Learning Tools & Ideas #4

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

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.


An UPDATE on Kaycee:

(written by Michelle, Kaycee's Mommy, on 5-13-2013)

"I wanted to send an update to let anyone know that has read our story how little Miss Kaycee is doing.

Basically, there has not been one single concern. She is 19 months old, has exceeded every milestone and she is the most chatty little thing you have ever heard, and keeps her big brother in line.

If I didn't know there was anything “missing” in Kaycee’s brain, I wouldn’t know.

I know that we are truly blessed to be on this end of the spectrum, as some children with the exact same diagnoses as Kaycee are not as fortunate.

By posting this, I am in absolutely no way trying to gloat at how truly blessed we feel, I am simply trying to offer one person a glimmer of hope in what may be their darkest moment. For me personally, finding out everything while pregnant and going through what we did, it was this blog that gave me hope and kept me on the positive side.

I hope this can help just one person!!!

Michelle

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 (Sandie):
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?

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

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

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

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!

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