, who
has ACC, and as a teacher.

Thank you very much, Patty, for your willingness
to openly share your story, for taking the time to
answer my questions and also for sharing some of
the S.M.A.R.T. multisensory and midline crossing
exercises that you do daily with the students in
your classroom.

I thoroughly enjoyed meeting Patty and having the
pleasure of getting to know her better and I hope
that you have as well.

Won't you take a minute to let Patty know what
you think by leaving a comment for her.

Want to share your story?
Invitation for Adults with ACC


  1. Thank you so much for sharing your perspective! I am homeschooling my 7yo DD who has enlarged ventricles (about 3x normal) and hypoplasia of the CC. This will help me (and her)!

  2. Hope thank you so much for sharing Pattys story here and Patty THANK YOU for being open to sharing your story with Hope and thereby to all of us who enjoy Hopes blog. My grandson is 20 mos old with c-acc and "comma shaped" ventricles that I can now picture as TX longhorns LOL. I'm especially interested in the SMART program that you mentioned and will see if Joels therapists have heard of or use it. Again thanks so much for your open natured conversation with Hope and I hope we hear more from you on her blog.

    Trecia Grandma to Joel David 20 mos c-acc

  3. Hello Patty! Thank you so much for sharing your story with us. My name is Samantha, and I also live in Wisconsin. My daughter Nicole is going to be 3 in June and was diagnosed with C-ACC in September of 2009. Nicole is non-verbal at the moment, but is really trying to get some words out! She also has the enlarged ventricles. A lot of her issues with C-ACC seem to have physical side effects. The muscles in her legs are super tight so she goes through a lot of PT to loosen them up. I would love to hear more about the SMART program and am excited to finally find someone else in Wisconsin dealing with C-ACC!

    Samantha, Mom to Nicole, 3, C-ACC, Colpocephaly, and Epilepsy

  4. Thank you very much to Carrie, Trecia and Samantha from Patty for posting your very nice comments.

    Trecia, Thank you for your nice note. It was my pleasure and also a privilege to be able to put Patty's story here on the blog for others to read. The thanks definitely belongs to Patty. Like you Trecia, I also hope to hear more from Patty and quite honestly I thought that same thought while I was writing my ending words on her story. Patty has an open invitation to come back and share here anytime and I welcome her input wholeheartedly.

    Samantha, this comment is from Patty to you:

    "I would like to be available for correspondence (setting myself up to be busier than I can handle) for Samantha this summer if she wants. I can pretty much say I will be busy through June and most of July. I can correspond with her before that if she wants nuggets of information from me. I am excited to know that there is more people with this in Wisconsin." Patty


    I don't have an e-mail contact for you so if you read this it would be great if you could please e-mail me (Sandie):

    Thank you.

  5. I received an e-mail from Barbara, the mom of a little boy who has ACC in Italy. With her permission I am quoting her note here:

    "you know what, I've just started transleted patty's story into italian, to make her story known also through our italian forum.

    bye we say "ciao" in italian

    Thank you very much Barbara for taking the time to translate Patty's story from English to Italian and for all your hard work so that other people in the ACC Italian forum can read what Patty has to share. It is so nice of you.


  6. Thank you so much for taking the time to interview and be interviewed. My son, Jesse, has P-ACC. Right now he whispers for everything except when he reads or uses word cards in school he will use voice. I am eager to check out the S.M.A.R.T. program! Jesse works with a ST, OT, and psychologist. I intend to copy the exercises and introduce them to Jesse's teacher. Thanks so much!

  7. Big wow!

    Patty: loved reading your story - the good, the bad and the ugly.

    I like the SMART pictures very much, and how you describe the activities.

    It's great to meet you on the Agenesis of the Corpus Callosum website.

    (Weren't you also on BrainTalk too?)

  8. Lariann and Adelaide Dupont,

    Thank you from Patty for taking the time
    to leave such nice comments.

    To: Adelaide Dupont,
    From: Sandie

    Yes, I also posted a link to Patty's Story
    on the BrainTalk board in the ACC forum for
    others to read.


  9. Thanks so much for all of the wonderful info you have shared! I have been teaching Pre-K for 5 years and am getting my masters in special needs. Through some professional development classes I learned about activities that pertain to 'crossing the mid-line.' I was very interested in this concept and how it enhances the brain's function.

    Coincidentally, my only nephew, was very recently diagnosed with ACC, around his 1st birthday. Unfortunately, they live 9 hours away. I have been struggling and researching, wishing I could help and understand better. Which I am sure is nothing compared to the struggles of parents upon hearing this diagnosis!

    Thank you so much for your story. I can't wait to look into SMART and integrate more of these activities in my classroom, and pass the info along to my brother.

  10. Thank you for sharing your story. I have a 20 year old son with ACC. Unfortunately, 20 years old there wasn't much information out things were limited. Now for him as young adult and still seems to be an adolescent. I've read that these years last a long time for kids with ACC. Can you shed light on that? His money management is not where it should be. Any info you have such as programs. There is limited resources on East Coast and because he did not Graduate from here I had one door shut after another. Its gets frustrating.


I am very interested in reading your comments and
look forward to hearing from you. Thank you.