Cole nursed really well yesterday. In fact, he didn't take a bottle all morning! Then he was so tuckered out he refused the breast all day, so I'm back to pumping. Oh well.
We started our day with Andy and Ellie running and well... I don't know! I was swinging Nina and Nichole. Nichole was not too happy to stay there for long, but we swung for a while!
Ellie just loved this place and there were some older kids from a school. The older girls said she was so cute with her sunglasses and necklace and it just made her day!
Nichole engaged in some rascal behavior by taking off. Actually she walked a lot! All over the playground, as well as trying to find...a sidewalk? A road? Not sure, but there is a lot of grass and she eventually turned around.
Eventually we were all hot, sweaty, and hungry. We headed to McDonald's, why not! All three girls did wonderful, and Nina was so confident that she climbed the play structure there all on her own! Wow! Yeah, say it with me...Wow!!!
Ellie does not get lots of attention here on the blog, but she sure gets lots of attention at home. I asked her the other day who was the sister that got the most attention. "Me mommy, of course I get the most attention!"
And Nichole discovered she can climb our little slide all by herself, any way she wants! it kept her entertained for a while, until she thought it was time to take a run. Good thing I could chase her and practice "Stop." We are working on it.
After much coaxing and prompting she finally let the death grip on it go and she stood up all by herself, without holding on to anything! This is a huge step on the right direction. Although the harness holds her up, she is learning some balance, but more important, she is learning to trust, and hopefully the message is getting in her heart, that she can do it!
Recently, she posted a link about feeding babies that listed the preferred methods as follows:
1. breastmilk straight from the mother's breast
2. expressed milk from the mother
3. donated human milk (screened and pasterized)
4. commerical formula.
Here's the kicker- I agree with this. No, duh to those who know me, right?
BUT (and there's always a BUT), this is the ideal. The reality is much, much different.
When I was pregnant with Joseph, I told Adam I would give our baby breastmilk, even if it ment only pumping. Joseph latched on and nursed well with no problems until my supply tanked at ten weeks pregnant with Camille. He was 15 months old and 15 months is certainly a respectable nursing relationship and I was sad to see it end. I was happy to give him breastmilk and nursing was enjoyable for both of us.
Six years later, I am being challenged on my claim that I would give my baby my milk, even if it ment pumping. I have a baby that can't latch on and I am pumping for him.
I want to nurse my baby. For me, nursing is normally easy, pleasent and enjoyable. I like breastfeeding. I love milky grins, doozing with a nursing baby or toddler during naps. I enjoy having to only remember myself and the diaper bag when we go out. I like not having to worry about whether or not I refilled the formula container, if I am going to be able to get clean water, whether or not bottles are clean. I like knowing that if I am around, come he ll or high water (or tornados, or snow storms or power outages) my baby will be fed.
And, yes, I believe that there is something in breastmilk, an ever-changing fluid, that formula, at this time, cannot replicate. I believe, to use emotionally charged words, it is better than commerical formula.
I also believe you have to feed your baby and that commerical formula can be, depending on the situation between mother and baby, better than breastmilk.
I don't believe that "bad mothers" use formula and good mothers breastfeed; you are only a bad mother if you don't feed your baby!
Would I like to see all babies, even babies whose mother's have low supplies, are adopted, are sick, can't latch on, have breastmilk? Yes.
HOWEVER, to get milk to these babies someone, somewhere is going to have to pump.
It was so, so easy for me to say, six years ago, that I would just exclusivly pump for my baby. And maybe, six years ago, I could have done it. Joseph was my first and it would have been easier, physically, to plan our days around when I would need to sit down, hook up to the mechanical baby, and pump away. Now, though, with four kids and activities it is a totally different story.
To feed my baby, I need a power source and a pump, complete with parts. I need to be plugged in and sitting down, not moving much or very far for about 20-30 minutes at a time, every few hours. The kids can't go swimming, and since I won't pump in front of people, it was hard to have friends over for awhile. We have had to plan our day around when I need to pump, sometimes cutting playdates a little short so Mommy can go home. It takes my time and engery, moreso than "normal" breastfeeding would, because I have to store the milk. I'm not done there, however; I also have to mix up bottles, feed Cole and try to breastfeed him.
Pumping alone takes 30 minutes. Making up the bottle and feeding him takes another 15-20. Trying to nurse would be anywhere from 0-10 minutes, or whenever he started screamed at me. That's about an hour of feeding per session all day long, compared to a typical 20 minutes nursing or bottlefeeding session. No wonder my kids were going stir crazy!
Feedings at night took longer too. I had to stay awake long enough to give him a bottle and then I had to pump. I was up an hour each feeding. In the early weeks, Adam would give him a bottle while I pumped but its been up to me recently. I have enough trouble staying awake at night to bottle feed him; dragging myself out of bed was torture! This past week I've only pumped once at night because I was simply too tired to move. I can do that because I respond well to the pump, didn't mind supplementing with formula and have a decent supply. If any of those changed, I would be pumping more.
When I nurse my kids, or give them a bottle, I have the option of staying where I am or leaving for another room. What I pick depends on the situation but I typically head for the most comfortable place. With pumping, I had no choice but to leave for another room. I had to leave Cole's baptism party and head upstairs. All of my friends knew what was going on and no one minded but it was lonely and isolating. I mean, I'll breastfeed anytime, anywhere and anyplace but pumping? Even I won't do that without a cover!
I know I have nothing to prove by breastfeeding. I know it is no one's business what is in my kid's bottle but, yes, you do feel judged. I worried what other people would think when I mixed up formula. I felt like a complete and utter failure, even though Cole had a very physical reason why he could not nurse.
A tounge tie requires a bottle. Period. It's not like a low supply where I could have just used a SNS and supplemented him at the breast. He couldn't latch on. Period. He was damaging my nipples and causing toe-curling pain. I had mastisis at two weeks because he couldn't empty the breast properly. It's hard to understand unless you are there but, yes, some babies simply can't latch on.
Several people have suggested a "nursing box" of toys that the kids can play with only when I pump. That would work but it would hold their attention for about 2.5 seconds before they would be fighting over something or destroying the house. The toddler knows I can't move when I pump and gets into mischief; the other day, he ripping up a roll of wrapping paper, cleaned out the bathroom cabniets and took all the tissues out of a box.
I try and time pumping so Cole is asleep. He's a hold me baby and even with hands free pumping, I find it hard to hold him. I've given him a bottle while pumping; an odd juxtoposition if there ever was one.
I've been EP'ing for a month now. It's been a long month. The sacrifices for all six of us have been huge. I don't know how much longer I am going to keep on pumping. I'm asking 3 kids to have their life revolve around me expressing milk for their brother. That's a huge sacrifice to ask young children to make. I don't know how much longer I can ask them to do that.
I've said before that breastfeeding is generally easy, formula feeding is easy, pumping is not. This is a huge lifestyle change for all of us. I keep going because I have a light at the end of the tunnel- he is getting closer to fully nursing. I don't know if I would keep doing this if I didn't have that little light at the end of the tunnel (unless he was sick). There are very, very, very people I would EP for.
It's easy for the experts to say that one method is the perrferred method of feeding. It's easy for people to say what they would do in a situation they are not in. It's sometimes not easy to carry those out.
If I stop pumping for Cole and he can't nurse, I won't have failed him. I won't be feeding him fourth-best. I will have tried my dardest to make MY preferred method of feeding work. And it if it doesn't, I will have a good cry, put on my big girl non-nursing bra and mix up the formula in the bottles and enjoy my baby. I will have slogged through exclusive pumping and come out the other side with my baby in tow and as long as he's happy and healthy, who cares how he's fed?
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
I thought it fitting to share Karen's entire story
here with all of you...
"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
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
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
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. exercise 300 minutes for June
2. start WW or Spark People
3. get on top of the laundry
Although it is not a peds office, they clearly do alot of peds work. How do I know this? They had, framed on the wall, a mulitude of items they had pulled from ears and noses. I was amused and more than a little grossed out! Bless my children for giving me six years of parenting and not that!
Dr. R had not heard of a Type Four tie. She was VERY detailed and asked alot of questions. She wanted to know the name of the LC I had worked with and wanted to speak to her. I thought she would call the LC later but, no, she called her while we were in the office! The LC was able to give her the quick and dirty of the tie and when R came back intot he room, she took another look and saw the problem.
She was VERY honest with me and wanted to research this type more before agreeing to this surgery. She does alot of tounge tie clippings but not type 4; I felt this was completely reasonable.
Friday I forgot to call the office. Monday, I called and she said Dr. R had looked over the information the LC had sent and was willing to do the surgery. Thursday, Cole and I popped into her office.
We waited a bit since they were behind and when I was called back to the exam room, we waiting some more. I was closing in on panic and could smell the hospital even through my sinus problem. I kept staring out the window and the view was very similar to the one out of the NICU parents' room window. I could see the parking lot, part of the main hospital and it was dreary and raining... and we had alot of dreary, rainy days in the NICU where I stood looking out the window while I scarfed a snack. I kept saying to myself, "This isn't Georgie, this is Cole."
They called us back to numb his tounge. He was NOT thrilled to have a numbing agent put on his tounge and a novacaine shot. He gagged a little then looked at me and fell asleep!
The actual clipping itself took one minute. Two nurses helped hold his head and I held his hands. I refused to look during the clipping (two snips) but I saw the end. As soon as it was done, I picked him up and he stopped crying. I could see and improvement right away. His tounge reached the top of his mouth when he was crying and he could stick his tounge out farther. He did nurse right away and nursed properly in the office. He only took two ounces an hour later, so I know he got something. Right away, he was much neater with the bottle and was quite happy on the couch, sucking his binky for 30 minutes that night. Normally, he would lose it and the cry because he didn't have it and wanted to suck more, so that made us all happy.
Since then, he has tried to nurse and has gotten two sucks in before letting go and crying. I am trying before I pump, after, before bottles, after bottles, with a chiro adjustment, in the middle of the night, during the day, with and without and shield, etc. I am so tired of this but I am keeping going because it hasn't even been a week since we could physically expect him to nurse.
To top it off, he's been fussy and it's been hot; post partum hormones and the heat mean I am sweating like nothing else. I don't know when I will quit pumping but I know the time isn't yet. My supply was very low yesterday, likey due to the heat and the medicine I had to take for a horrible sinus headache. It seems to be back up now but I am not making enough to have him exclusivly breastfed. Jokes on me- by the time we get him to breast, I bet he will be ready for solids!
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
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
*Note: I have interjected my questions/her answers
within the content of Patty's original e-mail to
help the conversation stay organized and flow more
"I think I have told you my story. I did not
find out I had ACC until after a car wreck. The
difference is that I was about 31 or 32 year old
before I found out that I have ACC-C. Many things
that don't make sense to me I chalk up to ACC-C.
Even around here I have been researching things
myself since I have been left in the lurch medically.
"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
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?
"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
Do you have a specific diagnosis involving your
"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) ."
"man that tracer stuff gets you cold...brrr!"
Can you please explain what you mean?
"At one point during the MRI they took me out of
the MRI tube and injected some "contrast" fluid
into a vein in my arm. IT made my hand very cold
and then the cold feeling ran up my arm. The
tracer helps to see the flow of fluid moving from
point A to point B. It was a small amount of
contrast but it left a metallic taste in my mouth
for a little bit of time."
Did you find out most of the information you know
about ACC from your own research on the internet
and from other people who have ACC or parents who
have a child with ACC?
"I found out most of my information by looking up
ACC on my own through research on the internet.
I found MRI images that looked identical to mine
from a medical website. I am sorry I can not recall
what site it was, I looked up information by using a
specific ACC-C search. It is simply nothing better
than feeling validated when you see someone else in
the world that has a brain that looks like yours.
Through my research I found out more correlations
to my optic nerve problems and thyroid issues."
Earlier in your May 4, 2010 e-mail you wrote:
"I have discovered some new limitations or
rediscovered limitations I used to have that
are present again."
What are some of the new and rediscovered
Can you explain them in more detail?
"Since my automobile accident March 7, 2007 and a
minor one in October 2007. I have discovered
limitations I have as an adult. I truly believe
that those minor bouts of disorientation have
short circuited my brain more than I would have
preferred. I say that because I have less
capability to process information as quick as I
did in college. I have to slow down when receiving
new information not ever learned before. My ability
to process information that adds to what is stored
in my long term memory is still doing okay.
(e.g. I recently took a 2 cr. [2 credit]-8 lesson
Spanish class for teachers. I finished it in 9 days
doing it after my house was quiet for the night. The
last time I took Spanish was in h.s. although I have
spoken minimal Spanish with my students). I have
less capability to handle stress, and process it
effectively, that used to roll off my back.
My hypothyroidism has put limitations on me as well.
Since the hypothalamus runs most effectively with a
functional corpus callosum, some months have turned
out to be a “crap shoot” for the lack of better terms.
I say this because I do not know if thyroid is going
to receive the meds properly or if its going to not
receive it because I did not follow every letter of
the law when taking the meds. Regardless I need more
sleep than most people, on average. I have to watch
my diet because food can affect absorption of the
thyroid meds. I need to keep moderately active, too
much is bad and too little is bad."
When were you diagnosed with hypothyroidism?
"1995. Holy cow it has been 15 years…. Yikes!
Spring of my first semester away at college
(2nd yr in college)."
Does hypothyroidism or thyroid disorders run
in your family?
"My maternal grandma had thyroid issues since my
hypothyroidism diagnosis, one of my sisters has
been on meds for it also for about 4 or 5 years
"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?!"
"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
"YES I am talking about my memory."
Did you at any time BEFORE the car accidents deal
with any short term memory loss or difficulty with
memory and remembering things?
"No. I did my college all before that and even having
kids before my short term memory loss started going.
If you can maintain memory in college and during
pregnancy and childbirth, then you are pretty good
Do you have any other medical conditions in addition
to having complete Agenesis of the Corpus Callosum
"I have no curve in my neck. But that gets adjusted
by a cute, sassy, younger than me, knowledgeable
chiropractor that has helped me more with my thyroid
problems more than my own med doctor in the past few
During our e-mail exchanges Patty revealed a few
additional things about herself that I will include
here for those of you reading her story.
"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
"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
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
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
Is your daughter your only child?
"I have a daughter who will be 7 in June and a
son who is 5."
What do you enjoy doing the most in life...
what are you passionate about
"Personal: My deepest passion is that I use my
knowledge to make informed decision and to empower
other people with the information I can pass along
to them. I want to learn as much as I can about
ACC-C from educated neurologists. So I put the
puzzle pieces that are still missing into my life
with solid answers."
"Career: I am most passionate about having my
students have my classroom as the best environment
for learning to happen. I want to be as fluent as
I can in Spanish to communicate effectively with
families of my students."
It is very evident to me that Patty is a dedicated
teacher who cares about helping her students learn
and I have seen her passion for teaching and helping
kids/students take place before my own eyes.
Patty belongs to one of the same ACC online e-mail
support groups that I belong to. In fact, just
recently Patty reached out to the parent of a young
child who has Agenesis of the Corpus Callosum who
was asking for help with her child's learning needs
and challenges. Patty gave advice to the parent and
offered specific, detailed teaching methods and ideas
to try. Along with Patty's specific reply to the parent
she also included this information:
"If you stimulate the different hemispheres of the
brain with crawling activities and stretching across
the body activities, the brain will begin to be
Even with having a ACC-C myself. I have found that
these midline crossing activities help my cognition
to engage better that day, and I am the teacher!
Look into a local S.M.A.R.T. training program near you.
The program is for struggling students in the early years.
The program is very hands on and was designed by some
people who had children with special needs. It combines,
OT and PT and ST mixed in. The activities themselves are
between 2-5 minutes each."
S.M.A.R.T. stands for:
Stimulating Maturity through Accelerated Readiness
SMART is a multisensory program.
Many kids who have Agenesis of the Corpus Callosum
have benefited from using a multisensory teaching
approach. The midline crossing exercises that are
incorporated into S.M.A.R.T are an added bonus for
someone who has ACC.
The S.M.A.R.T program is being implemented into
some schools in pre-kindergarten, kindergarten and
in some first and second grade classrooms and seems
to be a big hit with the students and staff.
Because I have a child who has Agenesis of the Corpus
Callosum, I was curious to learn more about S.M.A.R.T.
I asked Patty:
Do you know of a specific website for S.M.A.R.T.?
"I have my resources at school. go figure. SO I
would have to look the website information when
I get back to school. I can check on Monday.
I know there is a 4 day training seminar that all
"moderators" (and teachers too) are supposed to
take to be accurately trained. I am doing the
budget version and having my sister train me
(until my district would pay all or part of my
way of course.) My sister is the moderator for
her school. So she does the activities with all
kindergarten, all first grade and some second grade
students. She had them on a weekly scheduled time
just as gym or art would be scheduled. The reading
and math scores have greatly improved in one years
time from the impletation of this program. She has
several of the large motor activities done in her
classroom. In addition, each of the dedicated
teachers do more activities in their daily routines
such as I do. The only class that did not show
improvement with measurable success was from a
teacher, who had students in a half day program.
She was "too busy" to be consistent and take time
to do the activities. I heard that and knew I
could make it work in my half day program.
I will send you an email containing exact details
off the materials that I have at school. I should
have time to grab the books on Monday... if I
remember.... ha! I crack myself up! Note to self:
bring SMART books home! I know the creators of this
program set out to help their own child with special
needs. It worked for them so they wanted to share it
I love that Patty is able to make a joke about her
difficulty with short-term memory loss and can laugh
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
Have a detailed look at S.M.A.R.T. in the News
A S.M.A.R.T. new program at Jefferson
Minnesota Learning Resource Center-S.M.A.R.T. Info.
S.M.A.R.T. News-April/May 2008
S.M.A.R.T. Newsletter Archives and E-Mail Sign Up
S.M.A.R.T. Online Resources
I asked Patty:
Do you do midline activities with the students
in your classroom?
"I do midline activities every day. I have received
many compliments from parents that they have new
children with their profound improvement of skills.
I have not done a ton of "academics" I do a ton of
"train the brain" activities. It may look like we
don't do much to the untrained professional. Yet by
golly I have a class of students, where 95% of them
are ready for Kindergarten. Hallelujah!"
"I do the "hulk stretch" where we reach up and grab
something, with both hands, big from the sky on the
left and carry "it" over to the right side with our
arms going from extended up to lowered down and SMASH
the thing across our knees. My 4 year olds of course
have to show me a good "grrr" muscle pose before it
as a added humorous body building move! Hulk-smash...
get it! Then we do the crossover "smashing about five
times on each knee, alternating left/right/ left right/
alligator crawl - picture not Patty's class
"We do the alligator crawl where their belly must
stay on the floor but they have to crawl with
their bottoms down also, Their knees alternate
as if to crawl, left arm up right knee up, right
arm up left knee up. Their bottoms must be down
at all times and their arms can not carry them
they must bring their knees up in te correct
pattern. I had 3 to 4 kids who could not do it
in October that are able to do it more successfully
now. THey do not do it 100 % all the time but their
success is up from 0% correct body patterns to about
75% of the path is done correctly. My path for this
is about 10 - 15 feet long. I moved tables and chairs
away from a part of the room."
"I do the bear crawl where their hands and feet
do the crawling pattern with their bottom in the
air....I had a few kids tip over from having their
legs go faster than their hands...The length of
the path is the same as the gator crawl.
I do a flamingo stand with one foot in the air at
a time, counting to 5 at first, then building to a
count of 10. Also I do a heel tap where the child
stands up and taps the right heel with the left
hand both in front of the body for x amount of
times and then behind the body for x amount of
sensory crawl - picture is not Patty's class
"There is a sensory crawl where pictures of objects
are in clear pockets taped to the floor. The child
names the object and taps the picture. then he
crawls to the next picture on the floor and does
the same. use 10 pictures of objects at least.
Hook board- little mug hooks are on a post and a
child puts varying size washers on the hooks all
with one hand and then uses the other hand to take
all the washers off. start with bigger washers
and then move to smaller washers.
Wipe off boards- Make simple maze patterns and
have the child follow the right path with their
finger first. Another activitiy is drawing letters
or lines on the wipe off board and have the child
erase the lines using their pointer finger.
Use small tongs (without the sliding ring- it
pinches fingers) and have kids pick up pon poms
from small bins, putting them from one bin to
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
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
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