Wednesday, May 26, 2010

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

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

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

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.


  1. First of all, congratulations, Lynnea, for your Bachelor of Arts.

    Karen: some of your observations were interesting, from computers to shoelaces.

    Perhaps other children and adults were not picked up (as having ACC) because of the same reasons as Lynnea, so it is probably likely you did teach some. There are special education classifications.

    On the other hand, it's good that Lynnea's doctor had some recommendations.

    We would love to know more about the organisation for young women with self-esteem difficulties.

    Wonderful about Shakespeare.

  2. PS:

    The thing I forgot.

    Lynnea as entrepreneur.

    That was the aspect of her experience I really wanted to talk about.

    It got somehow muted by the way the people would buy the "useless objects" because she was so cute.

  3. To: Adelaide Dupont

    From: Karen

    To address Adelaide Dupont’s question regarding Lynnea’s entrepreneurship, she was six years old at the time. She fancied herself an inventor. She would mix powder and lotion to create a mixture which she would rub on her Dad’s tired feet and legs in the evening. Then she invented an air freshener, using ABC (already been chewed) gum (perhaps not useless, but certainly not considered useful by many) and tissues. This is what she sold to the neighbors for 10 cents apiece. Then she later started her own yard-sale business. She may have been seven or eight by then. At that time we were also raising my husband’s grandson, who was actually older than Lynnea. She enlisted his aid in carrying her wares out into the front yard. We recently ran across a picture of her in front of her yard-sale table. Someone at her graduation was shocked that we put her to work selling stuff at such a young age. She quickly let them know that it was her yard-sale and her idea.

    I don’t think that Lynnea’s lack of diagnosis at an earlier age was because we were teaching her, it was because no doctor had ever suggested that she have an MRI done on her brain; which was at that time the only way to tell that her corpus callosum was missing, as ultrasound, in our area at least, was not that advanced when I was pregnant. The school system, just did not want to go to the expense of paying to have her tested, because they felt that she would not qualify with learning disabilities. I think they thought because I worked for them, if I really wanted to have her tested, I could pay for it myself. Since, unfortunately, most of the special education students in our school, also qualified for the free lunch program. Those in SpEd that weren’t on free lunch had an obvious disability (Down’s, wheelchair, etc.). Since you can’t tell there is anything wrong with Lynnea, by looking, they were not about to pay for that psyco-educational evaluation. Since there was no MRI, my insurance wouldn’t pay either. So that is the real reason for no early diagnosis.

    Lynnea is remarkable for the things she is able to do when you focus on the fact that she has no corpus callosum and so many with this disability are obviously so much more impaired. However, the down side to that is that people expect so much more of her sometimes than she is capable of doing which leads to feelings of inadequacy, etc. There are many challenges that she faces. The not driving issue is a real handicap in a rural area such as we live in and love. She has migraine headaches almost constantly, for which she is on prescribed medication, but they only make it more tolerable, they do not cure. She gets lost (ends up someplace and can’t figure where she is or how she got there) frequently and no one can get a handle on that because apparently she does not have seizures, or if she does they are not showing up on the tests. She is not employable in a lot of jobs that most young people could easily master, such as food service or clerking, due to issues with lack of speed, not catching on quickly, and low muscle tone/coordination. All through her public school life she was treated by classmates and sometimes teachers as though she was just lazy or dumb, because she appears so normal and intelligent, but she is actually just slow to catch on to new things. People then lose patience with her and give up on her or fire her. These may seem like small things when compared to others, but they remain challenges for Lynnea, the individual. I have tried to focus on her successes, and down play her failures, and perhaps even in my story, I made it appear that her success was because she was “cute” or we were such great parents. Lynnea works very hard for her success on her own, and as parents – well we were just like any other, we had no manual to follow, we just played it by ear and hoped for the best. Not to mention the facts, that we tried to instill a work ethic and we prayed fervently.

  4. hello my name is Kelly and my fiance name is David we just had a baby that was born with acc.she is 15 days old.we was wondering how hard it is for a child with that? when we found out she had acc i was still pregnant with her.they did two ultrasounds and one fetal mri.she was also born two months will the acc effect how she will be when she gets older? we understand some things about it but we would like to know more.

  5. Hi Kelly and David,

    Congratulations on the very recent birth of your baby girl.

    I am also the mom of a child who has ACC (and I am the creator of this ACC blog and website). My child's name is Matthew and he is 17 years old. He was diagnosed with ACC when he was four months old. I remember very clearly the day he was diagnosed with ACC. It is overwhelming, and I had a million questions!

    I can relate to your feelings, your concerns and your questions.

    Like you, I also wanted to know what to expect and I wanted/needed to know how if or ACC would affect my baby.

    There is a very broad range of effects when a person is diagnosed with ACC. There is no way to predict exactly what to expect when a baby/child has ACC. One of the most difficult things to deal with, aside from receiving the diagnosis of ACC, is the "wait and see" period...something that nearly every parent of a child with ACC (myself included) dreads and finds incredibly difficult.

    I would be very happy to share more information with you about ACC, including medical tests and specialists that are very important after a baby is diagnosed with ACC.

    If you would like to e-mail me, I will send you more information and I will do my best to answer any questions that you have.


    I look forward to hearing from you.

    My thoughts and my prayers are with you and your precious baby girl.


    *Mom to Matthew, Age 17 with ACC in Oregon USA*


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