A Mom's Perspective...

Some of you may remember reading Lynnea's story,
an adult who has Agenesis of the Corpus Callosum.

In the past I had contact through a few e-mail
exchanges with Lynnea's mom, Karen. It wasn't
until after I had finished the ACC Reading and
Comprehension document that I thought about
asking Lynnea's mom, Karen, who is a retired
special education teacher if she would like to
contribute information about her daughter, Lynnea
and reading from the perspective of both a Mom
and a Teacher.

Well, I was surprised when I received a story from
Karen about her daughter, ACC, reading and a whole
lot more.

I thought it fitting to share Karen's entire story
here with all of you...

Karen writes:


"My daughter is a word person and has been from the
get go. At the age of four months, I was telling her
repeatedly, “I love you, I love you” and she plainly
and distinctly articulated back to me “I uhh ooh.”
I was beside myself that she could at such a young
age repeat the correct vowel sounds of these words
in sequence back to me, and was certain that no other
child had ever accomplished this. I thought she must
be a genius. Needless to say she actually did begin
to talk early. On the other hand, I was quite disturbed
because other kids her age were walking and she was
not. She was quite late at taking her first steps.
Forgive me for digressing, but it was about this time
that I began to realize that there was something not
normal about my beautiful baby girl. Doctors assured
me that there was nothing to be concerned about and
treated this 34 year old woman as an anxious,
inexperienced mother, and even though my husband had
raised three other children, he was ignored, as well.
We just decided to go on and make the best of things.
There were a few other markers of disability, but she
just seemed so advanced in other areas we hoped that
everything that was late or not right would catch up
and right itself.

From the beginning, I was reading to my daughter on
a daily basis. We started with nursery rhymes and
fairy tales, of which I quickly tired. By the time
she was old enough to remember her early experiences
of being read to by a parent, I had moved on to
children’s Bible stories and by age three her bedtime
stories were “The Hobbit” and “Lord of the Rings”
Trilogy, then the Narnia books. We enjoyed this time
together, while her father was working a late shift,
and then he would be with her during the daytime while
I was at school. Her dad was a music lover and played
music and sang to her and with her daily. By the age
of five she was in ballet, gymnastics and jazz class.
She was successful in ballet and jazz, but gymnastics
was a major challenge. Shortly thereafter she began
taking piano lessons and then went on to play baritone,
tuba and percussion in school band and marching band.
While the thought is really fresh in my mind, I believe
that this early introduction to and instruction in music
was building alternate neural pathways in her brain.
There is a page on her ACCAA site that discusses the
importance of music for children with ACC. She still sings
and is a music lover of all genres.

At about age three Lynnea began using an Apple IIe
computer and some computer disk games for early
learning in math and reading that I brought home
from school on weekends and breaks. She loved the
computer from first sight. Upon entering school,
she knew the alphabet and recognized a variety of
words by site, but we had not pushed her to learn
to read or write other than her name, phone number
and address. She drew some interesting, pictures
when doodling, but has no artistic talent. Her
writing (fine motor) skills have always been weak,
but have improved somewhat as she has matured. She
never learned to tie shoes the usual way; I had to
teach her to tie her shoes the “bunny ear” style
used with special needs children. She also has
problems with some gross motor skills. She has
never learned to ride a bicycle either, even though
three or four people in the neighborhood tried their
best to teach her.

As she progressed through primary school, it did
not take long to learn that the education thing
was not her cup of tea. About the time she was
supposed to be learning cursive writing, we became
very upset that her teacher was not communicating
her difficulties to us properly and was not making
a genuine effort to help Lynnea be successful. At
this time after several conferences, we decided to
transfer her to a different elementary school. She
went to a summer school program to try to catch up
and then as the following year was coming to an end,
the teacher was suggesting that Lynnea might benefit
from repeating third grade even though her grades
were not failing. She was behind in reading and
math. We requested that she be tested for learning
disabilities. The school refused saying that she
was just behind and would not qualify and that there
was no point in putting her through the battery of
tests required to meet eligibility for special
education, not to mention the fact that if she did
qualify, we would not want to put our child in a
classroom with the “type” of children that were
in those classes. End of conversation. We refused
to allow her to be held back and decided that we
would work with her all summer to try to get her
up to level. Reading was not a huge problem.
Lynnea did have some trouble with phonics, and her
comprehension seemed to be a bigger problem when
she became anxious. She could easily tell you what
a story was about, but had some difficulty in
answering direct questions. Math seemed to be her
biggest problem, especially when it came to learning
the multiplication table. Spelling was also a problem
for her. Math and spelling became battles and points
of dissention between child and parent, along with
missing homework and crumpled papers stuffed into
her bookbag.

By this time I wanted to see an IQ score for
Lynnea and since the school refused to test her
for learning disabilities the only way I could
think of to get what I wanted was to refer her
for the gifted program. Lynnea had a vocabulary
of a much older child and was an entrepreneur,
having started a number of successful schemes to
invent things to sell and make money in our
neighborhood. Needless to say, the folks paid for
these somewhat useless objects, mainly because they
thought she was so cute. The gifted teacher’s
instruments of testing were not, in my opinion,
as reliable as those used by the special needs
instructors, but it would give me something to work
with. Low and behold, she had an IQ score of 127
or so, and along with other evaluations used, she
qualified to be placed in the gifted program, during
her fourth grade year. She remained in this program
throughout her middle schools years, and chose to
drop out near the end of the eighth grade. During
middle school Lynnea, had some excellent teachers
who taught her how to spell and read phonetically,
and she took a special class to learn the
multiplication table. She did reasonably well in
middle school, but continued to be an average student,
with serious organization skills deficits. She had
been using a computer since before the age of three,
but I taught her keyboarding when she was in my sixth
grade computer keyboarding class. She caught on quickly
and was soon typing faster than me. I encouraged her
to type papers rather than write from this point
forward.

She did well in independent studies and literature.
She became interested in reading Shakespeare in
middle school. By the time she was actually studying
Shakespeare in high school she was the only one in the
class who actually had any comprehension on his works
and was tutoring “A” students. However, up until this
time she did not seem the least interested in reading
novels.

Lynnea is a very social person, but does have some
difficulty in recognizing some social cues, however
she is a very good judge of character. I think this
ability to understand character has helped her in
reading comprehension. She is able to identify with
characters in a story. Lynnea also happens to be very
witty and I think that understanding humor is a skill
that also relates to good comprehension. She loves
puns and plays on words. She has a poster of her
famous “speak-o’s.” She even sometimes invents words.
The ability to recognize that words can be fun helps
with comprehension skills. I have noticed that kids,
who do not understand humor, also do not have good
reading comprehension skills. Her dad was very witty
and taught her to love humor.

My late husband (Lynnea’s father/Max) spent about
4-5 years working with mentally handicapped individuals
in a residential facility, so both of us had experience
in working with those who have difficulty learning.
One of the things I specifically recall him working
with Lynnea on was locating objects. He would tell
her to get something and bring it to him and she would
look everywhere, and could not seem to focus on the one
object he requested. He would patiently work with her
on identifying the object in her mind until she was able
to picture it then go and lay her hands on it. Soon
she was bringing him the video tape he left laying
somewhere, and unfortunately, his cigarettes. He also
worked tirelessly with her on a physical problem she
had where one foot would turn in. I am sure there are
many other things he did to help her but these two
stand out in my mind more specifically.

Lynnea’s father died of leukemia when she was fifteen
years old. Her school work in the second half of her
freshman year and her sophomore year took a nose dive,
as her father’s illness progressed and grief took its
toll. She had failed three subjects, but had developed
a friendship with a boy about her age who was being
home schooled. During the summer, she approached me
about her desire to be home schooled. The boy had told
her that he was being educated using the A Beka Home
School Program. We went to a local conference that
introduced the program to interested parents and students
and decided we would give it a try. Up to this point
Lynnea hated school and felt that she had been bullied
and mistreated because she was different. I felt that
many of her teachers and staff in high school had been
less than understanding and even blatantly harsh toward
her during her period of grief.

Lynnea shortly became a different person as she began
to get into watching the videos/dvds and doing the
lessons provided in this program. Suddenly, she was
learning and enjoying it for the first time ever.
A Beka was the answer we had been looking for to make
school what it should be. Lynnea was successful, but
decided to re-enroll the second semester of her senior
year so she could graduate with her class. She did
this and then took a year off, before deciding that
she wanted to go to a small Christian college in Ohio.
Our family had always participated in a local church
and practiced our beliefs in the home. Lynnea is a
devout Christian.

Somewhere between the second semester of her senior
year and her first year of college, she took and passed
two driver education classes, got her permit and license,
and wrecked two cars. I was concerned for her safety
and the safety of others. She also had been suffering
from severe migraine headaches for some years. I
decided that she needed to be checked out by a
neurologist, to see if there was anything that could
be done for her to help her with driving and headaches.
He determined that she had some reflex anomaly and
ordered an MRI on her brain.

She was 20 years old when the doctor informed us that
she has no corpus callosum, which according to Kentucky
SE eligibility laws is an Other Health Impairment, not
a Specific Learning Disability. Even though I was a
trained special education teacher (I taught computers
for 12 years) I had never worked with or even seen or
heard of a child who had this diagnosis. Her doctor
immediately worked with us to have a psycho-educational
evaluation performed, so we could determine what learning
issues she had and what recommendations could be made
so she could receive accommodations and modifications
in her college education program. We also made an
effort to get her father’s social security survivor
benefit reinstated, but the SSA denied her benefits for
this as well as for SSI, saying that she could get a
job as a Wal-mart greeter, therefore they could not
justify giving her any benefits, even though a part
of her brain is missing and she is forbidden, by her
physician, to drive a car.

Her biggest difficulties in her college career revolved
around taking tests. She does not do well on certain
kinds of tests. Fortunately, her professors were often
willing to provide needed accommodations including
alternate methods of determining her knowledge of the
subject, such as oral tests, research papers, and essay
type questions, etc. It turns out that she was very
successful in writing papers. She has become an avid
reader, reading all of the Harry Potter series and all
of Jane Austen’s books, as well as countless other books.
Her next greatest difficulty in college was in passing
a required math class. She had to take the class three
times. On the recommendation of her physician she was
not allowed to work while attending college, have a
roommate, or take more than 12-15 credit hours for
semester. It took her five years to get the required
courses to graduate.

While in college she has started her own web-based
organization called Agenesis of the Corpus Callosum
Awareness Association, LLC (ACCAA) to promote
awareness of ACC and provide support for individuals
and families who have to deal with corpus callosum
disorders. She also is the founder of another
organization to help young teen women who deal with
self-esteem issues that lead to other dysfunctions.

Lynnea, like most college students is in debt for her
education, but she had a double major in youth ministry
and in Bible (Theology) and has just received her
Bachelor of Arts degree. She desires a job in Youth
Ministry. She still has challenges to deal with, and
one of the major ones beyond the no driving issue is
being alone as she often gets lost easily, even in
Walmart.

In conclusion, reading comprehension skills are not
a significant problem for Lynnea. She still continues
to use some learning aids to help her remember content.
She loves books and is an avid reader.

I give credit to the Holy God who created us for
guiding us to do the right things for Lynnea many
times when we were unsure of just what was the right
thing to do, and for giving her to us, when we had
the skills and interests to deal with the challenges
of her ACC disorder even though we were unaware of
just exactly what it was for all her formative years.
Our faith and positive attitude, which is a manifestation
of true faith, has been as important to Lynnea’s success
as music, or special education training/experience or
anything else."



You can share your thoughts with Karen by leaving
her a comment. Or feel free to send me an E-mail and
I will be sure that Karen, Lynnea's Mom, receives it.

If you are the parent of a young child or grown child
who has agenesis of the corpus callosum or a corpus
callosum disorder and want to tell your own story and
perspective please contact me.

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
easily.

"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"

ADDITIONAL QUESTIONS AND PATTY'S ANSWERS:

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?

"Clarification:
"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
A WINNER….. YOU HAVE WON THE PRIZE OF…… oh my lands…
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
Opthalmalagist.

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 !
After the EEG “PLEASE COME IN TOMORROW FOR AN MRI.”
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
limitations?

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
too"

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
right???!!"

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
years."

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 impressive.lol"

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
stimulated.

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
Training.

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

and

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/
etc....."

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
times."

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

Reading and Comprehension

The most common question that teachers ask
is:

HOW DO I TEACH A CHILD WHO HAS ACC?

Kids who have Agenesis of the Corpus Callosum
do not fit neatly into one category.

Agenesis of the Corpus Callosum has a very broad
range of how it can affect a person.

Each person who is diagnosed with ACC can be
affected differently.

You may not know that a child has ACC because
they may appear to be high functioning and do
very well with some mild to moderate learning
disabilities.

Another child who has ACC may be severely
affected and developmentally delayed in many
areas as well as mentally challenged.

Other kids who have ACC can fall anywhere in
between the two aforementioned scenarios.

Some kids and adults are diagnosed quite by
accident when they have an MRI for a head injury
or severe migraines, etc.

Some adults who have ACC often went undiagnosed,
possibly struggling through school as a child,
sometimes being either misdiagnosed or labeled
with other conditions before they finally
received the diagnosis of ACC in their late teens,
twenties, thirties, forties, fifties and older.

MRI of normal corpus callosum outlined in red


The corpus callosum is the largest commissural
pathway in the brain consisting of over 200 million
nerve fibers and allows for communication between
the two hemispheres of the brain.

Agenesis of the Corpus Callosum is a congenital
defect. A child who has ACC (or a corpus callosum
disorder) is born with it. Agenesis = missing or
absent. Therefore, a child who has ACC is
completely missing their corpus callosum.

MRI of missing corpus callosum


ACC is a neurological condition.

The diagnosis of Agenesis of the Corpus Callosum
is made through the use of a CT scan or MRI with
an MRI being the preferred method for imaging as
an MRI is able to detect other brain anomalies
that may be present in addition to ACC. It is
possible to detect ACC while a baby is in utero
via a detailed ultrasound or fetal MRI.

Due to the broad range of effects of ACC there
are no set guidelines for what to expect when a
child has ACC or for how to teach a child who
has ACC.

In her document titled "Educational
Suggestions For Children With ACC: A Beginning",
Kathryn Schilmoeller, Ph.D. wrote:

"...I would urge all teachers and therapists
working with children with ACC to be diligent
observers of the child's learning patterns. Let
the child be the guide to what works and what
does not work."

This ACC Reading and Comprehension document is
created with the help and input from many parents
who have a child with Agenesis of the Corpus
Callosum or a corpus callosum disorder. There is
also input from some adults who have ACC.

It is not meant or intended to be a guide for
kids who have ACC.

This document is written to hopefully offer a
beginning place to create awareness and provide
insight into many different kids who have ACC and
their particular experiences with reading and
comprehension.

There are still many more personal stories to be
told about Reading and Comprehension for kids and
adults who have Agenesis of the Corpus Callosum.
I always welcome any and all additional input.

Let's start with the alphabet because the ABCs are
where a child begins to learn how to read.



"The ABC's of ACC" is offered as a quick reference
of key things seen in SOME kids who have ACC.

Patience IS a virtue and it is incredibly
important for others to offer and extend
patience to the child who has ACC.

An adult who has ACC, who is in her
last year of college, shared her feelings
pertaining to the importance of patience...

"The best thing for me was the patience that
some of those that have worked with me showed
me. When someone gets annoyed with the fact
that I'm not getting something, I get
frustrated with myself and then nothing gets
accomplished."



"Every student can learn, just not on the same day,
or the same way."
-- George Evans



You're Learning To Read
Song by Cathy Bollinger on her Tunes That Teach CD

Read an article written by music therapist, Cathy
Bollinger titled:

Using Music to Teach Early Reading Skills

Many kids who have Agenesis of the Corpus Callosum
learn to read. It may come easily for some and it
may be a struggle for others.

Kids typically learn to read using a variety of
methods. Some of those teaching methods include:

• Phonics
• Phonemic Awareness
• Decoding
• Whole language
• Sight words

Phonics: a method of teaching reading using
letter sounds and blended letter sounds.

Phonemic Awareness: the ability to hear and
manipulate sounds in spoken language. Phonemes are
individual sounds in words.

Example: /c/ /a/ /t/

A child who has phonemic awareness will hear each
sound and can put the sounds together to say cat.
A child who understands phonemic awareness is
also able to manipulate and change the letters/sounds
to make other words.

Examples:

replace the /c/ in cat to /b/ and it becomes bat.

replace the /t/ in cat with /r/ and it becomes car.

Decoding: breaking up a word into understandable parts
using sounds, phonics rules, chunks of words and their
phonics pattern sounds.

Whole Language: Merriam Webster dictionary definition:
"a method of teaching reading and writing that
emphasizes learning whole words and phrases by
encountering them in meaningful contexts rather
than by phonics exercises"

Sight Words: a group of common words frequently
used that readers should know on sight. A few
examples: a, is, of, the, and, that, in, you, I, to.

The Mom of a child with partial ACC made the
following statement:

"It can be VERY hard for educators to understand
the way our kids learn, as it's so unusual."

Let's explore in depth what many parents who
have a child with ACC and others have to say
about reading and comprehension:



Parent of 5-year-old child with partial ACC +
colpocephaly, chiari 1, sensory integration
disorder (SID), strabismus and hydrocephalus
(diagnosed with partial ACC at age 5 1/2 months)
writes:

"Molly is just in the beginning stages of reading.
Yes, she is doing much better than I expected in
KG [Kindergarten] including reading her word wall
words. At the end of the first semester, she can
read 21 of 25 words and she knows 19 of the 21
letter sounds (as stated on her recent report card)
and math is a strength for her. She has started to
try and read in books and does try to sound out
each letter for the word before trying to say it.
She has many times used the last sound as the
beginning sound of a word. She does demonstrate
that print makes sense and comprehension of stories
but has trouble with comprehension of individual
words. She has trouble with rhyming words and word
families. She is still working on being able
to recall characters in a story and retell the
beginning of a story. We will read the same book
over and over and over again and she will have
it memorized. She does get excited on trying to
find her word wall words in books we are reading.
So on books she is reading not sure if it is by
memorization after being read to for multiple
times or if she is actually reading the words.
She can read a word on one page, with help and
then when it repeats on the next page she has
already forgot and we have to show her again.


She is definitely harder to figure out what kind
of reader she is compared to my other children.
She appears to be whole language but then she
tries to use sounds of letters to figure out what
a word says."

The parent went on to write:

"3 of my kids were reading at age 4, my oldest son
had no interest to read earlier than Kindergarten,
but they were able to catch on phonetically with
reading once they knew their letter sounds and
combining the sounds together to make a word.
Molly doesn’t get that you combine the letter sounds
together to make a word. She will sound out each
letter with the sound, typically getting them right,
but doesn’t get the concept of combining the sounds
together to make the word. I am still trying to
figure out what works for Molly so we can teach
her to read and enjoy it. I knew early on Molly
would struggle with reading, so it was not difficult
to compare as far as ability with her siblings,
who all read 2-3 grade levels above while in
Kindergarten."

The parent shares heartfelt words:

"What is great and I believe has been Molly’s
biggest help in all areas of development including
reading, is her siblings. They take turns reading
with her at night and then they talk about the story
and what if questions. Such as what if she jumped
instead of skipped? Helping her talk about her day
and making it an adventure. I have to say I am very
blessed with my older children with their empathy,
compassion, wanting to help Molly be the best she
can be but also understands it takes her longer to
get something, and just encouraging telling her she
can do it. Molly is the one who does the hard work
but it helps having her siblings being her cheerleader
and helping her along the way."

This recipe of family support and love combined
with the help, patience and encouragement from
the child's teacher and educational system is a
winning mixture that is bound to produce positive
results.

OBSERVATION: Rhyming Words Difficulty

"She has trouble with rhyming words and word
families."

In what way does she have trouble with rhyming
words?

"She does not get when we give her a list of words
to pick out the one that rhymes, she will either
pick the one with the same beginning sound or letter
or pick a word at random that she knows. If we give
her the word bat; a list of words such as cat, ball,
dog, hand-she will pick ball because bat and ball go
together."

The Big Pig Song - Hooked on Phonics


OBSERVATION: Recognize a Word on One Page -
Not Know It On the Next Page

"She can read a word on one page, with help and
then when it repeats on the next page she has
already forgot and we have to show her again."

On April 26, 2010 this same parent shared some
additional news:

Toobaloo



"I have to say this is the best invention ever.
I had never heard about this before today when
Molly's teacher showed me. They use this for
when Molly has reading group daily, to block out
the noises from the other kids in her reading group,
gives her the ability to hear herself while she is
reading. Her teacher actually gave me one to use at
home to see if it would help. She read a book called
I like pets. I was so amazed to see her reading.

I looked it up online to see what it was, thinking
it was part of a building block toy, and found to my
astonishment it is used in speech and reading. I'm
not sure if anyone here has heard of these, since
I know I haven't, and wanted to pass it along to my
extended family. They are lightweight plastic and
cost around $4.00 at Amazon. We have the
purple/orange one."



"Here is a link to read more about it:
http://sayitright.org/6-toobaloo.html

Her teacher said she was reading at beginning
1st grade level-huge improvement since they gave her
this to use. I am so blessed that Molly has the best
teacher and thinks outside the box. I am amazed at
how far she has come from just the beginning of the
school year. Hope this will help some of your children
the way it has with Molly."

Note: girl in photograph above is not Molly.

The news about the Toobaloo discovery was
shared in an ACC online support group and
it sparked additional input by other parents
(a couple parents are also teachers). It was
suggested by several others that you can make
a homemade version of this "ear phone" for kids.

One parent of a child who has ACC wrote:

"If you want to make a "ear phone" as our
kindergarteners call them they are quite easy.
We use a short piece of straight PVC pipe and
two elbow joints. Join them together and
instant ear phone that is easily disassembled
for washing and can be made for about 65 cents
each. We made a total of eighty for 4 classes
at the school I teach at. We have been using
the same ear phones for 7 years and they are
still in great shape."



Parent of 8-year-old child with ACC +
cerebral palsy
(diagnosed with ACC at 13 months of age)
writes:

My daughter Danielle is 8 years old and in the
third grade. She is mainstream and receives
resourcing for Math, Reading and Writing.

Danielle was able to master phonetic sounds very
early. We watched the Leap Frog Video
"The Letter Factory" I know, a million times.
As a result she was able to read or decode anything
at a very early age.


Leap Frog Letter Factory DVD

She loves books! In first grade we began to
realize that although she was a phenomenal
reader, she did not understand anything she
was reading. Like many others have said, they
were just words on a page and in a book. They
held no value. It has been puzzling to all of
us; parents and teachers. We continue to
struggle every day, and hope for a breakthrough
soon. I have considered reading tutors but
they are so expensive.

I am definitely interested in any strategies,
software programs, websites, resources, etc that
can help us work though this challenge."

OBSERVATION: Reading Comprehension Difficulty

"In first grade we began to realize that although
she was a phenomenal reader, she did not understand
anything she was reading. Like many others have
said, they were just words on a page and in a book.
They held no value."



Parent of 12-year-old child with ACC
(diagnosed with ACC at age 5 1/2) writes:

"Alex had a hard time learning how to read.
He left regular Kindergarten with just a few letter
sounds.

1st grade began in August. He was below grade level
for reading at the time. For 2 hours everyday Alex went
to the special education class to work on a computer
program "Fast ForWord". During the time that
Alex was on this Fast ForWord program
(all 1st Grade) I noticed a lot of whining. His
frustration level was very low. My guess...The program
was too intense. He was perfect at school and just
let go at home. I do believe the Fast ForWord
program was too intense for such a young child.
But I would do it a 1000 times over. The pay off
was great. It sure did wonders for my little boy.

In December Alex was at grade level for reading.
February, above grade level. Alex was in special
education for 2 years. The only reason was so he
could benefit from the reading program. He spent
the rest of his school day in the regular classroom.
He was expected to do the same work as the rest of
the class did. By 3rd grade Alex was in regular
education full time with pull outs for Speech and
Math in the resource room.

In the beginning his comprehension didn't seem to
be there at all. But as time went by I noticed
that if he was asked on cue it was very difficult
for Alex to retell what he just read or was read
to him. He needed time to absorb the information
before being able to deliver it.


So we came up with an idea. The Teacher was not
to ask Alex any questions unless his hand was up.

Alex reads all the time. He averages about 40 books
per year in school. The school has something called
AR books (Accelerated Reader). They have to read so
many books during the school year. Then they take a
test about the particular book they just read."

OBSERVATION: Difficulty Answering on Cue

"In the beginning his comprehension didn't seem to
be there at all. But as time went by I noticed
that if he was asked on cue it was very difficult
for Alex to retell what he just read or was read
to him. He needed time to absorb the information
before being able to deliver it."

Strategy Used:

"So we came up with an idea. The Teacher was not to
ask Alex any questions unless his hand was up."


"Teaching is not a profession; it's a passion."
-- Unknown



Mr. McCallum is a fourth grade teacher who taught
a student with ACC in his class. He was involved
in an ACC support group in 2001. Mr. McCallum
wrote a document titled:
"Considerations For Educators Of Students With ACC".

In his document Mr. McCallum shares a quote from
an adult who has ACC:

"In the words of an adult with ACC, “My problem
even (still) today is remembering what I have read.
Studying is very difficult for me I can read it 3
times and retain some but not all of it. Now I did
go thru sometimes where I did develop a headache
with studying hard but my parents thought that was
always an excuse to try and get out of it.”

Mr. McCallum goes on to say:

"The student is not getting out of work.
The student wants desperately to be part of the
class. When it appears they are “goofing off”
then as a teacher I consider, whether the task
is too difficult or whether there is some other
factor impeding the student’s concentration."

Mr. McCallum goes on to talk about reading as it
pertains to the student who has ACC in his class.

"When teaching the student with ACC gone are the
days of the old fashioned “surprise attack” when
a teacher calls on a student to read aloud to
check that they are following along or have an
understanding. This is setting the student up for
a fall. Mostly, the student will remember only parts
of what they heard. Processing the information from
a story or reference book takes time. A strategy for
helping the student with ACC is pre-teaching a concept.
Being able to prepare the student by teaching concepts
or reading a book before the class does works very
effectively. Including technology I will seek out the
video or audio version of a book we are studying in
class. Mostly, the students are working in small
groups on books they have chosen. This provides
scope to work with the student with ACC on a
completing different book at his level. He is
working well below the grade level in reading."

*Please be aware that this does not
apply to all kids who have ACC. Some kids who
have ACC may do well answering questions on cue.

If you would like to receive a copy of Mr. McCallum's
"Considerations For Educators Of Students With ACC"
please send me an E-mail request and I will send it to
you by e-mail.



It is always interesting and insightful to get
the perspective of adults who have ACC as they
reflect back on their childhood in school and
also have the unique advantage of sharing their
experience as an adult.




Cassie, 19 year old adult with ACC + tetrology
of fallot, hearing impaired and non-verbal learning
disorder [and not diagnosed with ACC until age 16]
writes:

"My Reading Challenges

In elementry school I had alot of trouble keeping
up with the class because of reading speed and
comrehension. I did not read my first official
chapter book until gr.5 and it was a horibble
experience. I had to have it read in two weeks,
it took me one month to read and the teacher had
the gulls to tell my mother that I wasn't trying
and that I was lazy. It was not until gr.8 that
my new SERT (Special Education Resource Teacher)
had the bright idea to get my books I had to read
on tape. In high school I had teachers read the
novels textbooks with me. I read/comprehend the
text much better when I hear and am able to follow
along. Now that I am in college I use kurzweil
to read textbooks/assignments and tests.

I have had trouble with visual tracking and use
reading windows when in class, while not in class
Kurzweil is again used as it highlights what is
being read/spoken.)"

What is a "reading window"?

Cassie replied:

"A reading window is a piece of colored
construction paper or cardstock that has a
hole cut out of it that is the size of the
line in the textbook (my ocupational therapist
made one for each of my textbooks and a general
sized one for leisure reading.

When I was in elementary school I did use
reading windows.when I was in highschool I did
not use a reading window because I was teased
and bullied because I had to use one. Highschool
is when I started using kurzweil."

Cassie goes on to say:

"I have great diffculty remembering what I have
just read and without assistive technolgy I would
not be able to make it through college. The
following is generally what I do on a day to day
basis inorder to better comprehend the text;
1)listen to teachers lecture, 2)listen/read it
on kurzweil, 3)summerize text, 4) make flash
cards and other fun memory things. If I am
answering written questions in class it takes me
a long time to complete the work. I do not do
well with instant recall. To remedy this so that
I do not lose class participation marks, I am
e-mailed the questions/text pages before class
and thus able to participate in the discussion
with my peers. Other things that help me to
remember content are: flash cards, tape recording
notes, creating rhyms/jingles/actions to remember
concepts, highlighting important text rightaway
and working with a study buddy."

OBSERVATION: Books on Tape

"It was not until gr.8 that my new SERT
(Special Education Resource Teacher)
had the bright idea to get my books I had
to read on tape. In high school I had
teachers read the novels textbooks with me.
I read/comprehend the text much better when
I hear and am able to follow along."

OBSERVATION: Kurzweil software

"Now that I am in college I use kurzweil
to read textbooks/assignments and tests."

"Kurzweil...highlights what is
being read/spoken."

What is Kurzweil?

Kurzweil is a text-to-speech software that does
a whole lot more. Here is a brief description
directly from the Kurzweil website:

"Kurzweil 3000 - Reading, Writing and Learning
Software for Struggling Students – offering:

"Access to Any Curriculum - The software can access
virtually any information, whether it is printed,
electronic, or on the Web.

Study Skills - With the aid of visual and auditory
feedback, the software helps students keep up with
assigned reading, learn critical study skills and
successfully complete writing projects and tests.
With its robust study skills tools, Kurzweil 3000
facilitates active reading including: highlighting,
text circle tools, annotations, Bookmarks, Voice
Notes and Extract in order to create outlines, study
guides, or word lists – all things that can improve
their reading comprehension and retention.

Decoding Support - It then reads the words aloud to
the student in clear, humanlike, synthetic speech,
while a patented dual highlighting feature adds
visual reinforcement. For students who have
difficulty physically accessing curriculum materials,
Kurzweil 3000 provides a digital means of engaging
with text and can support students who use alternative
methods for accessing the computer.

Writing and Self-Editing Tools - As students type,
the software speaks each letter or word, so they can
quickly re cognize and correct spelling mistake s.
The Check Spelling As You Type feature underlines
misspelled words in red. The audible spell checker
and customizable word prediction further assist
students with creating and modifying reports, essays
and papers without teacher intervention."

Download Kurzweil 3000 trial demo--free

OBSERVATION: Reading Comprehension Difficulty

"I have great diffculty remembering what I have
just read and without assistive technolgy I would
not be able to make it through college."

Strategies Used:

"The following is generally what I do on a day to
day basis inorder to better comprehend the text;

1)listen to teachers lecture,
2)listen/read it on kurzweil,
3)summerize text,
4) make flash cards and other fun memory things.

If I am answering written questions in class it
takes me a long time to complete the work. I do
not do well with instant recall.

To remedy this so that I do not lose class
participation marks, I am e-mailed the
questions/text pages before class and thus able
to participate in the discussion with my peers.

Other things that help me to remember content are:

flash cards,
tape recording notes,
creating rhyms/jingles/actions to remember
concepts,
highlighting important text rightaway
and working with a study buddy."

Lynnea, 24 year old adult with ACC
[and not diagnosed with ACC until age 20]
writes:

"My mother used to read bed time stories to me
all the time and I firmly believe that helped
me later in life. She read things like Lord of
the Rings, and Chronicles of Narnia to me. As
I got older, in middle school I was reading
Shakespeare and by high school (10th grade) I
had a 13+ reading level. I struggle with reading
out loud but when reading silently I read fast.
And when it comes to remembering things that I
read...whether silently or out loud...thats very
difficult for me. When I have to memorize something
I have to put it to a song, or write it out on
colored note cards. Those are the study techniques
I learned in college since I have such trouble with
remembering things that I've read. I think that when
learning to read, patience is key, for the teacher.
But also give them a chance to explore worlds like
my mom did. We used to talk about the stories after
she read them, and she would give me a chance to
relive them like I was in the story. In school I've
applied that to text book reading as much as I can
and I've found that helps."

OBSERVATION: Struggle Reading Out Loud

"I struggle with reading out loud but when reading
silently I read fast."

OBSERVATION: Reading Comprehension Difficulty

"And when it comes to remembering things that I
read...whether silently or out loud...thats very
difficult for me."

Strategies Used:

"When I have to memorize something I have to put it
to a song, or write it out on colored note cards."

COLORED OVERLAYS AND READING RULERS:



Some kids who have Agenesis of the Corpus
Callosum may find it helpful to use a
colored overlay or a colored reading ruler
when reading.

These colored overlays/colored reading rulers
can also help kids to line up numbers and
columns in math (another subject that some
kids who have ACC often struggle with).

There are many different colors to choose
from and it is suggested that a child try
several colors until they find a color that
may help them to see the words more easily.

*note: talk to your child's teacher or occupational
therapist about trying a colored overlay or colored
reading ruler.

Parent of a child with ACC wrote:

"My son's school tried this with him (7yrs old/c-acc)
and he did much better with a blue background. It
was interesting for us to hear this because the index
cards that the kids get from school with their sight
words on them are blue and he was doing well at
recognizing the words. But then if he tried to read
a book with many of the sight words he knew on the
blue cards, it was like he had never seen them
before. He is getting better at reading on a white
background but it's nice to use the blue for initial
learning purposes."

*note: c-acc stands for complete agenesis
of the corpus callosum. It means the corpus callosum
is completely missing.

"Good teachers understand that for a child to
learn, the teaching style must match the student's
learning style."
-- Temple Grandin, Ph.D



Some children who have ACC attend school
in a special education classroom where they
receive very specialized teaching methods and
support that meets their unique learning needs
and abilities.

I came across a wonderful article written by the
mom of a child who has Hypogenesis of the Corpus
Callosum.

The article talks about a reading method that uses
specialized adaptive books that allows a multisensory
approach to teaching.

A child can listen to a page that is read and
then has the opportunity to answer a question
about that story page by choosing the right
multiple choice picture card.

It's a terrific approach to exposing a child to
reading using an adaptive method that helps teach
language, and helps them show comprehension by
making choices.

Ben's mom, Vanessa, graciously gave permission for
me to reprint her article here.



Mom to 6-year-old Ben who has Hypoplasia of the
Corpus Callosum
(diagnosed at age 3) writes:

"Last year in Kindergarten, Ben was part of a
pilot program for a literacy study at the
University of North Carolina at Charlotte.
His teacher was given specially adapted books
to read with her children. The books were
enhanced with raised lettering for the children
to touch and objects for the children to hold.
At points throughout the book, the teacher
would ask a question about the page she had just
read and the child would choose from pictures
or objects inserted in the book to answer the
question.

One book Ben read talked about rain. The adapted
book came with a small spray bottle and at that
point in the book, the reader sprayed water into
the air. Ben completed the program in just a few
months, quicker than expected. Obviously, he was
motivated by the methods they used.

My sister, a creative and can-do person, decided
to make a book like this for Ben, using one of
his favorites from the Bob the Builder collection.
Using the one from school as a model, she tore the
book apart, glued the cover to the front of a
3-ring binder. Each page was put in a plastic paper
protector and inserted into the binder. She added
items to each page that were within the story of
the book, such as a bird's nest, toy truck, cat or
cell phone and attached them with Velcro.

The story comes alive when objects can be used to
demonstrate what is being read. With each page, a
question was asked and Ben would answer by choosing
between two objects.



For Christmas, Kim, who has
worked with Ben for the last
two and a half years, made Ben
another one of these books. She
used some other techniques: she
laminated each page and then put
them in a 3-ring binder. She added extra paper to the
bottom of each page and attached two laminated pictures
with Velcro. After reading the page, a question is asked
and Ben can choose his answer from the two pictures. The
pictures can be switched with others for an extra challenge.





These are two choice cards.
The question may be,
"What did the man use to get around the town -
the scooter or the cat?"

I believe this pilot program was successful
and will be offered to school systems throughout
the country at some point. But if you have some
time, creativity, Velcro and a book, you can try
to make one of these on your own. Depending on
your child's interests, abilities and
sensitivities, you can design something that
will work specifically for them."

reprinted with author's permission from eSpecially Ben.

*Note: Hypoplasia of the corpus callosum = a thin
underdeveloped corpus callosum



Parent of 16-year-old child with partial ACC +
seizures (although seizure free for 4 years!),
scoliosis, issues with the cerebellum, enlarged
ventricles (diagnosed with ACC at age 6 months)
writes:

"Tristan learned to "read" by the time he was 4.
He knew about 50 words, so we purchased a Leap
Frog reader, his vocabulary exploded to hundreds
of words with in a few months and his ability to
read anything exploded. He could decode any words,
no matter how long, no matter that he had never
seen the word before. His phonetically understanding
was amazing. Still is.

However, his ability to comprehend what he had
read was FAR behind. Unfortunately, the words
were just that, words. No real meaning, or
ability to contextualize. So, in small steps
we worked on it. What does the sentence mean?
What does the paragraph mean? Inferencing,
concrete questions, etc, were key to his
understanding.

Then, we didn't make progress for 4 years.
It was discouraging, although I did not stop
trying. He is very good at recalling facts,
so we concentrated on that for a while.
Tristan loves history, politics, and current
events, so we used his interest to expand his
ability to understand other reading materials.
We found that reading out loud to him, and also
having him read the same material was helpful
to further his understanding.(multisensory approach)
A reading tutor really helped at this point.

Now, he is reading non-fiction at about a 3rd
grade level, and fiction at about a 5th grade
level. I'm not yet sure why we are seeing such
a difference, but it is progress. Reading,
writing a few sentences about what he read, and
answering comprehension questions on a daily
basis has made a huge difference. Just like so
many other aspects of ACCers, practice, practice,
practice, and finally it will click."

OBSERVATION: Reading Comprehension Difficulty

"Tristan learned to "read" by the time he was 4.
He knew about 50 words, so we purchased a Leap
Frog reader, his vocabulary exploded to hundreds
of words with in a few months and his ability to
read anything exploded. He could decode any words,
no matter how long, no matter that he had never
seen the word before. His phonetically understanding
was amazing. Still is.

However, his ability to comprehend what he had
read was FAR behind. Unfortunately, the words
were just that, words. No real meaning, or
ability to contextualize."

Strategies Used:

"So, in small steps we worked on it.
What does the sentence mean?
What does the paragraph mean?
Inferencing, concrete questions, etc,
were key to his understanding."

"We found that reading out loud to him, and also
having him read the same material was helpful
to further his understanding. (multisensory approach)
A reading tutor really helped at this point."

"Reading, writing a few sentences about what he
read, and answering comprehension questions on a
daily basis has made a huge difference."



In a recent ACC discussion about Reading and kids
who have ACC the topic of fiction and nonfiction
books and reading levels were discussed.

Fiction = not true
Nonfiction = true

What is the difference between the reading level
for fiction and nonfiction?

First Parent's Reply:

"I can help with the difference between his
nonfiction and fiction reading level. His
nonfiction will always be 1-2 grades behind
than fiction. This is because of the content
nonfiction provides, it makes it more difficult
to retain and comprehend than fiction. I
volunteer in the school library and this is
where I received my information. We always
have the children pick a nonfiction book
1-2 grades below their actual reading level,
especially A/R (Accelerated Reader) books."

Second Parent's Reply:

"As a teacher of beginning and later reading for
many, many years, as well as an ACC mom, I'd like
to chime in here. (names parent) is exactly
right about the reading level discrepancy for AR.

In general in life, it depends on the level of
detail a child is expected to memorize whether the
nonfiction level is similar to the fiction one.
For AR, the nonfiction tests demand a great deal
of detail memorization instead of concentrating on
the big picture, and the books are jammed full of
information. So there is a real need to have the
kids read at a lower level. However, most of us
in real life do not read nonfiction to memorize
every small detail, and in most nonfiction reading
we have the option, and often count on it, to
return to the text to check the details.

What I am saying is that a child may be significantly
behind his or her reading (or comprehension) level
for nonfiction in AR or a similar program, but not
in general nonfiction reading (reading for pleasure,
summer reading, etc.). In fact, in our family, we
have found that "casual" nonfiction reading in areas
of strong interest could easily be at a higher level."

"Do not go where the path may lead; go instead
where there is no path and leave a trail."
-- Ralph Waldo Emerson



Teacher and Parent of 21-year-old daughter
with partial ACC + lobar holoprosencephaly
(diagnosed with partial ACC at age 17) writes:

"Problems with reading comprehension constituted
the biggest challenges she has had (and continues
to have) in school. And they are related to
difficulties with social comprehension, and
comprehension of the world around in general.

As a toddler she would flip through books as
quickly as she could. She would look at pictures
and respond to questions if we asked her, but then
the page would immediately flip. She was not
interested in the pictures (which should have been
an indication of comprehension problems, since in
picture books by definition a great deal of the
story is in the pictures.)

Since she loved music, I bought every picture book
I could find that was based on song lyrics. If we
would sing the books instead of reading them, she
would stay with us in the books in order not to
have the song messed up, and eventually she grew
to love books in general. We were then able to move
on to others with good rhyme patterns, but no music,
like nursery rhymes and Brown Bear, Brown Bear.



When she was able to connect a particular song or
poem or rhyme to a book, at age two or three, she
slowed down and took books at regular speed. And
she was quick to connect text to words, finding that
more interesting than the beautiful pictures. She
was always asking questions about letters, then
words, then punctuation, which I think made her an
early reader. But the visualization/comprehension
was always weak, and so her sense of story never
developed well.

Unlike many with ACC, for her language was always
a strength. She began talking at 9 months, and
knew the alphabet at 2. By three she could spell
some words, and as soon as she could control a
pencil (about 3.5) she was writing them. Never
drawing.

Then by 4 she figured out that if she could spell
and write, she could read and by 4 she was picking
words out of the newspaper and her books, so she
was way ahead of the others, even gifted kids, in
her kindergarten class. As her teacher I'd have her
read directions to the other Kindergarteners while
I worked with other grades. In first grade she tested
very well (92%ile for reading) on standardized testing,
although the process went slower than usual that year
because she asked many questions, while typically kids
ask few or none. By second grade she was able to read
almost anything; however, I could see that her
comprehension was not keeping up. In my many years
of teaching primary students I had never had a
student with a similar learning profile.

I never heard her sound out a word. I think she
knew them all by sight, so I considered her a
sight word reader. But she never really had
trouble with unfamiliar words, either, so I guess
she just deduced the phonics from the words she
could read, and applied that to new words. She was
a bit obsessed with all aspects of literacy. Her
favorite toy was a Speak and Spell, and she wore
out many sets of batteries using it, and at the same
time driving her brother, three years older, crazy.
She also used to help him edit his papers for
spelling and punctuation, another of her interests.

She taught herself to read. Even though both of
her parents are teachers, we never pushed it before
our kids started school, but of course we always read
to them a lot and answered their questions.

As she taught herself to read, it always sounded
lovely and flawless. Fluency, one of the popular
buzz words in education now as an indication of a
good reader, was never a problem for her. She often
asked me how different punctuation marks would make
a sentence sound.

One flag that I should have paid more attention to
during her preschool years was her intense interest
in letters, words, and punctuation. Of course you
want a child to pay attention to these details, but
not to the point of shutting out meaning. I wish I
had spent more time bringing her back to the content
of the story. I think that she had the impression
that the sound of the story was the important thing.
In this vein, she always loved poetry and was always
great at reading it aloud. She appreciated the sound
of it, which is of course a big part of a poem, but
there should also be meaning.

We had testing done in 3rd and 10th grades at
school. Both showed very high reading scores.
The first time she was shown to be fine in
comprehension, and the second her comprehension
was only slightly delayed. The discrepancies
between the word attack and comprehension scores,
though, should have raised a flag. In 5th grade
we had professional testing done, with the same
results: very high reading with only slight delay
in comprehension. The instruments used for
evaluating comprehension (mainly forms of the
Woodcock Johnson) were not helpful at all.

Good word decoding skills can really mask the
comprehension deficits. Educators in general
are not used to seeing kids with this combination,
as most kids with reading difficulties have just
the opposite problem. And not only are schools
unprepared to diagnose the problem, they also do
not know what to do with it once they recognize it.

I was basically looked at as a mother who
could not be satisfied with average results.

By middle school the comprehension problems were
getting so serious that they affected most of her
school subjects. Only things taught as skills,
like computers, math computation, grammar, and
writing, were relatively easy. The "content area"
classes like science and social studies were a
nightmare. We spent hours every night going over
material and reteaching things to help her pass
classes. (This pattern continued through high school.)

When she was in middle school I chanced upon a
description of a condition called hyperlexia.
Basically it means the opposite of dyslexia--
good word attack skills but poor comprehension.
(The most extreme cases are characterized by very
poor language ability--some kids cannot speak--
along with precocious reading ability. There is
also a lot of discussion about it being on the
autism spectrum.) We had her tested at a private
learning center, and she got this diagnosis. They
explained it by saying folks with hyperlexia do not
visualize well--they don't make the "movies" in
their heads the rest of us do. (This does not
square well with the notion that autistic people
think in pictures.) They demonstrated to us that
this poor visualization was indeed the case with
her. She received tutoring for a month, but we
were unable to keep her there any longer. The
recommended course would have lasted at least
5 or 6 months and cost $20,000, with no guarantees
of any improvement. We did work on a program based
on the same concepts at home, and we feel it was
probably of some help.

Over the years we have developed a method of
reading literature. She reads the book aloud to
us, one chapter at a time. That way we are at
the same place in the story that she is, and she
gets both the visual and auditory benefits.
We can discuss new words, plot devices,
difficult concepts, background, and other things
that may be confusing. She keeps a notebook in
which she writes a short summary of the chapter
as soon as she's read it. Rereading these
summaries is a good way to review before
starting the next chapter. And we try to relate
the story to other things she has read, or to
her life in one way or another. She has read
novels like To Kill a Mockingbird and Huckleberry
Finn this way, and just last quarter she read A
Lesson Before Dying. When she was younger she
used this method some with books by Gary Paulsen
and other authors.

Another thing we found is that choice of books
is important. Whenever possible, we helped her
choose books that had a high emotional content
for her and that told the story in a
straightforward way. If there was too much
psychological stuff going on or a lot of
flashbacks it was too confusing. Of course
in school sometimes you have no choice. It
also helps to keep the grade level of the books
lower than grade level. It's surprising how
many good books are written at a fairly simple
grade level. You can find lists online that
will tell you a book's grade level, or AR
(Accelerated Reader) level, which is
roughly similar."

This same parent goes on to talk about her
daughter and how they stumbled upon a reading
comprehension strategy in college:

"I have thought of another thing that I believe has
really helped her comprehension, both in reading
and in general. We found it completely by accident.

She is taking classes at the community college, and
we are basically having her sign up for anything she
can possibly do. (Since the college is very small,
there is a limited number of courses, and a lot of
them are either taught on live TV or online classes.
We have learned that she is best avoiding these new
methods of learning, and should stick to classes
where there is a teacher present. I could see that
some ACC students might do well with online classes
where they could master the material at their own
pace. She could perhaps do that too, but we would
have to sit with her probably, and instead at this
point want to encourage her to be as independent of us
as possible, even if it means relying on extra help
at the college, which she does get.)

Anyway, she takes a mix of classes, some regular,
some remedial, and one for students with disabilities.
Most of the regular classes are business type classes
where she works at her own pace on a computer, but
with a teacher available. Sometimes she does her work
in the student support center, which offers help and
tutoring for all students, and also runs the disability
office. She can get more help there.

She has taken keyboarding, document processing, Word,
PowerPoint, Photoshop, and now Excel this way. I think
these classes where she works through a subject one
small step at a time have really helped her. She has
to pay close attention to detail and then actually do
something each time, and that demonstrates her
comprehension, or lack of it, constantly. This
performance with instant feedback is really important
to her understanding."

The parent, looking back, made an observation
resulting in a "do over" wish that could possibly be
of value to other parents who have a child with ACC:

"It is an important component of any child's reading
education to see those around him or her read.
Parents and especially siblings are terrific role
models at the beginning reading stage and after.
There was almost no TV or gaming in our house, and
everyone read a lot, including her older brother,
so that was good.

If I could have a do over, I think I would have
encouraged more talking about what we ourselves were
reading. Maybe to her reading looked like a solitary
and mysterious thing. Since we were all doing it
silently for the most part, she didn't see the
connection to meaning."

OBSERVATION: Reading Comprehension Difficulty

"Problems with reading comprehension constituted
the biggest challenges she has had
(and continues to have) in school. And they are
related to difficulties with social comprehension,
and comprehension of the world around in general."

Strategy Used:

"Over the years we have developed a method of
reading literature. She reads the book aloud to
us, one chapter at a time. That way we are at
the same place in the story that she is, and she
gets both the visual and auditory benefits.
We can discuss new words, plot devices,
difficult concepts, background, and other things
that may be confusing. She keeps a notebook in
which she writes a short summary of the chapter
as soon as she's read it. Rereading these
summaries is a good way to review before
starting the next chapter. And we try to relate
the story to other things she has read, or to
her life in one way or another."



Parent of 15-year-old child with ACC +
autism, Dandy-Walker malformation and
cortical visual impairment (CVI) 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! I would say
that reading is his best subject. He is very
delayed in math and all other subjects. Now,
his reading comprehension is where we have
struggled. For a long time we didn’t know if
he didn’t comprehend or was he simply unable
to articulate it. Communication is a bit of
a struggle for him. He has a processing delay
of about 20-30 seconds when answering questions.
One of the ways the teacher has worked with him
was a daily “journal”. He picked out a picture
in a magazine, cut it out and glued it to a
paper and had to write 3 sentences about what
was happening in the picture. At first it was
a struggle for him, but he would do it. He has
been doing this for about 5 years, starting in
fifth grade. Over the last few years he has
started reading for enjoyment. He loves Star
Wars and Disney. He is quite hilarious when
he reads, because he does all the different
voices. We have tried to get him to read to
himself sometimes, but he just can’t do it.
We aren’t really sure why. As a result of
this he has started reading to the class next
to his special ed class. They are all lower
functioning, and can’t read. Apparently they
love it when he comes over because of all
the voices.

He is constantly amazing us with the words he
knows. The only issue he has is that he learns
by sounding the words out and as we all know
the way a word looks and how it is said doesn’t
always match. Sometimes we haven’t a clue what
he is trying to say so we have to make him spell
it out, which is also something he is very good
at. For instance he wanted a new game Star Wars
DS game called Elite Squadron, but he was
pronouncing it “Elight” Squadron. Some of these
pronunciations can be quite hilarious."

"Parker was diagnosed at 2 weeks of age. He had
brain surgery at six weeks on the occipital part
of the brain to remove the encepholocele. When he
was born he had a bump (from the encepholocele)
on his head and so they did an MRI and found his
C-ACC, encepholocele, and Dandy Walker malformation.
He was given an extremely poor prognosis at that time.
Happy to say he has far surpassed all expectations!"

OBSERVATION: Reading Comprehension Difficulty

"Now, his reading comprehension is where we have
struggled. For a long time we didn’t know if
he didn’t comprehend or was he simply unable
to articulate it. Communication is a bit of
a struggle for him. He has a processing delay
of about 20-30 seconds when answering questions."

Strategy Used:

"One of the ways the teacher has worked with him
was a daily “journal”. He picked out a picture
in a magazine, cut it out and glued it to a
paper and had to write 3 sentences about what
was happening in the picture. At first it was
a struggle for him, but he would do it. He has
been doing this for about 5 years, starting in
fifth grade."



Parent of 12-year-old child with ACC +
cortical dysplasia and seizures
(diagnosed with ACC at age 11) writes:

"Lexie always struggled with reading. Our first
sign of trouble was the fact that she never
could rhyme. It was the strangest thing! But as
school began I noticed she had such a hard time
with those little books. Every single word was
as if she had never seen it before...page after
page. The same few words would repeat but she
would not recognize them. So with each page she
struggled just as much as the page before.
By first grade we bought Hooked on Phonics.

The "A" Song - Hooked on Phonics


It interested Lexie so she did it. Loved it.
But still she really could not make the jump
from the program to real books. Word families
meant nothing to her. RAT CAT SAT........Lexie
would say HOUSE.....Really? HOUSE???? Again, the
rhyming thing never worked for her and that is what
word families are. Second grade more of the same.
She was reading, I guess. At about a Kinder level.
No AR yet of course. We did dyslexia programs
through the district. She would do FINE according
to her dyslexia teacher. By 3rd grade she had
graduated out of the program. I kept saying
"But she really can't read!" The state assessment
finally showed everyone how much she struggled.
Of course she failed the state assessment. Her
reading comprehension was/is terrible. She is in
6th grade. Reads about on a 3rd grade reading level.
She is in regular classes with accommodations.
Making straight A's.

But her reading, fluency, comprehension is horrible.
For now there is not a lot of reading. They have no
text books. But when she took the mid year reading
comprehension test she scored a 40. And her MAP
testing she scored in the 7% which basically means
she reads better than 7% of kids her age. Curiously,
she scored 17% at the beginning of the year so she
lost ground."

MAP = Measures of Academic Progress

MAP is a computerized assessment tool used by
teachers to understand each student's academic level
in reading, math and science. As the student takes the
test MAP adapts to a student's responses by presenting
a more challenging question if they answer correctly
and by presenting a simpler question if they miss a
question. The test is designed to narrow in on a
student's learning level.

"I guess I should say Lexie has and always will
struggle with reading and comprehension. Phonics
based learning certainly is not a good way for
her to learn. She still cannot sound out words.
She does do better sounding out nonsense words
than she does real words. One of the many things
she does that makes no sense whatsoever. She has
a hard time with inferences or finding the main
point of a story. One example: she read a passage
about a boy bundled up on his way to school and
was late because his paper had blown out of his
backpack. I am paraphrasing, of course, but the
question was what season was it. She looked as
if the question was written in German! She could
not infer it was winter (bundle up, windy) She
circled summer. She just guessed, I am sure.

This is a very simple example but it is life with
her. If it is not written exactly in a passage,
she will not find the answer....ever! So, for
Lexie, phonics was a no go. But tried for years!
Memorizing is so hard for her but I think eventually
she learned sight words just from repetition."

OBSERVATION: Reading Comprehension Difficulty

"Her reading comprehension was/is terrible. She is
in 6th grade. Reads about on a 3rd grade reading
level. She is in regular classes with accommodations.
Making straight A's. But her reading, fluency,
comprehension is horrible."

OBSERVATION: Difficulty Making an Inference

"If it is not written exactly in a passage,
she will not find the answer....ever!"

OBSERVATON: Rhyming Words Difficulty

"Our first sign of trouble was the fact that she
never could rhyme. It was the strangest thing!"

"Word families meant nothing to her. RAT CAT SAT.....
...Lexie would say HOUSE.....Really? HOUSE???? Again,
the rhyming thing never worked for her and that is
what word families are."

OBSERVATION: Recognize a Word on One Page -
Not Know it On the Next Page

"But as school began I noticed she had such a
hard time with those little books. Every single
word was as if she had never seen it before...page
after page. The same few words would repeat but
she would not recognize them. So with each page she
struggled just as much as the page before."

TIP FROM PARENT: Help Improve Fluency:

"A great way to teach fluency is to buy a load
of 15 min tapes and let them record themselves
reading...complete with a bell to sound when it
is time to turn the page. We had our kids make
books on tape for younger siblings and cousins.
They love it and often will want to self correct
if they hear a mistake."



Parent of 19 year old daughter with partial ACC +
congenital panhypopituitarism and born without a
pituitary gland writes:

Just a bit of a nutshell version here. My 19 year
old daughter still struggles with written
comprehension. She sometimes read a whole kids
novel (below her chron. age level) and then
announces at the end that she hadn't understood
any of it!

She has difficulty understanding and interpreting
written information but writes well. She can
understand verbal/oral information but is very
reluctant to speak. Tricky!

For years she would never sit on her own with a
book. She didn't like picture story books at all
when small and often said she didn't like reading
throughout primary school. She would 'tolerate'
having a story read to her before bed and was
'encouraged' to enjoy listening to kids' novels
with chapters as she got a bit older. Liked it
better if I used funny voices for the characters.
They always needed a lot of explanation and had to
be pretty realistic. Harry Potter at about age 10
was a turning point. Nothing like self-motivation!

When she was about 10 or 11 her reading age was
at about 7. She desperately wanted to read Harry
Potter and began the first book with a great
struggles. She doggedly persevered and many
months later she finished it. I watched her
reading improve dramatically over those months
with a little bit of intervention along the way.
She then read the others over a long long time
and reread them all several times.

What intervention was used and helpful?

Parent replied:

"I'd say that a large part of the intervention,
with Harry Potter, was encouragement and involvement.
I'd read the books too. I've read 100's of kids and
adolescents' novels. I'd try to include a bit of
variety in my approach - discussing magical spell
vocab, talking about the incidents and characters,
reading some of it aloud to her, Abbie reading some
of it to me, making up character voices, role playing,
comparison references when we were out e.g. foods,
parties, school etc. Just making it part of everyday
activities.

Also a bit of bribery didn't go astray if the
interest was waning. (They're very thick books) We
had a card collection and a few character dolls as
well as the chocolate frogs!"

"Having novels, or 'chapter books' as the kids often
call them, read aloud, by an adult, is very beneficial
for kids of any age. They hear the language, intonation
and paraphrasing as well as the music of the voice.
Chapters often end with suspense or something else to
look forward to and are a great way for kids to have
a bit of undivided attention. Good kids novels are
often a revelation to adults too and provide
springboards for heaps of discussion.

I think discussion is probably the key thing along
with really careful selections of reading materials.
There are some fabulous current kids' fiction books
around. I tended to use a few favorite Australian
authors - John Marsden, Andy Griffiths "Just" series
(Extremely funny for all ages and really appealing
to kids), Emily Rodda and Paul Jennings. Some of
those authors have compilations of short stories
which are also good. I felt that the vocab and
content were more familiar and therefore easier to
interpret and understand.

Also there's no point in insisting that the child
must read the book if the child cannot bear it,
especially if reading for enjoyment. I would always
say that she needed to give at least 2 chapters
before giving up otherwise it was hard to get
anywhere. (unless she was way too frustrated after
the first couple of pages!) It's a bit harder with
compulsory school texts but sometimes there are
movies or recorded versions to help give the texts
meaning. Those ones just need a lot of gentle
coaxing and TLC - small doses."

The Parent went on to say:

"She hasn't read much else apart from the
Parvana Series by Debra Ellis but completing
Harry Potter was the most significant positive
step forward I ever saw in her entire primary
school education.

I gave her enormous encouragement to read and
she grew up in a family of avid readers. In
secondary school she often had difficulty
interpreting the content as she was very naive
and had difficulty processing the content in a
meaningful way."

"Abbie was 21 months when she was diagnosed with
pACC from an MRI. Treated for primary hypoadrenalism
from birth but changed to Panhypopituitarism and
pACC after MRI. pACC ignored as the rest was having
a more significant and potentially life threatening
impact."

*note: p-acc stands for partial agenesis
of the corpus callosum. It means the corpus
callosum is partially missing.



Parent of 8-year-old child with ACC +
interhemispheric brain cyst
(diagnosed with ACC at 1 day of age) writes:

"My son, Nick, is now in second grade. The best
thing we’ve done for him in regards to reading
was finding him a tutor that teaches him the
Orton-Gillingham method of reading. He learns the
“rules” of decoding words. It’s a very interactive
program that includes repetition, writing, and
spelling. He has tutoring 2 night/week for one
hour each.

He has also learned by phonics (as taught in
his regular classroom) and by memorizing
sight words. This has been a struggle, with
frequent repetition. It takes him longer than
his peers to learn and remember. And, sometimes
he is inconsistent—he can recognize a word well
one day and have trouble sounding it out the next.
Or, he can easily decode a word on one page of a
book and not recognize it on the very next page.

He was in a resource room for his academics but
has now been transitioned back to the regular
classroom with modifications. He is reading at
“second-grade” level. Comprehension is a challenge
and his tutor reassures us that this will come
with time (and lots of practice!). Right now he
works so hard to decode words that his brain does
not have reserve left for comprehension!"

OBSERVATION: Recognize & Decode a Word One Day--
Not Know it on Next Page or the Next Day

"It takes him longer than his peers to learn and
remember. And, sometimes he is inconsistent—he
can recognize a word well one day and have trouble
sounding it out the next. Or, he can easily decode
a word on one page of a book and not recognize it
on the very next page."


"O" song





Parent of 10-year-old child with ACC +
born with a tethered spinal cord writes:

"My son, Nathan, is in a "resource class" for
reading comprehension and is doing much better.
The resource class is a small group and they go
slower with their reading and retention in what
they have read. When Nathan was in his regular class
during this part of the day there was too much
distraction and the teacher went to fast for him
and he would give up and put his head down. Now he
does much better. As far as at home, I always read
to Nathan since he was born but he was never too
interested. He learned to read in kindergarden and
is a great reader but it is harder for him to
retain information unless IT IS
SOMETHING HE REALLY LIKES!! His wanting to read
came last year in the third grade and this year
he read his first chapter book alone! It was
Alvin and the Chipmunks because he really loves
them and it was age appropriate. I let Nathan pick
his books and this can be hard. Then we read them
together in small increments of time. I sometimes
ask him questions about what we've read but for
the most part I just let him enjoy his reading.
In school homework I help him sentence by sentence
and I show him what it means visually especially
if it is about science in anyway I can and it
clicks for him and he can answer any questions
about it. He is very much a visual learner.
Nathan really likes to read what he likes and I
think that is normal. I just have to communicate
with his educators and make sure they are aware
of his learning needs at all times. Sometimes
Nathan likes to draw pictures of what hes read
also and this is also great."

Parent also wrote:

"His tethered spinal cord was repaired at four
months old and Nathan has been in programs pretty
much since day one. The doctors actually told me
he may never do anything past what he did as a
newborn. They were wrong.

Nathan has different milestones. He walked when he
was two and a half and didnt crawl until fourteen
months old. He is in regular fourth grade right now
but received 49 percent resource help at school for
math and english comprehension..he does better in
small groups as he gets overloaded in large groups.
He has a hard time keeping up with the other kids
his age. He also is hypotonic and wears a leg brace
as he has a hard time picking up his right foot.
This is the short story of it all. Nathan is a miracle.
He receives ot and pt still and I still find ways to
teach him that works. He is however a great artist,
ahead of the game in speach, and can use a computer
like crazy."

OBSERVATION: Visual Learner

"In school homework I help him sentence by sentence
and I show him what it means visually especially
if it is about science in anyway I can and it
clicks for him and he can answer any questions
about it. He is very much a visual learner."

"Sometimes Nathan likes to draw pictures of what
hes read..."

"There is a brilliant child locked inside every student."
-- Marva Collins



Written January 24, 2006 by Parent of 17-year-old
child with ACC + chromosome microdeletion 1q44:

"I haven't written about Kathleen in a long time, but
she has surprised us a few times lately, so I thought
I'd send a quick update. Kathleen is my 17 year old
daughter who has complete ACC as well as a chromosome
microdeletion 1q44. She is very delayed, cognitively
and physically, but she's a wonderful, exuberant, very
funny girl.

She has always had very limited verbal skills -- she
can speak pretty clearly (especially on words we wish
she wouldn't say!) and has a pretty good basic
vocabulary, but she only speaks in two and three word
sentences. She understands a lot of what we say, but
her expressive skills are much more delayed.
In school, she has never been able to read or write,
but she absolutely loves books and magazines. She
spends most of her free time paging through books
and/or "reading" them out loud to her mirror (she uses
a special jargon when she does that; it sounds like
she is reading in a foreign language -- very fast,
with all kinds of ups, downs, giggles, exclamations,
etc.). She can recognize a few letters of the alphabet,
especially "A" but she has never shown any interest in
spelling things.

Well, a couple of weeks ago, she was helping me unpack
groceries, which she LOVES to do -- she picks up items,
makes little comments, shakes them, etc.. She picked
up a can of tomato sauce that was very plain, and said,
"Hmm. Sauce." That struck me as very strange, because
we've never talked about tomato sauce before. But I
didn't think too much about it. A few minutes later,
she picked up a little micro-meal of Dinty Moore beef
stew. looked at the label and said, "Hmm. More." That
was even stranger. I couldn't think of any reason for
her to say either of those things... it almost seemed
like she was reading the words.

Since then, I've quizzed her and shown her all kinds
of other written things, but she didn't show any
recognition of any words. But on Saturday she came
over to the table where I was looking at a book called
"The Messies Manual," which only had the title on the
cover, plus a small picture of a tote bag. She looked
at the book and said, "Mess." Again, I was surprised,
and wondering even more if she might somehow be reading.
Then on Sunday, she was again helping me unpack groceries.
I handed her a lot of items that she just played with,
but I handed her a pack of snack-size Dole cups that
read Pears in Kiwi-Strawberry Gel. She studied them for
a long time and then said, "Pears."

Any thoughts??? I still can't believe she could have
read those words, because I've shown her dozens of
words and letters since then with no correct response.

It kind of reminds me of that phenomenon we all know
and hear about with our kids who have ACC, of a child
saying a word once -- everyone witnesses it and knows
it is real -- but then it disappears. If any of you
have seen anything like this with your child I would
love to hear about it."



Parent of 6 year old child with ACC
(diagnosed with ACC at 2 days old) writes:

"Shane started reading at a very early age –
around 3.5. He started writing his name at 4 years
old along with other words. He is in kindergarten
now and is doing amazing. He still struggles with
his language but he is communicating better and
better each day. He took a non-verbal test which
all kindergarteners have to take and he scored
92 percentile which is in the ‘superior’ range.
He takes karate twice a week and is planning to
take his test for a yellow belt in August. He
loves the computer and video games but also likes
to play at the park. His teachers are amazed with
him and think that he will be ready to leave the
language program in a year or two. He will still
need speech throughout elementary but he is
improving more and more every year. He works on
a math program on the computer and seems to be
doing quite well. He is already at the first grade
math level.

You just never know what these little kids can
do until they do it. He loves to swim, too!
He is already swimming by himself. The next
item of business is learning to ride his bike
without the training wheels."

I asked the parent several questions:

How did Shane learn to read?
Does he sound words out?
Does he have any challenges with reading?

The parent replied:

"Shane’s favorite book at 3 years old was Green Eggs
and Ham. Daddy read it every night and Shane
started to memorize all the words. He finally had
it down one day and could read himself the book.
We started reading other Dr. Seuss books to him
and he would pick up on words that he had memorized.
While in the car, Shane would point and say “Target”
and “Schnucks”. I guess he was associating the name
with the place. Within a year (4 years old) he had
an enormous vocabulary but could not use the words
together – unless he read. He started sounding
words out at 5 years old (before kindergarten).
He sounds them out with ease now and is now writing
difficult words very close to the correct spelling.
He is almost done with kindergarten and can read a
book effortlessly. We are concerned that he didn’t
comprehend everything he was reading but seemed to
get the story. When we asked him questions about
it he couldn’t get any words out.

His reading skills are the highest in the class
and we have not really seen too many challenges
so far. He really seemed to teach himself which
was just amazing to us. I think since he couldn’t
talk to us reading was the next best thing. I
will never forget hearing those words roll off his
tongue as if he was really talking – but he was
reading."

Do you think that Shane does understand and
comprehend what he reads?

"I do think he understands what he reads. If
a book is funny he will laugh and I can see it
in his eyes that he understands."

Is he able to show his understanding and
comprehension when asked a question about a
book he reads?

"That is what he is working on right now in his
kindergarten reading time. He has to read a book
to a classmate and then the classmate gets to ask
him questions about the story. It was really rough
in the beginning but he is starting to answer some
simple questions when asked. Now when we read books
at home and ask him questions he rarely answers
unless we ask him a yes or no question. I think
that is going to be his biggest struggle in school.
Input can go into his brain but cannot make it back
out correctly."

I really do think he is understanding his books.
I do know that he can read difficult books but I
don’t know if he is comprehending those. We stick
to simple books and I think that he is understanding –
just doesn’t know how to answer the questions. I
know writing for him comes easier than speaking."

In what way does he struggle with language?

Why do you believe he will need speech therapy
throughout elementary school?

Parent replied:

"Shane has difficulty talking/communicating with
others. For this reason he is not too social
and likes to play by himself. The language
program he is in gives him extra one on one time
for helping him improve these skills more. He
is starting to answer questions better now but
they usually come out in the wrong order. He
can communicate his wants and needs to us just
fine. His actual articulation is perfect…it is
mainly a problem with getting his words out.
When I do ask him a question about school – he
usually doesn’t answer me and if he does it will
be about 1-2 minutes later after I have moved on.
He also wants nothing to do with the telephone.
He won’t talk on it or answer it.

I really think that he is going to need this
kind of language therapy throughout elementary.
Most everything he says he heard it from someone
or it is a memorized phrase. We actually have
to teach him how to react in certain situations
and what to do around other kids his age. I
don’t ever see him just snapping out of this
language difficulty...it will just improve as he
matures. I have noticed lately that he is
learning new words but not using them correctly.
I just love that he is trying so hard!!!"

What computer math program does he use?

"The math program is through a company called
Dreambox. Their website is www.dreambox.com

I can tell you that he is a video game and computer
whiz. I think all these kids are!"

The parent went on to say:

"He also has some very weird quirks...things he
says or things he does for awhile. It is
usually a phase but can get quite annoying.
Right now he says “Hit on the Face” over and
over and over again. Before this he would cover
his ears all the time. Sometimes it was because
of something he didn’t want to hear but sometimes
it was for no reason at all."

Did he hear one of his friends say that phrase?

Where do you think he heard it or why did he
begin saying it?

"We think that he might have heard it at school.
He could have just started mimicking someone.
He likes to make rhyming games out of words.
I really have no clue for sure. He gets
something in his head and it just sticks...
sometimes for a short time and sometimes for
a long time."

Parent also said:

"Shane also hates being dirty. If he spills
anything he screams and flaps his arms. It is
getting a little better but now my three year
old daughter is doing it because she mimics
everything he does. If he is outside kicking
a ball and gets some dirt on his hands he drops
what he is doing to go wash his hands and then
runs right outside again to get dirty again.

Shane has also had great success with music
therapy. He has been doing it for several years
and will continue it next year in first grade.
I think music therapy is a must – really
develops the brain."



Parent of 11-year-old child with ACC
(diagnosed with ACC at birth) writes:

"Noah learned to read at age 10. I used
Teach your child to read in 100 easy lessons.
I also use it to teach my preschoolers. With Noah
it just took a lot longer. Noah's school used the
school version Reading Mastery Fast Cycle
along with Lexia Learning on the computer.
There were times when his teachers were
frustrated that he was not learning fast enough,
but in the end it came. I think the key is not
to assign a typical time line to our kids. 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.
I took him to the bookstore and let him pick out
a book to read. It has been a year since he
started reading. He is still behind and has
times of great progress and other times of no
progress. Again, I really do not care about
him not always meeting the teachers goals.
As long as he is trying and makes some progress
I am fine. The YEARS of work has been soooo
worth it. My advice would be to think outside
of the box and keep at it. Throwing all time
tables out the window."



Parent of 12-year-old child with ACC + hypotonia,
heterotopia of grey matter and (seizure disorder-
successfully medicated)
(diagnosed with ACC at 3 days of age) writes:

"For the most part, people who meet her
(usually in a social setting) would be unaware
that Kelsie has any difficulties. However, we
notice that Kelsie is more comfortable interacting
with children younger than she is and her social
difficulties become more evident whenever she
spends time with children her own age. (They seem
more advanced socially…less likely to cry or throw
a hissy fit if they’re not getting their way or if
they can’t seem to do something “just right”.)

Kelsie started in public school at age 3
(with an IEP) and she has had resource help for
reading and math from the get go. So far, she has
repeated only one grade – 2nd. Now 12, she is in
5th grade at a private school for kids with
learning disabilities. The school is an
Orton-Gillingham certified school and they use
a multisensory method to teach every subject
(well, maybe not phys. ed., but pretty much
everything else). She’s at the school on a trial
basis because they’ve not had any experience with
ACC, so they don’t know if their multisensory
method of teaching will work for Kelsie.

Kelsie is reading on perhaps a 3rd-4th grade
level. Up until maybe the middle of last year
(4th grade), she expended a lot of energy and
thought just getting the words on the page out
of her mouth whenever she was reading aloud.
Although she seemed to have a good vocabulary,
she knew more words by ear than by sight. So it
was typical for her to read a sentence or a
paragraph but not be able to tell you what she
just read. (Her vocabulary continues to grow,
but I suspect it may always be more from hearing
words and asking someone else about them than
seeing new words in a book and/or looking them
up in a dictionary.)

This year, she seems to be making good progress
with decoding words through learning what sounds
the individual letters make and what sounds they
make when combined with other letters. She’s
developing better fluency or rhythm and is
recognizing punctuation (reading with feeling)
and so it seems reading out loud is becoming
easier for her. She is also doing better at
summarizing what she just read than she was
before this year.

But I would say that Kelsie is still much better
able to comprehend things if they’ve been read to
her than if she reads them herself. For this
reason, whenever a homework assignment involves
reading something and then answering questions
about it, I have her read it first. Then, I read
it to her. (Sometimes we stop and talk about it
as I read it to her.) And then she works on
answering the questions.

I’ll also add that with regard to reading assignments,
I think Kelsie gets a little overwhelmed but she can
read passages on her own and interpret them. She’s
working hard to read with inflection and at the same
time, pay attention to phrasing (dictated by punctuation).
However, I have discovered that Kelsie remembers far
more if I read the chapters to her first because I tend
to use different voices and tones for the characters.
For her, using different voices or accents helps her
understand which character is doing the speaking and
therefore follow the storyline with a little more ease.
In books, not all sentences are preceded by “Opal said…”
Or followed by “…asked Gloria.” And for this reason, I
don’t think she’s quite capable of applying her own
voices or accents to the characters as she’s reading on
her own. (Those of us who have been reading for much
longer have a greater understanding of how stories are
written, that a new paragraph usually, but not always,
means someone else is speaking. So we can figure it out
a little faster.) Kelsie is still working quite hard to
get the words off the paper and out of her mouth with
the right phrasing and intonation (if it’s a statement,
your voice stays fairly flat, but if it’s a question,
your voice rises at the end)."

For the most part, Kelsie prefers works of fiction.
I’d be extremely surprised if she opted to read a
book about the history of anything, or about
something scientific. The interesting thing is
that while neither of these types of books appeal
to her, she often chooses books from the school
library about animals and how to raise and care
for them. She’s read books about ponies, horses,
hamsters/gerbils and (human) babies. She’s also
read books about things like autism and leukemia
(introductory books for elementary school aged
kids designed to promote understanding and
acceptance of people with challenges).

Kelsie’s toughest subjects are history and
science. Our constant battle is finding ways to
make the information relate to her personally.
Without some kind of personal connection to the
information, come test time, it’s as if the
teacher had been speaking in a foreign language
for two weeks. Of course, it has always seemed
to us that Kelsie does not test well…even when
we know she knows the information.

Our thoughts have always been that the information
went in, but has a hard time finding its way back
out. It’s as if tidbits of information were stored
on index cards in her head, but the cards aren’t
organized, so she can’t find the one she needs to
answer the question. It will come out much later
when something else triggers a memory about that
information."

OBSERVATION: Reading Comprehension Difficulty

"She is also doing better at summarizing what she
just read than she was before this year.

But I would say that Kelsie is still much better
able to comprehend things if they’ve been read to
her than if she reads them herself."

Strategy Used:

For this reason, whenever a homework assignment
involves reading something and then answering
questions about it, I have her read it first.
Then, I read it to her. (Sometimes we stop and
talk about it as I read it to her.) And then she
works on answering the questions."

OBSERVATION: Personal Connection to the
Information to Understand and Process it.

"Our constant battle is finding ways to
make the information relate to her personally.
Without some kind of personal connection to the
information, come test time, it’s as if the
teacher had been speaking in a foreign language
for two weeks."

OBSERVATION: Difficulty Retrieving/Recalling Info.

"Our thoughts have always been that the information
went in, but has a hard time finding its way back
out. It’s as if tidbits of information were stored
on index cards in her head, but the cards aren’t
organized, so she can’t find the one she needs to
answer the question. It will come out much later
when something else triggers a memory about that
information."



READING COMPREHENSION CHALLENGES:

The most common problem with reading seen in some
children and adults who have ACC appears to be reading
comprehension. They often struggle with understanding
and remembering what they just read.

Parents who have a child with ACC said:

"Problems with reading comprehension constituted
the biggest challenges she has had
(and continues to have) in school."

"By second grade she was able to read
almost anything; however, I could see that her
comprehension was not keeping up. In my many
years of teaching primary students I had
never had a student with a similar learning
profile."

"By middle school the comprehension problems
were getting so serious that they affected most
of her school subjects. The "content area" classes
like science and social studies were a nightmare.
We spent hours every night going over material
and reteaching things to help her pass classes."

"...she was able to read or decode anything at a
very early age. She loves books! In first grade we
began to realize that although she was a phenomenal
reader, she did not understand anything she was
reading. Like many others have said, they were just
words on a page and in a book. They held no value.
It has been puzzling to all of us; parents and
teachers." (child is in 3rd grade now)
"We continue to struggle every day, and hope for
a breakthrough soon."

"He could decode any words, no matter how long,
no matter that he had never seen the word before.
His phonetically understanding was amazing. Still is.

However, his ability to comprehend what he had
read was FAR behind. Unfortunately, the words
were just that, words. No real meaning, or
ability to contextualize."

"I would say that reading is his best subject.
He is very delayed in math and all other subjects.
Now, his reading comprehension is where we have
struggled."

"Her reading comprehension was/is terrible. She is
in 6th grade. Reads about on a 3rd grade reading
level. She is in regular classes with accommodations.
Making straight A's. But her reading, fluency,
comprehension is horrible."

"My 19 year old daughter still struggles with written
comprehension. She sometimes read a whole kids
novel (below her chron. age level) and then
announces at the end that she hadn't understood
any of it!"

(Regarding 8-year-old child with ACC in 2nd grade):
"He was in a resource room for his academics but
has now been transitioned back to the regular
classroom with modifications. He is reading at
“second-grade” level. Comprehension is a challenge
and his tutor reassures us that this will come
with time (and lots of practice!). Right now he
works so hard to decode words that his brain does
not have reserve left for comprehension!"

"My son, Nathan, is in a "resource class" for
reading comprehension and is doing much better.
The resource class is a small group and they go
slower with their reading and retention in what
they have read. When Nathan was in his regular class
during this part of the day there was too much
distraction and the teacher went to fast for him
and he would give up and put his head down. Now he
does much better."

"He learned to read in kindergarden and is a great
reader but it is harder for him to retain information
unless IT IS SOMETHING HE REALLY LIKES!!"

"She is also doing better at summarizing what she just
read than she was before this year.

But I would say that Kelsie is still much better
able to comprehend things if they’ve been read to
her than if she reads them herself."

Adults who have ACC said:

"In elementry school I had alot of trouble keeping
up with the class because of reading speed and
comrehension."

"I have great diffculty remembering what I have
just read and without assistive technolgy I would
not be able to make it through college."

"And when it comes to remembering things that I
read...whether silently or out loud...thats very
difficult for me."

“My problem even (still) today is remembering what
I have read. Studying is very difficult for me I can
read it 3 times and retain some but not all of it."

“I have a hard time remembering stuff unless I am
interested in the topic. I always struggled with
recall as I could remember a chapter or two and
the rest of a book forget it. !!!! Some cases I have
to read some thing over and over to comprehend it.”



READING COMPREHENSION TESTING

A common concern and frustration for some parents
who have a child with Agenesis of the Corpus Callosum
is that the child's challenge and difficulty with
reading comprehension is often not accurately assessed,
is not validated and acknowledged and that appropriate
specialized accommodations and educational interventions
are not put in place for the child in an effort to
address the reading comprehension difficulties and to
help the child learn effective reading comprehension
skills.

The parent of a child with partial ACC writes:

"For the testing used to determine placement or need
for Special Ed services, in our case with the Woodcock
Johnson, kids are evaluated for comprehension on very
short passages. The comparative ease of this task,
along with their superior decoding skills, can mask
their actual comprehension levels."

Due to the neurological condition of having ACC and
the manifestations it has on a child's ability to
learn, some parents who have high functioning kids
with ACC may have a difficult time getting the child
on an Individual Education Plan (IEP) and they often
spend a great deal of time trying to convince the
school that their child truly requires specialized
accommodations to meet their educational needs.

One Parent wrote:

"By middle school the comprehension problems
were getting so serious that they affected most
of her school subjects."

For the child who has ACC who is struggling with reading
and comprehension it is crucial that:

1. the reading comprehension problem be acknowledged;
2. the child have a thorough reading comprehension assessment;
3. the reading/comprehension problem be accurately diagnosed;
4. an effective reading program be implemented.

In a recent ACC Reading discussion the topic of reading
comprehension assessments was discussed:

One parent said:

"(names the child) received help from a reading tutor
through school. Here in (names state) most public
schools have a reading specialist, as there has
been a big kick from a statewide "reading literacy"
program. Now that (names the child) is in private
placement, we don't have a separate reading tutor
because it is integrated into the program.

Ask if your school can do a reading comprehension
evaluation (not the Dibbles, which is for speed and
accuracy) and see if they have a reading specialist
on staff. If possible, get an amendment to the IEP
for this service."

I questioned the parent:

Can you tell me what the reading specialist at your
child's school offered in terms of help?

Parent replies:

"Lots of one on one, also presented the material so
that it started as more concrete questions
(find answers directly in the text) and moving on to
more infered questions. Having multiple choice also
helped him focus in on what he needed to do."

I asked the parent:

What particular test was used for (names child) to
assess reading comprehension if you know?

Parent replies:

"A lot was informal, but also the GORT 4. It is
a relatively quick test, and can be given yearly to
see progress."

GORT 4 stands for Gray Oral Reading Tests 4th Edition

I asked the parent:

Is there anything in particular that is helping
(names child) now with his private placement setting
with respect to reading comprehension in school?
I assume that he is enrolled in private school?

Parent replies:

"Part of it is his teacher being able to immediately
understand his reading level, and gear material toward
it. Also, he is in a private school that does not
accept students with behavioral issues, so there is no
stopping the class to deal with something else. He
also works on comprehension skills with the speech/
communication specialist. They use everything from
being in the class during reading time to do some
one on one, to playing games such as Apples to Apples
to work on association, inferencing, synonyms, etc."

Parent told me that there are several different
versions of the Apples to Apples game available,
plus variations on how to play:

Apples to Apples Junior
Apples to Apples Kids 7+
Apples to Apples Bible Edition
Apples to Apples Disney Edition



WHAT IS A READING SPECIALIST?

A reading specialist is a professional who has
additional training and expertise in reading that
goes beyond that of a teacher.

Educational requirements for reading specialists
vary from state to state.

A reading specialist must typically have a bachelor's
degree or a master's degree in reading and literacy.
They must focus on specialized reading and also have
a teaching certification. In addition the reading
specialist must complete a reading specialist
certification examination.

Reading specialists have expertise in assessment and
diagnosis of students who struggle with reading. They
are able to use a variety of methods to assess the
student that include formal and informal testing as
well as observing the child in the classroom and also
working directly with the child on various reading
tasks.

A reading specialist is able to provide a thorough
reading assessment of the child, then provides
instruction and works with the teacher to develop
and implement an effective reading program to meet
the needs of the student.

A reading specialist may also work one-on-one with
a student on specific reading skills.

Parent of child with partial ACC said:

"People are not always aware that some traditional
tests of reading comprehension sometimes do not show
how serious a problem can be. (You will not have that
problem with a neuropsychologist, I'm sure.) In the
public schools the testing for us always came out
pretty good, but was obviously (to me, not them) not
accurate. With the neuropsych we were able to get a
much better evaluation as well as a specific diagnosis
of LD for reading comprehension, in addition to
the OHI."

OHI = Other Health Impairment
LD = Learning Disability

NEUROPSYCHOLOGICAL EVALUATIONS:

Many parents who have a child with ACC highly
recommend having a Neuropsychological Evaluation.

The Evaluation can be costly, however, parents
report that the information gained from having
a Neuropsychological Evaluation for their child
is invaluable and worth the cost.

A Neuropsychological Evaluation can accurately
assess a child in the area of reading and
comprehension, diagnose problems, provide specific,
detailed information and suggest intervention
methods.

In addition, a Neuropsychological Evaluation will
also thoroughly assess the child and give insight
and intervention methods in all educational areas,
cognitive as well as behavioral.

In her document titled "Educational
Suggestions For Children With ACC: A Beginning",
Kathryn Schilmoeller, Ph.D. and parent to grown son
with ACC wrote:

"If I were in a position of advocating for Matt
in the public schools at this point, I would urge
the school to have a neuropsychological evaluation
done. We found such an evaluation to be invaluable
in terms of giving us some concrete suggestions
for the teachers working with Matt. My only regret
is that it took us until Matt was 15 to figure out
that that would be helpful. In our case, after the
testing was completed, Gary and I first had a
session with the neuropsychologist to go over the
results and ask questions. Then we had the
neuropsychologist attend a PET (pupil evaluation team)
meeting to go over the results. We video-taped this
session so that the video would be available for
his current teachers to review and new members of
Matt's team to view as they started working with
him. The school paid for all of this as part of
his triennial review."

Is there a particular age that is best for a child
to have a Neuropsychological Evaluation?

Second Parent of a child with ACC writes:

"I have heard mixed opinions on when a neuropsych
eval is worthwhile. My neuropsych said really
earlier than about 8 or 9 is just too soon, but
others have said as early as 4. Also, for my
child we are on a 2-3 yr plan. Lets set up 3yr
goals and then re-evaluate. Maybe right before
high school. Then again right before graduation.
He stressed, for my child, not to set goals too
long range. We do not know what the future holds
so let's not try to set our sights on college,
let's look at middle school and jump off the High
School bridge first then the college bridge.
It made it all look so much less daunting!"

Third Parent of a child with ACC writes:

"My son had a private neuropsych eval when he was
about 6 1/2 years old and in first grade. We
arranged this ourselves and finally convinced the
insurance to pay for it (after countless phone
calls and help from the doctor's billing office).
Having him evaluated was one of the best things
we've done on this ACC journey. The eval gave us
additional insight into my son's learning style
and needs. It also gave us a "professional's"
opinion that we could take to the school to
convince them that we did indeed know what we
were talking about. We found it very helpful as
we were crafting his initial IEP, halfway through
first grade. I pull out the page of recommendations
every time we have a meeting with the teacher or
the school."

Fourth Parent of a grown child with ACC shares
her viewpoint of a Neuropsychological Evaluation:

"We found that her neuropsychological
evaluation was extremely helpful. In her case,
it did pinpoint her reading difficulties (for
the first time), giving her a diagnosis of
"learning disabled for reading comprehension"
to go along with her OHI diagnosis provided by
the MRI. But that was just a small part of the
findings. The report also included all the
pertinent results of all other testing she had
had done over the years, as well as input from
teachers and from us.

She had been tested twice at school, and she also
had a private evaluation. They all found that her
academic levels were all at or above grade/age level.
Her IQ scores were quite variable, from high average
to borderline mental retardation. They didn't evaluate
anything else. None of those findings were helpful
at all. Her problems were attributed to "temperament"
or "anxiety," both of which were ludicrous to anyone
who knew her at all.

The neuropsych testing included similar intelligence
and academic testing, but other kinds as well. It
was far more detailed and accurate, assessing and
discovering learning deficits and problems that the
public school and previous private evaluations had
not. And the IQ results were far more reasonable,
in the low average range. She was also found to have
significant deficits in problem-solving and
higher-order thinking skills and "executive
functioning"--frontal lobe--skills.

She was evaluated within the year after her initial
ACC diagnosis, at age 17. I have heard that about
age 7 is the lower end of the age range for this
kind of assessment, and I think that would have
been the perfect age for her. This is when her
problems really began showing up, and when we started
looking for answers. I think that if we'd have had
it done that early, we would surely have wanted
another one when she reached 7th grade or at least
by high school, to track progress, to see if there
were any other findings that would become apparent
by that age, and to address recommendations for the
type of learning required for secondary success.
Of course this is all just speculation on my part.

The report outlined ways she could learn best and
gave recommendations for teachers."

This same parent goes on to tell additional
ways that having a Neuropsychological Evaluation
benefited her daughter:

"Even though we got this report so late in her
school career, I'm very glad that we had it done.
We used it to help her qualify for SSI benefits,
and were told by the person managing the case
that the evaluators were extremely impressed by
its thoroughness, which was far beyond anything
they'd have had done. She would never have
qualified on the first application without it,
and I doubt she'd have qualified even on appeal
if not for the information it contains. It was
also just what she needed to qualify for
accommodations and help from the college. So
for those two post-high school uses, she got it
just in time."

To give an example of some very specific information
contained in a Neuropsychological Evaluation for one
particular child who has ACC, I am including pertinent
sections of that child's Evaluation and findings.

The Psychologist wrote:

"My evaluation consisted of an initial interview
with Jamie's parents, (names parents), a review of
school and medical records provided by (names parents),
standardized behavior rating scales completed by
Jamie's parent and several teachers, and a selected
battery of tests with Jamie. Following the evaluation,
I had the opportunity to discuss my findings at length
with (names parents) during a feedback conference."

The specific tests used in the Evaluation were:

Wechsler Intelligence Scale For Children-Fourth Edition:

Full-Scale IQ
General Ability Index
Verbal Comprehension Index
Perceptual Reasoning Index
Working Memory Index
Processing Speed Index
Subtests Block Design
Similarities
Digit Span
Picture Concepts
Coding
Vocabulary
Letter-Number Sequencing
Matrix Reasoning
Comprehension
Symbol Search
Information

Woodcock-Johnson Pyschoeducational Battery-Third Edition
Test of Achievement:

Broad Reading
Brief Reading
Basic Reading Skills
Letter-Word Identification
Reading Fluency
Passage Comprehension
Word Attack
Broad Math
Brief Math
Math Calculation Skills
Calculation
Math Fluency
Applied Problems
Brief Writing
Spelling
Writing Samples
Academic Skills
Academic Applications

Gray Oral Reading Tests-Fourth Edition:

Oral Reading Quotient

Comprehensive Test of Phonological Processing:

Phonological Awareness
Rapid Naming

Additional Tests Administered:

Wisconsin Card Sorting Test
Boston Naming Test
Controlled Oral Word Association Test
Grooved Pegboard
Delis Kaplan Executive Function System
Wide Range Assessment of Memory and Learning-Second Edition
Child Behavior Checklist
Child Behavior Checklist-Teacher Report Form

The Psychologist wrote:

"Jamie's composite performance on the Gray Oral
Reading Tests-Fourth Edition, a functional reading
measure tapping oral reading skill development,
was below average (Oral Reading Quotient = X).
Jamie experienced particular difficulty on
variables from this measure related to fluent
reading, while his reading comprehension composite
fell in the low end of the average range.
Evaluation of memory functions indicated that
Jamie experiences significant difficulty with the
initial acquisition and retention of newly presented
information. His memory weaknesses are in excess of
what would be expected from a child with his level
of cognitive ability, and his weakness with the
acquisition of new information extends to both
verbal and nonverbal memory modalities. Jamie's
composite verbal memory performance from the Wide
Range Assessment of Memory and Learning-Second
Edition which correlates with the declarative
memory demands often placed on a child in the
classroom clustered far below average compared
to others his age (Verbal Memory Index = X).

Jamie is somewhat slower to complete activities,
and he is sometimes slower to organize his response
to specific tasks. Like general language weakness
and memory issues, these issues of performance
efficiency also likely stem from his neurological
conditions including agenesis of the corpus callosum
as well as epileptogenic activity. Given the extent
of Jamie's agenesis of the corpus callosum, cortical
dysplasia, and the additional complicating factor of
epileptic activity in his brain, from a cognitive
perspective it is remarkable that Jamie has developed
as well as he has.

From my perspective, I would strongly encourage
the educational team to consider Jamie's
primary disability as one that is characterized
by Jamie's neurological conditions including agenesis
of the corpus callosum, cerebral dysplasia, and
the presence of epileptic activity in Jamie's brain.
Due to the direct correlation between these
neurological conditions and Jamie's neurocognitive
functioning which forms the basis for Jamie's
educational development, I believe that Jamie can
be appropriately considered as meeting
special-education eligibility criteria under the
handicapping condition of Other Health Impairment
(OHI). Because this is most explanatory of Jamie's
struggles, I believe that the educational team
should consider making OHI the primary code for
Jamie. As I discussed with (names parent),
children with neurological abnormalities often do
not fit neatly into a pre-existing special-education
category such as Learning Disability (LD). While
Jamie was determined eligible under this code based
on the available information at that time, new
information regarding his neurological conditions
is now available that should supercede the LD code.
Clearly Jamie does not exhibit a learning disability
in the sense that Jamie's current level of academic
skill attainment is significantly discrepant from
Jamie's overall level of cognitive ability. Because
Jamie's neurological conditions directly result in
weaknesses in academic skill development I do not
think that a discussion of Learning Disability as
traditionally defined is particularly relevant to
Jamie's case, as Jamie's learning difficulties
clearly stem from known neurological issues that
directly affect those neurocognitive processes
important for efficient learning. Due to the nature
of the neurological processes involved and given
that epileptogenic activity is an active and dynamic
process, Jamie may sometimes perform in a manner
that is quite inconsistent from one day to another.
Due to difficulty remembering some things, it would
not surprise me if parents and educators had the
experience of Jamie seeming to know something
one day and not recalling it very well the next.
On the topic of memory inefficiency, it is
important to understand how this can impact a
child's performance at school. First, it is
important to recognize that memory inefficiency
can limit the amount and completeness of the
information that the child is able to initially
take in. Sometimes multiple exposures of the
information, and multiple modalities of information
exposure, are necessary to give the child their
best opportunity to successfully encode the information
presented to them. Similarly, children with
inefficiency of learning and memory due to
neurological issues are at significantly greater
risk for being inconsistent in their retention
and later recall of information. Sometimes,
altering the way a question is asked can be
successful in accessing information that the
child has retained but is not able to spontaneously
draw out of their memory (e.g., asking a multiple-
choice question versus a fill in the blank question).

Additional strategies for dealing with Jamie's memory
inefficiencies include:

• Multiple repetitions of information is a
necessary, though sometimes mundane, component
of ensuring that information is satisfactorily
encoded and retained. For children, often the
trick is to be creative in getting the child to
pay attention and put forth effort on an otherwise
tedious task. Sometimes incentives (rewards) can
be offered to a child to help keep them motivated.
Other children simply need frequent breaks in order
to stay motivated to repeat information over and
over. Making the activity of repetition novel and
fun can go a long way in boosting a child's
motivation to go over information multiple times.
Incorporating hands-on activities, using manipulatives
(objects), and using music are some ways that a
child's interest in an otherwise mundane activity
might be boosted.

• Priming - discussion of related topics and how
these may relate to the information at hand. Priming
is especially useful during recall tasks. Previewing
is a type of priming that is done before exposure to
the information in order to activate neural networks
that may then link to the information at hand. Using
recognition memory tasks is also a method of priming.
For example, if a child has trouble spontaneously
reproducing their spelling words, using a multiple
choice format is sometimes helpful.

• Using authentic (real-life) tasks - experiential
learning is typically more efficient than situations
in which the student is given information and expected
to remember it. Experiences that are most salient and
meaningful to Jamie are likely to be remembered best.
Unfortunately, pure skill-based academic tasks
(e.g., reading skills) can be somewhat difficult to
translate into experiential tasks, though reading
practice is easy to translate into meaningful daily
activity.

• Rhymes, chants, and music - this can be especially
helpful for memorizing and retaining relatively small
amounts of factual information.

• Movement - involving movement into learning and
rehearsal of information can sometimes be effective.
For example, some people study effectively by pacing
and rehearsing information aloud to themselves.

• Minimize anxiety - if a child becomes excessively
anxious and/or perceives himself to not be competent
to remember something or retrieve some information
from memory, clearly this can interfere with optimal
performance. Thus, anxiety-producing conditions should
be kept to a minimum. For example, some children become
very anxious during timed activities. A little anxiety
can enhance performance, but more than a little anxiety
can interfere with task performance. For Jamie, it will
be important to identify and minimize conditions that
unnecessarily or artificially create anxiety when this
is not inherent to the task (e.g., allowing Jamie to do
math calculations but not necessarily imposing a
stringent time limit if this tends to create a great
deal of anxiety for Jamie)."

This is only a glimpse of the child's Neuropsychological
Evaluation. The complete Evaluation consists of
a total of sixteen pages. It contains very detailed
information regarding background history, test
results, behavioral observations and results of
behavior rating scales as well as detailed
conclusions and recommendations.

test scores have been replaced
with an "X" for privacy.



READING COMPREHENSION SUGGESTIONS:

A Parent who is also a teacher and has a grown
daughter with partial ACC writes:

"Improving comprehension is a tough nut to crack.
We have found a few things over the years that
seemed to help us.

Choice of books is one--those that are written in
a straightforward, sequential way seem to be less
confusing.

And choosing books that have a high emotional
content or are otherwise motivating helps.

Book series are good, because they often offer
familiar, predictable characters and situations.

Reading aloud, even past the age when this is
traditionally done, is often better than silently,
maybe because it involves more modalities.

And I really believe that reading to follow
directions is valuable. I think the benefit comes
from the feedback kids get when they do or don't
follow the directions correctly."

MOTIVATION FACTOR

My best friend has two boys. They do not have
ACC.

When her boys were younger and already knew how
to read she wanted to encourage them to read more.
Both boys loved playing video games. You could say
they couldn't get enough of it.

I got them a subscription to their favorite video
game magazine--the kind that is packed full of tips,
strategies and things about the game that the average
kid on the outside wouldn't know.

My friend told me that her boys couldn't wait to
get that magazine in the mailbox. She said when
it arrives they read it from cover to cover
with great anticipation looking for all the
coolest tricks and tips for the video game.

Well, those boys got me hooked on playing the
video game. I would call and ask them for some
of those secret tips that they learned while
reading their magazine. It was fun.

Motivation is an incredibly powerful and
meaningful factor in helping all people excel.

For the child who is struggling to read or who
has other learning challenges, motivation is all
the more important.



THE POWER OF MOTIVATION!

Look out world. Motivation just kick-started
the learning process.

Parent of grown daughter with partial ACC wrote:

"I think it really helps to find motivation for
reading a book. Or maybe to find a book to match
a child's motivation."

This same parent shares a motivational story about
her child who was in high school at the time. Her
daughter had tremendous difficulty with reading
comprehension as a child and still struggles today
as a young adult. Parent writes:

"When our daughter was younger she became infatuated
with dogs. It was all dogs all the time. (As a
cat person, I had tried to raise her right, but you
know how kids are!). She collected stuffed dogs,
she trained dogs, she showed dogs, and she read
about dogs in fiction, dog magazines, and her AKC
"bible." Then one day we went with some friends
to a dog show in (names town). We saw a really cute
"midsize" dog, and wondered aloud what it could be.
She said she thought it might be a Nova Scotia
duck-tolling retriever. Well, we had a good laugh--
like there could be a dog with a name like that!
What a sense of humor! Then we saw a couple more,
so finally she asked an owner, and you guessed it--
they were indeed NSDTR's, the first ones she'd ever
seen in the flesh. She had learned that and much
other dog information by reading above her
comprehension level; motivation matters."

The child's passion and interest in dogs together
with her strong motivation allowed her to read,
retain, remember and retrieve information.



Another Parent of a child with partial ACC writes:

"When she was about 10 or 11 her reading age was
at about 7. She desperately wanted to read Harry
Potter and began the first book with a great
struggles. She doggedly persevered and many
months later she finished it. I watched her
reading improve dramatically over those months
with a little bit of intervention along the way.
She then read the others over a long long time
and reread them all several times."

"The mediocre teacher tells. The good teacher
explains. The superior teacher demonstrates.
The great teacher inspires."
--William Arthur Ward

GET TO KNOW THE CHILD'S MOTIVATIONS AND
LEARNING STYLES:

When you combine a child's motivation with their
strengths and allow this combination to be the
driving factor in meeting their challenges head on,
you will have a much greater chance of seeing the
child make progress, build self-confidence and
have fun learning.

It takes time for a teacher to get to know
the student; their strengths, weaknesses,
abilities and personality....but knowing a
person well allows you to approach teaching
methods and apply learning tools that are
geared specifically for that particular child.

As a parent you have the advantage of knowing
your child better than anyone else. Tell the
teacher your child's strengths, abilities,
weaknesses, behavior challenges (if any) and
their motivations! Put it in writing. This
allows the teacher to better understand your
child and gives the teacher an advantage of
being able to gear very specific teaching
methods and reading materials for the child.

COMMUNICATION BETWEEN TEACHERS & PARENTS:

Communication between the teacher(s) and parents,
therapists, special education staff and one-on-one
aide (if a child has an aide) is crucial to help
ensure that the teaching materials and methods are
benefiting the child and to facilitate the child's
progress. Keep the lines of communication open on
a continual basis throughout the school year.

It is equally important to talk to the child and ask
them how they feel about reading. What are their
frustrations? What do they like and dislike?

Be interested in the child's input, their feelings,
and in what they have to say. By giving a child
this respect and then genuinely listening to them
it shows you care about what they have to say.
It may very well open the door to a lot more input
from the child if they feel like their feelings are
being considered and validated.

The teacher/parents/student team effort approach
to teaching-learning reading and comprehension is
one that will help generate ideas and positive
teaching strategies for the student.

ADVICE FROM A PARENT:

"Noah learned to read at age 10.
There were times when his teachers were
frustrated that he was not learning fast enough,
but in the end it came. I think the key is not
to assign a typical time line to our kids.

The YEARS of work has been soooo worth it.
My advice would be to think outside of the box
and keep at it."



MULTIPLE CHOICE ANSWERS:

Some kids who have ACC may know the answer to
a question but may not be able to provide the
answer point blank. This method of questioning
asks the child to recall the answer from memory
which may be very difficult for some kids who have
ACC.

But if you ask the same question and give multiple
choice answers, the child's memory may be jogged
allowing them to more easily find the answer to
the question.

Many kids who have ACC are concrete thinkers
and may learn more easily if the materials are
presented as concretely as possible. "If it is
not written exactly in a passage" (as one
parent wrote earlier) a child may struggle to
find the answer.

Psychologist wrote:

"Sometimes, altering the way a question is asked
can be successful in accessing information that the
child has retained but is not able to spontaneously
draw out of their memory (e.g., asking a multiple-
choice question versus a fill in the blank question)."

A parent shared earlier how her child's Reading
Specialist used multiple choice questions and other
teaching methods:

"Lots of one on one, also presented the material
so that it started as more concrete questions
(find answers directly in the text) and moving on
to more infered questions. Having multiple choice
also helped him focus in on what he needed to do."

READING TO FOLLOW DIRECTIONS - Fun Activities

You can find some very fun and creative ways to
help encourage a child to read not because
they have to read but because they can't wait to
read. For example:

Parent and also teacher of child with partial ACC
wrote:

"I think it's a great strategy to do any activities
that require reading directions and following them.
Especially in real life: Cooking from a recipe,
building something, making a craft, anything that
requires a kid to act on what s/he reads (especially
with a minimum of pictorial cues). We didn't really
stumble upon this method until she was in college,
but it could be done much earlier.

Parents might start out with prereaders or beginners
by modeling it--reading the directions themselves
and showing how following them produces a pleasing
result. The key is to have written directions.
You could even take pictorial directions and write
them out for use in making something. Eventually
you can move on to shifting some of the
responsibility for the reading, until the child
can do it alone."

INCENTIVE TO READ



Find an incentive that sparks your child's
interest then creatively sprinkle some reading in.

When you give a child incentive to read it's
like sending them off in search of the golden
ticket to Willy Wonka's Chocolate Factory or
whatever appeals to your child.

Make your child's mission so much fun that they
will gladly read for the sheer excitement of
finding the pot of gold at the end of the rainbow.

Late one evening while working on this document
I came across a website with information written
by Dr. Diana Sharp. What she shares about kids
and reading (and the way she writes) is a burst
of inspiration.

Diana Sharp, a young children's reading specialist,
answers parent's questions:

Think outside -- and inside -- the book

and

Bringing Books to Life

"The best teachers teach from the heart,
not from the book."
--Author Unknown



READING OUT LOUD WHILE THEY FOLLOW ALONG:

A pattern that appears to be very common in a lot
of kids and some adults who have ACC is that they
benefit from hearing the reading material read
out loud by someone else while they follow along
or by reading out loud themselves.

The combination of both hearing and seeing the words
(sometimes with the text being highlighted) appears
to help the child and adult with ACC to better
understand what they are reading.

First Parent said:

"We found that reading out loud to him, and also
having him read the same material was helpful
to further his understanding. (multisensory approach)"

Second Parent said:

"But I would say that Kelsie is still much better
able to comprehend things if they’ve been read to
her than if she reads them herself. For this
reason, whenever a homework assignment involves
reading something and then answering questions
about it, I have her read it first. Then, I read
it to her. (Sometimes we stop and talk about it
as I read it to her.) And then she works on
answering the questions."

Third Parent said:

"Over the years we have developed a method of
reading literature. She reads the book aloud to
us, one chapter at a time. That way we are at
the same place in the story that she is, and she
gets both the visual and auditory benefits.
We can discuss new words, plot devices,
difficult concepts, background, and other things
that may be confusing. She keeps a notebook in
which she writes a short summary of the chapter
as soon as she's read it."

Adult with ACC said:

"In high school I had teachers read the
novels textbooks with me. I read/comprehend the
text much better when I hear and am able to follow
along."

"Now that I am in college I use kurzweil
to read textbooks/assignments and tests."
..."Kurzweil...highlights what is
being read/spoken."

BOOKS ON TAPE--AUDIO or VIDEO VERSIONS:



Consider trying an audio or video version of a
book to see if this method of reading may be helpful
for your child who has ACC or for yourself if you
are an adult.

Adult with ACC said:

"It was not until gr.8 that my new SERT
(Special Education Resource Teacher)
had the bright idea to get my books I had
to read on tape." ..."I read/comprehend the
text much better when I hear and am able to follow
along."

The Teacher of a student with ACC wrote:

"Including technology I will seek out the
video or audio version of a book we are studying in
class."

One parent writes:

"Also there's no point in insisting that the child
must read the book if the child cannot bear it,
especially if reading for enjoyment. It's a bit
harder with compulsory school texts but sometimes
there are movies or recorded versions to help give
the texts meaning."

PROCESSING INFORMATION TAKES TIME

Some people who have ACC need extra time to process
the information that they are reading and learning.

Parent wrote:

"In the beginning his comprehension didn't seem to
be there at all. But as time went by I noticed
that if he was asked on cue it was very difficult
for Alex to retell what he just read or was read
to him. He needed time to absorb the information
before being able to deliver it."

The Teacher of a student with ACC wrote:

"Processing the information from a story or reference
book takes time. A strategy for helping the student
with ACC is pre-teaching a concept. Being able to
prepare the student by teaching concepts or reading
a book before the class does works very effectively."

SLOW RESPONSE TIME IN SOME PEOPLE WHO HAVE ACC



The corpus callosum has over 200 million nerve
fibers. The brain communicates through those
millions of fibers by sending messages back and
forth between the right and left hemispheres of
the brain.

When the corpus callosum is missing or partially
missing it may affect people in a variety of ways
such as:

a slower processing time;
a difficult time retrieving information;
a delayed response time; and
difficulty finding the right words

The information that a person has learned is stored
in the brain but the main pathway (corpus callosum)
that sends the messages with the information is
missing. So the brain has to find a detour or
alternate route (other pathways) so the information
can be retrieved. This detour process can take time.

One parent wrote:

"Communication is a bit of a struggle for him.
He has a processing delay of about 20-30 seconds
when answering questions."

Another parent wrote:

"Our thoughts have always been that the information
went in, but has a hard time finding its way back
out. It’s as if tidbits of information were stored
on index cards in her head, but the cards aren’t
organized, so she can’t find the one she needs to
answer the question. It will come out much later
when something else triggers a memory about that
information."

Adult with ACC said:

"If I am answering written questions in class it
takes me a long time to complete the work. I do
not do well with instant recall. To remedy this
so that I do not lose class participation marks,
I am e-mailed the questions/text pages before
class and thus able to participate in the
discussion with my peers."

INTERESTING OBSERVATION: Personal Connection to
Characters in a Book & Using Different Voices

First Parent wrote:

"I have discovered that Kelsie remembers far more
if I read the chapters to her first because I tend
to use different voices and tones for the characters.
For her, using different voices or accents helps her
understand which character is doing the speaking and
therefore follow the storyline with a little more ease."

Second Parent wrote:

"We would read books to her when she was younger but
we ALWAYS had to change all the characters to names
of people she knew or she had a tough time following.
She would forever ask, "Wait, who said that?" Or "Who
rode the bike?" etc..."

Third parent wrote:

"Over the last few years he has started reading
for enjoyment. He loves Star Wars and Disney.
He is quite hilarious when he reads, because he
does all the different voices."

Fourth parent wrote:

"She would 'tolerate' having a story read to her
before bed and was 'encouraged' to enjoy listening
to kids' novels with chapters as she got a bit
older. Liked it better if I used funny voices for
the characters. They always needed a lot of
explanation and had to be pretty realistic."

OBSERVATION: Science and Social Studies Challenges

One parent wrote:

"Kelsie’s toughest subjects are history and
science. Our constant battle is finding ways to
make the information relate to her personally."

Second parent wrote:

"The "content area" classes like science and
social studies were a nightmare. We spent hours
every night going over material and reteaching
things to help her pass classes."
(This pattern continued through high school)."

Third parent wrote:

"In school homework I help him sentence by sentence
and I show him what it means visually especially
if it is about science in anyway I can and it
clicks for him and he can answer any questions
about it."

Many people who have ACC find it not only helpful
but very necessary to remember information by
associating it to something meaningful and personal
to them in order to be able to memorize the information
effectively and recall it at a later time.

MEMORIZING INFORMATION BY ASSOCIATION:
USING MNEMONIC DEVICES.

Mnemonic Devices = a device used to help you
remember things by associating it with something
familiar and meaningful.

A few examples:

Rhyme:

In fourteen hundred and ninety-two
Columbus sailed the Ocean Blue.

Acronym:

The Great Lakes:

Huron,
Ontario,
Michigan,
Erie,
Superior = HOMES

The Psychologist wrote:

"• Rhymes, chants, and music - this can be especially
helpful for memorizing and retaining relatively small
amounts of factual information."

Adult with ACC wrote:

"Other things that help me to remember content are:

creating rhyms/jingles/actions to remember concepts,"

Second Adult with ACC wrote:

"When I have to memorize something I have to put it
to a song, or write it out on colored note cards."

First parent wrote:

"Although I think it is not uncommon for kids to
remember things more easily if it means something
to them it seems to be key for her. We would read
books to her when she was younger but we ALWAYS had
to change all the characters to names of people she
knew or she had a tough time following. She would
forever ask, "Wait, who said that?" Or "Who rode
the bike?" etc...
But even with studying. She remembers much better
if she has a personal connection. I do think that
is normal but perhaps not so mandatory with other
kids.
When she was trying to memorize the states and
capitols the only ones she could remember would be
ones we made interesting to her, personally. She
likes to make up her own ways to memorize. Many
make no sense to me but if it makes sense to her
I guess that is all that matters. Just this week
she was studying for History, Japanese culture
vocabulary. A few words were Shamans, Megalopolis,
Samurai, Trade Surplus, Shogun. There were 14 words
in all. A Shogun is the highest ranking Japanese
warrior. She said, oh, there are 3 S words and Shogun
is the 3rd in alphabetical order. 3 is the highest
number of 1,2,3 soooooo Shogun is the highest warrior.
Ummmmmm, okaaay. Whatever works for you baby!!!
Megalopolisis a bunch of cities that have grown
together to form a large city. Megalopolis looks
alot like Minneapolis and she has cousins who lived
in Minneapolis. Her cousins grew up are now big.
So that makes TOTAL sense!!! Of course she still
flunked the test cuz we could not find enough ways
to make sense of Japanese vocabulary! Most of our
days are filled finding ways to make learning
"stick" for her. Songs are also a great way
to facilitate memorization. I can make up a song
for almost any study topic. Most involve me making
a fool of myself. That also boosts memorization,
apparently."

Second parent wrote:

"My daughter has used mnemonic devices like those
mentioned by (names parent above) all the time, since
she was very small. They were essential for her to get
through memorization tasks. She could remember, for
instance, if she put the words in alphabetical order,
and then memorized which letters they started with.
Or if she had a special way to think of each one,
a cognate, or something memorable or silly. She has
always delighted in the sounds of words and their
relationships, and we used that to her advantage too.
These help many kids but can be critical to our kids'
remembering. It is a way to pass tests. She has used
it for college classes.

When she was 4, she went to a church preschool.
The kids had to memorize a Bible verse for every
letter of the alphabet. She had a hard time.
They were King James, so really didn't make much
sense to any preschoolers, I don't think. I remember
setting some of them to rhythms to help her learn
them, kind of like raps, similar I guess to the songs
some people have used to help their kids learn.
I have no idea what the ladies running the preschool
thought about her unusual delivery of the verses!
But at least she finally did learn them all."

Third parent wrote:

"Our constant battle is finding ways to make the
information relate to her personally. Without some
kind of personal connection to the information, come
test time, it’s as if the teacher had been speaking
in a foreign language for two weeks."

I asked the third parent if her child's need for
some kind of a personal connection to information
is similar to what the first parent above shared.

Third parent replied:

"Of the text referring to the student with the
Japanese culture vocabulary, the part about Shogun
being the 3 word in alphabetical order of the “S”
words is far too complex a connection for Kelsie
to manage. However, the part about Megalopolis being
like Minneapolis and having grown cousins who live
there is basically the type of “personal connection”
concept that seems to work for Kelsie.

Concerning the use of songs, using familiar tunes
and following the pattern of repetition of the words
seemed to work well. We used the tune of Frere Jacques
to memorize the 9 times table and it worked great.
Each part of the verse is repeated twice so you get
the following (original song words appear beneath the
multiplication version so you can see how they match up):

9 times 1, 9 times 1; 1 times 9, 1 times 9
(“Frere Jacques, Frere Jacques; dorme vou, dorme vou?”)

9 is the answer; 9 is the answer
(“Sonnez la matines; sonnez la matines”)

9 times 1; 1 times 9
(“Ding, ding, dong; ding, ding, dong”)

But once used for the 9s, we couldn’t use it for
another multiplication table because the words for
the 9s were already tied to this tune in Kelsie’s
head. Trying to associate the same tune to another
multiplication table likely would have resulted in
incorrect remembrances.

And believe me, we needed to be able to illustrate
that it doesn’t matter in what order the numbers
appear, the answer will still be the same.
8 X 2 is 16 and 2 X 8 is 16.

Kelsie learned the multiplication tables for 2, 5
and 10 fairly quickly. Most kids can count by twos,
fives and tens. But she didn’t get the relationship
that the answers in the 4 times tables were twice
the answers in the 2 times table. So there was a
slight disconnect there in terms of relating one
set of multiples to another. She did eventually
learn all of the multiplication tables
(through 10 X 10), but it took a good deal of
repetition...and I believe it was truly a rote
learning experience. I think she would probably
have to have to think pretty hard to explain that
what is meant by 6 X 8 is 48 is that there are six
groups which each contain 8 items and represent a
total of 48 items. But she can pretty reliably give
you the correct answer whenever you ask her
“What is ‘this number’ times ‘that number’?”

For spelling words, chanting or rapping the
spellings worked fairly well at times. And
thankfully, if she did chant or rap the spellings
during any of the spelling tests, the teacher
never said anything to us!"



Songs For Teaching is a great website and resource
for educational music. They offer songs for
a wide variety of educational topics including
Science and Social Studies.

Social Studies Songs:

The Names of the States Song:
listen to song clip
song lyrics

The 50 States and Capitals Song:
listen to song clip
song lyrics

Science Songs:

Water Cycle Song:
listen to song clip
song lyrics

Senses Boogie Song:
listen to song clip
song lyrics

MULTISENSORY APPROACH TO LEARNING



Some kids who have ACC respond well by using
a multisensory approach to learning.

Multisensory teaching means that you involve
two or more of their senses in the learning
process.

Orton-Gillingham is one method of teaching
reading to kids that uses a multisensory
teaching approach.

One parent wrote:

"My son, Nick, is now in second grade. The best
thing we’ve done for him in regards to reading
was finding him a tutor that teaches him the
Orton-Gillingham method of reading. He learns the
“rules” of decoding words. It’s a very interactive
program that includes repetition, writing, and
spelling. He has tutoring 2 night/week for one
hour each."

Another parent wrote:

"Now 12, she is in 5th grade at a private school for
kids with learning disabilities. The school is an
Orton-Gillingham certified school and they use
a multisensory method to teach every subject..."

A lot of kids who have ACC also struggle with
math. Touchmath is another multisensory
method of teaching that involves using a multisensory
approach to help teach math. Several parents who
have a child with ACC have used Touchmath and have
seen positive results using this teaching method.

There are many ways that you can incorporate a
multisensory teaching approach.

The key though is to take into consideration the
child's specific needs and learning style as well
as their strengths and abilities.



Using tactile letters and numbers for a hands on
experience may be helpful for some kids who have
ACC to learn their alphabet and numbers as opposed
to simply just seeing them.

If a child isn't easily responding to visual input
alone, add some auditory and tactile (touch) input.

Another parent wrote:

"His teacher was given specially adapted books
to read with her children. The books were
enhanced with raised lettering for the children
to touch and objects for the children to hold.
At points throughout the book, the teacher
would ask a question about the page she had just
read and the child would choose from pictures
or objects inserted in the book to answer the
question.

One book Ben read talked about rain. The adapted
book came with a small spray bottle and at that
point in the book, the reader sprayed water into
the air.

The story comes alive when objects can be used to
demonstrate what is being read."

If the child is struggling to read and sound out
words by sight, explore other creative ways to
open that child's world so that it will speak to
them on their learning level.

That same child may respond more readily if
the book becomes an audio book or game on a
computer where they not only see the words but
are able to hear the words, see pictures,
interact with the book, click on words and
sounds of words over and over and hear them
as often as needed.

Many kids who have ACC require a lot of
repetition in order to learn something.

Incorporating music and a song about something
that a child is trying to learn can also be a
helpful teaching tool that speaks to their
senses.

Music often times helps a child learn something
more easily and it also helps in the memory
retrieval process once it is learned.

"E" Song - Hooked on Phonics




My child, Matthew, has complete Agenesis of the
Corpus Callosum. He is 16 years old.
[diagnosed with ACC at age four months]

Matthew does not read yet. He knows a few
of his letters. He is non-verbal. He has a
handful of spoken words. He uses some basic
sign language and a Dynavox V communication
device.

Matthew is highly motivated by a couple of things:



and



Trying to teach Matthew letters with flashcards
or from a book does not work. A flashcard would
most likely go flying in the air or sailing
across the room.

Matthew loves books. He has been quite fond of
books since he was very young. He will sit and
look at books and he especially likes it if I read
a simple child's book (or talk about the pictures)
with him.

Matthew doesn't point to pictures in books even
though he knows the objects. He will reach out and
tap the page thinking that is what I am asking
him to do but he won't look and search for an
object on the page in a book when I ask him to
find a familiar object. He does not point at
or touch the specific object.

But if you put Matthew in front of a computer
(his strength) and give him an educational
reading computer cd rom game (his motivation)
he will work on finding the letters to make
simple three letter words among many other things.



Elmo's Reading Basics cd rom

Product Description:

"Choose a book and play any of six different
reading games with Elmo!

Easy, medium, and hard games keep things
interesting. Learn about letters, build words,
and complete sentences, all while delighting
in Sesame Street animations and music throughout.

Explore six different activities with Elmo!
Pick the one you want, and jump in to learn
fundamental reading skills with favorite Muppets.

History Mystery: Help Sherlock Hemlock get clues
to solve mysteries by matching beginning sounds
to the right words.

Super Grover's Comic Book: Combine beginning
and ending sounds to form words and help Grover
perform daring rescues.

Beam Me Up Up Up: Can you find the things the
Martians need? Click on the object that begins
with the right sound.

Cooking with Cookie: Identify letters and create
words in Cookie Monster’s kitchen.

Zoetry Poetry: Make rhymes with Zoe and Elmo.
Pick the word that will finish Zoe's poem!

Elmo's Wild Kingdom: Develop early comprehension
skills by helping Elmo complete simple sentences.

Early learners build confidence with the encouragement
of their favorite characters. The voices of Sesame
Street characters guide children and provide feedback
throughout play."

Matthew's Favorite book to choose in Elmo's Reading
Basics cd rom is "Cooking with Cookie":



In "Cooking with Cookie", Elmo asks the child to
choose a level:

Easy, Medium or Hard.

Easy = 3 letter words
Medium = 4 letter words
Hard = 5 letter words

When the child plays the easy and medium levels
the "Orders" board will show the picture and the
word.

But when the child plays the hard level the "Orders"
board will only show a picture of the item. No
word is shown.

When a level is chosen, Elmo jumps into the
book and lands in a bowl of batter.

Cookie Monster is the chef and Grover is
the waiter.

Grover comes to the outside window and looks
in at Elmo and Cookie in the kitchen then
throws his order in and it lands on the
"Orders" board.

The Order appears on the "Orders" board as a
picture of something and the word is written in
capital letters underneath the picture.
For example: PIE

Grover announces the order saying the word
out loud and then spells the word.

Then the child is asked to choose the correct
letter from the pizza pans on the wall above
Cookie Monster's head in the right order and
spell the word "PIE".

3 letter words have 5 letters to choose from.
4 letter words have 6 letters to choose from.
5 letter words have 8 letters to choose from.

Elmo tells the child to find the letter "P"
and once the correct letter is found Elmo
will continue to tell the child the next letter
to find.

The child has to click on the correct letter and
drag it to Cookie's mixing bowl then drop the
letter.

When the correct letter is chosen and dropped
into Cookie's mixing bowl it will stay on top
of the batter so the child can see the letter.
Cookie will give a positive comment.

If the letter is incorrect it won't drop in the
bowl and will go right back up to the pizza pan.

If an incorrect letter is chosen on the first
try, Cookie tells the child that's not the right
letter and says to try a different one please.

If an incorrect letter is chosen (on the
second try) Cookie will say the name of the
letter that the child chose and then say
that's not the right letter. Cookie will
then tell the child the name of the correct
letter to find.

On the third incorrect letter choice Cookie
says the same thing to the child and then Elmo
says: "Elmo sees the letter..." (and names the
correct letter). The correct letter will
light up green to help the child find it.

If the child keeps the cursor on a letter without
clicking or moving it (for about 10 seconds) then
Elmo will SAY the letter.

When the child spells the word correctly, Cookie
will stir up the batter and throw it into the oven
to cook up the Order.

You can change learning levels (easy, medium, hard)
while inside each book without going back to the
beginning of the game.

It's a cute educational game and helps a child learn
to identify letters and also learn how to spell
words while having fun.

Matthew also really likes playing in another book
choice in Elmo's Reading Basics called "Zoetry Poetry".

I searched the internet for a long time for other
CD rom learning games and finally discovered Living
Books, a huge hit for Matthew. We now own several of
the Living Books Interactive Animated series.

When Matthew's educational learning is geared
toward learning adventures that involve using the
computer he excels and makes progress that amazes
me all the time.

Living Books sample video - not one we use


While using Living Books Interactive Animated
Stories on CD Rom, Matthew will move the cursor
on the screen to the object in the story that I
ask him to find and click on it. And when asked,
he will even find some words in the animated
computer story book pages with some help.

As a result of using the Living Books CD Rom
series with Matthew I came up with an idea to
see if I could spell a particular word that
he was clicking on every time to start the
storybook. The word "PLAY". Rather than
continue to tell him all the time to click on
the PLAY button I spelled the word out P L A Y
and then I did the sign language sign for the
word.

I was quite surprised that after a very short
time Matthew understood what I was saying when
I just spelled the word P L A Y but did not
sign the word for him anymore. He would listen
to me spell the word then look at me and sign
the word for "Play".

So far he has gone on to learn to identify the
words when I spell out loud:
CAT, DOG and we are working on PIG.

This computer learning approach makes sense to
Matthew, it's fun for him, it matches his strengths
and abilities, it helps build confidence and he is
highly motivated to learn using the computer as a
teaching tool.

This method of teaching not only speaks to Matthew's
learning style, it allows Matthew to express what he
knows in a way that other typical teaching methods
do not.

Some of the Living Books series have the option to
choose to read the story in other languages.

Just Grandma and Me (the newer version) offers the
options of English French, Spanish and German.

You can read more about the Living Books Interactive
Animated Stories on CD Rom and Matthew in a previous
ACC blog post if interested.

Also, you can find out more about the Living Books
series on Wikipedia.

Finding educational computer games for Matthew
did not happen easily. In fact, it took me one
year of borrowing about 50-75 kid's computer games
from the Library before I found just ONE that
Matthew liked and understood how to use.

Was it worth it?

Absolutely!!

I am grateful to be able to utilitize our local
library to borrow books, music CDs and educational
computer games.

Matthew's educational computer game selection has
grown to many over the past three years. I was able to
borrow nearly everything from the Library first to
let Matthew try it out before we bought anything.

Before You Buy...Check Your Library!

Note: I purchased Living Books cd roms new and gently used
through ebay and other online resources for very low prices.

If I put a pencil, pen, crayon or marker in
Matthew's hand he could not express himself
well. He has difficulty with fine motor skills.

He grasps the writing tool with a fisted hand
and is only able to make scribbles or circles.

He tried for several years in school to write
letters and use a pencil--with a pencil grip--
but was unable to express himself effectively
using this method.

However when I gave Matthew an iPod Touch with
an educational kids "app", that I recently
discovered on itunes called First Words: Animals,
a whole new learning world and ability to express
himself and what he knows opened up for him.

First Words-Animals by Learning Touch


First Words: Animals itunes app by Learning Touch

What do I like about it?

I like that Matthew is actually finding letters
and putting them in the right order to spell a
word.

I like the options you have:

Option to choose
UPPERCASE or lowercase letters;





Option to choose between three, four, or
five letter words;

Option to display matching letters to help
show the child where they need to put the
corresponding letters;

Option to use left to right letter order to
ensure that a child chooses the first letter
of the word first, the second letter next and
so on.

It also gives you the option to have random
letter order.

In my opinion First Words Animals is a super
spelling tool for beginners and I am thrilled to
watch my child learning how to find the right
letter and put each letter in the right order
to spell a word. Better yet, I'm amazed and
can't believe what I'm seeing right before
my eyes!

A few other itunes educational "apps" I found
that meet my child's learning style are made by
Tantrum Apps:

Letter Peek Lite: (A-H) free version



Letter Peek: child demo


The Lite version is free to download to your iPod
Touch or iPhone--includes letters A through H.

Try it for free and see if your child likes it.
Then you can purchase and download the full
version of Letter Peek (A-Z) from itunes for
your iPod Touch or iPhone.

We also use Letter Quiz lite (the free version)
to help Matthew begin to point to the correct
alphabet letter when asked:

Letter Quiz Lite and Letter Quiz full version



Matthew benefits from using a free online reading
website called Starfall.com It was recommended to
us by his Speech Language Pathologist (SLP).



Check out Starfall.com and explore it
as a possible option for your child to help
with letters, letter sounds and beginning reading.



A previous ACC Blog post about Starfall

ABCs

Learn to Read

It's Fun to Read

I'm Reading

"Instruction begins when you, the teacher,
learn from the learner; put yourself in his
place so that you may understand… what he
learns and the way he understands it."
-- Soren Kierkegaard



In my research while creating this document I
discovered a variety of interesting things from
articles, to new books to borrow at the library
for my own child who has ACC to a talking
dictionary for kids.




Franklin Children's Talking Dictionary & Spell Corrector

Details From the Manufacturer:

"Improve your child's reading and writing skills
with this interactive speaking dictionary. Over
40,000 easy-to-understand definitions are
pronounced for effective vocabulary learning.
The automatic phonetic spell corrector turns
"nolij" into "knowledge" while an animated
handwriting guide demonstrates print and
cursive styles. Includes a rhyme finder, five
word-building games, and a vocabulary word list
that can be created by the user. Works with
headphones (sold separately) for privacy.
Ideal for ages 6-10.

44,000 elementary word definitions
Speaks letters, words and definitions
Personal vocabulary word list
Rhyme finder
Homophone guide (to, too, two)
5 word-building games
Animated handwriting guide
Protective flip cover
Adjustable volume control"

Here is what a teacher who is also the parent of
a daughter with ACC said about the Franklin
Children's Talking Dictionary:

"I have used an earlier version of this product
with my 2nd and 3rd graders to help them with
spelling (in the regular classroom as well as
with kids with learning challenges). What I
really liked is that it could use an actual
child's phonetic approximation to find the
correct word. As you know, regular spell
checkers require you to come fairly close to
the real spelling of a word, but this is
closer to how a child might spell it.
7 through 9 year olds were able to
successfully use it to spell words they
were unsure about. The definitions helped
them be sure they were using the correct word.
They needed some training, but could use it
independently after that. And I recommended
it to parents to practice weekly spelling
lists. It's not very expensive, and a good
resource. I think older kids would benefit
as well."

Read more reviews about this product.

ENCOURAGEMENT AND PRAISE



"It is not so much what is poured into the student,
but what is planted that really counts."
--Author Unknown

Some kids who have ACC struggle with reading
and comprehension as well as in other academic
areas and with social skills.

When a child has learning challenges and is
behind the level of their typical peers, even
though they are trying their best, it can be
very discouraging.

Everyone needs and appreciates encouragement.
Receiving encouragement is like planting a seed
into a child’s mind. When you acknowledge their
efforts and support them with your time, help and
encouraging words it is like watering that seed
inside of them and helping the child’s confidence
to grow.

Speak positive words over the child. Point out
often the things they are doing well, encourage
them and continually believe in them and in all
that they can and will learn.

Believe in the child and in all their capabilities.

Help that child to believe in themselves and to
feel good about who they are and the ways that
they learn.

When a child begins to make small accomplishments
on a task that was otherwise a huge challenge,
their confidence level will begin to grow even
more.

By praising the child’s accomplishments and
cheering them on with your encouraging words,
you will be the much-needed sunshine that helps
the child’s confidence in themselves flourish
and blossom.

"Nine tenths of education is encouragement."
--Anatole France



I invited kids who have ACC to share their
own personal thoughts about reading.

Alex's Mom told me that he would like to write
a little something. She asked me if I could make
up some questions, "so he can only have to
answer instead of coming up with something
himself."

You read about Alex earlier in this document.
Alex is 12 years old and he has ACC.


Question:
What is the most fun about reading?

Alex:
"Imagining pictures in my head, like watching a movie."

Question:
What is the hardest part about reading?

Alex:
"Nothing, really. Reading is easy for me."

Question:
What are your favorite things to read?

Alex:
"Science Fiction. But I also like to read
all kind of subjects."



Question:
When you read something in a book and the
teacher asks you a question about it, is it
hard for you to remember and answer the question?

Alex:
"It is not hard to remember and answer the
teacher’s question."

Question:
Can you read something in a book one time and
remember it easily or do you need to read it two
or three times before you can remember it?

Alex:
"Even if I read it once I could still remember it."



"I like a teacher who gives you something to take
home to think about besides homework."
--Lily Tomlin as "Edith Ann"



A Children's Book About ACC?

It's true. There is a book about ACC for kids.
ACC and Me is a perfect teaching tool for your
child's classroom to help inform and educate
your child's teacher and classmates about
Agenesis of the Corpus Callosum.

You can get a free copy of the ACC & Me book by
registering as a first-time member of the NODCC
(National Organization for Disorders of the
Corpus Callosum). The book comes as part of the
welcome packet. There is no fee to join, however,
they do accept donations of any amount.

Register and become a member of the NODCC online
or by E-Mail.

If you already have the ACC & Me book but
would like additional copies, the NODCC
asks for $10 for each additional ACC & Me
book plus shipping.

Order a copy of the ACC & Me book

Read more information about the ACC & Me Book.



CHOICE OF BOOKS IS IMPORTANT:



Parent and teacher of grown child with partial
ACC wrote:

"Another thing we found is that choice of books
is important. Whenever possible, we helped her
choose books that had a high emotional content
for her and that told the story in a
straightforward way. If there was too much
psychological stuff going on or a lot of
flashbacks it was too confusing. Of course
in school sometimes you have no choice. It
also helps to keep the grade level of the books
lower than grade level."

"Book series are good, because they often offer
familiar, predictable characters and situations."

Parent of grown daughter with partial ACC wrote:

"Having novels, or 'chapter books' as the kids often
call them, read aloud, by an adult, is very beneficial
for kids of any age. They hear the language, intonation
and paraphrasing as well as the music of the voice.
Chapters often end with suspense or something else to
look forward to and are a great way for kids to have
a bit of undivided attention. Good kids novels are
often a revelation to adults too and provide
springboards for heaps of discussion.

I think discussion is probably the key thing along
with really careful selections of reading materials."



MAKE READING FUN:

Take a tip from Alex, who has ACC, who said reading
is like:

"Imagining pictures in my head, like watching a movie."



Plan a reading adventure. Think of ways to make
reading fun and appealing to your kids.

Perhaps a family camp-out in the backyard? Each
person can bring some snacks and your favorite
books. Then take turns reading the best parts
from the book you like. Have some book talk time;
let the conversation flow and see where it goes.

Maybe the topic comes up about some place that
the family has always wanted to see. The library
or bookstore would be a perfect place to get some
books. Find books about your future destination
and then plan a fun family adventure together.

Another idea is for the parent to read aloud a few
chapters of a great book that is highly appealing to
the kids.

Encourage discussion by stopping at times to ask what
they think will happen next then move right along with
the story. It helps to choose a book that ends each
chapter with suspense.

When a book is captivating and holds their interest
it will leave them wanting more.

After reading the book aloud to your kids, ask what
their favorite part of the story was. And if something
was funny or exciting to you be sure to tell your child
what you liked about the story then talk about it
together.



And the perfect ending to your backyard camp-out
could perhaps be playing a game of
Apples to Apples Jr.
Have some family game time that's super fun!

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."



The brain is amazing but even more amazing are the
kids and adults who are missing a part of their brain
(the corpus callosum) who learn in unique ways and
persevere working very hard to accomplish so many
wonderful things.

"It is the supreme art of the teacher to awaken joy in
creative expression and knowledge."
-- Albert Einstein


I am sure that there are a lot more stories and
information to be told about ACC: Reading and
Comprehension. Please feel free to share your
own input and thoughts.

I welcome and enjoy your comments and e-mail

I am working on turning this document into a
PDF file for anyone who may want to have a
printable copy. When it is available I will
put the link here. Please check back soon.

RESOURCE LINKS:

1. ACC & Me Children's Book
2. Leap Frog Letter Factory DVD
3. Cathy Bollinger-Tunes That Teach CDs
4. Starfall.com
5. Living Books Interactive Animated Stories CD-Rom
6. Songs For Teaching
7. Fast ForWord
8. Orton Gillingham
9. Kurzweil-text-to-speech software for reading
10. Teach Your Child To Read in 100 Easy Lessons
11. Reading Mastery Fast Cycle
12. Lexia Learning-on the computer
13. Elmo's Reading Basics cd rom
14. Apples to Apples Junior
15. Apples to Apples Kids 7+
16. Apples to Apples Bible Edition
17. Apples to Apples Disney Edition
18. Accelerated Reader-bookfind
19. Toobaloo
20. Franklin Children's Talking Dictionary

ACC Brain Images-by Dr. Elliott Sherr


I want to thank each one of you parents who gave
permission for me to quote you and for your willingness
to share information about your child who has ACC in
this document. I am so grateful to you and appreciate
the time you took to not only share your input but
to answer all of my questions as well. It has been a
privilege and a pleasure to get to know each of you
parents better and to learn more about your kids who
have ACC. Thank you very much.

To Cassie, who has ACC, thank you so much for the
information you shared and for taking time to help
others with your input about not only what it was
like as a child with ACC but for also sharing how
ACC affects you today as an adult. Thank you also
for offering advice and strategies for what helps
you with reading and remembering. I know you're
very busy in college with your studies and I
appreciate that you took the time to give your
personal input. Thank you very much. It is a
pleasure to know you. You are an amazing person.

I also want to give a super special thank you to
Alex, who has ACC, who recently turned 13 years old,
for your help and input about reading and for taking
time to answer my questions. Thank you so much. You
are a very kind, polite boy and it was a pleasure
to get to know you.

Without each one of you and your personal input this
ACC Reading document would not have been possible.

Disclaimer:
I do not endorse or receive any compensation from the
companies mentioned in the product links on this
ACC Reading document.