Agenesis Corpus Callosum

Learning Tools & Ideas #4

2011-11-03T22:57:00.000-07:00

Agenesis Corpus Callosum
Teaching Tip:

What is so unique about this teaching tip?

Well, it comes from a pre-Kindergarten teacher,
Patty, and SHE has Agenesis of the Corpus Callosum!

When I created the Learning Tools & Teaching Tips
section on this blog I asked for input from a lot of
people in the ACC support groups that I belong to.
Patty sent a note and reminded me of the previous
input she shared, in her own ACC story, about the
midline exercises SMART program that she uses with
the students in her classroom.

And then today another pre-Kindergarten teacher, who
has a young nephew who was recently diagnosed with ACC,
read Patty's ACC story (and read the section of Patty's
story where Patty mentions and describes the midline
crossing exercise program) and the teacher posted a
comment regarding her interest in the SMART program!

I believe that Patty's input about the midline crossing
exercise program, from the standpoint and perspective of
a pre-Kindergarten teacher AND as an adult who has ACC,
is absolutely worth reposting here in this Learning Tools
and Teaching Tips section.

I hope that you will, too. Please read it for yourself...

PATTY TALKS ABOUT THE SMART PROGRAM:

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.

S.M.A.R.T. 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 on Facebook

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

S.M.A.R.T. E-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.

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 ACC 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.

Do YOU have a learning tool that you would like to share here?

I'd love to hear from you, and so would a lot of other people too, who will be able to see and read all about the learning tools and ideas that you use with your child who has Agenesis of the Corpus Callosum.

It is my hope that this section will become a collection
of multiple learning tools (for families to browse, see and
read about) to find a variety of new and inspiring ideas to
help their young child, teenager or grown child in many
different areas--from academics, to fine motor/large motor
skills, to sensory issues, to potty training--and anything
else that comes to mind.

Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau, where she shares some excellent ideas and fun "Learning Tools".

ACC & Moms-To-Be Story #12

2011-10-24T10:01:00.000-07:00

I am incredibly thankful to all of the Moms who want to tell
their story about being pregnant and having a baby with
Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

Michelle, the mom of a 5 1/2 week old baby girl,
contacted me and she expressed a desire to share
her own story.

I got in touch with Michelle through e-mail last week on
a Monday and that same day, within hours, I received her story.

I am so grateful to be able to include Michelle's ACC
Pregnancy Story here.

Thank you very much, Michelle. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to thank you from my heart for your willingness
to express your story in words and pictures , and for your desire to reach out to help other people and offer hope.

Written by Michelle:

When I sat down to write this, it took me a while to pinpoint where I wanted to start because I think the events in my life leading up to this journey are the reasons why we were able to get through what we have with our heads held high.

I met my husband Craig in high school and we married in 2004. In 2007 we had our first child, (a son), who we named Keegan. Keegan is the sunshine of our lives. He was really a perfect baby!! He was always happy, slept well, ate well and just fit into our lives as if he was always there. We call Keegan our “little old soul”. He has such a huge heart and is always sensitive to what is going on around him. When Keegan was around 1 ½, we had a little “whoopsie” and I found out I was pregnant in October of 2008….this is where this crazy journey begins!!!

Although the pregnancy wasn’t planned, we were all very excited. I always wanted to have my children close together because my brother and I are only 13 months apart and I wanted my children to have a close relationship like we have. 4 weeks after I found out I was pregnant, I started showing signs of miscarriage. We went to the hospital and this is when we had learned that the baby we had already grown to love was no longer with us. It was an awful thing to go through, but it was the first time I had miscarried and I knew how common it was. Since the pregnancy wasn’t planned in the first place, we decided to wait a little longer before trying again.

In 2009 I ended up having 2 more miscarriages so my Dr referred me to a fertility clinic for some in depth testing.

By the time I made it to the fertility clinic I was pregnant for a 4th time and they couldn’t do the tests, so we had to wait and see, but unfortunately we lost this baby too.

I always miscarried around 7-8 weeks.

After 4 miscarriages, I ended up getting pregnant again and the Dr at the fertility clinic had learned that there was an antibody in my blood, specifically called Lupus Anticoagulant. Basically, what this means is that my blood is a little thick and there were tiny clots which was not allowing blood flow to the baby and therefore things weren’t developing and no oxygen was getting through and the baby would die.

I was already about 6 weeks pregnant when the Dr found out about the antibody and a week away from the time I would usually miscarry, so I had to see a thrombosis Dr right away so they could decide what they wanted to do about thinning my blood. I was immediately put on Fragmin Injections (a needle to the tummy every day). I had made it to 8 weeks and then started to miscarry again!!! I was devastated BUT- I now knew what the problem was and would fully be prepared the next time I got pregnant. Unfortunately the Fragmin Injections weren’t started in time. The fertility Dr said to me, “do you know how lucky you are to have a reason why you are miscarrying? Some women never know why.” I knew I was lucky!!

So after 5 miscarriages, in December 2010, I found out I was pregnant again and immediately started Fragmin Injections as well as a daily dose of baby aspirin, progesterone suppositories and a super duper prenatal vitamin. 7 weeks passed, then 8 weeks, then 9 weeks…(that was a huge celebration), 10 weeks etc….

We were finally on our way to having a second baby!!!!!!!! I was referred to a high risk OB and had regular ultra sounds to track the baby’s growth.

At about 20 weeks we learned that we would be having a baby girl!! We were so excited. We had a son and now a daughter….people kept saying we would have a Millionaires Family!!!

Aside from feeling a little sick, the pregnancy was going well. In June I started having spells of vertigo, which apparently was unrelated to the pregnancy, but ended up having me leave work 3 months early.

I went in for a routine ultrasound at 33 weeks which was always followed up by a visit with my Dr. My husband didn’t come as he had been to a 3D ultrasound a few weeks before. This was just a typical visit.

When I was having the ultrasound the technician said she had to discuss one of the images with the Dr and would be right back. 15 minutes passed and I honestly didn’t think anything of it!! She came back and said they needed to do a scan on another machine because the machine she was using couldn’t get the right picture, still didn’t think anything of it…

When I went up to see my Dr, I waited in the exam room for about 30 minutes before he came in. When the door opened and I saw his face, I was very nervous.

He said that some things had shown up on the ultrasound and we needed to do further testing to understand exactly what was going on. He explained that both ventricles were enlarged in the baby’s brain and he thought it was likely something called Hydrocephalus which basically meant that there could be pressure on the brain and that there was a blockage and the fluid wasn’t draining properly and that at birth a shunt might have to be put in. BUT- he could not be sure so I had to have a fetal MRI right away.

2 days later I had a fetal MRI and we were meeting with a neurosurgeon right after to discuss their findings. It was at that moment that our world flipped upside down. They thought it was Hydrocephalus, but it was Complete Agenesis of the Corpus Callosum. The neurosurgeon said that he wasn’t the one to discuss this with and that we should speak with the neurologist so he could tell us what types of obstacles we would be facing and how this would affect our baby but basically said that our child would likely be disabled, have delays and challenges, anywhere from being almost normal to completely disabled, but he couldn’t say either way and that the neurologist would be able to give a better idea of what was ahead.

Then, as if things couldn’t get worse, my OB, by law, had to tell us that if after meeting with the neurologist and we were distraught by the news, we also had an option to terminate our pregnancy. WHAT!!!!!!!!!!!!!!!!!!!!! How bad was this? I could tell it was excruciating for him to tell us about this option, but from a legal standpoint, he had to. Some people only want perfect babies!!

My husband and I went home, we were broken. I was so disturbed that I was even thinking about terminating my pregnancy. After what it took to get here and how far along I was. We couldn’t talk to anyone about it because what if the neurologist said we were having a baby that would be a vegetable and have major health complications…do I really want her to live this way, can we live this way!! My mind was RACING!!! It was terrible. We didn’t even do the IPS screening to check for Down Syndrome and Spin bifida. We always said we could handle that.

Every time I felt my little girl kick, I felt like she was kicking me and saying, you better not get rid of me!!! It’s awful, but it’s true, she was living inside me and I had her life in my hands!!!

The Dr’s said not to Google, but I did anyway. I wasn’t looking for medical reports or Dr’s reports; I was looking for real people who had been through the same thing. This is when I came across this exact website. My husband and I read every single entry and cried the whole way through because we knew there was no way we would be terminating this pregnancy. These children are beautiful and full of hope.

I think it was all so overwhelming. Getting the news about what was wrong with our baby and then topping it off with an option to terminate!!! INSANE!!!

We had made the decision NOT to terminate before we had even met with our neurologist. We ended up meeting with him 2 days later. We were in a much better frame of mind and excited about our daughter again. Our visit with him went amazing. We had a list of questions, were in a better frame of mind to take in information and he was very thorough.

Of course as we all know, this diagnoses is not a cookie cutter diagnoses. You can have two children with two exact same MRIs and two completely different outcomes. The Dr said that based on his experience he would put our daughter on the mild end of spectrum with respect to delays, disabilities etc, with the disclaimer that he can’t be sure. This did relieve us a little and gave us a lot of hope. He said the reason her ventricles were enlarged is because the corpus callosum was missing and that they were basically filling up space.

The best way to explain this diagnosis is like this...

When you travel to the cottage, you take the main highway to get there, but, you can also get there by taking the back roads. So yes, the corpus callosum is the main highway, but the back roads work just fine also.
We finally were able to put this behind us and focus again on the arrival of our daughter. I mean we had already been through so much to get to this point!!

Time passed very slowly, my due date was September 1st. Then September 1st came and I was still waiting. My Dr agreed to induce me when I was a week over (THANK GOD)!!

I was induced the morning of September 8th and at 8:36pm, our beautiful daughter Kaycee Lynne was born. I will never forget the moment they held her up and I saw her face and heard her cry. This will sound superficial, and I don’t mean it to be, but she looked normal and sounded normal!!

The paediatricians were in the room and examined her and weighed her (9lbs 5oz) and I finally got to hold my precious girl. My son Keegan was in the waiting room. We wanted him close by because we knew Kaycee would be spending her first 48 hours in the NICU and Keegan wasn’t allowed in there, so the only way he could see her was if it was in Labour and Delivery.

When Keegan came in to meet his new sister, the first thing he wanted to do was look at her toes!! He couldn’t believe how tiny they were!! We were all in love with her and my husband and I were so in love with our family….we were finally complete.

After 45 min with Kaycee they had to take her to the NICU. I got checked into my new room and Craig wheeled me to the NICU so I could see my baby girl. It was hard to be away from her, but I knew she was where she needed to be.

After 48 hours, I was being discharged and knew that I might have to leave the hospital without Kaycee. This was awful. I couldn’t imagine going home without her. I went to the NICU and the Paediatrician was there and he told me that Kaycee was thriving. Her heart was functioning normal, her breathing and oxygen levels were perfect, she was showing no signs of seizures and she was eating like a champ!! (they actually didn’t have diapers that fit her, they only had newborn diapers and we needed size 1…most babies are premies in the NICU). We were allowed to take our baby home!!!

As we are walking out of the NICU with Kaycee in her car seat, I put my hand on Craig’s arm and stopped him, and I said “This journey is finally over”. After 5 miscarriages, and a crazy ride through my pregnancy, we finally have everything we wanted and more.

As I type this, Kaycee is about 5 ½ weeks old. She is as normal and healthy as a newborn could be. I sort of told her she had big shoes to fill because Keegan was such an awesome baby so I think she has really been trying!! She has been following light and sound since about 2 weeks, started smiling at 3 weeks and cooing at 4 weeks. Her head and neck are very strong. I know this is early, but when I look into her eyes, she is connecting with me, she is so engaged. I feel like Kaycee is going to surprise us all!! We are going to push her to be the best she can be. We had to fight to get her here and we will continue to fight for her for the rest of our lives. She is my little miracle.

My son, my husband, our family and friends were the reason we made it through this! We are so fortunate to be surrounded by such amazing people. We always tried to look at the glass half full and I truly believe in the power of positive thinking!!!

I hope our story helps someone out there the way the other story’s on this website helped me. If it does, take the time to post your story, because it is worth it.

Kaycee and her big brother Keegan

Side note: I also want to mention that in the same ultrasound that showed the enlarged ventricles, the ureter in one of Kaycee’s kidneys was enlarged and we are having some tests done to see if urine is going from the kidney to the bladder then back to the kidney. She is on a prophylactic dose of antibiotics to prevent infection, but the Dr is pretty sure this will correct itself by the time she is 2, and if not, it can be corrected with a very un-invasive surgery. So it wasn’t a huge concern, but worth mentioning.

There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Neuropsychological Evaluation - Got Questions?

2011-10-11T11:37:00.000-07:00

A few months ago, in an ACC support group that I belong to,
there was a discussion in regard to Neuropsychological
Evaluations for kids who have Agenesis of the Corpus
Callosum.
Frequently Asked Questions by parents of a child with ACC:

1. What age should my child have a Neuropsych Eval?
2. What kinds of tests will they give my child?
3. What takes place during an Evaluation?
4. How will a Neuropsych Evaluation help my child?
5. How do they take the test results and apply it?

Because these same types of questions come up on a
regular basis by many parents who have a child with ACC,
I am sharing the detailed discussion here on the blog,
(with permission from the author-parent).

Parent of 7-year-old child with partial ACC writes:

"Here is a list of the tests she had done last November for
her neuropsych eval":

Wechsler Intelligence Scale for Children-4th Edition
Beery-Buketenica Development Test for Visual-Motor Integration
Peabody Picture Vocabulary Test-4th Edition
Expressive One Word Picture Vocabulary Test
Wide Range Achievement Test-4th Edition
Wide Range Assessment of Memory and Learning
Electric Finger tapping Test
Integrated visual and Auditory Continuous Performance Test
Conners-3 Parent/Teacher Rating Scales
Personality Inventory for Children-2nd Edition
Sentence completion Test

The parent diverts to another subject regarding school testing.

The school testing was to see if she qualified for an IEP. Her testing with the school showed she had rare IQ where her nonverbal was 40 points higher than her verbal, which for age 5 only 1% in the world has this score. Her actual performance score compared to where she should be, based on her IQ score, were anywhere between 18-35 points difference.

Parent resumes discussion regarding neuropsychological
testing in a private facility outside of the school.

If you want a thorough neuro-psych eval they usually don't test until
age 6.

It was the best thing for us to get our child testing. Her rare
scores were still there, the neuropsychologist expected it to switch
but they didn't.

Her nonverbal is in the gifted range while her verbal IQ is barely
in the normal range at 81. It did show she has ADHD focus and attention problems.

We found out through the testing that the angular gyrus in the brain
that controls the language part is affected by her ACC. Her auditory
and visual processing is affected. He gave us ideas and tips on how to help her and for the school.

Note: "angular gyrus" located above in green.
The specific wording pertaining to the language comprehension deficit and the angular gyrus, in the 7-year-old child's Neuropsychological Evaluation, states:

"Together with the previously referenced language comprehension deficiency seen through her performance on the Similarities subtest of the WISC-IV, this WRAT-4 difficulty on Sentence Comprehension suggests a specific problem in the region of the angular gyrus in the left cerebral hemisphere."

"Despite her language abstraction difficulty which suggests particular
difficulty in the functioning of the left cerebral hemisphere in the area
of the angular gyrus, there was no lateralized indication of brain dysfunction through either motor or sensory perceptual testing.
Thus, this appears to be a very limited and circumscribed cortical dysfunction. She has much more evidence of normal than abnormal brain functioning."

The Neuropyschological Evaluation further states:

"Her overall intellectual ability and many of her academic skills are entirely within normal limits and sometimes performed at above average levels. However, she has shown persistent and significant difficulty in language comprehension and abstract verbal reasoning that appears to include both spoken language and reading."

The parent of the 7-year-old child with partial ACC goes on to say:

At one point due to her reading decoding skills, they were talking about taking her out of resource for language. With the results of the
testing we had done, she was kept in.

We also found out she is in the mild to moderate range, 1.5 standard deviations for possible autism but not enough to give a diagnosis for autism. The testing as a whole gave us a clearer picture of who my
daughter is and insight into some of her little quirks.

She will get testing done every 2-3 years based on her scores. Our
insurance paid for all but our copays since it was based on a medical diagnosis and not for ADHD testing. You would have to check with your insurance to see if they will pay for testing and how much. This is one testing I have never regretted doing and so glad we did it.

Where we did the testing, we came in for the initial visit so he could meet my child, talk to me about her history and what we were looking for, and for him to decide which tests to perform. Then about 2 weeks later, we were lucky and had a cancellation, we went in for the testing.

We were there from 8:00 to about 4:00 with a lunch break and mini breaks during testing if she needed it. While Emily was testing, I was filling out questionnaires such as Connors-ADHD, and another one that had 200 or so questions-can't remember the name but asked questions for emotional, behavioral, autism questions.

Then 2 weeks later I went back alone for the psychologist to go over the testing.

Some neuropsychologists spread the testing out over 2 days.

Parent of a 5-year-old child with ACC asked if they can get
good test results from a child who is young and fidgety
with an attention span that is not so good?

Reply from Parent of 7-year-old with ACC:

When is his 6th birthday? Many times Neuropsychologists have a
long waiting list or several months before the first appointment so it
wouldn't hurt to call and make the appointment now for right after
his 6th birthday if you are really interested.

In my personal opinion, this was one of the best things I could have done for my child.

This same parent goes on to say:

My child does take a low dose ADHD meds for attention and focus as
well as cognitive skills while in school. She takes 2.5 mg adderall
twice a day. Not long after we started the meds, she jumped by
leaps and bounds in her learning skills at school. She started
taking meds halfway through Kindergarten.

If you have any more questions, please feel free to email me at weimerse@cox.net

Mom of 7-year-old child, partial-ACC, colpocephaly, chiari 1, ADHD, strabismus, hydrocephalus w/VP shunt"

Thank you very much to the parent of a 7-year-old child
with partial ACC who graciously gave permission for me
to share her experience and quote input here pertaining to
her child's Neuropsychological Evaluation for others
to read and also for sharing her e-mail and offering to
answer questions.

In addition, you can read more about Neuropsychological
Evaluations in a previous post that contains test
results from an 11-year-old child's Neuropsychological
Evaluation and also provides additional input from other
parents who have a child with Agenesis of the Corpus
Callosum.

If you have something that you would like to add, please
consider posting your comment.

Medical Disclaimer: Please seek the advice of a qualified
medical doctor regarding any medication and dosage for a
person. Every person with ADHD is different and responds/reacts
differently to medications and dosage amounts.
Some people with ADHD do not require medication.

Learning Tools & Ideas #3

2011-09-04T14:09:00.000-07:00

Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 4-year-old child with ACC, says:

"About the only thing we have done that is unique, is our
son (age 4 c-acc) seems to need a lot of repetition to
retain things. So we used painters tape to make his
letters (and numbers) on his bedroom walls."

"He loved this, and it seemed to help him memorize his
letters (we are working on numbers now). We would just
do a couple of letters a week and whenever we would walk
by them we would ask him what they were. Eventually he
started to retain them."

On a personal note:

After reading this parent's tip, my husband went out and got some blue painters tape and adorned our child, Matthew's, bedroom wall with a capital "A" and "B", displayed in the photo above.

I was working on teaching Matthew the letter "B" and the sound "B" makes,

"buh buh....BOY",

"buh buh....BABY",

"buh buh....BEAR"

And he would make the sign for each word. I have been asking Matthew to show me the letter "B" and he will reach up and touch the "B" on his wall!

Then later he was standing by his television in his room (where I was also) when the "Bob the Builder" show came on, with the musical theme song.

Now this is not a show that Matthew watches, but that day it definitely caught his attention to the tune of Matthew babbling bunches of "B" sounds!! I am certain he was telling me that Bob the Builder has the "B" sound. So, with an enthusiastic smile, I told him...

"Yes, you're right". "Bob the Builder starts with the letter B", and then pointed to the big "B" on his bedroom wall.

Matthew's bedroom wall
For some unknown reason, the "A" mysteriously disappeared. My husband reported that someone → points to Matthew ← peeled the "A" off the wall, and it's sticky wadded remains were found in his bedroom. But hey, I'm all for that too...because it helps develop his fine motor skills and eye/hand coordination.

For now, we'll continue to work on the letter "B", which has remained on his bedroom wall for several weeks.

While putting this article together, I was searching the
internet and came across another neat idea using painters
tape and letters, by a different parent.

Much to my delight (with permission from the author:
Summer Kinard) I am able to re-print her terrific
idea here (complete with cute as can be pictures) for
you to see and read:

Summer, Mama of 2 adorable kids, (who do NOT have ACC), wrote:

"We are studying the alphabet, beginning with vowels. Most of the standard methods bore Pip. He abandoned the pasta gluing project after putting just six pieces onto his letter A glue outline, for instance. So I took it in a different, bigger direction. Andrew thought up the idea of putting the juggling balls over the taped outline, which was brilliant. Pip immediately "got" the lesson. Within a few minutes, he was looking for a juggling ball, and he was all, "Oh, there it is. It's on the letter A."

"Blue painter's tape is easy to peel off for at least three weeks. We'll add lowercase "a" next week."

© article and photos re-printed with permission from author.
view original article: A for a kinetic learner

Thank you to Summer Kinard for graciously allowing me to re-print your wonderful article and share it here on the blog.

Thank you also to the parent of a 4-year old child with ACC for your very informative input and great idea!

After reading these fun ideas shared by both parents, I was
inspired with all kinds of blue painter's tape letter
concoctions for how to make learning letters fun by gearing
it to a child's unique learning style and incorporating
motivational toys/items/games that the child loves.

I thought about Amanda (the mom who inspired this learning
tools section) and her son, Beau, who has partial ACC, who
LOVES matchbox cars!

I wondered if Beau might have fun playing with his favorite
cars, lining them up on top of the painter's tape letter "A"
on the floor, or maybe even on the "C" for Car?

One thought that came to me just now (for my child) is:

I plan to put two different pictures of balls (something Matthew loves) inside the top space and bottom space of the "B" on his wall.

Then we can change the pictures with new "B" words
that Matthew is familiar with and likes. He also really
loves....balloons!

You could use real photographs, drawings, you could
cut pictures out of magazines (if that's something your
child likes to do), you could take pictures of your child
holding their favorite Bear, Basketball, Cat, etc., or your
child could draw/color/create pictures of their favorite things that start with the letter "B", or whatever letter
they're working on learning.

I hope that the terrific ideas, shared by both parents, help to inspire all kinds of thoughts and ideas of your own for how to create fun techniques that fit your child's learning style.

These ideas promote Memorization, Multi-Sensory Methods and Meaningful Motivation, things that can help a child make some marvelous learning discoveries.

Plus, they also offer the ability for a child to have as much repetition as they need. And the need for massive amounts of REPETITION is one thing that many kids with Agenesis of the Corpus Callosum have in common!

Do YOU have a learning tool that you would like to share on the ACC blog?

I'd love to hear from you, and so would a lot of other people too, who will be able to see and read all about the learning tools and ideas that you use with your child who has Agenesis of the Corpus Callosum.

It is my hope that this section will become a collection
of multiple learning tools (for families to browse, see and
read about) to find a variety of new and inspiring ideas to
help their young child, teenager or grown child in many
different areas--from academics, to fine motor/large motor
skills, to sensory issues, to potty training--and anything
else that comes to mind.

Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau , where she shares some excellent ideas and fun "Learning Tools".

ACC & Moms-To-Be Story #11

2011-08-25T12:37:00.000-07:00

I am very thankful to all of the Moms who want to tell
their story about being pregnant and having a baby with
Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

Tracy, Mom of Jose, read one of the ACC Pregnancy Stories
on this blog, written by another mom, and she posted a
comment on the other mom's story. In Tracy's kind
comment she also expressed a desire to share her own
ACC Pregnancy Story here for others to read.

I got in touch with Tracy through e-mail and am
absolutely thrilled and very grateful to be able to
include Tracy's ACC Pregnancy Story here.

Thank you very much, Tracy. It is a privilege to
be able to share your story here on the blog. I
thank you from my heart for your desire to help
other people (and new parents-or parents-to-be)
through sharing your own personal ACC pregnancy
experience and story.

Written by Tracy:

Jose's Story

Our story begins during my awful pregnancy. I say awful, because that is exactly what it was. I gained 120 pounds. with our son, was in constant pain, had sciatica to the point where I could not walk for two months, had false labor a few times, a cyst bigger than a golf ball, and that is just the tip of the iceberg. When I was around 20 weeks pregnant I was seeing a high risk doctor due to all of my complications. When doing the ultra sound he informed my fiancé and I that he was concerned that our son’s (yes, he was now officially a boy) nerves in his brain were not developing as quickly as he would like, and he was concerned our child may have Down Syndrome. My heart dropped. The next 12 weeks felt like an eternity. All I did was pray and research. At 32 weeks, he informed us that he could not see the Corpus Callosum and our son was so stubborn he refused to move, even after the doctor tried to move him! We returned home, said more prayers and did more research. I was set to be induced at 34 weeks due to my placenta showing signs of starting to deteriorate. I went to the hospital 3 cm dilated and at positive 2. After two days of Pitocin and Cervidil, I was still only 3 cm, and my son was now up in my rib cage. I had to have an emergency C-section.

My son arrived on June 28, 2008, at almost 9pm! He had all his fingers and toes, was healthy as an ox, weighed in at
7 lbs 1 oz., and almost had perfect Apgar scores! I wasn’t sure if my son was different, but to me he was perfect.

Jose at 1 week old

When he was around 6 weeks old, he went for an MRI at the Children’s Hospital. It was confirmed that my son has Complete Agenesis of the Corpus Callosum. I was still unsure of what this meant for us. I did the research, but there was no hard evidence, just the whole wait and see that we still get to this day! What I did know was, I had a plan. I was determined to stick to my plan at all cost. Something inside of me told me what to do. Call it divine intervention or mother’s intuition, I had already put my plan into action, and now I knew I could never stop. We went home, and needless to say I broke down. There is no way to sugar coat it, it is the worst news any mother can ever get. I cried, I blamed myself and then got up the strength to suck it up and do what I knew I had to do.

Jose at 4 weeks old

What was my plan exactly? The main focus was treating him like a normal child, with a few exceptions. I knew he would need to be comforted a little bit more, and need extra attention. This is why my fiancé and I decided that I would now be a stay at home mom. While the income would be tight, we knew our son needed the one on one care. I only gave our son Enfamil Lipil formula, because the DHA and ARA content more than doubled that of its competitors. I knew that DHA helped aide in brain development, and was dead set on it. I read to my son every night, so much so that we could read 3 full length Disney books and he would keep his focus. Call me crazy, but I also started flash cards with him the day he came home from the hospital. Letters, numbers, shapes, and colors. My philosophy was if he needed extra time to learn, I was going to reinforce it as much as possible. I didn’t sing the typical lullabies either. I sang the alphabet, and a made up song of me counting one to one hundred. This was my son, and since there was such little information out there, I decided to go with my gut!

Around 6 weeks, my gut told me that there was something wrong with my son’s feet. I took him to 3 different doctors, and they all assured me he had a good range of motion and I shouldn’t worry. So I didn’t. My son also seemed to sleep a lot. He slept through the night from the day that he was born, and most of the day. As a new mother, I just assumed that babies needed their sleep. Turned out, it was just him needing sleep. He did however; give me his first smile at 6 weeks old. I was cleaning the house, and walked into the bedroom. I will never forget how his face lit up and this amazing smile filled his face! It filled my heart with so much joy, as it was the first sign that my baby boy knew who I was.

At 3 months old my son was starting to sit up on his own, but he would fall over a lot. By 6 months old, he weighed 30lbs, and didn’t do much of anything. The doctors were baffled that he was only eating 24 ounces of formula a day, because he was so big. They even had us admitted to the hospital so they could monitor how much he was eating. Low and behold, they discovered I was telling the truth, and didn’t find anything else wrong with him. At 6 months he did bless us with his first word, Dada! He also learned to roll from his belly to his back!

Jose at 6 months old

By 9 months old, it became clear that my son was different. I saw other babies his age walking, or about to walk, but he couldn’t do much of anything. He could say Mama, Dada, Baba, and Bobo (the Spanish word for pacifier). We applied to the Early Intervention program in our state, and it was the best decision we ever made. He qualified for PT (Physical Therapy), OT (Occupational Therapy), and Speech Therapy. They showed us many things that we could do to help our son.

Jose at 1 years old on his 1st Birthday

When our son turned a year old, the pediatrician told us he would most likely be a vegetable for the rest of his life. My initial response was devastation. Once again I sucked it up, because we refused to accept it. We put more focus on him and everything in his life became a form of therapy. Our son must have heard this because within the week, he could finger feed himself and said two additional words! He also stopped using his bottle and pacifier. We also let him sleep in a toddler bed, in which he learned to push himself off of, and he never once fell off!

Jose at 18 months old
By 18 months old my son could army crawl and roll over. By 2 he could crawl.

Jose crawling on mat
Note: faces of other kids covered for privacy
By 2 ½ he could walk unassisted for a short distance in his walker.

Jose using his walker
Note: faces of other people covered for privacy
It was also like a switch in his brain flipped! It seemed as if he just woke up and started telling us things. He could spell his name, name all of the animals and their noises, knew all of his shapes, colors, and alphabet! He was also diagnosed with spastic diplegic cerebral palsy and 5 % tibial torsion.

Our son is now three years old and amazes his doctors with his intelligence. He currently weighs 55 lbs and is still getting up on his feet and using a walker! The weight issue baffles them, as well as the whole issue with only from his knees down turning in. We do Botox injections and oral Baclofen, but they barely aid with his spasticity. We are currently trying to convince his neurosurgeon to give our son a Selective Dorsal Rhizotomy and then we want to proceed with an orthopedic surgery to correct any in-toeing that is left over. We then believe that he will walk without any assistance. He is the most laid back loving child that anyone ever meets. He is filled with hugs and kisses almost all day long!

My greatest advice to anyone just getting the diagnosis, is to not give up on your child when the doctors think that things are impossible. Children with this condition are capable of so much more than anyone could possibly imagine. We are fortunate to have another family in our life with a little girl one year older than our son with the same diagnoses. They are very similar to each other in terms of reaching milestones, with the exception that she started talking earlier and she is a lot more vocal! They both seem to show advanced intelligence levels! (She also started DHA from birth) So please, look at my son as a story of inspiration. He has gone from the doctors telling us he would never be anything more than a vegetable to having advanced cognitive function, and the biggest issue seems to be the nervous system issues with the C.P. (Cerebral Palsy). However, he gets around well with his walker, and with today’s surgical technique he will most likely walk by the time he enters kindergarten!

Jose

There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Learning Tools & Ideas #2

2011-08-18T12:43:00.000-07:00

Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 6-year-old child with ACC and hydrocephalus, says:

"When our son was non-verbal we used the Signing Time
videos to teach him sign language. He was already
infatuated with music so the videos held his attention."

Note: check your local library to borrow Signing Time videos.

"We also used the multi colored foam letters and numbers as
a bath tub toy. By the time he started Pre-Kindergarten, he
could count to 20 and knew all of his letters and colors."

UPDATE!
Re: Little Tikes Bath Letters and Numbers

Please be advised that testing in 2008 by HealthyStuff.org shows that they are toxic and contain high levels of mercury.

Thank you very much to the parent of the 6-year-old child
for your great ideas!

I have to say that I also use Signing Time videos with my
child, Matthew, who has ACC, and we love them! I borrowed two of the Baby Signing Time videos from the library so I could try them with Matthew. He really liked them. Then I borrowed several of the "Signing Time" videos. We liked them so much that we purchased some of his favorites!

Signing Time - read my personal blog post review

Other Sign Language resources (we also use) are:

Baby Einstein My First Signs-See and Sign with Baby

Baby See 'N Sign (Volumes I and II)

My Smart Hands

The bath letters and numbers, the parent mentioned,
provides visual and (hands-on-touching) sensory input
for a child, allowing a multi-sensory learning experience.

Many kids with Agenesis of the Corpus Callosum learn
best through the use of multi-sensory teaching methods.
In other words, when they are learning something they
benefit from receiving input to 2 or more of their 5
senses: (See, Hear, Taste, Smell and Touch)

Thank you so much to the parent of a 6 year old child with ACC for your great ideas!

Have a learning tool that YOU want to share on the ACC blog?

Tell me all about it. I'd love to hear from you and so
would a lot of other people, too, who will be able to
see and read all about the learning tools and ideas
that you use with your child who has Agenesis of the
Corpus Callosum.

It is my hope that this section will become an expansive
collection of numerous learning tools (for families to
browse, see and read about) that will offer a variety of
new and inspiring ideas to help their young child, teenager
or grown child in many different areas--from academics, to
fine motor/large motor skills, to sensory issues, to
potty training--and anything else that comes to mind.

Do you have something that you would like to add?

Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau , where she shares some excellent ideas and fun "Learning Tools".

Minnesota NODCC Regional Gathering - Update!

2011-08-16T15:01:00.000-07:00

UPDATE:

Last month (July) in a previous blog post, you read about the August 13, 2011 NODCC Regional Gathering to be held in Minnesota for families who have a member with Agenesis of the Corpus Callosum.

That Regional Gathering took place last weekend. Want to have an inside view?

Well, the event was a huge success and thanks to Amanda Weichers (the NODCC Regional Leader for Iowa, Minnesota and Wisconsin), who wrote and shared all the details and goings on, in her recent article, you get to read and see all about it!

Thank you, Amanda, for allowing me to reprint your article here on the ACC blog for others to read.

"If you build it, they will come."

OK, so a cheesy title but hey it's an Iowa thing. For those who don't know, it's a quote from a movie made here in Iowa; Field of Dreams (Dyersville, IA) with Kevin Costner. It's an oldie but a goodie. Anyways.......That saying held true for me after a successful weekend in Minneapolis, Minnesota. This past weekend I organized an event for the NODCC; a regional gathering for families affected by ACC. I knew from information given to me by the NODCC, that Iowa didn't have many families affected by ACC. If they ARE out there, they just haven't connected with the NODCC and we aren't aware of them. It's a little lonely here in Iowa so I knew I would need to plan the event in a bigger area where more families with ACC were located if I expected to get anyone to attend. I ended up choosing Minneapolis, MN and what a great choice it was!

I arranged for our event to take place at the Radisson by the Mall of America. We were able to get a meeting room there which gave us the view of the huge indoor water park at the hotel; the Waterpark of America. We set the room up with some informational materials and a play area for the kids with some of Beau's toys. We had a buffet style lunch along with some goodies for dessert.

The last ingredient for a successful day was the people! Naturally on the day of our event a main roadway and exit to the hotel was closed, but people still managed to make it through the big city traffic jam. Including our family, we had a total of 11 families there to share in the fun afternoon. Everyone was so friendly and easy to talk to. We were all in the same boat that day. We were complete strangers with one thing in common; ACC. OK, make that two things; ACC and a huge love for our children! We're all in different stages of dealing with the ACC. Some are more willing to talk about it, others not so much; some have young children with ACC, others have grown children with ACC and so on. No matter what, I feel like some great strides were made this weekend. All of the families with the exception of ours, live within miles of each other in Minnesota and they never knew it. They never realized they had a support system right there! How rewarding to see people finding out that they have other families that "understand" so close by.

This is a group shot of all of the families that were in attendance this weekend. What a good looking group!

Topics of conversation included discussion about the IPAD 2 and using it as a teaching tool as well as a communication-like device. Above is a picture of Max's dad, Greg, with their service dog Zadie with Andy and Beau checking out the IPAD 2 that Max uses.

One of my favorite memories of the weekend has to be a friendship that I saw occurring between two young gals with ACC, Jessica, 13 years and Madeline, 12 years. My husband and I both looked at each other late into the day after observing the two girls and both recalled a memory from our trip to the national conference in San Francisco. There were 2 girls that were in their upper teens, that had met through the conferences of the NODCC and had become such great friends over the years. They had ACC in common and they had obviously built a strong relationship as a result. Andy and I both recalled how inseparable they seemed at the conference and how heart warming it was to see them together. We watched the very same thing happening this weekend and I hope their parents don't mind that I shared this story. I just know that as a parent of an ACC child I've heard so many stories about how hard it is for these kids to develop and maintain friendships. I worry so much about Beau not having friends or feeling isolated because he is "different". Watching these young ladies come out of their shells and have such a fun evening made the whole planning of the event completely worthwhile.

One of the other topics that came up (once again thanks to Max!) was the service dog. Max and his dog Zadie were a huge hit this weekend and it was great to see a service dog in action. We have thought quite often about the benefits of a service/seizure alert dog for Beau. Heaven knows it might allow me to get better sleep at night! Below is a great picture of Max, his dad Greg and Zadie.

After our time ended in the conference room, some of the families stuck around and played in the water park. It was another opportunity to talk, play and laugh. Beau loves water, so he had a great time. If you combine that with cute girls, he was in heaven. I think his face in the picture below says it all.

Beau with his new friends from the NODCC gathering.

The next morning we slept in a little bit, trying to recover from our busy day the day before. We decided to visit the Como Park Zoo on our way back home. We met up with the Prusi family at the zoo and enjoyed 2 hours of animal watching and talking about our two young sons with ACC.

Owen, Maren and Beau at the zoo.

Amanda (her husband-Andy) and their son, Beau

I can't thank the great ACC families of Minnesota enough for welcoming our Iowa family to the state. In my mind it was a huge success and each year can only get bigger and better. Next time, you Minnesotans may have to come south and visit the great state of Iowa!

This thing called ACC has brought all of us together; people who never would have met otherwise and for that I'm grateful. I've met some wonderful families not only at this event but when we were in California. Each time we do something like this I feel blessed and re-energized to do more to help those affected by intellectual disabilities.

I will end this with one of my favorite poems. It was written by Edna Massionilla and is titled Heaven's Very Special Child. After meeting such great parents it only seems fitting. The main thing I want to get across by using this poem is that God chooses great people to be the parents of special needs children. We were chosen for a reason and are so lucky.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'llknown as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

by Edna Massionilla
December 1981
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.

© article and photos re-printed with permission from the author, Amanda.

view original story

Want to be a part of the next Iowa, Minnesota, Wisconsin
Regional Gatherings?

Contact, Amanda, your NODCC Regional Leader:

Iowa-Minnesota-Wisconsin
Leader: Amanda Weichers
e-mail: amanda@campfirestoriestv.com

Other NODCC Regional Leaders and Contact Info:

Florida
Leader: Vivian Avila
e-mail: vavila@med.miami.edu

Illinois-Missouri
Leaders: Megan Mutti
e-mail: parentpathfinder@gmail.com

Fred and Karen Petelle
e-mail: petellek@att.net

Northern New England (ME, VT, MA & NH)
Leader: Theresa Walker
e-mail: theresawalker@comcast.net
Summer Picnic Regional Gathering to be held on
Saturday, August 26, 2011 from 12:00 (Noon) till 3:00 pm.
Contact Theresa for complete details.

U.S.A. Regional Groups

Region 1 Maine, Vermont, Connecticut, New Hampshire, New York, Massachusetts, Rhode Island, New Jersey

Region 2 Pennsylvania, Ohio, Indiana, Michigan

Region 3 Delaware, Maryland, Washington DC, Virginia, West Virginia, Kentucky, Tennessee, North Carolina

Region 4 South Carolina, Georgia, Florida, Alabama, Mississippi, Louisiana

Region 5 Wisconsin, Minnesota, North Dakota, South Dakota

Region 6 Illinois, Iowa, Missouri, Nebraska, Kansas

Region 7 Arkansas, Oklahoma, Texas, New Mexico

Region 8 Colorado, Utah, Wyoming, Montana

Region 9 Idaho, Oregon, Washington, Alaska

Region 10 Arizona, Nevada, California, Hawaii

Do you want to become an NODCC Regional Leader in your region?

If you have an interest in becoming an NODCC Regional Community Leader for your regional area...

Please read more about the NODCC Family Partnership Programs (FPP) below:

Family Partnership Programs

Sign Up Here

NODCC e-mail: info@nodcc.org

NODCC stands for: National Organization for Disorders of the Corpus Callosum

Learning Tools & Ideas #1

2011-08-11T22:25:00.000-07:00

Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 2 1/2-year-old child with ACC, says:

"I saw your email in the ACC listserv and wanted to add something that has helped my daughter. One thing that has helped her learn her letters is the Leap Frog Refrigerator Magnets."

LeapFrog Fridge Phonics Magnetic Letter Set (uppercase)

LeapFrog Fridge Phonics Magnetic Letter Set (lowercase)

Note: there are a few older versions of this LeapFrog toy that look different

"I got it for her 2nd birthday and her speech person told me it wouldn't help her at all. But she loves the music and whenever I am in the kitchen cooking dinner she would play with it. She is just about 2 1/2 and now knows a lot of her letters and even goes in the kitchen, takes a letter off the fridge and brings it to me in another room and tells me the letter and what sounds it makes."

I asked the parent if her daughter uses it with uppercase or lowercase letters.

Parent's reply:

"We are using it with the uppercase letters."

Parent also said:

"Another thing that has helped her (I forgot until you mentioned the lowercase letters) is the Rock 'N Learn: Letter Sounds DVD. (We only focus on the beginning part with the letter sounds. The later part of the DVD goes into sentences and things that are a little advanced for her right now). It has both upper and lower case letters and says the letter, the sound and a word that begins with that letter with a picture. It also shows a mouth of a person saying the letter and sound."

click picture to enlarge

Read more about the DVD:
http://www.rocknlearn.com/html/letter_sounds.htm

Surprisingly, I recognize and am very familiar with both of
these learning tools, mentioned by the parent. I have owned
both of these learning tools for several years and use them
with my own child, Matthew, who has complete Agenesis of
the Corpus Callosum.

My child LOVES watching the part in the video where the
person's mouth/lips move to say the letter, make the sound
of the letter and say the word of the object that begins
with that letter! This DVD has a lot of music and singing
in it, a big plus!

The LeapFrog Fridge Phonics toy also helps encourage fine motor skills, requiring a child to manipulate the letter, turn it to the correct position to put it in the toy, then take it back out.

We own the older version of the LeapFrog Fridge Phonics toy below.

Note: Please be aware that the magnetic alphabet letters are not interchangable between the old and new versions.

Put the letter "A" in...
Push the "A"...
And you hear it say and sing (in a kid voice) with music...
♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫

"A"
A says "A"
A says "ah"
Every letter makes a sound
A says "A" and "ah"

And when you push the musical note, you hear the "ABC's" song (in a kid voice).

Lastly, the parent adds this info regarding Sensory Input:

"Some sensory related things that have helped her lately are the swing and the pool (which I found out just kind of by chance since it is summertime and we are outside doing those activities a lot more now)."

"Her speech has improved greatly just recently and it seems to be a lot better when she is on the swing or in the pool. Her OT and PT say it is all sensory related. The swing is because of the motion and how it relates to her vestibular system and the pool because of the added pressure the water has on her body."

OT = Occupational Therapist PT = Physical Therapist

Thank you to the parent of a 2 1/2 year old child with ACC for all of your very informative input and ideas!

Have a learning tool that YOU want to share on the ACC blog?

Tell me all about it here. I'd love to hear from you and so
would a lot of other people, too, who will be able to
see and read all about the learning tools and ideas
that you use with your child who has Agenesis of the
Corpus Callosum.

It is my hope that this section will become a collection
of multiple learning tools (for families to browse, see and
read about) to find a variety of new and inspiring ideas to
help their young child, teenager or grown child in many
different areas--from academics, to fine motor/large motor
skills, to sensory issues, to potty training--and anything
else that comes to mind.

Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau , where she shares some excellent ideas and fun "Learning Tools".

ACC and the Heart ♥ medical awareness

2011-08-07T23:03:00.000-07:00

Does your child have Agenesis of the Corpus Callosum?

Do you have a loved one or family member with ACC?

This is a serious and very important message regarding
the heart!

20% of kids who have ACC have heart problems.

That means:

1 out of every 5 kids with ACC has a heart condition.

Read what Dr. Elliott Sherr, an expert on ACC, says:

"Almost 1/4 of the kids had heart problems. Now these are not innocent murmurs that then go away. These are actually kids who have real heart disease.

So my recommendation on any child with ACC is that they get a comprehensive heart evaluation."

Who is Dr. Sherr?

Dr. Elliott Sherr is a Pediatric Neurologist at
University of California, San Francisco (UCSF). Dr. Sherr is highly knowledgeable and an expert on Agenesis of the Corpus Callosum. He sees many patients, children, who have ACC and Dr. Sherr is highly respected and well-liked by parents. Dr. Sherr is on the Board of the National
Organization for Disorders of the Corpus Callosum (NODCC) and he speaks at the annual Conferences.

A few of the congenital heart conditions seen with ACC are:

Atrial Septal Defect (ASD)
Ventricular Septal Defect (VSD)
Coarctation of the Aorta
Tetralogy of Fallot
Hypoplastic Left Heart Syndrome (HLHS)

The fact that 20% of kids with ACC have a heart
condition is not limited to just babies or very young
children with ACC. It can affect older kids with ACC, too.

See for yourself. I came across the parent of a teenage child
with partial ACC who shares a very eye-opening story about
her daughter's heart.

Jody, parent of 15-year-old child, said:

"My 15 year old daughter, Jurie, has Partial Agenesis of the Corpus Callosum (P-ACC) with dilated lateral ventricles of the occipital and temproal horns. Due to the dilated lateral ventricles, she has hydrocephalus which fills the ventricles. She doesn't need a shunt because there is no extra pressure from the fluid. She has a lot of sensory issues with this condition, as well as, dyspraxia symptoms. I homeschool her because she had difficulty learning in a classroom full of kids.

I have four children, and Jurie is the onlly one on mine who has P-ACC. The doctor, however, ordered the genetic testing, and Jurie's was not genetic. Jurie was also born with an Atrial Septal Defect, which is a hole in the heart. We jjust found out that she had the hole less than two months ago [at 15 years of age] because no doctor had ever heard the heart murmur. This was because the hole was rather large, 19 mm, and the blood flow was large through the hole. She had the hole repaired on April 15 using a heart catheterization. She has strabismus/crossing of the eye and moderate scoliosis, also. She suffered from migraines for years, but by fixing the heart this has taken care of the migraines."

Jody's child was not diagnosed with partial ACC until she was
14 years old.

When a person is diagnosed with Agenesis of the Corpus
Callosum, they are at risk for having midline defects.
One of those possible midline defects includes the heart.

A person who has ACC (a congenital birth defect) is at
risk to possibly have a congenital heart defect.
Congenital means they are born with it.

My own child, Matthew, who is 17 years of age, who has
complete ACC, was sent to a Pediatric Cardiologist when
he was an infant, after he was diagnosed with ACC.

He had a comprehensive examination and he also had tests
done when he was a baby, which ruled out a heart defect.

Possible tests might include:

echocardiogram

electrocardiogram (EKG)

The medical tests (for my child) were done right in the
doctor's office and I received the results of the tests
immediately.

If my child, Matthew, had not been seen by a Pediatric
Cardiologist and had not been tested when he was a baby
to rule out a heart defect, I would definitely schedule
an appointment for my child now to have a comprehensive
heart evaluation by a Pediatric Cardiologist, even at
his age of 17 years old.

Please be aware that there are some congenital heart
defects (present at birth) that may remain unrecognized
until adulthood.

As a parent, myself, of a child with ACC, this is a message
from my ♥ heart to each one of you reading this who have a
child, a family member or a loved one who has Agenesis of the Corpus Callosum.

Please be advised the National Organization for Disorders of the Corpus Callosum (NODCC) website states:

"Twenty percent (20%) of patients with DCC have cardiac anomalies and therefore all DCC patients should have a careful cardiac evaluation."

DCC=Disorder of the Corpus Callosum

Note: Dr. Sherr's quote about ACC and heart defects is found at Dr. Sherr Talks about ACC

Click on "comments" below and read what others are saying:

NODCC Regional Gathering - IA, MN & WI, Join the fun

2011-07-22T00:40:00.000-07:00

I was recently contacted by Amanda Weichers, the mother
of 3 1/2 year old Beau. Her son, Beau, has partial
Agenesis of the Corpus Callosum and Epilepsy.

Amanda is a volunteer for the National Organization
for Disorders of the Corpus Callosum (NODCC) and she agreed
to put together a USA regional family gathering. Amanda is
specifically in charge of the states of:

Iowa, Minnesota and Wisconsin.

The upcoming regional gathering will take place on:

Saturday, August 13, 2011 at 12:00 p.m. (noon)

AT:

Radisson Hotel by Mall of America/Water Park of America
in Bloomington, Minnesota.

Note: Water Park of America is located right in the hotel

Amanda says:

August will be here soon and I can't wait for our Midwest area
to get together in Minneapolis for our NODCC regional gathering.
I have organized this event in the hopes that families (affected
by a disorder of the corpus callosum) from Iowa, Minnesota,
Wisconsin and any other surrounding states might attend and find
comfort in meeting others that "understand".

I was certainly hoping that more might step forward and be able
to attend, but as of right now there are only 3 other families
besides ours that are coming. Some is always better than none,
so I am grateful for those that are able to attend.

It will be an awesome day with a great meal, great
opportunities to talk and then fun at the indoor water park.

We plan to follow it up the next day with a trip to the
Como Park Zoo in Minneapolis.

It will be a nice little vacation for our family from Iowa and
we'll be able to make some new friends as a result.

If anyone else is interested in attending, please contact me for
details. The more the merrier.

Amanda also states:

"Because some states around us don't have a volunteer,
I've been contacted by some in South Dakota and Nebraska
and I've told them they are more than welcome to join us."

Please contact Amanda Weichers for complete details.

Amanda@campfirestoriestv.com

Visit Amanda's new blog about her son, Beau.

Fireworks - a dazzling 'sign language' discovery

2011-07-05T11:29:00.000-07:00

Yesterday evening, the 4th of July, we were
strolling through our neighborhood with our child,
Matthew, who was riding his bike - 3-wheel trike.
It was nearing dusk and excited kids were outside
with their sparklers and other fireworks.

We could hear the beginning pops, booms and
thunderous noises of fireworks during our walk.

At one point, while Matthew was riding his trike next
to us, I noticed that he made his right hand into a
fist (thumb sticking out) and raised his fist
straight up by his face (holding it tightly and
shaking his fist slightly). I haven't ever seen
him do that before and thought it was unusual.
But he stopped and went back to riding his bike.

Several more times, Matthew's raised shaking fist
went up in the air by his face. I got a little
concerned and wondered why.

Then all of a sudden it hit me that Matthew had made up
a sign for fireworks!!!

His raised shaking fist corresponded with each time
he would hear the noises of fireworks.

Matthew has Agenesis of the Corpus Callosum and
he is non-verbal. With the exception of a handful
of words, he communicates through a Dynavox V
communication device and through some sign language,
too.

BIG, beautiful fireworks were going off up in the sky
(a few streets away from us) that caught Matthew's
attention (and our's, too). They were spectacular!
Matthew was enthralled!

Between the few big booms of exploding colorful sparkles
against a darkened sky and the two groups of kids on our
street (to our left and right), busily putting on their
own show, we were right in the middle of a fireworks display
that we weren't even expecting.

As we headed home, I went straight to the computer
to look up the American Sign Language (ASL) sign for
"fireworks" because I didn't know the real sign for it.

Although I loved that he created his own made-up sign.

I wanted to know the real sign and I want him to know it, too.

My search for how to sign the word "fireworks" led me to
an awesome baby sign language website with free video
demonstrations that I want to share with you.

Check it out:

My Smart Hands-Baby Sign Language Dictionary

The Main website is My Smart Hands

They also offer My Smart Hands baby sign language dictionary app with over 300 signs as well as a few other apps available for your iPhone, iPod or iPad, for purchase at itunes.

You can also explore previous ACC blog posts regarding
other sign language resources:

Sign Language: My First Signs

Learn Sign Language - Baby See 'N Sign

Sign Language - Signing Time

Meet Kelley - An Adult with ACC

2011-06-16T10:17:00.000-07:00

photo taken by Kelley on recent camping trip on a hike up Table Rock Mountain in South Carolina

"Hi, I’m Kelley and I currently live in North Carolina.
I was encouraged by Sandie to share my story, although
I don’t know how informative it will be for those looking
for ways to help their struggling ACC kids.

I first found out I had Complete ACC and a small Chiari I
malformation eleven years ago at the age of 35, after an
MRI was done because I was having tingling in my hands
and feet. The tingling was apparently partly due to the
nerve compression that can come with Chiari and was
successfully resolved with bodywork such as myofascial
release. I was deemed asymptomatic by my neurologist in
regards to the ACC.

I have been on a medication to treat a mild seizure disorder
since the age of 17. It was not until the diagnosis of C-ACC
that the likely reason for the seizures was determined. The
ACC probably also explains why I am left handed (at least
according to one doctor I’ve talked to).

I had no developmental delays as a kid. I attended
mainstream classes throughout school. In addition, I
took some classes geared to gifted and talented students
during high school. I got As and Bs in all of my classes
except math, where I got Bs and Cs. I also struggled with
the math-heavy science of physics. When it came to math,
I could learn and understand the lessons, but would not
necessarily retain the knowledge three months later. The
classes I loved most were English, history, science, and
foreign languages. I liked math and physical education
the least. As far as extracurricular activities, I played
clarinet for three years and was a member of the yearbook
committee and school astronomy club for a few years.

I went on to earn a Bachelor’s Degree in English and a
Master’s Degree in Library Science by the time I was 25.
I have been working in various corporate and academic
libraries ever since. I own a home, drive a stick shift
car, ride a bike, and recently completed training for and
running my first half marathon (13.1 miles).

I was a bookworm and a teacher’s pet through most of K-12.
I was very shy and easy to tease due to my curly hair and
my love of learning. This caused me to prefer the company
of adults from an early age. The serious-minded social
world of adults just made more sense! I am also the
child of a divorce and I think that impacted my early
self confidence around others. But I always had a few
very close friends in school. And I never had trouble
reading social cues. I’m sure there were plenty of times
when overall I felt excluded, different, and lonely.
But I learned to cope with the friends I had and make up
for anything missing by immersing myself in schoolwork
and reading.

I read a lot while growing up. I remember taking a
standardized test in 6th grade that measured reading
and math competency. I don’t remember what my math
score was, but I tested at a 12th grade reading level.
While I may not have had as many friends or social
outings as I’d have liked in grades 7-12, the worlds
of JRR Tolkien, Charles Dickens, James Michener, and
many others, kept me pretty satisfied.

I was an only child until the age of 11. I sometimes
wonder if I would have been a little more adept socially
if I’d had an older sibling to learn from. Most of the
other kids at school seemed so immature that I reached a
point as a preteen where I just didn't bother to try to
associate much with them!

The three very good friends I had in junior high and high
school are people I still have some contact with today.
And I also keep in touch regularly with my two closest
friends from college.

For any ACCer or the parent of one who has challenges
with social skills, my best advice is just to observe
and practice those skills until they become easier. As
I stated earlier, I was shy and introverted growing up.
I didn't always know what to say to people. But I had
the good fortune to date a very extroverted man for
several years in my 20s. He would turn to strangers
sitting in the next booth at a restaurant and ask them
what they thought of some current, newsworthy event.
I watched him have many fascinating conversations and
make new friends and acquaintances using this technique.
I asked him how he had the courage to be so open, because
sometimes the stranger(s) he addressed would just give
him a rude look and turn away. He said he never took
these rebuffs personally and always looked forward to
what the next new conversation might bring. I more or
less picked up this same attitude and now really do
enjoy interacting with strangers. But I still consider
myself an introvert, because to recharge my mental energy
I need to spend quality time alone.

I am not married and have no children, but I have had
half a dozen healthy, long-term relationships. I have
been dating a wonderful man for a year now and am very
happy. While I currently live 2,000 miles away from my
parents and extended family, I keep in good touch with
them through regular phone calls and visits home a few
times each year.

My ACC has not been a defining element of who I view
myself to be. I am a little clumsy in that I brush into
walls sometimes while rounding corners or stumble over
my own feet. But I accept the bruises that occur. I
have a relatively serious and rational outlook on life
which gets me impatient when I'm hanging around anyone
whose only interest is joking around. (Don't get me
wrong - I love and cherish humor, especially British
comedy!) I have a poor sense of direction. But patience,
maps, asking for directions, and/or using a GPS unit
always eventually get me where I want to go. Excessive
multitasking mentally wears me out, but I make do. Are
any of these traits related to my ACC? Maybe. Maybe not.
I am not convinced that they are because plenty of people
with ‘complete’ brains have similar issues.

I met a few other adults with ACC issues at a conference
a few years ago. The one trait that I seemed to share
most with them was a tendency to ramble while having a
conversation. My conversation style is not succinct,
but rather very stream of consciousness oriented. I
can tend to verbalize tangential information that is
not of immediate relevance to the topic at hand, so it
may take me a while to get to a point! This trait
sometimes gets my family, friends, and boyfriend
frustrated. But for the most part they have learned
to adjust to it. But is this characteristic attributable
to ACC? Again, I do not know for sure. Before meeting
the others with ACC, I thought I communicated that way
due to all of the long-winded 900 page Victorian novels
I read when I was young!

My passions include reading, hiking, travel, and being
a lifelong learner. It is important to grow personally
and professionally throughout life and I endeavor to do
that!

I hope my story will at least demonstrate to people that
ACC comes in many shapes and sizes. I do not know why I
have no obvious deficits. One ACC researcher I talked to
at a conference asked me about my family background.
After I filled him in, he determined that my high
functionality was due in part to being raised in an
environment with a lot of intellectual activity and
stimulation. Yes, all of that was encouraged in my
family, but I know that there are additional pieces
to the puzzle that may never be clear."

I am thrilled that Kelley contacted me because her
story IS very interesting, worthwhile and helpful.

Many parents who have a child with ACC are told by the
doctors (myself included) that there are people out there
leading 'normal' lives who are not affected by ACC - who
may not know they are missing their corpus callosum.

As parents we hear about this possibility but seldom are
able to see it backed up with the reality. However,
thanks to Kelley...she has made this truth very real.

I am grateful to Kelley for contributing her personal
ACC story and making it available here on the ACC blog
for others to read. Thank you very much, Kelley, for
taking the time to touch the lives of other people.

If you want to leave a comment for Kelley I am
sure she would appreciate hearing from you.

If you are an adult who has ACC or a corpus callosum
disorder, do you want to share your story?

Each person is unique. Every story is welcome and
every story is worthy.

I would love to hear from you. Please send me an e-mail

Considerations For Educators of Students With ACC

2011-05-06T20:12:00.000-07:00

“Considerations For Educators of Students With ACC”:

Mr. McCallum wrote this document. He is a teacher
who taught a child with Agenesis of the Corpus
Callosum in his classroom. He offers detailed and
valuable information.

If you would like to receive a copy of
“Considerations For Educators of Students With ACC”
sent to your e-mail please send me an E-Mail request.

In your e-mail it is helpful to know if you are
a parent or a teacher requesting the information.

Meet Abbie - An Adult with ACC

2011-05-02T14:44:00.000-07:00

Abbie and her dog, Scout.

Abbie's Story:

When did you find out that you have partial ACC? How old?

"I think I was probably told about it when my parents found out,
which was through an MRI when I was about 2. The doctors were
actually looking for something more life threatening when they
found it, so they didn't take much notice or act on it. I didn't
really start to feel any different from others or notice until
I was about 8 or 9. I was also diagnosed with congenital
panhypopituitarism and absence of pituitary gland."

What did you struggle with in school?

"Being a shy one and not looked up to or noticed much by other
students, not knowing what to say when other girls did talk to
me did not help this. The fact that the teachers and students
thought I looked fine and coped so well, so they didn’t always
believe I needed extra help and understanding."

What did you enjoy most and do well at in school?

"I was always very organized, otherwise I was not able to keep
up and got anxious and stressed. I was always waiting for a big
load to come that I would struggle to keep up with, but it never
did because I worked really hard, maybe a little too hard and
managed to keep up more then some of the other students. And I
completed my VCE (Victorian Certificate of Education), which I
did’nt think I would be able to do many time during my years at
school, because it was hard."

VCE is the certificate awarded to secondary students who complete
high school studies Year 11 and 12 or equivalent in Victoria, Australia.

Did you struggle with social skills in school?

"In primary school I don’t remember struggling much. Since I moved
to the city from a small community and started high school, I have
never had the same kind of friendship/s I had in primary school. I
feel anxious and awkward all the time when having to talk to people,
I sit for a long time without saying anything because I can’t think
of what to say to match the situation, I get exhausted after spending
time with any friends. I have a couple of anallergies that may help
people with a DCC out there.

1. Socialising for me is like standing on the side of a wide,
busy road with cars going both ways. You have to get across the road
with no traffic lights, then when you finally get to the other side,
you have to turn around and cross back over the road again. Do this
over and over a few times and you will discover it is physically and
mentally exhausting. This is what socializing feels like for me.

2. When you feel exhausted from being with people and socializing,
or crossing the busy road over and over again, your body and your
brain becomes like a torch with a flat battery. It still has a
little light left and can put on an act and work a little bit,
but eventually the light goes out and it can’t work any more.
An ACCer’s or DCCer’s brain cannot work as fast and as long as
a person with normal brain connection, because they have to work
twice as hard to keep up with everything, therefore, we get tired
quicker and things become harder then they may really be.
Depending on how much work my torch has had to do is how much
I can put into socializing and how how normal I can act. More
often then not, this is not very much. I hope this makes sense
to people, it was a bit hard to explain."

Did you make friends easily in school?

"Not at high school. I had a couple of friends but talking and doing
things together was always very awkward and hard to organize. Our
families and upbringings were very different and I had nothing in
common with them. I never had the courage or the no how to mix
with others and make other friends, so I stayed with the 2 I had
and in the end did not continue contact with them. I am still on
the search for how to make friends and who to make friends with,
but in 7 years, now at Uni in adult education, I still feel I am
not getting anywhere. I have a couple of friends who I hang out
with one at a time, but am not really connecting with them and
often don’t enjoy spending time with them because it is too
awkward. They also have their own issues with how to socialize."

Do you still struggle today with social skills as an adult?

"Yes. I am not really sure what else I can say without repeating
myself. I could go on forever but it might get confusing, because
I am confused about the whole issue myself."

Did you attend a mainstream classroom?

Yes. All my schooling was mainstream. I repeated my last year of
primary school (grade.6) because I wasn’t ready emotionally to go
into high school yet."

Did you receive Special Ed resource help?

"I did receive some extra assistance in primary school when I got to
grade 5 or 6 and still could’nt tell the time or count money. I had a
modified subject load in the last 2 years of high school, was in
classes where the teacher gave extra assistance, had extra free
study periods where I went to receive one on one help from special
needs teachers and was granted one on one tutoring during my last
year of secondary school for exams and big loads of work. When I
was away from school I received a modified load of work to catch
up on when I returned and restrictions on how much time I was to
spend, otherwise I never stopped working."

Can you ride a bike and drive a car?

"I have a bike I bought 6 years ago but have only ridden about twice
because I can’t navigate small spaces and people. I do not and
probably will not drive"
.

Did you attend college? Did you get a degree?

"I have just started my first proper course of study of certificate IV
Liberal Arts, after finishing year 12 in 2009, I needed a brake year to
fill in some gaps to find some interests, socialize a bit more and
improve my life skills. I did a certificate I course of transitioning
from high school to other options in life, and am choosing to continue
my study for as long as I can."

What specific life skills are challenging for you?

The basic every day life skills I am working to improve are simple
things like getting anywhere on my own on public transport, as I
won't be able to drive for a while yet, if ever. I am aiming to
eventually use public transport as if it were my car (though it
will always takes a lot longer then driving) I also need to improve
my verbal communication skills- being myself and not being affraid
of my difficulties, being less awkward when talking to people and
the biggest thing of all, taking things as they come in a conversation
and not worrying so much about what I can say next. I am also on
the search for an interest and something I can do for enjoyement,
because everything I am doing at the moment is things I HAVE to do
like studying, appointments and jobs at home. I need something else
to do with my time that is regular and fun."

Do you have a job and if so what do you do?

"No job. Focusing on study."

Are you married? Single?

"Single. Never been in a relationship. Would like a close guy friend to
hang out with and be comfortable with talking to, but not ready for
anything more."

Do you have children?

"No"

How does ACC affect you today as an adult?

"Socially, stressing too much about things most people don’t worry
about, feeling nieve for my age, feeling too dependant on others,
being behind in life experiences. Not being a relaxed person."

What do you enjoy doing the most in life?

"Watching movies. Watching a movie screen, though not good to do
too much is good. It takes away tension when being with someone
else because you don’t have to talk. It is relaxing and fun. It
means you don’t have to think about anything for a couple of hours."

What are you passionate about?

"Finding a friend or a group of friends I can keep who I want to be
with. Finding something am interested in and enjoy doing that I can
stick to and be productive with."

Abbie, P-ACC, 20 years old, Australia.

It is an absolute privilege to be able to include Abbie's story
here for you to read.

Thank you very much, Abbie. It was a pleasure to exchange
e-mails with you and get to know you a little better. I
appreciate your openness, your honesty, the way you let me
know your thoughts and how you expressed yourself. I
enjoyed communicating with you.

It is my hope for you, Abbie, that you will see all of the
beautiful things about yourself and your abilities because
you are an amazing person who has already accomplished big
goals.

Be your very own sweet, unique self and believe in all of
the possibilities. I know and believe with all my heart
that you WILL discover an interest that you are passionate
about and it will be soothing, relaxing and lots of fun.

If you want to leave a comment for Abbie I am
sure she would appreciate it.

If you are an adult who has ACC or a corpus callosum
disorder, do you want to share your story?

I would love to hear from you. Please send me an e-mail

ACC & Moms-To-Be Story #10

2011-04-27T15:03:00.001-07:00

I am so thankful to all of the Moms who want
to tell their story about being pregnant
and having a baby with Agenesis of the
Corpus Callosum.

Each story is as unique as each child who has ACC.

I received an e-mail from Shea, the Mom of Levi,
who expressed a desire to share her ACC Pregnancy
Story here for others to read.

Thank you very much, Shea. It is a
privilege to post your story and I thank
you from my heart for your willingness to
help other people through your own
personal pregnancy experience.

Written by Shea:

Levi's Story

We were so excited to be expecting our 3rd baby in the
summer of 2010. Originally due September 6th we were
going to keep it a "surprise" and not find out the sex
of the baby. At my 30 weeks ultrasound we expected it
to be like all the others, easy and routine. My
husband was with me and after just a minute of looking
the tech told us the baby was breech. Having had 2
babies prior I knew that this sonogram shouldn't take
too long but after several minutes I began to get a
little nervous. I knew from the baby being breech that
she was taking a lot of time studying the baby's head,
or at least where I assumed the head was since she had
pointed it out to us on the screen. After 10 minutes
I even looked at my husband and gave him a "look".
I just knew something was wrong. A few more minutes
and I asked, "Is there something wrong?" She said she
wanted to take her time because she had never seen me
before and apologized for taking so long. A few minutes
later I started crying and without saying anything she
patted my hand and told me to try not and worry but that
she did have some concerns and wanted to go and get the
doctor. MY WORLD STOPPED! We still didn't understand
and because she wouldn't tell us anything we were left for
about 20 minutes to wonder what was wrong with our baby.

After 20 minutes of waiting my doctor came in and said
that they were concerned about the size of the baby's
head. At 30 weeks the head was measuring a few weeks
ahead. They mentioned something about maybe too much
fluid in the 1st and 2nd ventricles. She tried to
reassure me and said that she was going to refer me to
a maternal fetal specialist. This was a Thursday; our
original appointment was made for 8 days later on a Friday.
I couldn't imagine waiting that long so my husband called
in some favors and we were worked in 3 days later that
Monday morning. After a high definitition ultrasound the
doctor explained that there was in fact too much fluid in
the 1st and 2nd ventricles and also a significant amount
of fluid in the 3rd ventricle as well. What I am reminded
of even today from our conversation with him was when he
said, "I am very worried about this baby and I think
you should be as well." He then encouraged us to have
an Amniocentesis test that day and scheduled us an
appointment with our local University Hospital for
a Fetal MRI for 2 weeks later.

In the course of the 2 weeks leading up to our Fetal MRI
we received the results from the Amnio and were so
grateful to learn that all chromosomes were normal
and we were overjoyed to learn from the test that
our baby was a BOY!!! They encouraged us to move
forward with Microarray Analysis testing which is
more extensive but again all chromosomes were normal!
With each passing day leading up to our Fetal MRI I grew
more and more anxious. I was consumed with worry
and anxiety.

Fast forward and at 32 weeks, from the Fetal MRI, we
were given the official diagnosis of Hydrocephalus
and Complete Agenesis of the Corpus Callosum. We
were left to wonder, “What is ACC?” The maternal
fetal specialists and staff at the hospital were
lacking in information and basically gave us some
copied pages from a text book with some harrowing
facts about ACC, nothing positive to say the least.
Words that stood out from our conversation that day
were, "facial deformities...baby may never walk,
talk or eat and will likely have rage issues."
I was numb to these words. I couldn't believe that
only a few weeks before we were just a "normal"
family, excited to be expanding our family without
a care in the world.

Somehow we muddled through the next 5 weeks. I
continued to see my regular OB for twice weekly
check-up’s and BPP’s (Biophysical Profiles) to make
sure the baby wasn’t in distress. They never would
tell me if the baby's head was growing but would
occasionally hint that it was in fact larger than it
should be so I was left to assume that his Hydrocephalus
was severe. And because I needed to deliver at another
hospital I was unsure of when or how he would be born,
who would be my doctor. We knew we needed to deliver at
the University Hospital because they have the only
in-state Pediatric Neurosurgeon and we knew it was
likely the baby would need a shunt placed.

At 37 weeks it was decided to do another amniocentesis
at the University to check for lung development and at
37 weeks and 1 day on Tuesday, August 17, 2010 Levi
joined our family. They wisked him away and it wasn’t
until several hours later that they allowed me to see him.
When I was able to see him and touch him….I was in awe
and my heart was filled with joy at the wonder of him.
He looked just like our other 2 children, absolutely
beautiful. For so many weeks we had prayed so diligently
for him. Surrounded by family, friends and our priests
that day I knew that Levi was truly a gift from God and
today he continues to bless our family.

Levi had a VP Shunt placed a week after his birth and
was released from the NICU one week later. Levi was
officially diagnosed with an Interhemispheric Cyst in
March. The cyst was suspected in utero. Today, at
8 months old, he is doing remarkably well! In comparison
to our other 2 children he is meeting milestones and
developing just as he should.

Levi learning to push up on his tummy well at 5 months old

We qualify for physical therapy 1 time a week. He has
been rolling over since 4 months old and has been sitting
mostly unsupported since 7 months of age. He is like a
little inch worm, squirming on the floor. Not ready for
crawling but by all accounts doing remarkably well!

Levi sitting at 7 months old during a trip to the beach with family

If by sharing my story brings comfort and hope to even
one family then it's been worth my time in sharing it.
I worry so much about Levi. There are so many “what if’s”
that fill my head each day. That being said, I worry
about my other 2 children as well. It’s my job as a mom
to worry and want the best for all 3 of them. But, God
is so good and His grace is sufficient. I am an all
together better person today because of all three of my
children. Our family is stronger, we are better and more
faithful than before.

Levi at 8 months old on Easter Sunday

I say about Levi that he is EVERTHING God intended him
to be and I know he will do great things. He is perfect
and I wouldn't change a thing.

Shea (Levi's Mommy)
E-mail Contact: shealuckett@yahoo.com

There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Dr. Sherr talks about ACC

2011-03-14T23:08:00.000-07:00

Dr. Elliott Sherr is a Pediatric Neurologist at
University of California, San Francisco (UCSF).
Dr. Sherr is highly knowledgeable and an expert
on Agenesis of the Corpus Callosum. He sees many
patients, children, who have ACC and Dr. Sherr
is highly respected and well-liked by parents.
Dr. Sherr is on the Board of the National
Organization for Disorders of the Corpus Callosum
(NODCC) and he speaks at the annual Conferences.

Dr. Elliott Sherr is also involved in a very large
Brain Development Research Study on ACC.

I want to bring to your attention some excellent
resources that provide Dr. Sherr's knowledge
about agenesis of the corpus callosum. More
specifically:

At the 2004 NODCC Conference, Dr. Sherr gave
two presentations about Agenesis of the Corpus
Callosum. They are available as Conference
handouts [in outline form] to read below.

2004 Conference handout titled:
"ACC and Associated Features".

2004 Conference handout titled:
"How to Get the Most From Your Neurologist Visit".

In addition, both of the 2004 Conference Presentations
by Dr. Sherr, in their entirety, have been combined into
one DVD for viewing titled:

"Neurologic Issues in Disorders of the Corpus Callosum".
You can purchase the DVD from the NODCC store.

I own a copy of the DVD (recently purchased) and find
it to be very informative. My son, Matthew, who has
complete Agenesis of the Corpus Callosum was diagnosed
at four months and he is 17 years old.

The 2004 Conference DVD is divided into two separate
Presentations:

"How to Get the Most Out of the Visit/Relationship
with Your Neurologist"

and

"Agenesis of the Corpus Callosum and
Associated Features"

A few of the topics and information covered in
the "How to Get the Most Out of the Visit/
Relationship with Your Neurologist" 1st episode
of the DVD include:

Dr. Sherr says:

"I just want to say one thing: that there
are a lot of syndromes that are sometimes
associated with ACC where ACC is not
necessarily the principal issue. And that
doesn't mean that your child's not going to
have ACC related issues but it's important
to recognize that there's probably a lot
going on and ACC is a piece of that as
opposed to the primary driver of the issue."

Dr. Elliott Sherr was involved in an ACC Review
titled: "Agenesis of the corpus callosum: genetic,
developmental and functional aspects of
connectivity".

Genetic Syndromes occasionally and frequently
seen with ACC can be found on Page 8.

CHILD NEUROLOGISTS:

Dr. Sherr states that they should be board
certified in child neurology.

ADVICE REGARDING MRI FILMS:

He says:

"You should have the copy of the films with
you and in today's day and age you can have
a copy on CD. You can also, if you want,
have a film copy as well." (for yourself).

Dr. Sherr talks about asking for a film
copy of the MRI for you to have. Then you
are able to take the MRI film copy with
you to doctors and specialists that your
child sees.

Also discussed on the DVD:

What Type of ACC is this?

complete ACC
partial ACC-hypogenesis/dysgenesis
thin corpus callosum-hypoplasia

What are the associated CNS changes?
CNS = Central Nervous System
(in other words) - Dr. Sherr says:

"When you look at the MRI what other things
are there that can be seen?"

Is the MRI interpretation accurate?

Dr. Sherr says:

"I will tell you...so you know we're doing
research in my group on ACC and so we've had
families from around the country send us their
films and I can tell you that the accuracy...
the families always send us the films and
frequently the radiology report is included
in there."...

"for somebody who is not used to looking at
brains of children on MRI they're more likely to
make that mistake because they just don't have
the experience of looking at them. So the
people that I work with have probably looked
at in excess of 10,000 brain MRI's on children
and so they have a fairly strong wealth of
knowledge about what is what, what is normal,
what is abnormal and if it's abnormal, what is it,
and that is actually very important. And so when
we got the films--we've gotten over 100 set of
films--and I'll tell you that about 5 to 10% of
them were completely wrong"...

"Even the best radiologists are going to make
mistakes."

"So how do you address that?"

Neuroradiologist and
Pediatric Neuroradiologist

"Who's reading the film? Is it a Neuroradiologist?

So there are Radiologists, people who are board
certified in radiology, but then there are people
who do an extra two years of additional training
and all they look at are images of the brain and
the spine and the nerve roots throughout the body
so they're more likely to be experts in reading
brains."

"And then there's another level. It's not
a level that you can get a little certificate for
but there is another level of specialization where
they're Pediatric Neuroradiologists, where all they
do all day long is look at MRI's and other imaging
modalities of kids' brains and kids' spines and the
reason that's important is that the developing brain
looks a lot different on MRI than the mature brain.
There's a lot that's going on obviously inside of
your child's head when they're developing and that
is actually seen to some degree when you take
pictures. when you take this MRI and somebody who
is an expert in that knows about what a brain is
supposed to look like at 3 months and how it's
supposed to look at 3 years, cuz those are very,
very different. And how you interpret the results
is based on your knowledge of knowing how the brain
looks as it progresses during development. So this
would definitely be one of those cases where if
only a local radiologist has looked at it, you
should request that the MRI be reviewed by a Pediatric
Neuroradiologist. And there are ways to have your
local doctor send the films to another radiologist
[Pediatric Neuroradiologist] for a second opinion
and I would pursue those."

Dr. Sherr says:

"Have your Neurologist show you the films and go
over the films with your Neurologist."

He says to question the Neurologist about the
indecipherable terms on the MRI report and have
them explain each finding to you.

MRI's in Children

Dr. Sherr says:

"There are certain things that we can see at
3 years we can't see at 3 months and so if your
child's first scan was at 3 months of age I
would recommend getting a second scan when
they're 3 or 4 years of age."

He provides more detail about this topic on
the DVD.

Preliminary Findings of ACC:
White Matter

Dr. Sherr states:

"Is there a correlation between what we see on
their MRI and how they're doing clinically?"
We did find something preliminarily. We found
that the clinical score correlates with the
amount of white matter and white matter is
insulation in the brain."

"So the more insulation [white matter] that
you're missing the more severe your clinical
condition was. And if the brainstem was
involved that was also correlating with
severity."

Dr. Sherr further states:

"Knowing more about the MRI is going to
provide you additional information about how
your child is likely to do. And I say likely
because this is just a rough correlation. It's
not a guideline. It's not an absolute-ism."

MRIs and ACC

Dr. Sherr says:

"Everybody should have one MRI at diagnosis
and, unless the diagnosis was made later in
life, should have a second MRI."

The DVD includes many other topics and
information about ACC.

At the end of the DVD Dr. Sherr took
questions from the audience. One
question was:

"Why do some people who have ACC function
fairly normally and live a relatively
normal adult life?"

Dr. Sherr replies:

"Some of that might have to do with other
places that fibers cross...so there's
something called the anterior commissure
and it's a place that fibers cross and it's
in front of and a little down from where the
corpus callosum is."

"And actually when we reviewed some people with ACC
we noticed that they had big anterior commissures,
suggesting that maybe fibers that should have gone
through the corpus callosum crossed through there.
So that's one possible explanation."

note: Anterior commissure. Small band of approximately
50,000 axons that connects the cerebral hemispheres. The
anterior commissure connects the temporal lobes and is
located at the base of the fornix.

A few of the topics and information covered in the
"Agenesis of the Corpus Callosum and Associated
Features" 2nd episode of the DVD include:

MRI features that can be associated with ACC:

*COLPOCEPHALY:

"This is a posterior enlargement
of the lateral ventricles that results from the
absence of the corpus callosum."

"Similar phenomenom is the 'steer-horn' shaped
lateral ventricles seen more anteriorly."

*UPWARD DISPLACEMENT OF LATERAL VENTRICLES

Dr. Sherr says:

"The first two [colpocephaly and upward
displacement of lateral ventricles] are
almost always seen with ACC...not always
but almost always...and it's just what
happens to the brain in the absence of
the corpus callosum."

"So it's not a separate diagnosis
all by itself. It [colpocephaly]
is intrinsic to the diagnosis of
ACC."

He also states:

"So it's like if you're building a building
and you take out scaffolding in one of the
main areas of the building then the
building's going to look different. It's
going to have support structures in
different places and so that's what's happening
to the brain."

"But it's not a separate diagnosis. It's
just what happens when the scaffolding,
which is the corpus callosum in a way, is
missing. The ventricle's going to bulge out."

"So colpocephaly and what radiologists
call steer-horn shape ventricles are a
consequence of the absence of the corpus
callosum."

*PROBST BUNDLES

The corpus callosum is made up of 200 million
axons (also referred to as fibers).

Dr. Sherr says:

"Axons are like the telephone wires that are
connecting all the phones together and they are
these wires and they go from one side of the brain
and they cross over to the other side of the brain.
And if they cross over to the other side of the brain
then the corpus callosum is formed and if they don't,
then where are they going to go...

So in certain individuals those fibers go to the middle,
they can't cross, presumably because the structure that
needs to be made in development, (what's called a callosal
sling) is not there and so instead they turn to the left
or they turn to the right and they go alongside the edge
of the callosum (or where the callosum would have been)
and form the Probst bundles. And it's unclear what this
means.

Some people think that if you have Probst bundles that
it correlates with a better diagnosis [outcome]. We
don't know that yet but that's hopefully one of the
things we'll be able to answer more definitively."

Dr. Sherr (in the DVD) goes on to point out visually
on an MRI image where the Probst bundles are.

He then says:

"Not everybody with ACC has Probst bundles but a lot
of people do have Probst bundles but we don't know the
significance of that yet."

*INTERHEMISPHERIC CYSTS:
*a. type 1 - communicate with ventricles
*b. type 2 - not communicate with ventricles
*c. continuum with lipoma

Dr. Sherr says:

"These cysts are fluid filled structures outside
of the brain matter proper."

"So actually when the brain is formed there
actually is a space between the two hemispheres
so it's not within the brain proper...it's sort
of like in between the two sides."

"And the current thinking is that cysts develop
in lieu of the corpus callosum."

*LIPOMA:

Dr. Sherr says:

"One thing that happens instead of a cyst
forming is that a little structure, that's
basically a fat collection, which is called
a lipoma, will form instead.

ACC Brain Images

In the DVD, Dr. Sherr also speaks in detail
about other brain anomalies seen with ACC.

Dr. Sherr said:

"If you just look at the number of people who
have just ACC and nothing else that's a smaller
percentage than the total, so most kids with
ACC are going to have ACC and something else."

Dr. Sherr explains the different views of
the brain on MRI films and shows examples.

Dr. Elliott Sherr advises:

"When you get an MRI scan you need people to do
Axial, Coronal and Sagittal views to get a true
picture of the structure of the brain."

Also discussed:

Can My Child Have ACC and:

Autism
Attention Deficit Hyperactivity Disorder
Obsessive Compulsive Disorder
Cerebral Palsy
Mental Retardation

Dr. Sherr says:

"The short answer is yes."

However, in the DVD he goes on to answer
in more detail.

ACC Syndromes with Molecular Genetic
Testing:

Dr. Sherr says:

"So these are examples where the gene is known
and it causes ACC."

Andermann Syndrome
Mowat-Wilson
ARX related syndromes
L1CAM

He also says that in his experience they are
very uncommon causes of ACC.

The DVD covers a lot more topics and
information about ACC.

At the end of the Presentation Dr. Sherr
took questions from the audience.

(a few of the questions are):

Question:

"Is it acceptable to request a typed up
copy, in layman's terms, of what the MRI
interpretation is?"

Dr. Sherr replies:

"The answer is absolutely yes."

Question:

"Symptoms that might trigger you to get
another MRI?"

Dr. Sherr replies:

"I think that the symptoms that would trigger
somebody to get another MRI down the road
would be a significant worsening. So if a child
is developing at his or her own rate and then
all of a sudden they stop developing or they
decline in development, that would be a reason
to get an MRI. If there's new symptoms that
are significant and not sort of part of things
that they're already doing, you need to
potentially get another MRI, and the last one
would be something that might need to be
discussed with your doctor, depending on what
they are."

Also available from the NODCC is Dr. Sherr's
presentation at the 2008 Conference on podcast, at
no cost, which includes some of the same information
on the DVD from the 2004 Conference plus even
more information. In my opinion, the DVD and the
2008 Conference podcast are BOTH excellent
resources about ACC.

note: The DVD from the 2004 Presentation
gives the advantage of being able to see the exact
area of the brain Dr. Sherr is talking about (because
he uses a red light pointer to visually point to the specific
brain structure in the picture that he is discussing).
The 2008 Conference podcast displays still frame pictures
of the brain and you only hear Dr. Sherr talking about
specific areas of the brain, but do not get to visually
see them being pointed out.

note: you will need to download the TechSmith
Screen Capture Codec (TSCC) to view the podcast:
download here.

2008 Conference podcast with Dr. Sherr

(a few interesting highlights are):

3 family generation of complete ACC and
partial ACC in one family. Dr. Sherr discusses
one family where ACC and partial ACC is seen
in a grandfather, children and grandchildren.

seen at time frame 12:44-15:26

Dr. Sherr states:

"All of these individuals with a corpus
callosum disorder did well or average in
school and the adults have jobs. So these
are folks who are functioning at a very
high level."

ACC and Heart Defects:
seen at time frame 32:53-33:49

Dr. Sherr says:

"Almost 1/4 of the kids had heart problems.
Now these are not innocent murmurs that then
go away. These are actually kids who have real
heart disease. So my recommendation on any child
with ACC is that they get a comprehensive heart evaluation."

Colpocephaly is discussed:
seen at time frame 38:52-40:29

Dr. Sherr says:

"And so if doctors say your child has hydrocephalus
you want to be very careful to ask them, well does
the child have hydrocephalus or does he or she just
have colpocephaly?"

Interhemispheric Cysts discussion
and other ACC features
seen at time frame 43:20

Question regarding Interhemispheric Cysts:

"Do they enlarge or do they stay the same?"

seen at time frame 49:09-50:44

Dr. Sherr's answer:

"I don't think I have good enough numbers yet
but I would say that the short answer is most
don't change in size and a few will change
in size.

"If a cyst enlarges it will result in the
symptoms of hydrocephalus and so usually what
that will mean is that the child will present
with some sort of symptoms...usually it could
mean things like vomiting, particularly vomiting
when you first wake up in the morning, if a child's
eyes seem to be pointing down too much instead of
being right in the middle of the eyelids, if the
child seems to be too sleepy (lethargic) that
could also be a sign of hydrocephalus."

"So for my patients in my clinic who have an
interhemispheric cyst, when they're little I'll
get an MRI every year for the first three years
of life and if there's no growth after three years,
then I'll do one more when they're 5 years of age and
then after that I won't do anything unless they have
symptoms. But that way...I think most of the kids that
have cyst enlargements, it happens early on."

It's definitely worth exploring these valuable
ACC resources mentioned in more depth for yourself.

You can also find additional resources about ACC
(including Conference handouts, podcasts, and other
items) available at the NODCC website.

Do you want to enroll in the ACC Research Study at
UCSF where Dr. Sherr and his colleagues are involved?
Please contact: Mari Wakahiro at 415-502-8039.

Got an Idea?

2011-03-05T16:29:00.000-08:00

Do you have an idea?

I have ideas about topics to include here on
the Agenesis Corpus Callosum blog and I'm usually
working on one or have some ideas stirring around
in my mind.

But I am very interested in knowing YOUR Ideas!

What are they?

What do YOU want to see here?

When it comes to Agenesis of the Corpus Callosum,
what type of information are YOU seeking?

It's especially important to me to include a wide
variety of information here that pertains to ACC.

Is there a specific topic here that you like and
want to see more of?

What's not here that you wish was?

School issues?

Speech and Language?

Adults & ACC?

Some other topic?

If you have an idea or several ideas, then here's
a place for you to express them. Share an idea
once or twice or as often as you would like.

Please leave a comment with any ideas that YOU
have.

Go ahead, be the first to share YOUR idea.

I can't wait to read them all.

A little girl, learning to read & Bob Books Giveaway

2011-02-14T08:19:00.000-08:00

March 1, 2011 announcement

The WINNER of the Giveaway is:

Family H and their little girl, Violet.

Sabra let me know that her daughter put 8 pieces
of paper, numbered 1 through 8 (for the 8 entries)
into a bowl. She drew out the piece of paper with
number 6 and that represents Family H.

Sabra told me that after her daughter chose the
number....6 she said:

"This is cool to pick another child who has ACC like
me to get Bob books the same as me. I hope they help
reading with the other child."

Her mom said:

She then asked me who is number 6. I told her
I don’t know but we can check tomorrow to
see who the winner is. She was very excited about
seeing who won.

THE BOB BOOKS GIVEAWAY IS CLOSED.

Thank you to everyone who entered.

You are going to LOVE this story!
AND the prize revealed at the end of the rainbow…♥

I was contacted by the mom of a little girl who has
partial agenesis of the corpus callosum. I have known
the mom, Sabra, for a few years. Her daughter struggled
with learning to read and I remember when she told the
jump for joy story in the ACC support group about how
her child learned to read her first book.

Sabra enthusiastically wrote a heartfelt letter to the
Bob Books company:

"I would like to say thank you to whomever wrote these wonderful
books. I have a 6 ½ year old daughter born with congenital
hydrocephalus with a VP shunt and partial agenesis corpus
callosum. I tried hooked on phonics since this is what I had
used with my other children but she still struggled with trying
to read. She started first grade the day after Labor Day in
regular classroom with resource for language arts. She brought
home books from the library, AR books that were 0.6 and 1.0
reading level and cried because they were too hard and said
she couldn’t read. This about broke my heart when she said
this and how discouraged she was in regards to reading. When
I was in Barnes and Noble a week and a half ago to buy books
for my other children and myself, I asked the sales clerk on
what they recommended to help my daughter with reading. They
recommended your books and said they have teachers coming in
all the time purchasing them. I had never heard of these before
but I decided to give them a try and bought the first set,
beginning readers.

You have to understand this has been hard on me since we are
so big on reading. I have been working with her and trying to
find what worked for her to help her learn to read. It was
amazing and beautiful to see her little face light up and the
biggest grin after she read the first book. She currently
finished book 9 tonight and is doing amazing, we read a book
a night. She may not remember she just read that word on the
previous page but sounds it out and reads it without getting
discouraged. What helps for her is the small size of the book
and only a few words on each page. She may also struggle with
comprehension and understanding that reading a book is a story
but I know we will get there eventually. Your books have helped
us give her the confidence to read and the foundation on which
reading begins.

I will be going back to Barnes and Noble this weekend to purchase
set 2 for my daughter. Again, thank you so much for having this
program available and the insight to whomever wrote and developed
these books to give my precious daughter a chance to learn to read.
I don’t normally write comments and feedback but I am so impressed
with the books and the positive rewards, I felt compelled to send
one in regards to the Bob Books.

I now tell everyone I know including parents on hydrocephalus and
ACC online groups I belong to about how wonderful Bob books are.
I will make sure I have the money available when she is ready for
the next set."

A very happy parent in Virginia,
Sabra

Bob Books Reply Letter to Sabra:

"What an amazing and wonderful letter. Thank you so much for writing.
I am forwarding your letter to the author, Bobby Maslen. She will be
thrilled to hear about your daughter's success. After all this time,
she still loves to hear about each and every child that learns to
read with Bob Books. (She wrote Bob Books over 35 years ago.) We
are so proud when we can make a difference, especially for
children that struggle.

You might like to see a video (just posted today) about how Bob
Books came to be. I hope you can tell from her face, how much
Bobby cares.

http://www.bobbooks.com/bob_books_story.php

Thank you again for your very touching and heart-warming letter.
I am so glad we were able to make a difference for your daughter.”

Best, Lynn
-------------------
Lynn Maslen Kertell
Author and Managing Partner, Bob Books Publications, LLC
www.BobBooks.com

This was a story with a very happy ending. But
that’s NOT the end...

Sabra, the little girl’s mom, also let me know that
Bob Books would like to give away a Bob Books
Set 1 Beginning Readers and a Bob Books Set 2
Advancing Beginners to a family who has a child
with Agenesis of the Corpus Callosum.

Sabra asked if I would host the Bob Books Giveaway
on the ACC blog on behalf of her and her daughter.
I said…absolutely YES, with pleasure.

THE GIVEAWAY INCLUDES:

1 Bob Books Set 1 * Beginning Readers

and

1 Bob Books Set 2 * Advancing Beginners

CONTEST GIVEAWAY RULES:

1. Please enter only if you have a child who has agenesis of the corpus callosum or a corpus callosum disorder.

2. Only US residents age 13+ are eligible to enter (due to
licensing issues we do not ship to Canada or overseas).

3. One entry per username & e-mail.

4. Answer the following questions:

Why do you want to win Bob Books for your child who has ACC and How do you think it would help your child with reading?

5. Please include your e-mail and username in your entry so
you can be reached if you are the winner.

6. Contest winner will be randomly chosen on February 28,
2011 by Sabra’s daughter, who inspired the Bob Books
Giveaway. : )

7. Contest Begins: February 14, 2011

8. Deadline Entry: February 27, 2011 11:59 pm, pacific standard time

WINNER WILL BE ANNOUNCED ON: March 1, 2011

If you are the Winner you will be asked to give out your mailing address which will be forwarded to Bob Books who will ship your free set of Bob Books 1 & 2 directly to you.

Be sure to explore the "Entire Family of Bob Books"...

Thank you to Bob Books for sponsoring the Giveaway
from your heart in an effort to help another child,
who has ACC, learn to read. ♥

Thank you also to Sabra for allowing me to host the
Bob Books Giveaway for you.

A great BIG congratulations to Sabra’s little girl
for learning to read. You did it!!

THE BOB BOOKS GIVEAWAY IS CLOSED.

Thank you to everyone who entered.

*note: I did not receive any merchandise or monetary gift
for hosting this Giveaway. This Giveaway comes from the
heart of Bob Books and is the result of a mother’s joy in
hearing her child who has partial ACC learn to read for the
first time and seeing her child’s confidence level soar.

ACC and Moms-To-Be #9 Story

2011-02-07T15:51:00.000-08:00

I am so thankful to all of the Moms who want
to tell their story about being pregnant
and having a baby with Agenesis of the
Corpus Callosum. Each story is as unique as
each child who has ACC.

Several weeks ago I received an e-mail from
Amanda who expressed a desire to share
her ACC Pregnancy Story here on the blog
for others to read.

Thank you very much, Amanda. It is a
privilege to post your story and I thank
you from my heart for your willingness to
help other people through your own
personal experience.

Written by Amanda:

My name is Amanda and I am the lucky mother of three
boys.

On August 28th of 2009 I found out I was pregnant
which also was a week after my brother-in-law was
killed in a car accident.

My pregnancy was normal for the most part but it
took a month or so before I was able to see an
Obstetrician because Medicaid was dragging their
feet and no doctor would set me an appointment
without insurance. I was very angry.

When I was finally able to see a doctor because of
insurance (and where I live) I only had two choices
for doctors. So I picked the closest doctor.

When I finally got a doctor, I let my doctor know
I was hurting and having pain on and off with this
pregnancy. He checked me out and said I was fine.
With my second pregnancy I hurt and couldn't walk
far and had to take meds to control contractions.
At the end of my second pregnancy my son was born
five weeks early but was healthy. So I made sure
my doctor knew about my problems with my second
pregnancy when I saw him at my first appointment
for this pregnancy. But he didn't seem concerned
or seem to care about the pain I was having.

I remember hating to go to doctors because it would
take three hours to get seen and then ten minutes
to be seen. Because of my insurance you are only
allowed 2 ultrasounds.

About a month or two before Landon was born is when I
had an ultrasound done (my first and only ultrasound).
After the ultrasound, they said everything looked
good. They said due to his head size I was further
along than they thought and they changed my due date
from May 1st to April 26. My doctor said take it
easy but don't worry everything was good.

But in reality I now know he just had complete
agenesis of the corpus callosum (c-acc) and
plagiocephaly and many other things that were
not yet discovered.

Then soon after my ultrasound I went to a routine
appointment on March 15 (six weeks before my original
due date). I told my doctor everything again about
the pain and problems with my second pregnancy and
the pain I was having with this pregnancy and I also
told him that while doing kick counts the baby hadn't
moved much. So he said go to the hospital, let them
hook you up and check everything.

As soon as they put me on the monitors to watch me
I started having bad contractions.

I was in labor for 24 hours. On March 16, 2010 our
beautiful son, Landon, was born weighing 5 lbs.
4.9 oz and 18 1/2 inches long.

The cord was wrapped around his neck twice and he was
not breathing right so they took him to the Special
Care Nursery which is the same thing as a Neonatal
Intensive Care Unit (NICU). Landon was considered
to be preemie when he was born.

I didn't get to hold my son for a week and a half.
He was on machines helping him breathe and we couldn't
even touch him. They were afraid too much stimulation
could make his lungs collapse.

He was on the breathing machines for almost two weeks
and on feeding IV's for about a week.

He didn't seem to see or notice anything when he was
messed with or touched so they weren't sure about his
eyes. They always said oh all preemies have to learn to
eat, breathe right and keep his own body temp up in his
own time.

Once he could breathe right and keep his body
temperature up on his own he was moved out of the
warming bed (closed incubator) into an open bed for
almost another week. Then we were finally able to
bring him home.

He was in the Special Care Nursery a month before we
could take him home. No one could tell us why he
wasn't gaining weight and not eating right or
focusing.

Once we brought him home he still couldn't eat without
it all coming back up right after. He started losing
too much weight so his Pediatrician and stomach doctor
put him in the hospital. He was put on Zantac when he
was born then changed to Prilozec then to Reglan but
changed back to Zantac because he had a reaction to
Reglan. Also he was on Neocate and Polycose--both are
supposed to make him gain weight but still didn't.

When he was four months old he was admitted to the
hospital because of inability to eat without vomiting.

While in the hospital they did ultrasounds of stomach
and head, a lot of blood work an MRI and CT scan. Finally
they had a diagnosis. They informed us that Landon had
complete Agenesis of the Corpus Callosum (c-acc),
Deformational Plagiocephaly, Septo Optic Dysplasia,
Optic Nerve Hypoplasia, Gerd and Gastroparesis and now
they say he has a growth hormone deficiency.

The doctors said they had never really dealt with
anything like this and all they really knew was seizures
were a big possibility as was delays, he may need a
feeding tube, may never walk or talk so I was horrified.
I could do nothing but cry and blame myself and
everything else.

He doesn't see very well, he doesn't move much, he
is over 10 months and he just now learned to hold his
head up. He still has problems with eating baby food.
At 10 months he is only 15 lbs.

Nobody around here seems to be able to tell me
anything but wait and see. They say he may never walk
or talk and are not sure where he will be mentally.

But no matter what happens Landon is a God send. He
changed everything. He has made me a better stronger
person and I wouldn't trade it.

I just wish I could take his place so he wouldn't
have to go through it.

Landon

There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

there is always...

2011-02-03T20:40:00.001-08:00

hope is the sparkle
from the depths of the hole

hope is the candle
you light in your soul

hope is the glimmer
you sense in your being

hope is the jewel
so brilliant and freeing

© Sandie L. Davis

ACC and Moms-To-Be #8 Story

2011-01-24T15:21:00.000-08:00

I was recently contacted by the mom of a little
boy who has Agenesis of the Corpus Callosum who
expressed her desire to tell her own Mom-to-Be
Story about receiving the diagnosis of ACC when
she was pregnant.

This Mom shared something with me....in her own
words:

"I am very passionate about helping others and encouraging
others through those hard times."

Thank you very much, Brandy. I am so grateful to
you for your passion to help others, for your
willingness to reach out to people in need and for
allowing me to post your ACC Pregnancy Story.

Written by Brandy:

My pregnancy with this child (child #2 for me) was
never really normal. It started off rough as I had
started to bleed early on during my pregnancy. I
felt in my heart that I was losing my baby. However,
my baby was a fighter and wasn't going anywhere!
After about the 10 week mark, I was taken off bedrest
and was able to resume normal activities. At 20 weeks,
I went in for my ultrasound. Like many others, I had
no idea that they actually checked for so much during
those ultrasounds! He was given a good checkup other
than he was a little on the small side and they wanted
to do a repeat ultrasound at 28 weeks just to check
his growth. Thinking everything would be normal
(this was my second child and my first child had no
issues at all), my husband went on his trip out of town
for work, leaving me to go alone for the ultrasound.
This was the first and only ultrasound that he had
ever missed with either of my kids. Everything
seemed ok during my appointment. The ultrasound
tech never said anything was unusual or made any
faces. She printed off my pictures and told me
that he was growing on schedule. She then told me
that she was going to put me in a room so that the
doctor could talk to me. My stomach sank. I knew
that this was not normal! The ultrasound showed
that his brain ventricles were enlarged. I had never
heard of ventricles in the brain! I asked the doctor
what all that meant. He was very upbeat and honest
with me. He wanted me to go to a maternal-fetal
doctor to be followed. I got an appointment the next
day. On my way home after hearing the news, I was
pretty numb. I didn't know what any of this meant.
I didn't cry, which was VERY unusual for me. I even
went to the grocery store on the way home. It
wasn't until I got home and called my best friend
that I broke down. My husband flew home the next
morning so that he could go to the specialist with
me.

The specialist basically told me that same thing.
Hydrocephalus and he would need a shunt. I did
lots of research on hydrocephalus. Some days I
was worried and other days I wasn't. At 36 weeks,
I was sent to the children's hospital for a fetal
MRI. A big pregnant woman in a little bitty
MRI tube = MISERY! Anyway, the results came
back that he had Agenesis of the Corpus Callosum
(ACC) and not hydrocephalus. His ventricles were
enlarged but stable and not changing. I was told
that his ventricles weren't necessarily enlarged,
they had just taken on a different shape since
there was no corpus callosum.

I opted to have a c-section to deliver him.
My first delivery was vaginal and did not go
well at all. I also wanted to schedule his
delivery so that we could have all necessary
doctors on stand-by just in case we needed them.
The delivery turned out to go smooth. He did have
to go to the Neonatal Intensive Care Unit (NICU)
for a night to monitor his breathing (not related
to the ACC) but was allowed to spend the rest of
our stay with me in my room. While in the NICU,
they did an ultrasound of his head and it confirmed
the ACC diagnosis. He also had an EEG which came
back normal. He was having a little difficulty
eating and that prolonged our hospital stay
by a day, but he caught on like a champ
(and he is now the best eating child I have
ever seen!). The neurologist visited him in
the NICU and then came to see me. He gave me
the best piece of advice regarding the ACC.
He told me to learn all I can about ACC and then
to forget it - to treat him like I would treat
any other child. My son is now 3.5 years old
and he has taught me so much in his short life.

He first started showing physical delays when
he was a few months old. He did not sit until
he was nearly 8 months, crawled at 11 months,
and walked at 13.5 months. He had been in
physical therapy through our Early Intervention
program since he was 6 months old. He was
discharged from physical therapy around 14 months
since he was really thriving in that area once
he started to walk. From 14 months until
2.5 years he was in a little occupational
therapy through the Early Intervention program,
however he really needed speech more than
anything. We fought and struggled with our
Early Intervention program because they just
could not provide what he really needed.

Finally at 2.5 years old, we got into a
private therapy clinic and had a wonderful
speech therapist who made leaps and bounds
with him. At 3 he graduated out of the
Early Intervention and we enrolled him in the
special needs preschool through our school
system. I was very hesitant to make that move.
In fact, I had pretty much decided that I was
not going to send him to school at the age
of 3. However, I have a wonderful friend who
had been down this road with her son who had
similiar issues. She pushed me to enroll him
in the special needs school. Boy am I glad
I did!

Until Logan was about 2.5, he was nonverbal.
He would say "mama" and "dada" on occassion,
but basically nonverbal. He made huge
improvements with his speech therapist, but
the special needs school has REALLY made him
bloom. Just thinking of his three angel
teachers makes me tear up. He now has a
vocabulary of about 150-200 words and is
doing two to three words sentences, though
many of his words aren't really clear
(but we can understand him!)

He has a sweet personality. He is pretty
quiet in a group and is very well behaved,
but once he is at home, he really opens up!
His behavior is pretty much perfect,
especially for a 3 year old. But we are
having one big issue and that is he screams
when his dad is at home. He loves his dad
and wants to always be with him and play with
him, but for some reason he just screams.
When he is just with me (or anyone else) he
does not do the screaming. As for Logan's
"screaming"... it is the most high pitch noise
you can imagine to come out of a three year old.
If it happens in a store (ie. Walmart) you can
definitely hear him on the completely opposite
end of the store. It literally makes me feel
like my head is rattling. I can't really say
what prompts the screaming. It seems to me that
he wants his dad to do everything with him
(or for him is more like it!) and wants his dad
to do it right that second. I was talking with
my mom today, who babysits Logan sometimes. She
said it is just like a Jekyll/Hyde transformation.
Logan is about as perfectly behaved as a 3 year
old can be with her (and everyone except his dad).
Then when his dad walks in the room, he just starts
with this high pitch, stop-in-your-tracks scream.
I'm beginning to think it is a mixture of language
barrier frustration, being spoiled by his dad,
and just being a stubborn and impatient three
year old. It has by far been the must frustrating
bump we have faced on this road.

I love my son to pieces. He has taught me so
many lessons about life. If I had the chance,
I would not change him for the world!

3-year-old Logan

There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

ACC and Moms-To-Be #7 Story

2011-01-17T19:17:00.001-08:00

Soon after posting the previous ACC Pregnancy Story,
I was contacted by another mom, Andrea, who has a
son who was born with Agenesis of the Corpus Callosum
and she expressed an interest in sharing her own story.

Several months ago I came across Andrea's blog about
her baby boy and I have been reading her blog posts
so it was a very nice surprise to get an e-mail from
Andrea, for the first time, and read about her desire
and willingness to tell a very private part of her
life in the hopes that it may help others and to let
them know "that they are not alone." (in her own words)

It is truly a privilege to be able to post Andrea's
Pregnancy Story here for you to read.

Thank you very much, Andrea, for reaching out to
others from your heart.

Written by Andrea:

This pregnancy started off a little differently
from the very beginning. When I had discussed
with my OB-GYN that my husband and I were
thinking about trying to have baby #3, he went
ahead and sent me for some testing with a
high-risk maternal-fetal specialist due to the
fact that I had miscarried two times previously.
He didn’t want me to have to go through that a
third time before we did some testing to find
the cause. The initial testing showed that I
have a blood clotting disorder known as MTHFR,
which makes me prone to blood clots. So I was
put on a baby aspirin every day as well as 5
folic acid tablets per day. I also had to be
followed closely by the maternal-fetal specialist
throughout the pregnancy. This was actually a
blessing in disguise, because it’s this high
tech equipment and the highly-qualified
sonographer, who discovered Anderson’s ACC
before he was born.

We were so excited to find out whether or not
this 3rd child would be a boy. We already had
2 girls and while we would have loved another
girl just as much, my husband and I were hoping
for a boy. To be honest, I really thought that
was the main purpose of the 20 week ultrasound.
In fact, even though this was my 3rd child
(5th pregnancy), I didn’t realize how detailed
these ultrasounds are. I had no idea how many
things they check and measure. I mean, they
check for 3 bones in the baby’s pinkie finger!
Did you know that?

Throughout the ultrasound, we kept hearing the
sonographer ooh and ahh over our precious baby.
She kept saying how beautiful everything looked
and how wonderful the images were that she was
getting. She did reveal that the baby was a boy,
and we were overjoyed! It was about 10 minutes
later that her demeanor and voice both completely
changed all at once. She became quiet, concerned,
and intensely focused on something that she did
(or didn’t) see. She left the room, came back in
with another sonographer who then took her turn
looking at the screen, pointing to things on the
screen, and giving “looks” to the other lady.
Then they both left the room. At this point, my
husband and I both realized that something was
wrong, but we didn’t know what. All we knew,
was that they kept looking in the baby’s head at
his brain. The third time the lady came back
into the room, she told us that she was going
to put us in a room so the doctor could talk to
us and discuss the ultrasound results. I
stopped her mid-sentence and asked, “What is
going on? What is it that you are looking for
and can’t find? Or is there something you do
see that shouldn’t be there? We are completely
in the dark. We are scared. We need to know
what is happening.”

At this point, I hear the words “corpus callosum”
for the first time. I had no idea what it was,
or what it meant for my baby to not have it.
This is where my story really begins to differ
from that of others’. We were never told, nor
was it ever implied that we terminate the
pregnancy. In fact, at this first visit, quite
the opposite happened. When the doctor came
in to speak to us, she explained what the
corpus callosum is and what its job is in the
brain. She told us that the only effects of
not having one could be coordination problems
and possible seizures. I specifically asked
her what effects it would have cognitively on
the baby and she replied, “None at all.”

We actually left the visit feeling okay- not great,
but we still felt all would be fine. The doctor
told us that everything would be fine and more
than likely he would have no problems. It wasn’t
until I decided to do my own research that I
realized that this doctor had given me false
information. I began searching and searching
for anything I could find relating to ACC, and I
kept reading stories of people with ACC and it
didn’t take me long to realize 2 things: 1.
While all of the stories might share some
commonalities, each person with ACC is very
different. It is not a cookie-cutter diagnosis.
and 2. The doctor had not been completely honest
with my husband and me about the prognosis of
our baby.

I was outraged. I knew I could not continue
seeing a doctor who would not be up-front and
honest with me. I called my OB-GYN and told
them I wanted a 2nd opinion. They immediately
scheduled me an appointment with a different
group of doctors. In the meantime, we were
left to wait, to wonder, to worry, and to have
more questions than we had answers.

We received the letter in the mail to confirm
our appointment, along with the paperwork to fill
out for our first visit, and I noticed that I had
been made 2 appointments- 1 with the maternal fetal
specialist and the other with a geneticist for
“Genetic Counseling”. Keep in mind that at this
point my husband and I have not even accepted that
something is wrong with our baby. We are still
dreaming that when we go for the 2nd opinion the
ultrasound will reveal that this had all been a
mistake and the baby is doing well. Oh how we
prayed for the corpus callosum to be seen!

As you know from me typing our story, it wasn’t
there. However this doctor was much more open
with us. She wasn’t doom and gloom, but she would
present us with what she knew, and didn’t mind to
tell us that some things we would just have to
wait and see. We continued with this doctor the
remainder of the pregnancy.

As the pregnancy progressed, there was mention of
a small cyst, and also the fluid in the baby’s
ventricles was being monitored closely. However,
at each visit, the fluid stayed within the
“high-normal” range. Until the 34 week visit.
At this visit, the amount of fluid had increased
significantly- to the point that they were
concerned that the baby’s brain may be under
pressure. So it was decided to deliver the baby
via C-section at 37 weeks.

I was scared out of my mind the day of the
delivery. We still really didn’t know what to
expect. Would the baby have facial deformities?
Would he breathe okay? What problems would he
have when he was born? What about the fluid?
Will he need surgery for a shunt? There were
so many questions that couldn’t be answered
until he was out of my body and welcomed into
this world.

Anderson Knox Spears was delivered at 8:47 on
Tuesday, June 1, 2010, at a hefty 8 pounds and
2 ounces. Shortly after he was born, it was
determined that he was struggling to breathe
on his own and he was whisked away to the NICU
after I got one quick peek at him. I remember
that he was absolutely beautiful. I remember
the delivery being very peaceful. I remember
not being worried that they were taking him to
the NICU. I felt at peace with everything
now that he was here.

Later that night, I was wheeled to the NICU to
get to see my baby. I was not prepared for what
I saw. He seemed so fragile laying there with
all of the tubes and lines and machines. He
actually only ended up on a CPAP machine to help
his breathing, and he had a feeding tube in his
nose. He had an IV in his arm, and monitors on
his chest. He was in good condition, but to see
your newborn lying there helpless after delivering
2 healthy babies and getting to hold and love on
them immediately, there are really no words.

Anderson’s breathing condition had nothing to do
with his ACC. It had more to do with the fact
that he was born at 37 weeks and his lungs needed
a little more time.

While he was in the NICU, the testing began.
Chromosome testing, blood testing, MRI’s, xrays,
hearing tests, vision test, etc. Lots and lots of
tests.

It was determined that Anderson had hydrocephalus,
complete agenesis of the corpus callosum, and an
interhemispheric cyst. However, his chromosome
testing showed that he had no chromosomal
abnormalities.

At exactly 1 week old, Anderson underwent surgery
to have his VP shunt placed. His shunt is actually
placed in the cyst- rather than in the ventricles
in his brain. Come to find out, the fluid that
they had been watching was not in a ventricle- it
was actually in the cyst. It appeared at first
that the cyst had actually grown in place of the
right hemisphere of his brain. However, as the
shunt continues to work properly and the cyst
gets smaller, more and more brain tissue is
appearing. Apparently it is there, it is merely
hidden by the large cyst. He tolerated the shunt
surgery so well, that we actually got to come
home the day after the surgery.

Still not knowing what to expect, our family
prayed, we loved, we rocked, and we treated him
like a normal baby. His 2 sisters absolutely
adore him, and they have been the best form of
interaction and stimulation that he could get.
Anderson began to amaze all of us as he grew.

He is now 7 months old and continues to amaze
everyone who knows him. In fact, he is even
amazing the doctors. When they see his MRI
results and then they look at him- the 2 don’t
fit together. He is doing things that right
after he was born we were told he would never do.
In fact, when he was 6 days old, a doctor told
us he would be severely delayed in all areas
and we should go ahead and file to put him on
disability. We told him we were not giving up
on him. We were going to give Anderson every
opportunity to be successful…and what a wonderful
decision that has been!

At his 6 month developmental check up, Anderson
was on an 8 month cognitive level, and on a 4 month
verbal and motor skills level. He is sitting up
unassisted, but he isn’t rolling very well. He
can do it, but not without lots of encouragement.
He is getting a head-shaping helmet this month-
because he would not lie on the right side of his
head due to his shunt so his head is misshapen.
He is talking (babbling) more and more each day.
We couldn’t be more pleased with how he is doing.
He is a true blessing to our family. He is
defeating the odds that are against him. We know
he may hit some obstacles, but we take each day at
a time and focus on what he CAN do, rather than
worry about what he WON’T be able to do.

If you are expecting and have received this
diagnosis, it is not the end. It is the beginning
of a very special journey. Anderson is a wonderful,
happy child who brings joy to everyone around him.
We can’t imagine our lives without him. The truth
is that the doctors really don’t know. Every
child/person is different. The doctors do not
have all the answers. We have found that our God
is much bigger and more powerful than the doctors.
He is allowing Anderson to do things that are not
medically possible. We look forward to watching
him grow, develop, and continue to amaze all of us!

If you have any questions or would like to get in
touch with me, feel free to email me at: spears.andrea22@gmail.com

Also, if you would like to read more about our
journey with Anderson, visit our blog at http://spearsfamilyblog.blogspot.com

There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

ACC and Moms-To-Be #6 Story

2011-01-13T21:23:00.000-08:00

A few days ago I received an e-mail from Selina,
the mom of a baby born with Agenesis of the Corpus
Callosum. Selina wrote that after having read a few
stories from Moms-To-Be she felt a need to tell her
own story and to finally let her story out.

In her own words she wrote:

"Hopefully it can help someone one day."

This is the sixth story about ACC and Moms-to-Be.

It is truly a privilege to be able to post
Selina's ACC Pregnancy Story here.

Thank you very much Selina for your desire to
tell your story and for your desire to share
such a personal experience with other people.

Written by Selina:

"I was expecting a little girl in July with my husband.
We were quite excited. It was my first girl. We went
to an ultrasound at 36 weeks just to check the baby's
size. The tech viewed Chloe's head for about ten
minutes and said ok I will go write the report.

About 5 minutes later a Doctor came in and started
focusing on Chloe's head. After I sat there staring
at him for 5 minutes he said oh you probably want to
know why I'm here. Well yes we do I was getting a
little nervous.

He said your daughter has enlarged ventricles.
Ok what does that mean. He said straight out
I dont know exactly - it could mean a lot of things.
He went on to say she may need surgery as soon as she
is born, that she may be delayed and have some major
problems. That she may look funny when she is born or
have a hard time breathing. Then he just said ok you
guys are free to go. He just walked right out of the
room.

I was balling my eyes out and my husband stayed so
strong for me. So now instead of being excited to
meet her I was so scared. I just wanted her to be
here so I knew she was ok.

For 4 weeks I sat and just cried. I didn't know what
to expect.

Over the next 4 weeks I did not look anything up
did not want to get too worked up. There was a chance
she would be ok.

July 17th she was born. She took my breath away.

After she was born she did not want to eat,
did not cry and couldn't keep her body
temperature up.

She went for an ultrasound at 6 hours old and
they said we can't really tell if she has ACC
so follow up with your Pediatrician.

At 12 hours old I went to look over at Chloe next to
my bed. She was purple and not moving. I yelled for my
husband and just as he jumped up the nurses came in.
They got her breathing again and wisked her away to
special care. She was there for 4 days. We then
brought her home. Still with no idea why she turned
blue.

Her first couple days home all she did was sleep.
When we saw our doctor he sent us to a Neurologist.
We went there thinking a short simple appointment.
We were so wrong. They admitted on the spot to the
hospital for an MRI and EEG. Chloe was only 13 days
old.

We spent 13 long hard days in the hospital with her.
I have never cried as much in my life then I did that
two weeks. She had every test possible done. MRI, EEG,
EKG. She had so much done blood work x-rays and scans.

They told us that she did have Agenesis of the Corpus
Callosum. The doctors said that based on all her issues
already that she would have the severe side of ACC.
They explained it by saying some children are never
affected and some are that it was like a scale.
Based on her failure to thrive, high muscle tone,
poor motor skills, and being aged as a 3 week old
on development she would have the "severe" side.

I couldn't believe it and just kept saying to
myself it's not fair she did nothing wrong.

After two weeks there we came home. We started with
Early Intervention and their services. She started
physical therapy at a month old twice a week.

She then had genetic testing that came back with a
deletion in chromosome 6 and a duplicate of
chromosome 5. They have no idea what this means.

She has failure to thrive and had a feeding tube
placed in November at 4 months old.

She has hypertonia and her nervous system is
affected.

When she was 2 months old Chloe would scream for
hours for no reason. The doctors told us it was
just a side effect and did not know how long it
would last. She has since slowed down with these
spells.

It has been the longest 5 months of our lives.

The doctors just say well she may never walk or
talk and we don't know if she will live a full
life.

I know that we are truly blessed to have Chloe
in our lives. We wouldn't trade a second of it.
My husband has truly been a rock. He still has
not let me see him cry. I think he feels if we
see him cry he is letting us down.

Chloe is almost six months and finally smiling
and cooing.

I hope nothing but the best for anybody going
through this or anything else.

I truly wish I had more support. A lot of people
don't understand and just look away. That hurts
more then knowing Chloe will never be "normal".
Even though I'm still not sure what "normal" is.
To me Chloe is normal and as perfect as she could
be.

I don't know if you will read all or any of this
but thank you it felt good to express my story."

There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Adults with ACC Discuss Social Challenges

2011-01-09T23:49:00.000-08:00

When the corpus callosum is missing, partially missing or
small and thinner than normal, there can be a variety of
possible effects.

One effect that many people who have Agenesis of the
Corpus Callosum (both kids and adults) struggle with
is social skills and the ability to engage in
conversation and socialize easily with others.

Recently a social skills plea for help, from an adult
who has partial agenesis of the corpus callosum, appeared
in an ACC support group that I belong to.

With the adult's permission, I am able to share it here
with you.

A 20-year-old adult with partial Agenesis of the Corpus
Callosum writes:

"Is anyone else out there having major socialising difficulties?
knowing what to say, how to say things and when to say things,
when you are with any people, any time of the day, everyday?
I do. Does anyone have any tactics, training tips they can
share?

After 20 years of it i am getting desprate, now that Im supposed to
be an adult and all. Please help me if you can. Thankyou"

Cassie, also a 20-year-old adult, who has complete
Agenesis of the Corpus Callosum responded:

"I also have troubles with social questions. When I was in
highschool my best friend realized my struggles
( I wasnt laughing at the jokes, etc). She came up
with the idea that when we were out together she
would tell me when a joke was going to be said and
when we were out in a group if I missed something
she would explain to me wat it was I missed and tell
me if it was a sarcastic or literal remark. She would
also kinda give me a nodd when it was appropriate to
say something. fter three years of "coaching" I was
able to get most social questions. I still have difficulty
of when to say things. My biggest issue is coming up
with wat I want to say and the rest of the group is
already 3 topics ahead. In my class right now is a
Professer who likes to tease and it is part of her
personality. So when she is about to tease me she will
give me a wink so I know that its coming.
So,my advice: if you have a really close friend
that you can talk to set up a system so that you
can interact. Eventually you should be able to get
some or most of the social questions."

The adult with partial ACC who posted the original
question replies to Cassie:

"That friend sounds like one in a million Cas. One of my
major issues is that i dont have a close friend or a group
of close friends who I talk to about any of my difficulties,
because they don't understand because they too have their
own social problems. So I'm a bit stuck on the friendship
front. =( I have tried sooo many different settings to try
and make friends but havnt found them yet."

Many parents who have a child with Agenesis of the Corpus
Callosum (or a corpus callosum disorder) understand and can
relate to the difficulties with social skills, making and
keeping a friend or friends, engaging in conversation,
knowing what to say and when to say something and
social interaction with their child's peers that
were expressed by the adult who has partial ACC.

What can you do to help facilitate social skills for someone
who has agenesis of the corpus callosum...is a question that
is asked often by both parents of a child with ACC and some
adults who have ACC.

The corpus callosum is colored in red in the picture above.

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. It is the largest single structure in the brain.

Lynn K. Paul, Ph.D. is the founding past President of the
National Organization for Disorders of the Corpus Callosum
and she is also the head of the Corpus Callosum Research
Program at California Institute of Technology (Caltech).

In her 2003 Conference lecture handout Dr. Lynn Paul
together with Janiece Turnbull wrote the following:

"ACC and Adolescence

Around age 12 and through adolescence, the corpus callosum of typical children becomes more efficient and effecive - this results in
the greater complexity of thought, emotion, and relationship that
becomes possible during our teen years

When the corpus callosum is absent or malformed, it is possible that a child who has been developmentally "typical" may begin to lag behind as his or her peers increasingly depend on their corpus callosums

Or if a child with a callosal disorder has been somewhat delayed, the increased social expectations of teenagers may make the child's delays even more obvious"

The quoted information can be found in the 2003 Conference
handout below:

Adolescence and Social Issues in ACC
by Lynn K. Paul, Ph.D. and Janiece Turnbull, Ph.D.

Dr. Lynn Paul appears in the video below and talks about
social skills, ACC and the corpus callosum. More
specifically she says:

"As children our corpus callosum is not completely developed.

It becomes more functional particularly around age 10, 11, 12.
And if you think about what happens for kids around 10, 11, 12,
everything is about social issues, everything is about who said
what about whom, everything is about all that interaction.
Where your typical kids are cruising along and your AgCC kids
are cruising along fairly similarly; suddenly the corpus callosum
start to develop of those typical kids, their social processing
and problem solving and abstract thinking skyrockets very quickly
and our kids don't."

youtube ACC video documentary:
--Dr. Paul's quote is heard at 8:12 in the video--

The California Institute of Technology, currently involved in a Corpus Callosum Research Program states on their website:

"Research indicates that even those individuals with AgCC who function very well have subtle difficulties in social and executive skills that may impact their daily lives."

The California Institute of Technology website also states:

"The impact of AgCC may become more evident as a child reaches puberty. In a typical brain, corpus callosum functioning becomes much more efficient around ages 10-12, as the callosum mylenates. As the corpus callosum becomes increasingly functional in their typically developing peers, children with AgCC often appear to fall behind. Particular areas of difficulty are social understanding, social communication, comprehension of non-literal language (for example vocal inflection and proverbs), problem solving, executive skills (for example organization, flexibility in response to change, and planning), emotion recognition in others, self-awareness and personal insight. People with AgCC may appear somewhat rigid in their interests and socially simple. In this sense, AgCC symptoms may "get worse" with age ... however, often these individuals learn coping skills well into adulthood, so they may also "get somewhat better" with age eventually."

When a child has agenesis of the corpus callosum the
importance of teaching social skills and looking for
opportunities to help the child engage in social interaction
with their peers should begin as early as possible.

Some kids who have ACC receive a weekly social skills class
at school led by a school psychologist and speech therapist.
The use of social stories, guidance, opportunities and
practice interacting socially with their peers in different
social situations, having a lot of repetition, receiving
encouragement and becoming confident in themselves can be
very helpful.

If your child has an Individualized Education Plan (IEP) in
school, social skills goals should be written directly into
your child's IEP along with their academic goals, keeping in
the back of your mind that as they get older and reach the
ages of 10, 11 and 12 you may see a greater need for new
social skills goals and mentorship help in the school, home
and community settings.

QUESTIONS:

1. Getting back to the plea for help (from the adult who has
ACC) for socializing tips and ideas...what types of
intervention can you suggest?

2. What specific methods have you used for your child who
has ACC that are helping them learn social skills and helping
to improve interaction with their peers and encourage
making a friend?

3. What types of social skills goals does your child, who has
ACC, have in their IEP?

Meet Vance - An Adult with ACC

2010-12-21T13:11:00.001-08:00

"Hi my name is Vance and I am 57 years old. I have Epilepsy, Asthma, Eczema, Heart Disease and Complete ACC.

My discovery of ACC is like a jig saw puzzle coming together in pieces."

When did you find out that you have ACC? How old?

"I was being treated for epilepsy and the doctor showed me the MRI and pointed out the black spot in the middle where the Corpus Callosum is supposed to be. That was at age 27. That was the first clue. How I suspected that clue was this:

At birth I was born with vision problems. I had no depth perception in my eyes.

I was told my first grade teacher had to order books with extra large print. I also had to repeat first grade. To my knowledge that was the only special education I had till High School.

My epilepsy started at age 10 and I Started taking Phenobarbital at 10.

Teasing started as a result. This lasted through my school years.

I had many seizures through the years, grand mal, petit mal and psychomotor seizures.

At 12 years old I remember being told I was to old to correct my gated stance.

At 15 or 16 I had 2 tests Myelography and Arthrography. These are x-rays that were used to x-ray my brain. I got sick from the test and was in the hospital for 12 days."

What did you struggle with in school?

"I struggled in school from grades 1 to 12. I can remember learning sentence structure and not understanding it. Math was always hard; fractions were tough and reading books I disliked. I can remember doing reports and not using my own words but encyclopedias.

As an older adult I find that I now like subjects that I did not like when I was young."

What did you enjoy most and do well at in school?

"I guess all through my school years it was lunch or recess the most. I found reading writing and arithmetic hard. Years later I would find that to be true.

I guess the thing I enjoyed the most was working in the school office and interacting with other adults and meeting people."

Did you struggle with social skills in school?

"I was shy quiet boy and had a few friends. I remember the 1960’s being in elementary school and being teased for taking Phenobarbital for epilepsy.

In high school I remember many a day having lunch by myself. Again in high school I was a loner.

In High School I was pretty much a loner.

I attended the football games my senior year and a few dances. The dances were at my high school and the foot ball games were at a high school across town, as we did not have a football field.

I never attended my Jr./Sr. Proms or Grad night at Disneyland.

My favorite outlet was a club called Campus Life/Youth for Christ.

We had home groups that met once a week for a bible study and we also did school events such as seeing how students would fit in a VW Bug. Campus Life San Gabriel Valley did group things such as a Haunted House for Halloween, Easter and Summer Retreats."

Did you make friends easily in school?

"I was pretty much a loner; I had 1 or 2 friends. I had more acquaintances though. I think with being shy as a kid and having health issues did not help but limited me.

In high school I had a few friends thanks to the Campus Life Club.

I made an attempt at college and the ice seemed to break as I had meet new people from my area. That really helped. !!!!!!!!!!!"

Do you still struggle today with social skills as an adult?

"Yes / No!!!!

What helped me was working for my cousin who owns a restaurant and I had to wait on people and give them what they purchased. This helped me break out of my shyness. I was able to speak to anyone!!!!!!!

Age and experience will teach you the dos and don’ts of speaking to people. Being observant of situations helps too. !!!!"

Can you ride a bike and drive a car?

"I had a tricycle when I was a child; I was told I peddled backward, but I eventually learned the right way. At 13 years of age I learned how to ride a bike that lasted till I was 30 when I ran in to an old car parked in a shadow at night.

Balance, coordination, and depth perception played a part in my decision to stop riding a bike.

As far driving goes, I tried several times to get my license but could not pass the driving test."

I asked Vance: I was wondering if you couldn't pass the
written drivers test or the actual driving part of the
driver's test? Did you pass the written test? Then
you couldn't pass the actual driving part of the test?

"The high school gave us drivers preparation, going through a drivers simulator and than behind the wheel training. After that training I did not persue a license right away.

Some time had passed and this time I checked out the Department of Rehabilitation to try again. They paid for a driving school for a week.

This time I went to the DMV and took the written test and passed and then did behind the wheel with the DMV and failed because of blind spots when driving. I tried 5 times."

Did you attend a mainstream classroom?

"Yes, I did from K to 12.

Now I am back in public schools as a disabled adult, taking computer classes.
I am taking my classes self-paced and not lecture style."

Did you receive Special Ed resource help?

"From 1959 to 1972 in my school years, Special Ed did not exist in my school district.

I remember my sophomore, junior, and senior year being in a reading class with the same teacher year after year. Other than that I received no assistance."

Did you attend college? Did you get a degree?

"Yes. I attended a 2-year college out of high school but sadly did not take it seriously. The end result was I did not graduate from college. It was hard and with no special Ed it was even harder."

Do you have a job and if so what do you do?

"I did work for my cousin for 25 years in a mom and pop restaurant.

I pretty much did every thing accept order supplies, pay the bills and do employee pay checks.

After 25 years of working health issues started to interfere with my job and I was laid off because my eczema had started to get so bad.

Than I made an attempt to get on SSI after 4 years of waiting I succeed.

Thank you God!!!!!!!!"

Are you married? Single?

"I am 57 and still single with no children.

Have dated a few times but nothing-lasted more than 4 months.
I have wondered if my ACC had something to do with that."

Do you have children?

"No"

How does ACC affect you today as an adult?

"I think as an adult today my childhood is magnified in several areas such as coordination, reading skills, math skills, social skills, judgment skills etc."

What do you enjoy doing the most in life?

"I thought about it quite awhile as an older person at ¨57¨ as your interest changes, what I enjoy today I don’t think at ¨18¨ I would have enjoy.

Let me give you some examples:

At 18 I did not drink coffee, today I do.

At 18 I was involved with a group called Campus Life/Youth for Christ, today it is no longer in LA County.

Today at 57 I like to watch tennis and a lot of sports at 18 I was not a big sports fan. I think the reason was due to avoid any contact sports because I have Epilepsy."

What are you passionate about?

"I thank God for my family and all the encouragement they have given me over the years.

My belief in God as I know I was created this way for a reason. My hero is the Apostle Paul and his “thorn in the flesh”. Let me say it has taken half of my life to accept the way I am. It has not been easy. !!!!"

This story has been something that Vance wanted to do for a
long time.

Through his own desire (and a lot of hard work
on his part), Vance accomplished what he set out to do.

I am so happy to see the fruit of his labor and to have had
the pleasure of getting to know Vance better. He is a very
kind person.

It is an absolute privilege to be able to include Vance's story
here for you to read.

Thank you very much, Vance. You wrote a wonderful story!

Vance shared this with me in an e-mail:

"I want to help any one I can with ACC. Young or old or ACCer
or Parent."

After posting this story I received an e-mail from a
grandma who has a young grandson with ACC who read
Vance's story. She commented that Vance didn't
mention if he struggled with buttons and fastening
clothing when he was a kid.

Here is Vance's reply:

"You asked me about snaps and buttons.
As a child it was hard to find button holes and than put the
button through the hole.It depended on the shirt to to how long
it took.
Tying shoes was tough after you made the knot I always wanted
the laces even and I hard time making the bow.
I have been told learning colors was hard for me.
There was always a nightly reminder to take my epilepsy medicine too.
Toys like Lego's and Tinker Toys were you assembled things was tough too.
Finally thank God for Grandma's and Grandpa's !!!!
I have a lot of good memories of my grandma,staying with at Christmas.Making cookies,walking to the store store.Taking of me with my broken leg etc.
All my grandma every knew was I had epilepsy.
Remember we are a family brought together by ACC.Lets help and look out for each other."

Sincerely,
Vance

If you want to leave a comment for Vance I am
sure he would appreciate it.

If you are an adult who has ACC or a corpus callosum
disorder, would you like to share your story?

I would love to hear from you. Send me an e-mail

Questions and Answers

2010-12-13T16:22:00.000-08:00

Cassie is a 20-year-old adult college student who has
complete Agenesis of the Corpus Callosum.

She was recently asked some questions by a parent in an
ACC support group.

Gaining the perspective of an adult who has ACC is always
interesting, eye-opening and valuable.

With Cassie's permission I am able to include her input
here on the blog for you to read.

Cassie writes:

"A while back (names parent) asked me about school. At the
time I did not have the time to answer so here I go.

QUESTIONS ASKED:

What are you taking?
What do you like about it?
What are your ultimate goals?
What are some challenges you've faced?
and some successes you've had?
What has surprised you about school?
What has been just like you expected?

I am at (names college and location). Last January-August
I took a pre-health program with the intention of becoming
a Registered Nurse. I was not successful.

I am currently in the Transitions to College Program for
students with Learning Disabilities. It is a small class
of 15 and 2 professors. I take English, Math(individualized,
Human Development,and Learning Strategies. It is a great
program, it is helping me to improve my self advocacy
skills and organizational skills. We are encouraged
(well told to) use the assistive technologies such as:
Dragon Naturally Speaking, Kurzweil, TextHELP and
Inspiration (still learning to not HATE that one).
They also assist in vocational planning. Doing a really
thorough interests questionnaire.

This program has so far helped me to grow as a learner;
relizing my strengths and weaknesses, strategies for
organization, time management, note taking and study
and test taking strategies.

I have had many small and some big challenges but the
biggest would have to be living away from home: not
realizing when some household chore needs to be done,
budgeting and times management. It was really difficult
for me because I wanted to be the responsible Adult
everyone at home knew me to be but without my Mom to
guide me I started to fall through the cracks. Not only
was I trying to make friends and do well in school I had
to learn to do many things on my own without the guiding
from my Mom. After eight months of struggling I realized
that I need to get my Mom attached to my Bank account
because I could not deal with budgeting and finances on
my own, moved into an apartment with friends that I knew
were supportive and not rude about my being different and
I also sit down with someone from disability services and
they help me to structure out my week (when to do
homework, what chores when, appointments, etc).

Successes i've had: well realizing I need to ask for help,
passing the courses that I have.This semester getting 80's
and 90's in english and math. Also, getting up the courage
to attend a local church and makeing friends through the
post secondry small group.

What has surprised me about school: the large amount of
classes (i reduced my course load the first two semesters),
That I can actually get honour grades. that I am able to do
most assignments on my own without a professor constantly
looking over my shoulder.

What has been just like i expected:NOTHING!
I did not know what to expect when I began this new
chapter in my life. After all the trials the good lord
put me through the summer/fall before I started I really
had no expectations other than to survive this new
adventure.

I could continue to write much more but am beginning to get
finger tied...LOL"

Thank you very much, Cassie, for taking the time to share
your very honest and open feelings about your experiences
and challenges with college and life in general.

Please consider taking a few minutes to leave a comment for
Cassie. Or you can send me an e-mail for Cassie and I will
forward it to her.

Cherished Moments...

2010-11-25T12:42:00.001-08:00

Today I was sitting quietly in another room
in our home when I heard laughter and the
everyday goings on of playfulness taking
place between my husband and our child in our
child's room.

But then my attention was completely captured when
I heard the voice of my husband saying to his child...

"I have this little boy...he's so sweet
I think he's made out of candy."

and Matthew giggles filled the room and my heart
danced with pure, sweet joy.

I am forever blessed and touched to have heard that
and I am so thankful for my loving husband and our
"sweet as candy" child, Matthew.

What Time Is It?

2010-11-13T20:41:00.001-08:00

The answer to this question has a story.

My child, Matthew, has complete Agenesis of the
Corpus Callosum. He is 17 years old but he
functions on the level of a young child.

Teaching different animals and their sounds is
fun for all kids.

Quick example: I will say:

"Matthew, what is this?"

*shows him a Pig*

He will use sign language and sign "pig".

Then I will say:

"What does a pig say?"

When you ask a child what sound does a pig make, they
can typically tell you "oink oink." But Matthew cannot
SAY it so we worked instead

(for a lonnnnnnnnnng time)

helping Matthew learn how to make the SOUND a pig
makes....*snorrrrt*

It was very difficult for him to learn.

After a VERY long time Matthew learned how to make ONE
"snort".

It was a BIG event the first time that I heard him make
the sound. But the only time he could snort was laying
down on his back. If he would sit up, no more snort to
be heard.

After A LOT more practice and a long time, he mastered the
skill of making one single snort sound while sitting up!
It was a celebration!! Mama & Matthew piggy snorts filled
the room, accompanied with laughter.

There's no other way to say this except to just say it.
Matthew's Mama *points to self* is a goof. Matthew and I
are both silly and we laugh a lot.

I often make little piggy snort sounds for Matthew and
give piggy snort kisses. He can make one piggy snort back.
I wanted to help him learn to make several snorts in
a row so that became our mission and we worked on it.

The first time he decided to practice "snort, snort, snort"
all in a row was this summer right out in public while we were
outside walking on the sidewalk in a strip mall shopping area.

It took every ounce of ummmmphfff in Matthew to be able to
get into the groove (and caught me quite by surprise) not
to mention was very funny.

In order for him to make more than one snort he has to put
his whole body into it...his shoulders move up rigidly, his
head jerks and his whole body becomes a snort, snort maker.

Learning this new skill (and it is a very important skill)
*nods and grins* is something he worked on all summer long
and it typically happens at home on a whim.

But last Thursday we went to the market, Mama, Dad and Matthew

And.....

For whatever reason (of which I do not know)...it was
"snort snort" practice time for Matthew.

The grocery cart train...

Matthew pushing the cart, practicing his "snorting" extravaganza

Mama the caboose, laughing like a little kid

And Dad the Engineer, pulling the chugga chugga "snort
snort" giggling grocery cart down the aisle, saying
"you guys are crazy."

I caught the grown up in me saying out loud, through my own
childish chuckles, that there is a time and place for snorting
and the market isn't the time or place but it quickly became
apparent that the little kid in me (of which I am quite fond)
won and I relished in the fun and amusement.

He snort, snort snorted down the aisle, to the bakery
section where Dad bought a little cake and continued right
on practicing through the check-out.

The girl grocery clerk with dark hair and a big smile, who
rang up our groceries, was so sweet.

I told her (amidst Matthew the snorting machine) that he
just learned how to do this. She replied, with a smile,
"He's having fun."

So there it is, a little "oink oink" humor.

I guess you could say Matthew is a little ham.

But he is OUR little ham and I'm super proud of Matthew and
everything that he learns, even when he innocently has the
urge to practice learning right in the middle of a grocery
aisle.

Those silly little snorts with a mixture of Mama's laughter
and Dad going along for the ride made for a very good day
that just happened to take place in a small, local, friendly,
family owned market....one of our favorites for fresh fish,
but now it will forever hold a very special memory of a
certain sweet, little ham.

A Labor of Language (and Love)

2010-11-08T00:03:00.000-08:00

Language and having Agenesis of the Corpus Callosum
can produce a variety of challenges when it comes to
communicating.

I have wanted to include more information here about
the different types of speech and language issues that
some people deal with who have ACC.

Recently the parent of a 13-year-old child with
Agenesis of the Corpus Callosum shared a true story
snippet of insight in an ACC support group. With
permission from the parent, I am able to share it
here with you.

I love how the parent spells out the struggle and makes
it come to life by telling an actual conversation which
provides a glimpse inside the world of what it's like
to not only be the person with ACC and struggle with
words, but also what it's like to be on the reciprocal
side, trying to figure it out and piece it together.

The parent is replying to another parent and writes:

Celeste (13 cACC) was a vowel talker too! I used to say she
did not ever babble. No mamamma, babababa, dadadada. Nope!
But she wasn't quiet, she just made very loud vowel sounds.
Great to hear someone else had the same experience. Celeste
is 13 now and still is not one of great words. She is not
quiet, she is just not a great communicator.

Celeste still looses words. Words she completely knows but
when talking often just forgets them. Just yesterday for
breakfast....

Celeste: "Mom, can I have one of those things?"
Me: "What things?"
Celeste: "you know, the uh, um, thing"

Now mind you she is giving me some sign with her hand but I
had no idea what she was saying.

Me: "Do you eat it?"
Celeste: "Yes, mom! A, um, um, you know, um I ate it."
Me: "You ate it when?"

Now she is getting frustrated so she really cannot communicate.

Celeste: "UGH! Mom, come on. I just want a thingy. You know. From the fridge."

Oh, yeah, now THAT narrows it down!

Me: "Do you cook it?"
Celeste: "Yes in the microwave."
Me: "Is it big or little?"

Of course this is a stupid question so now she is mad.

Celeste: "MOM! A thingy. You heated it up yesterday and I ate it. For breakfast yesterday"
Me: "Ohhhh, a muffin?"
Celeste: "Ah, muffin, yeah, that's it."

"We have many many conversations like this."

The parent went on to tell me...

"Some words she has "lost" in mid conversation....Refrigerator,
broccoli, muffin, pencil. The list goes on and on. It is never
a word that is unusual and it is a word she may have just said.
Crazy! There are times I feel like I live one giant charade game!"

Sunset Thoughts

2010-11-06T16:34:00.000-07:00

Sunset Thoughts

Reflections in the water
peace upon the sky.

Put all your cares and worries
on waves of lullaby.

Illuminate your blessings
ponder them with love...

Sealed with a sunset
from God in heaven above.

© Sandie L. Davis 2010

Photo of the beach in Lincoln City, Oregon

Interactive Alphabet - ABC Flash Cards

2010-10-25T01:18:00.000-07:00

Educational methods and teaching strategies can sometimes
be a challenge when you have a child who has Agenesis of
the Corpus Callosum.

I am always on the search for new ways to help my child,
Matthew, who is completely missing his corpus callosum,
learn through methods that speak directly to his style of
learning.

Flashcards, for Matthew, are not an option.

But give him "Flash Cards" that he can see, hear and interact
with and now you speak his learning language.

You can actually play the Xylophone and hear the musical
sounds by touching each key. My child loves this one and
so do I. Last night I played "twinkle twinkle little star"
on it. Slide your finger from one end of the keys back
to the other end, like Matthew just learned to do, and see
what happens.

Interactive Alphabet - ABC Flash Cards is a new educational
iTunes "app" that is awesome!!

It is a hands-on experience that allows a child to interact
with each letter of the alphabet in a multi-sensory way.

Touch the "Aa" and hear it SAY "A".
Touch the "Aa" again and hear the letter sound.

Touch the word associated with the letter and
HEAR THE WORD out loud...as many times as a child
wants and/or needs to hear the word.

Repetition, Repetition, Repetition, a very common motto
associated with many people who have Agenesis of the
Corpus Callosum.

Touch the picture associated with each word and bring
the word to life right before your eyes, ears and
your fingers. Then watch those fingers want to keep
touching, playing, exploring and learning.

Watch a demo video clip below:

Tt is for TRAIN is a favorite of ours. Touch the train
and it starts moving on the tracks..."chugga chugga chugga".

One improvement I would like to see is that when we use
Interactive Alphabet on the iPod Touch, the tiny before and
after letter choices and the main "ABC" choice located at
the top of the screen do not always stand out well
enough to easily see them on every letter page.

Matthew has some challenges with fine motor control and
he requires some hand-over-hand help to show him what to
touch and when to slide his fingers to make something happen.

Sometimes he moves his finger near the top of the screen
while interacting with the corresponding letter picture and
he accidentally touches the "ABC" main key without
meaning to which abruptly moves him off the screen he
was playing on and sends him back to the main A to Z
letter choice screen. But overall he is doing well using
Interactive Alphabet on his iPod Touch with his iMainGo
2 speaker case.

I am extremely impressed with this Interactive Alphabet
app, so much so that the first night I purchased the "app" I
found myself acting like a kid eagerly touching letters and
playing.

I zipped the ZIPPER up and down and up and down, hearing
the zip zip zipping sound each time, then touched the
TRAIN, with Matthew, and watched and heard it chugga
chugga along the tracks with an added interactive
"woo woo" from my child, Matthew.

On Sunday my child and I played with Interactive Alphabet
together and we loved every ABC minute of it. We shared
our own imaginative interactive fun on top of the built-in
action that is part of the game. For example, the
"Rr is for ROBOT" page became even more fun when I turned
into Mommy Robot and said:

*in robot voice*

"Math-You touch the word ROBOT".
"I am Mom-Me Row-Bot, You are Math-You Row-Bot.
We are Row-Bots".
"R" "rrrr" "rrrr" Rowwwwww-Bot"

He signed the word "more" several times to keep Mommy
Robot activated and he also touched the word "ROBOT"
when I would ask him in a robot voice to find the word!!
It was an amazingly fun time!!

Another one of his favorite letters to interact with is
"Dd for Dinosaur". He imitated the noise the dinosaur
makes and did this over and over.

After a little hand-over-hand help from me, Matthew
mastered the "Zz is for ZIPPER" and was zipping it
up and down.....Zippity, Ziiiiiip, ZIP!

It's wonderful watching my child interact with a
motivational teaching tool that is helping him learn.

Interactive Alphabet by Piikea Street is fantastic FUN!!

Choose the option of having 1 of 3 different musical tunes
playing in the background during the interactive fun or
choose no music at all.

This "app" is one that I know we will be using a lot and
I can envision using it with my child in a variety of
educational ways to help him learn to find letters of the
alphabet and words too. I anticipate it might even help
and encourage him to improve his fine motor skills.

$2.99
Buy Now in iTunes App Store

Want to read more reviews here about educational "apps"
for the iPhone, iPod and iPad that we discover, like
and use?

What are your child's favorite learning "apps"?

Sara's Story - An Adult with ACC

2010-10-13T14:14:00.001-07:00

Hello, My Name is Sara, I'm 30 years old and have
Hydrocephalus (VP shunted), Epilepsy, Complete
Agenesis of the Corpus Callosum & Chiari Type 1.

I was made aware of my ACC during an emergency room
visit for Hydrocephalus related issues. I was 19 yrs
old at the time.

I have always struggled in school both academically
and socially, math was always the most difficult
subject, though in 4th grade my reading and
comprehension were at about college level. To this
day math is still very difficult for me.

I always had friends but seemed to lose them as
they moved on to other interests (like boys) and
as I progressed from Elementary, Jr & High School.

I was always more at ease with my friends parents
then my friends, and generally speaking my friends
are usually much older or much younger than I am.
I never quite fit into my peer group, and still
don't feel like I fit in.

I attended Regular Education classes with Special
Education support from Kindergarten until I
graduated High School.

My Balance has always been off and things like
riding a bike and roller skating always took
considerably longer then my normal peers, however
I was very strong willed and rarely gave up on
anything, at 30 I still have yet to get my drivers
license, though I hope to have it one day.

I'm the mother of 5, 3 in my home, and 2 in my heart.

My youngest son was diagnosed with an Autism Disorder
at 18 months, after reading a study on Autism and ACC
misdiagnosis it prompted me to research my own CC
disorder to see if my son might have one as well,
he does not.

We're currently testing my oldest daughter for
either an Autism or CC disorder, only time will tell,
however my middle daughter seems to be perfectly
healthy.

I also suffered 2 miscarriages, a little girl
later in the pregnancy due to a severe Spina
Bifida issues, and a son for unknown reasons.

I've been raising my kids by myself for the majority
of their lives with going to school, I'm working
on a continuing Medical Office Management Degree
specializing in Medical Billing. I've managed to
stay on the Honor roll, a real feat given my earlier
school struggles and one I'm extremely proud of!

My passion is my children, especially Pregnancy &
Infant Loss after the death of my babies, however
I'm also very active in the Autism community and
am finding my way in the ACC community as well.
I may have ACC, but I never let it have me!

~Sara

I am honored to have the privilege of being able
to post Sara's story here for you to read. And I
am incredibly thankful to Sara for her willingness
to share her own personal ACC story and details
of her life with us. Thank you very much, Sara.

Sara left a comment on a previous blog post
responding to "Autism and ACC".

"I have ACC and have 2 Children with Autistic-Like
Tendencies. One child has Autism (MRI ruled out ACC)
The other remains to be seen!"

Her comment sparked some e-mail exchanges between us.

In her e-mail to me, Sara graciously wrote:

"If you ever want to talk or ask questions feel free!
I live a very " open book" life."

Being the parent of a child with Agenesis of the
Corpus Callosum, and having a great interest in
learning more, I took her up on her very kind offer
and asked Sara some questions.

When did you find out that you have hydrocephalus?

"Since birth, I was actually one of the few babies diagnosed
in utero (in my mom's 8th month of pregnancy) before it was
commonplace."

Do you get any special education accommodations or
assistance at the school/college that you attend now?
If you do, what type of services do you receive to
help you?

"I don't have anything specifically in place however if
I need anything my tecahers are open and accomidating and
I don't suffer penelties for late work the way my normal
peers would. It's a very small private school so they don't
have a disabilities department the way a community college
or major university would, but they're willing to work with
me if I ever need extra time on tests or assignments. My
failures in High School have taught me that unlike most
people who use one learning style...I need them ALL in
order for the information to click...see it....read it.....
do it."

Is there any one thing (or more than one thing) that
you deal with now as an adult who has ACC that is
particularly difficult for you?

"I think the most difficult thing is the social aspect,
especially now that I have kids and need to interact
with other moms....It feels weird trying to fit into
their world. :( Part of me is still so much a child.....
and probably always will be. I can't always explain it,
but I guess that's part of the problem :D I just don't
feel like I *fit* with the normal moms."

Have you tried in the past to get your license by
taking the written test or the actual driving test?

"I've taken the written test and passed it, but the
driving test I haven't taken or passed, I still feel
very unsure of myself behind the wheel and I don't
have a car I can practice in and the length of normal
driving instruction classes doesn't seem long enough
to me."

I could go on and ask Sara more questions...but I
thought it would be a great chance for some of you
to ask Sara a question so I asked her if she would
be ok with answering your questions.

Sara replied:

"That would be fine! Like I said.....Open Book.
If I can help another parent I will :D"

QUESTIONS FOR SARA:

You mentioned in a post to the Listserv that it took you
6 years of studying and hard work to get your high school
diploma. THAT is a huge accomplishment!

My questions are: Did you attend high school for four years
and left after four years without a high school diploma?

Or did you spend two additional years in high school
working on getting your high school diploma?

Or did you study for the next two years once you left
high school to get your GED?

Do you find it difficult to remember things that you
study and read?

Do you have difficulty recalling information?

What specific kinds of things do you do that help you
remember and recall information?

SARA'S ANSWERS:

Questions are ALWAYS welcome! I attended HS for 6 yrs
straight, though I had to repeat 10th grade 1 1/2 times,
and then 1/2 of 11th grade :D so that made 6 yrs :D Back
in the day a GED wasn't * as good* as a HS Diploma so
H*ll was going to freeze over before I didn't graduate!

As far as learning recall can be hard for me and in HS
they focus so much on " find your learning style" and
while some are auditory, and some are visual and some
hands on learners....I really need all 3 to get it!
Plus it really took me until College to find an
organization system that worked for me...so it's hard
to STUDY notes if you can't FIND them :D I spent all
of HS pretty much trying to find my way on my own....
one thing would work for a while and then it would be
too hard to keep up....and now in college I keep it
simple...1 notebook one folder...everything has a place.
In HS every teacher seems to have a way *they* want
things....and everytime I tried * thier* way I failed!

QUESTIONS:

When you read something in a book, can you easily remember
what you read and recall the information at a later time?
Is that easy for you?

If it's not easy to recall information, do you do specific
things that help you when you study...like type up notes or
turn it into a song or something else that helps?

Or is your difficulty more with staying organized?

SARA'S ANSWERS:

Yes Information Recall is pretty easy for me , maybe
not the first time but what I will do is read something
all the way through the first time (I devour books!) and
then go back and reread maybe 1-2 sections/ chapters at
a time if I really NEED to know the material
( like for a test) but usually after the first time I can
tell you the gist of a story.

But the majority of my issues in school were organization
especially because it seemed there were always 1-2 teachers
(if not ALL of them) who insisted i have a separate notebook/
folder for each class and that was too much for me to keep
up with. Now I have one Folder...and 1 multi-subject Notebook,
much easier

If you have a question for Sara I will pass it
on to her and post Sara's answer here on her story.

You can also E-Mail me your question for Sara.

And if you want to leave a comment for Sara I am
sure she would appreciate it.

If you are an adult who has ACC or a corpus callosum
disorder, would you like to share your story?

I would love to hear from you.

Autism & Agenesis Corpus Callosum

2010-10-11T00:06:00.001-07:00

I recently watched the movie "Temple Grandin" on DVD
and absolutely loved it.

Have you seen it?

It is an original HBO film.

I rented the DVD from redbox for $1.00.

Dr. Temple Grandin is an Author, a Scientist and a Professor
at Colorado State University. Oh, and she happens to have autism.

The movie is based on Temple Grandin's life story and
is absolutely worth seeing.

Watching the movie is an eye-opening experience for
those of us who don't have autism, for those of us
who work with kids who have autism and for those of
us who are parents of kids with autism or
agenesis of the corpus callosum.

Temple Grandin, who has autism, has a very unique ability
to provide incredible insight into what it is like to be
autistic.

When you rent the DVD movie be sure to also watch
The Making of Temple Grandin Commentary in the Special
Feature section of the menu.

Actress, Claire Danes, portrays Temple Grandin in the
movie.

The Commentary goes through the movie and gives
verbal input from the real Temple Grandin and also from
the writer and director.

I found the Commentary to be very insightful and
interesting listening to their dialogue and conversations
in addition to the movie scenes.

And if you're wondering why I'm posting about autism on
a blog that's about Agenesis of the Corpus Callosum it's
because, while ACC and Autism are two separate
neurological disorders, some kids who have
Agenesis of the Corpus Callosum (or a corpus callosum
disorder) may also be diagnosed with Autism,
Autism Spectrum Disorder (ASD) or Pervasive
Developmental Disorder-Not Otherwise Specified
(PDD-NOS).

Some kids who have ACC don't have autism but can
sometimes display some autistic-like behaviors and
may have some similar autistic traits like sensory
issues, stimming behaviors, challenges with abstract
thinking and social challenges.

My own child, who is completely missing his corpus
callosum, does NOT have autism but he does have some
autistic-like behaviors.

Some kids who have ACC may be bothered and even scared
by loud noises or by particular noises. They may cover
their ears and need to get away from the noise.

Some kids who have ACC may also have trouble processing
the information that they hear due to sensory processing
issues.

Due to the lack of awareness of ACC and lack of written
information pertaining to corpus callosum disorders, it can
be helpful to seek out books that deal with autism because
they may often times provide some information about similar
symptoms and challenges sometimes also seen in people
who have corpus callosum disorders.

Hopefully in the very near future Agenesis of the Corpus
Callosum (ACC) and corpus callosum disorders will be as
familiar and recognized as the diagnosis of autism.

More research with respect to corpus callosum disorders
may even provide a possible correlation between the
corpus callosum and autism..?

Getting back to the movie, check out a conversation with
Temple Grandin in the video clip below:

Temple Grandin strongly believes (and speaks often about)
the need to have more research on sensory issues.

An interesting conversation took place in the
Making of Temple Grandin Commentary that dealt with
sensory issues. It involved a particular sensory
issue involving her aversion to automatic sliding
doors.

This question was asked of Temple:

"If someone had gone with you through a door all day
long do you think it would have desensitized you?
Could you have gotten over it that way?"

Temple's Answer:

"You can desensitize. See, this is something that is
always brought up about sensory problems. Well, if
the kid is afraid of noise do you just jam them into
it? You can do a certain amount of that desensitizing
but it works best if the individual makes the door
move or turns on the sound."

Temple goes on to say that if you just jam a person
(who has sensory issues) into the middle of a big, noisy
situation they can get into total sensory overload.

She has also written several books about autism
that deal with sensory issues, social challenges
and more.

I have read her book titled Thinking in Pictures.
She is a wonderful writer. I love that she is clear,
concise and writes in an easy-to-understand style that
flows giving detail and insightful information.

Check your local library to borrow Temple Grandin's
books.

Click on the links below to read inside her books.

Thinking in Pictures-click to read

The Unwritten Rules of Social Relationships-click to read

The Way I See It: A Personal Look at Autism & Asperger's-click to read

Dr. Temple Grandin speaks at many Autism Conferences
across the US.

Is Dr. Temple Grandin speaking in your area?

2010 Autism Conference Schedule

Personally, I think it would be great to have Dr. Temple
Grandin speak at the next Disorders of the Corpus Callosum
Conference.

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

Handwriting Help

2010-09-12T00:10:00.000-07:00

Handwriting can be a challenge for some kids who have
Agenesis of the Corpus Callosum.

There are several concerns, for some kids who have ACC,
when it comes to handwriting. One of them is...holding
the pencil correctly while being able to make the writing
movements comfortably and easily.

Some kids who have ACC may have challenges with fine
motor skills.

My child, Matthew, who is completely missing his corpus
callosum, picked up pencils, crayons and markers by
wrapping all of his fingers around the pencil and making
a fist...also called a palmar grasp (which he still prefers).

We also tried 100,000 different kinds of pencil grips (ok not
that many but A LOT) with Matthew until his special
education teacher in about 5th grade discovered a
particular pencil grip that he used/tolerated fairly well.
Although he is still unable to write letters, he can make
circles and lines.

There are also additional struggles and challenges when it
comes to handwriting and some kids who have Agenesis of
the Corpus Callosum that I hope to address in another post.

But the whole reason why I am writing this post is because
I want to share a couple of handwriting strategies with you
that I have seen many parents, who have a child with ACC,
speak highly of and say how much they have helped their
child.

The first is an ergonomic pencil called Twist'N'Write
made by PenAgain. And the pencils are refillable.

Twist'N Write Pencils by PenAgain.

The Twist 'N Write pencil is made for small hands
(elementary school children) and cost only a couple
of dollars for a two-pack.

View a story about it being used in the classroom
on Fox news:

Read what an Occupational Therapist has to say about
the Twist'N Write pencils:

"Hello Pen Again. I am an occupational therapist at Lucile
Packard Childrens Hospital and I work with outpatients at
our therapy center at 2345 Yale Street in Palo Alto. I want
to thank you for sharing the new Twist n Write pencils with
our OT department, and to let you know that our supply of
pencils has diminished to only 2 because we have found it
to be so helpful for our patients. The pencil has been
particularly helpful to children with Down Syndrome, hand
or thumb weakness, and those with poor coordination who
cringe at the sight of a pencil, but is intrigued by your
pencil’s unusual shape. An 18 year old patient of mine who
has had brain tumor surgery with residual weakness and
hypertonia in his dominant right hand, is now able to
write again with that hand because I started him using
the Ergo Sof. Now, he is writing a journal entry every day,
and drawing cartoons."

J. Kitsuwa-Lowe, MA, OTR/L
Occupational Therapist

PenAgain also makes pens

as well as Twist'N Write pencils.

There are several styles to choose from.

Pencils and Pens can be purchased at local stores near you including Staples, Office Depot and a few other stores or
can also be purchased online.

The second handwriting strategy that parents speak highly
of who have a child with ACC is Handwriting Without Tears.

Handwriting Without Tears was created by a mom,
Jan Olsen, who is also an Occupational Therapist.
Jan's mission to help her own child learn handwriting
began in 1977.

You can read more about the history and mission behind Handwriting Without Tears.

Handwriting Without Tears is a hands-on approach to
learning using multisensory methods to help teach
handwriting. Many kids who have Agenesis of the Corpus
Callosum respond very well to a multisensory approach
to learning and the ability to learn through a hands-on
style.

Check out a video of a child and his teacher using one of
the hands-on methods to help teach capital letters:

View more video demos of Handwriting Without Tears.

Your child's school may already have access to
Handwriting Without Tears. If your child is struggling with
handwriting check with your child's school to see if this
educational teaching tool to help promote handwriting can
be incorporated into your child's educational program. And
if your child has an Individualized Education Plan (IEP)
be sure to have it written directly into your child's IEP.

You may also want to check out the Back To School: ACC
documents post for more educational information.

Back To School: ACC documents

2010-08-29T14:15:00.000-07:00

Kids and school and ACC.

This is a repost because Fall is right around
the corner and that means:

Below you will find a list of ACC Educational
documents that are available.

I will continue to add any new ACC documents
that pertain to education to this page so
they are all located in one place and easy to
find.

If you are aware of a helpful document about
ACC and Education please let me know by
leaving a comment or sending me an E-mail
so that I can add it here.

ACC EDUCATIONAL INFO:

Educational Suggestions For Children With ACC

“Considerations For Educators Of Students With ACC”:
Mr. McCallum wrote this document. He is a teacher
who taught a child with ACC in his classroom. He
offers detailed and valuable information.

If you would like to receive a copy of
“Considerations For Educators Of Students With ACC”
sent to your e-mail please send me an E-Mail request.

In your e-mail it is helpful to know if you are
a parent or a teacher requesting the information.

The ABC's of ACC - printable version

ACC Reading and Comprehension

Handwriting Help

ACC: Social Skills & Challenges

Neuropsychological Evaluation

ACC & Me Children’s Book
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, however, they do accept donations of any amount.

ACC: Learning Colors - printable version

Marvelous Music:
A Musical Pathway To Learning For Kids Who Have ACC

Teaching Resources

National Organization for Disorders of the Corpus Callosum
"Facts about Agenesis of the Corpus Callosum and other Diagnoses"
(NODCC) Printable PDF Brochures: (give one to your child's teacher)

Disorders of the Corpus Callosum Brochure: English

Spanish brochure
Chinese brochure
French brochure
German brochure
Japanese brochure
Korean brochure

Live, Love, Laugh!

2010-08-23T22:09:00.000-07:00

"A good laugh is sunshine in a house."
-Anonymous

Bugg is a beautiful boy who, aside from having
agenesis of the corpus callosum, has the most
wonderful, happy-spirited laugh that echos
from deep within his soul and touches the hearts
of others with resounding joy.

The Bugg's *Special* Life is a blog that I fell in
love with from the first time I read it and I
always look forward to reading each new post
that Bugg's Mama shares. She celebrates life in
all it's spectacular moments and wraps it in a
package filled with love (and laughter) and
family.

Dear Bree, "Bugg's Mama"

I am so thankful to be able to get to know you
through e-mail exchanges and through all of
the uplifting, encouraging, inspiring words and
pictures that you share on The Bugg's *Special*
Life.

You are a blessing and you let your light shine so
brightly into the lives and hearts of so many people.

Thank you for allowing me to share Bugg's video
here for other people to see. ♥

Love,
Sandie - Matthew's Mama

"Laugh as much as you breathe and love as long as
you live."
--Anonymous

"A smile starts on the lips, A grin spreads to the eyes,
A chuckle comes from the belly,
But a good laugh bursts forth from the soul,
Overflows, and bubbles all around."
-- Carolyn Birmingham

Take a stroll through the Bugg's Life...

P.S. Bree, your house is undoubtedly filled with
super fantastic sunshine! ☼

"The most wasted of all days is one without
laughter."
--e.e. cummings

view Bugg's original video blog post

"Laughter is the sun that drives winter from
the human face."
-Victor Hugo

photos and video courtesy of Bugg's Mama

ACC and Moms-To-Be #5 Story

2010-08-18T09:13:00.000-07:00

This is the fifth story about ACC and Moms-To-Be.

Part of this story began as a letter that was originally
written back in June and given to me to pass on to a
Mom-To-Be who I was e-mailing with who had just
received the news that her baby has ACC. I asked
Katherine if she would consider sharing her story
here on the blog in the hopes that it could reach out
to even more Moms-To-Be. I recall Katherine's e-mail
response to me was that she immediately thought "YES!"

What you will read, that began as a letter to one
Mom-To-Be, turned into additional heartfelt feelings
and became Katherine's ACC and Moms-To-Be Story.

It is a privilege to be able to post her story here for you
to read. Thank you very much, Katherine, for sharing
a very personal part of your pregnancy and the emotions
that you endured with many more Moms-(and-Dads)-to-be.

Written by Katherine:

"I remember when I was getting a routine ultrasound,
and the docs noticed slightly enlarged ventricles
on our baby's brain, I had no idea the journey I
was embarking on. We went a few weeks just
monitoring the ventricles, having no idea I was
going to have a child with a disability! Things
like this just didn't happen to people like me.
How selfish and unaware I was to think that.
At that point, the "worse case scenario" was
possible hydrocephalus where the baby might need
a shunt after birth. Well, just to be safe, we
were sent for a fetal MRI, and everything changed.
Our docs went from being so positive and encouraging,
to total devastation and talks of termination. The
same people in the offices who were so happy at
every weigh in, giving our other daughter lollipops
and framing ultrasound pictures could barely look
me in the eye. Our little girl looked so perfect
on ultrasound - normal brain size, normal body,
all organs intact and functioning normally, normal
amnio, normal fetal EKG - was this diagnosis that
bad that more than 50% of people terminate? The
only intelligent questions we could think to ask
were, "what are the chances she could be normal."
And what we quickly learned was there is no clear
answer - anything they said was contradicted by
something we would read online. What one doctor
said would be contradicted by what another said.
It seemed like nobody really knew anything - and
playing the odds was not recommended. The
conversation always circled around to termination.
I had a doctor rub my back while I was sobbing in
his office and he said, "don't worry, you can have
more children and we will just put this behind you."

At 31 weeks pregnant, I turned to the ACC list serv
as part of my research. I was devouring information
so that I could make an intelligent "decision" on
whether to terminate or not. I would stay up all
night reading and reading, then report my findings
back to my family. We would argue, cry, discuss and
debate everything I read. We would change positions
in a single conversation - it was tortuous! The
list serve was the only place where I was able to
speak with real parents, real children and see actual
kids with ACC. I wanted to see pics of kids with
ACC - that might sound superficial but I had no idea
what to expect! One Mom sent me pics of her 6 week
old son - and I passed it to my whole family - and I
kept saying to everyone, "look at how normal this kid
looks - how can he be missing this part of his brain?"
I remember one of my first posts was asking if our
daughter would cry like a normal baby, would she be
in the normal nursery, would we be able to hold her?
The answers I received and support changed my life
forever - and in a way, helped me to realize there
was no "decision" to make. ACC is not a diagnosis
worthy of termination. Just because Maggie's life
was going to be different or difficult, was not
grounds to end it.

I am a Catholic woman who never would have thought
I would consider terminating a pregnancy but that is
the situation I found myself in - it was the darkest
moment of my life and one in which I believe God
stretched out His hand and lifted me from. I prayed
daily that God would take this decision from me -
that if she was to have life, that He give it to her.
And if she was not to be of this earth, that He take
her now. Well, after all of my research we just
could not go through with termination and decided to
stop talking about it. We were having a baby and
that was the end of it!

Maggie's birth was a beautiful experience, and she
cried a gorgeous normal infant cry. She had a head
ultrasound after birth which showed no hydrocephalus
She breast fed like a champ and went home just like a
typical infant! She hit all her first year milestones,
some delayed and some early.

Maggie is the light of our lives. She is our second
daughter, and I don't know how I would ever explain
to our older daughter that we terminated her sister
because she was not "perfect." We live in a society
where we want to fix everything - and if it is not
the way we want/expect, we have to do whatever it
takes to get back on track. Well, having a child
with ACC changed the course of my life - and I liked
my life before! I did not want to change course!
But thank God we did - because this has been the
most amazing, beautiful and inspirational journey
of my life. That is not to say our lives are not
filled with worry and stress at times. ACC is a
"wait and see" diagnosis and we know that Maggie's
development can change at any time - she could
develop seizures, learning disabilities, etc. We
just take life one step at a time and celebrate
everything she can do - which right now is everything
and anything she puts her little mind to! Her
neurologist said to us at her one year check-up,
"there is no reason to think her functioning will
be limited in any way. It appears at this time
that she will lead a typical life."

It is my hope that more doctors will be comfortable
discussing positive stories about ACC. I believe
they discuss termination and worst case scenario
because they do not know a lot about it and we fear
the unknown, and they are nervous about litigation
since ACC is wait and see. If they do not counsel
termination, and you have a more severe case, you
could then sue them for wrongful birth or wrongful
life. The period of time from diagnosis prenatally
and birth should be spent preparing and getting used
to your new reality - mourning what you had previously
hoped and dreamed and developing new dreams, making
new expectations. It should not be spent making a
"decision."

Education and research will help to shed much needed
light on ACC so that other parents are not faced with
these types of decisions - so that they do not terminate
a child like Maggie. When I think that her life might
not have been, I get chills. I mean who I am to have
prevented her life to never be? I am her mother and
I could have taken her life? I was put here to give
her life! I could not imagine this world without her."

1 year old Maggie and her big sister

There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Stories2Learn - Social Stories

2010-08-15T00:31:00.000-07:00

Did you watch the video?

That's all it took to spark my interest and within a
couple minutes I was enthusiastically exploring more
about the Stories2Learn application "app" to make social
stories for my child, Matthew, who has Agenesis of the
Corpus Callosum.

"Create personalized stories using photos, text and
audio messages."

"Stories2Learn works with iPhone, iPod Touch or iPad."

Price: $13.99

"Stories2Learn was developed by an educational team
consisting of teachers, a speech therapist, and a
school psychologist specializing in educating
individuals with communication challenges."

For about the cost of one book in the bookstore you can
have an endless library of personalized possibilities
to create for your child or student that meet their very
specific needs to help with: social skills stories, daily
schedules, teachable stories and so much more...that
enable photos, your own text and audio messages that you
personally record on each page.

Stories2Learn Tutorial movie download
Note: video tutorial takes several minutes to download

You write the story from the first personalized
page to the last. And, you can easily edit any page
any time...from pictures, to text and recorded
messages. You can also add more pages or delete
pages in the story. Plus you can keep on adding
new stories.

When you click on "My Stories" you will go to a screen
that says "View Stories". There you will find a list of
all of the stories you made. You can easily view a story by
clicking on the picture icon and story name.

After reading reviews about Stories2Learn and watching
the video of Leo's social story I went directly to itunes
and purchased Stories2Learn so I can use it with my child,
Matthew, who has complete Agenesis of the Corpus Callosum.

It wasn't too difficult to figure out. Within a fairly
short time after buying it I had my first personalized
story about our family beach trips up and running on
Matthew's iPod Touch for him to watch and listen to.

The story page has touchable arrows on each side of the
page that give the person an opportunity to go back to
view the previous page in the story and listen to it again
or go forward to see and hear the next page.

here's two of the 14 pages I made for Matthew:

Very quickly Matthew learned how to flip through the
pages and tap the picture to make it 'talk'.

He likes it.

And he's already watched "Matthew Goes to the Beach"
several times today.

The first time I recorded a story on Matthew's iPod
Touch, using the external microphone that came with
the iPod, it was very quiet and could barely be heard.
I was disappointed and thought that was the end of that.
But then I gave it another try and held the external
mic VERY close to my mouth while speaking the words
for each page. Worked like a charm and made a big
difference in the sound volume. Plus, I put Matthew's
iPod Touch inside his iMainGo2 speaker case so it
gets an even bigger boost of volume and works great.

Stories2Learn comes preloaded with one social story
that includes two kids playing a game and taking turns.

Many kids who have Agenesis of the Corpus Callosum
learn best through A LOT of repetition and this "app"
allows a person to see and touch the picture over and
over to hear the audio message as many times as they
want and need to hear it out loud--something my own
child did immediately upon trying out his new story.

Stories2Learn has opened up endless possbilities for
me in terms of helping teach Matthew specific skills
that he is working on learning and it gives me the
ability to completely personalize the entire story with
pictures, text on each page and we can record messages
with my voice, dad's voice, a friend's voice or a family
member's voice to turn the story into a meaningful
forwards, backwards, say it again...(and again)...
teachable video-like book that is lots of fun.

I can foresee using Stories2Learn as a tool to help
teach my child independent skills like "using the potty",
"brushing teeth" and.....a whole lot more!!

Thank you very much Look2Learn.com, the creator of
Stories2Learn, for creating a fantastically fun
teaching tool.

I'm excited about it and I can't wait to personalize
more learning stories for Matthew that meet his
specific needs.

I'm also seriously considering the idea of upgrading
to an iPad for Matthew?!?

Stories2Learn is a terrific on-the-go library of
learning fun for use with the iPod Touch, iPhone or iPad.

So what do you think?

Does it spark your interest and creativity for use
with your child or a student to help with social
skills stories, teachable stories, daily schedules
or anything else?

Many kids who have agenesis of the corpus callosum
have challenges with social skills. Receiving
social skills training in school or in the community
from a trained professional and the use of social stories
can be valuable tools to help a person who has ACC
learn and practice social skills.

Video about ACC and Social Skills

NODCC Conference Thoughts

2010-08-10T10:56:00.000-07:00

This year the NODCC held their annual Conference
in Santa Clara, California at the Marriott Hotel
on July 31, 2010 to August 1, 2010.

If you haven't been to a Conference before, it's
always fun and exciting to hear all about the
Conference from other people who attended so that
you can get a better idea for what goes on.

And for those of you who have a baby or toddler with
Agenesis of the Corpus Callosum who have not been
to a Conference who have some fear or apprehension
about what to expect at a first-time Conference I
think you will enjoy getting a glimpse of the Conference
through the eyes of Jessi, the Mom of one-year-old
Samuel, who graciously gave permission for me to share
her viewpoint of the Conference here for you to read.
♥ thank you very much, Jessi ♥

Samuel's Mom wrote:

"We just arrived home from our trip to California,
and what a trip it was! We really had so many
amazing experiences, starting with our time at the
NODCC Conference (National Organization for Disorders
of the Corpus Callosum).

I am not sure what I was expecting going into the
conference, but it was certainly better than whatever
my expectations were, and it was just what I needed.
There were families from all over the world (we met a
nice woman from Iceland and a couple from Australia).
There were children of all ages that had a disorder
of the corpus callosum. Some had complete agenesis
like Samuel, meaning no corpus callosum formed, and
others had partial agenesis or hypoplasia. There were
lectures that focused on educational strategies,
speech and language development, sharing the diagnosis
with your child, social development, current research,
and much more! I really enjoyed discussion groups for
parents, as I came away feeling understood, hopeful,
and more prepared for issues that may come down the
road. Getting to know other families was a big highlight
for me. Talking to other parents with the same issues
and concerns, and also getting suggestions was so
helpful. I really believe we made lasting friendships,
which will be so wonderful for Samuel as he grows and
for us as well.

Coming to this conference made me more aware of how I
had been thinking about Samuel... desperately hoping
that he would reach every milestone "on time" and
basically still be "normal" despite his diagnosis.
Meeting so many people with special needs kids and
their openness and positive attitude, made me realize
that I do Samuel a disservice by comparing to the
"normal". The truth is, his brain is different! I can
say that now without feeling sad or overwhelmed. I need
to be honest with myself and others about his ACC,
because Samuel has his very own timeline for development,
and he has special needs to help him achieve his goals.
He may very well go on to do "normal" things in his life,
but if he does, it won't be without a lot of work and
persistence on his part, and that should never go
unnoticed!

I was told over and over at the conference to never
put limitations on kids with ACC. Push them to succeed!
They can do much more than we think possible. It may
take them longer, but they will get there. At the same
time, understand that there will be things that may be
more difficult for them. When they have worked to their
ability with one thing, move on to something else where
they will have success! I know that is very broad, but
it encouraged me that Samuel will have great victories
in his life (I knew that already, but it was cool to
hear real life success stories and meet adults living
with ACC!).

So my main take-away was really two things, a mix of
realism and hope... first to let go of "normal" by
accepting and acknowledging that Samuel's brain is
functioning differently. Secondly, although that is true,
his brain is amazing and is capable of learning and
growing and re-routing pathways to help him make
connections...so there is truly nothing impossible for
Samuel! Wahoo. :)

I just want to recount a favorite memory of mine from
the weekend. It was Saturday evening and after dinner
there was a dance with a DJ. As soon as the music started,
kids starting pouring onto the dance floor. There were
little ones, some even using walkers or wheelchairs, and
there were teenagers and young adults. Everyone was just
having a blast. I had a flood of happiness watching these
children have the time of their life. I could just imagine
Samuel one day dancing with his conference buddies years
from now. I came into the conference fearing that it would
feel like doom and gloom, and instead I came away so
touched to see other children just having a great time
being kids. I will cherish that memory for always.

I don't have many pictures to show for the conference,
as we were too busy! But here are a few...

Samuel getting really close to standing on his own
(which he later did for 3 whole seconds!)

Samuel's first taste of Ghirardelli ice cream...
don't worry, it was only a taste! :)"

And if you're wondering, like I was, if Samuel
liked his ice cream...here's the video answer.

See more of Jessi's pictures from the
Conference and also some family pictures in
San Francisco after the Conference.

"I came into the conference fearing that it would
feel like doom and gloom, and instead I came away
so touched to see other children just having a great
time being kids."
reprinted with permission The Von Banks

Did you attend the Conference?

National Organization for Disorders of the Corpus Callosum

2010 Conference Schedule
Note: Conference Schedule is found on pages 22-25 at link above. Page may take a few minutes to load.

Video about ACC and Social Skills

2010-08-02T10:34:00.000-07:00

Dr. Lynn K. Paul interviews the boy who has Agenesis
of the Corpus Callosum in the video.

Dr. Lynn Paul is the founding President of the National
Organization for Disorders of the Corpus Callosum
(NODCC). She is also one of the kindest, most caring
people I have met.

At a Conference in 2001 I watched Lynn Paul lead a panel
of kids who have ACC and then a panel of adults who have
ACC in a questions-answers session that was extremely
interesting and very eye-opening.

Not only is Dr. Lynn Paul a highly professional researcher
on the corpus callosum at Caltech, she is also genuinely
and naturally skilled in interacting with people of all
abilites.

The video focuses on the social aspect of Agenesis
of the Corpus Callosum and gives insight from Tony (the
boy in the video) and his dad and stepmom's perspective.

ACC Social Skills & Challenges
This article was written with the help and input from
many parents who have a child with Agenesis of the
Corpus Callosum.

Request a copy of this document

ACC and Moms-To-Be #4 Story

2010-07-30T12:30:00.001-07:00

I received this ACC and Moms-To-Be story from
Carrie and it is truly a privilege to be able to
share it here with you to read.

Thank you very much Carrie for reaching out to
other Moms and Daddies too as you openly share your
very personal ACC story.

ACC in Pregnancy Story

Our older daughter, Azelynn, was born on
April 18, 2003. Her name is derived from a
Hebrew name that means “spared by Jehovah.”
This is an account of our experience.

Prenatal Issues

As a 22-year-old, I became pregnant in late
summer of 2002. My husband and I had been married
for just over a year and we were both employed
full-time and were college graduates. We both
manage chronic health conditions—I have asthma.
He has a chronic health condition, and we consider
ourselves to be intelligent, empowered patients
who do their research and demand to have a say in
our care. My OB/GYN was a doctor who had delivered
me as well! I had no risk factors for complications
and was exceedingly careful both before and during
my pregnancy, taking the recommended prenatal
vitamins, eating well, and avoiding hazardous
environments, lunch meat, microwaves, overly-hot
baths, etc.

Our sonogram at 13 weeks looked great. My OB sent
us for a second sonogram at 24 weeks. Although we
did not want to know the gender, he found it to be
a good time to let Mom and Dad get another peek at
the baby and to let him have another set of measurements.
We thought the ultrasound went great and the tech said
nothing amiss that we noticed. We headed upstairs for
my regular appointment.

My OB was greatly concerned by the measurements of
the ventricles in our baby’s brain, which was a
surprise to us. Apparently the tech was not allowed
to disclose any issues. He referred us to a geneticist,
and we had to wait 2 weeks for the appointment because
he was out of the country. My OB’s best guess, having
not been present at the scan, was hydrocephaly.

The geneticist and his residents spent about three
hours doing sonograms. I also had an amnio done to
rule out genetic complications and so that we could
line up a special-needs pediatrician if needed. We
told them that we did not want to know the gender.

He told us that he believed the baby had Agenesis
of the Corpus Callosum (ACC), but that it would not
be anything debilitating, just something about as
difficult to manage as ADHD. The amnio came back
normal, but they did disclose the gender when they
mailed us the results.

We had a repeat sonogram with the geneticist at 30
weeks and he still felt that ACC was the issue.

Preparations for Birth

Given our baby’s brain complications, we met with
several pediatricians and asked each about three
pages of questions. Some blew off the concern. Others
asked me if I had been taking illegal drugs during
the pregnancy. We finally settled on a pediatrician,
who seemed to have a middle-of-the-road approach
while being personable and cautious. We copied her
on all notes from the geneticist and remained in
contact.

We also met with one of the neonatologists at the
hospital. We were impressed with him, and although
we were not able to go in the NICU, we at least felt
fairly comfortable with the situation if it were an
emergency.

We also took the hospital’s childbirth class. A huge
emphasis was placed on natural, induction- and
epidural-free childbirth. Because I was already
planning on this, it was in line with my wishes and
I learned a lot from the class, as did my husband.

I also attended a breastfeeding class. The lactation
consultant is a terrific cheerleader for moms who feel
insecure trying such a huge new thing. I can say that
she is a huge part of why I eventually succeeded in
breastfeeding my daughter—the accomplishment of which
I am most proud. I did ask her about issues concerning
nursing a newborn with ACC. She thought there might be
some loss of muscle tone and promised to follow up with
me when she was born and do everything she could.

My husband and I both attended her first aid class as
well. We learned a lot and had a good time doing so.
Learning how to help a choking toddler came in handy
for me more than once with my daughter’s oversensitive
gag reflex later on.

Birth Complications

At 34w4d, I left work for my 34-week appointment.
My blood pressure was sky-high, I was spilling
4+ protein, I had 4+-degree swelling, my reflexes
were very clonic, and I was gaining 10-12 pounds
a week in water weight. It seemed that I had
developed preeclampsia. My OB sent me to BSA for
a non-stress test and ordered immediate bedrest
“if they even let you leave the hospital.” They
didn’t.

The nurses freaked out a bit. Upon seeing my
blood pressure of 200/100, they put me in a bed
in a dark room with padded bedrails and forbade
me to get up to go to the bathroom or to watch TV
or to eat. After reiterating that I had driven
myself there and walked in myself, I convinced
them to let me up to go to the restroom and to
have a Subway sandwich for supper. That was my
last meal for about 4 days. They brought nursing
students in regularly to learn what clonic reflexes
were like. I was being pumped full of magnesium
sulfate.

My OB came by and asked if I still preferred to
have a natural delivery, or if I wanted to do a
c-section. He was honest in saying that the
c-section is easier for him, but that the natural
birth would do the best for the baby’s lungs.
Because I was already 34 weeks along, it was too
late to do the steroid shots. I still wanted a
natural unmedicated birth. He was going to contact
the pediatrician to ensure that she was okay with
that.

The OB came in in the morning and began the induction
at 8 or 9AM. My baby had no intention of being evicted
and after reaching the maximum level of Pitocin, they
had to start turning it off and then jacking it back
up again to make contractions happen. He broke my water
upon returning from a funeral. I had one or two mild
contractions that I could actually feel and then they
insisted on internal monitoring and an epidural because
they were afraid that pain would drive my blood pressure
higher. The first epidural did not work. The second did,
somewhat.

At about 8PM, I hit transition and had a wave of nausea
(despite having no food/drink for 24 hours). When I
rolled over out of reflex, the baby’s heart rate crashed
and pandemonium broke loose. I was immediately prepped
for a c-section. The nurses wheeled me down the hall
to the operating room. I was wheeled in yelling “I’M
NOT NUMB! I’M NOT NUMB!” In an effort to get her out,
I was shot full of local anesthetic in addition to a
bolus from the epidural. I could still feel a lot of
pressure and tugging and it was not a good experience.
It took three people to get her out because she was
tiny and was so low. (In hindsight, it’s also her
personality.) I never saw her or heard her. The
tugging stopped. The room was silent. I finally said,
“Is she out?” My husband said, “Yes.” I said, “Is she
breathing?” He said, “I don’t know.” Then she was
gone—whisked out of the room to the NICU.

At that point, I was hurting. The spotty anesthesia
as I was being put back together, the emotional shock
of not knowing if my baby was dead or alive, the lack
of sleep, the lack of food/drink, and the accumulation
of magnesium sulfate made me want to do nothing but
sleep and try to block it all out.

At some point later, I was back in a hospital room,
but I thought it was a different one. My eyes would
not focus. I had a serious sense of vertigo and had
difficulty staying awake. I woke up long enough to
ask if she was alive and my husband told me yes.

My Recovery

The pain button on the epidural pump was my best
friend for the next few days. Once it was removed,
the Pain Management team gave me a pill that I’m
pretty sure was hydrocodone. Again, despite my
asking about being able to be alert and ambulatory,
my eyes would cross, I would fall asleep in
mid-sentence, and I could not focus—much less
attempt to walk.

The NICU

My husband went to see Azelynn in the NICU after
my surgery was over. She was in a frog’s-nest on
an open bed on CPAP and was stabilized. He was
able to record video of her briefly that he played
for me when I briefly awoke. That is how I first
saw my child—on a 3-inch camcorder screen.

The grandparents were allowed to go in to see her
that night as well. My mom went again first thing
the next morning and stayed there for about an hour.
She was encouraged to touch her firmly and sing to
her.

My wonderful nurse, took me to see her the next day.
I rode in a wheelchair and still could not make my
eyes focus. I recall noticing that she had my toes
and fingers and a lot of hair. I could not scrub in
and therefore did not touch her.

The next day, my husband, wheeled me down to see her
again. I was still so messed up from the medicines
that I was reasonably sure that they took me to a
different baby, but decided not to say anything.
I still could not make my eyes focus and had a hard
time paying attention.

The next day, I got away from pain medication and
switched to Advil. I wheeled myself to the NICU and
I held her for the first time.

A lactation nurse, came to see me in my room and
helped me get started pumping. I did that every
3 hours for the next 6 weeks.

I gave her her first 5cc via bottle, which killed
me because I was so committed to nursing.

The first time she nursed was an experience. The
lactation nurse on duty came to the NICU and helped
me get her latched on and things went amazingly well.
When Azelynn got tired, we stopped.

Due to her prenatal diagnosis of ACC, they did an
ultrasound of her head and found that to their
surprise, she did have a corpus callosum after all.
This left them puzzled about the reason for the
large ventricles.

They took Azelynn for an MRI one morning. I would
have liked for one of us to go with her, but we were
not given notice and found out after it was already
over. Along with our family, we were all awaiting
news of the MRI results. Family called daily looking
for an update.

The neonatologist came into our hospital room with
her nurse practitioner. The neonatologist waltzed
up to my hospital bed, where I was sitting and my
husband was in the chair. She immediately said,
“The news is not good.” I will never forget that
phrasing. She proceeded to tell us that our baby
had lissencephaly and would never walk, talk,
sit up, or even roll over. She said that Azelynn
would suffer debilitating seizures and that an
EEG was already scheduled and would be read by
doctors in Dallas to see how severe the seizures
were already. We questioned the fact that she was
making periodic eye contact and even somewhat
smiling at times (we have photos). We were told
that that was due to overactive muscles. We
questioned the fact that we had not seen any
seizure activity and we were told that it was a
matter of time. She told us that her nurse
practitioner would print some information off
the Internet for us. My husband and I cried and
prayed together and decided to move forward
regardless and do the best we could. I had to
keep up on pumping and we tried to spend as
much time as we were allowed to with her. The
nurse practitioner returned later and gave my
husband a packet of information so that we
could read up on the condition.

Later, he looked at the packet of information.
It was printed off of the Internet. The first
thing on the page said, “If your child has just
been diagnosed with lissencephaly, this is NOT
for you.” It is for parents who have had time
to cope and understand the diagnosis who now
want more information. He read the information
and told me he did not want me looking at it in
my current state. He took it home.

With the news of lissencephaly, the pediatrician
who we had YET to see dropped us like a hot potato,
but did not tell us. We tried to make contact and
couldn’t get a call back. We eventually discovered
that a special-needs doctor was now our pediatrician
and was in fact taking over the neonatology side for
the most part as well. We were puzzled, as we had
never met him, or had any idea why he was now our
doctor. He and his nurse practitioner came to my
room to talk to us. They told us that they didn’t
care what the testing says—the important thing is
to focus on the baby and what she can do and what
issues she’s having. He also told us that the
original pediatrician had transferred us over to
him because he was a special-needs pediatrician.
We decided that we were comfortable with his
approach and that we liked his NP as well. One of
them continued to check in with us once or twice
a day.

Again, we were not told when the EEG was taking
place. We found out after the fact. The results
were normal—no seizure activity.

We had been told that Azelynn would be in the NICU
until about her due date (May 25, 2003). However,
on the sixth day, she began regaining weight and
was “nippling” okay (though her oxygen sats did
drop a bit while eating).

Our new pediatrician wanted us out of the hospital,
where Azelynn would no longer have to be a baby in
a box and where she could be cared for by her
parents. We agreed.

On the seventh day, Azelynn roomed in with me in my
“hotel” room. I had serious trouble getting her to
latch on to nurse and we ended up using bottles
quite a bit.

I am immensely thankful for the lactation staff,
who not only helped me while in the hospital, but
also fielded tons of phone calls from me and allowed
me to come in for weight checks to see how much she
was eating. However, I do wish that nipple shields
had been discussed more thoroughly with me. I did
not realize the issues that they would cause with
supply, and I had no idea how to get her to quit
needing a shield to be able to nurse.

I exclusively pumped for the first 6 weeks because
latching was just not working and I could not handle
an additional sense of failure; I had to take Reglan
because my supply totally disappeared the day after
we came home from the hospital. At 6 weeks, she latched
on and refused to take another bottle after that. Ever.
She was 4 ½ months old before I was able to get her
latching and nursing without the shield, which cut
our nursing sessions down from a solid hour each time
to about 20 minutes. She was 8 months old before she
was really latching correctly, which meant that I
endured multiple rounds of blisters, cracks, thrush,
and mastitis. At 8 months, everything finally started
coming together, both of us knew what we were doing,
and it finally worked like things should have to begin
with.

At 5 months, we repeated Azelynn’s MRI. There was
“no sign of lissencephaly.” We will never know if
the first MRI was misread or what exactly happened;
we choose to view it as a miracle and give the credit
to God. The report also described “diffuse thinning”
of her corpus callosum and still-enlarged ventricles.
She has never had a seizure.

Azelynn began rolling over consistently at 5 ½ and
7 months. She sat up at 7 ½ months. She began crawling
backwards at 10 ½ months and forward right after her
birthday. She got her first tooth at 16 months. She
walked at 18 months. She knew about 40 signs by age 2
and began stringing spoken words together at about
age 3. She potty-trained at 4 ½. She has hit every
milestone late, but she has hit them.

Azelynn is now 6 ½ years old. We began occupational
therapy in May 2009 for ADHD-like sensory-seeking
issues, fine motor delays, and visual processing
delays. We recently repeated her MRI. She has
hypoplasia of the corpus callosum (“extremely thin”)
and her ventricles are still enlarged. In hindsight,
many of the issues that we had during her infancy
and preschool years are related to her very thin
corpus callosum.

I am immensely grateful for all that I have learned
from this child. You will not find anyone who loves
her more deeply or fiercely than I do.

We are homeschooling for the second year now. She
reads pretty well. Math has been a challenge, but
she’s doing better after a recent breakthrough.
She loves books, Bible stories, music, toy cars,
VeggieTales, cheese, butterflies, ice cream, and
Boston Cream Pie yogurt. Most of all, she likes
to MOVE. She is never still, whether it’s spinning
in the tire swing, jumping on the trampoline, or
cruising the house on roller skates. She talks
non-stop and sings well. She is learning to play
the piano and has a love for American history.
She is deeply sensitive and loves enthusiastically.

We are blessed to have her. When I think back to
that time on the table when I did not know if she
was dead or alive, it takes my breath away. When
I think of the vegetative child that the neonatologist
predicted, it makes me smile to realize what we were
“supposed” to have versus what we actually have.
We do not know what the future holds for her, but
we do know that it will be enthusiastic, it will
be spirited, it will be creative, and it will be
something that someone with a normal energy level
could never accomplish. God has BIG plans for her.

There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own story?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.