Showing posts with label Adults with ACC. Show all posts
Showing posts with label Adults with ACC. Show all posts

Saturday, March 9, 2013

Meet Bradley - An Adult with ACC


Last year I received an e-mail from Sarah in Australia who informed me that she would like to share her adult brother, Bradley's, ACC story. I was very excited to receive a second e-mail from Sarah in February (telling her brother's story). With her brother's permission (and her help writing) I am very honored and so grateful to be able to share Bradley's ACC Story here with you.


Updated on March 31, 2013


~~Written by Bradley's Sister~~

Bradley and his sister, Sarah, on his 21st birthday


Bradley turned 21 on 29th September 2012. Brad's ACC is quite severe compared to some of the stories on the blog.

I'd like to hear from some other families who care for a person with this type of severity.

At the time of Brad's diagnosis there was 4 known cases in Australia. A lot of people confuse Brad's ACC with cerebral palsy. His speech is impaired and physically his feet are tense and will not flex. He wears orthotics with shoes when walking and also canadian sticks -- (below)


but cannot stand up straight. He bends over and his knees still bend in. He has had two operations to try to straighten his legs.

He sometimes has accidents with wetting the bed. This has improved greatly with age. But sometimes needs reminding/asking.

Overall Brad is a very happy young adult. He has a great memory. He is an attention seeker and can sometimes get angry if things don't go his own way.


QUESTIONS & ANSWERS:


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

About 6 months, Brad's reactions were slow. Brad received services from a physio, speech and occupational therapist prior to school.

What did you struggle with in school?

Attention span and concentration.

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

Enjoyed the library and borrowing books.

Did you struggle with social skills in school?

Not at all - loves attention and willing to talk to anyone even though his speech is impaired.

Did you make friends easily in school?

Yes he has many friends from his special needs unit at school.

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

Now that Brad has finished school he stays in touch with friends from school and made new friends at his day program.

Did you attend a mainstream classroom?

They had a separate classroom but integrated with other kids during lunch breaks.

Can you ride a bike and drive a car?

Brad could ride a modified bike during primary school Age 5-9. Brad cannot drive. Brad's first operation to straighten his legs was at 13 and the next operation was at 15. After his second operation the pressure on his knees was too much and therefore resulted in Brad spending 95% of time in his wheelchair.

Did you attend college? Did you get a degree?

No and No.

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

No. Brad attends a program 4 days a week and does hydro therapy once a *fortnight. *[every two weeks]

Are you married? Single?

Brad is single but has a close girl friend Nicole that he visits often.

Do you have children?

No.

How does ACC affect you today as an adult?

Effects his life everyday. He can feed himself and transfer from his wheelchair into a car or onto a toilet seat. But he cannot shower himself, brush his own teeth, dress himself, cook for himself, etc.

What do you enjoy doing the most in life...

Playing bowling on the Wii sports, Playing with his Ipad. Cooking books.

I asked Sarah a couple of questions in regard to a few of her replies above:

1. You wrote that Brad really likes cooking books. I'm curious if he likes to read them or just look at the photos in the cooking books or what intrigues him?

Brad loves looking at the photos and he wants people to help him make the recipes. He can't read but recently he has been watching YouTube videos and asking people to write down the recipes to help him cook.

2. You mentioned that Brad is very social and loves to interact with people but has difficulty because his speech is impaired. I am wondering if Brad's main form of communication is verbal or if he possibly uses another method of communication (in addition to his verbal speech), if I may ask? And, if so, what type of other speech/communication method/device does he use to help him communicate with friends and other people?

No he only uses speech but after spending some time with him you can generally start to understand him. Sometimes you have to guess other words that sound like it and he will let you know if it is correct. He uses an ipad and can usually show photos of his latest outings so people can understand where he's been and what he's talking about.

What are you passionate about?

His dog (toy poodle) Bailey, Enjoying food with family and visiting friends, taking photos and swimming.

Bradley and his dog, Bailey

Do you have a specific goal or dream that you are passionate about and would like to achieve?

To go overseas to Hawaii.




Bradley, 21 years old (written by his sister, Sarah)
February 19, 2013
Australia


Sarah expressed an interest in hearing from other families who care for a grown child with ACC who have similarities with her brother, Bradley. 

If you would like to contact Sarah, you can leave a comment here for her. Or you are welcome to email Sarah.  


In addition, if you would like to post a message for Bradley in regard to his ACC Story,  please leave a comment for Bradley

They would both enjoy 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

Thursday, December 20, 2012

ACC - "The Mystery of the Missed Connection" article - January-February 2013


Many months ago, I was contacted by a writer, Daisy Yuhas, from Scientific American Mind magazine who was inquiring about connecting with an adult who has Agenesis of the Corpus Callosum, who would be interested in being interviewed by her for an article about ACC in their magazine. After carefully checking her credentials and exploring their magazine further, I sent out Daisy's request to the ACC Adults yahoo e-mail support group and was so excited to learn that there was an interest from not only one adult who has ACC (but from SEVERAL adults) who wanted to be interviewed for the article.

In our correspondence between then and now, it was revealed that Daisy hoped to be able to not only write an article about one adult, who has Agenesis of the Corpus Callosum, in the magazine but to also include a follow-up to the article where she could include several more stories about other adults with ACC (who she interviewed).

This morning I received an e-mail from Daisy Yuhas who informed me that the ACC article is finished and it will appear in the January/February 2013 issue of Scientific American Mind. The additional stories of adults with ACC was published today, December 20, 2012, and appears in their Scientific American Blog.

I am including Daisy's e-mail below, so you can read it for yourself:

"Dear Sandie,

I hope that you're doing well! I just wanted to share that the agenesis of the corpus callosum feature will appear in the January-February 2013 issue of Scientific American Mind (you can find a preview with a paragraph or two online—the issue will hit newsstands in the new year). In addition, Scienitfic American has run a blog post that shares a few additional stories. I realize I can't possibly do justice to the full range of experiences shared— but I want to thank you again for your help in putting me in touch with others who could share their stories. I truly believe that readers will find strength in reading these experiences.

All the best and very happy holidays,

-Daisy"

This is incredibly exciting news and, thanks to each one of the adults who have ACC who shared their stories (and who revealed personal insights about living life with Agenesis of the Corpus Callosum), as well as the people at Scientific American Mind, there is now an even greater awareness about ACC, which brings us one step further in helping other adults and children in the world who have this congenital brain anomaly.

I know that (as a mom myself of a child with Agenesis of the Corpus Callosum) I definitely plan to buy a copy of the January/February 2013 Scientific American Mind magazine for The Mystery of the Missed Connection article.

Monday, May 7, 2012

ACC ADULTS - e-mail support group



The ACC Adults e-mail group is now available to any Adult with ACC who might have an interest and want to join.

Are you an adult with Agenesis of the Corpus Callosum?

Would you like to connect with other adults who have ACC and share in discussions and topics that pertain to living life as an adult with ACC?

I invite you to join the ACC Adults e-mail group.

From time-to-time I am contacted (through this Agenesis Corpus Callosum Blog) by adults who have ACC who are looking to connect and have contact with other adults who have ACC, who can relate to them.

I usually suggest the ACC Listserv e-mail support group, which is for everyone who has an interest in ACC--(parents of a child with ACC, adults with ACC, caregivers, grandparents, family members, professionals).

I also suggest the National Organization for Disorders of the Corpus Callosum (NODCC) because they offer an "Adults with DCC Program" (Note: you must join the NODCC to access their adult program).

Sometimes though, there are some adults who seem to be looking for a location where they can easily find and connect with other adults who have ACC to share their thoughts and feelings about living life as an adult who has ACC. I wanted to address that issue and try to create an avenue. So that is why I decided to create the ACC Adults e-mail group.  This group was created to help you find and connect with other Adults who have ACC (or a corpus callosum disorder) for the purposes of networking, discussions and support.

ACC-Adults began on May 1, 2012 and I'm excited to tell you that so far there are several new members, and it is being filled with lots of new messages.

Hopefully the group will continue to grow and will become an active and helpful place for private discussions and support between adults who have Agenesis of the Corpus Callosum.

All adults with ACC are welcome to
join the ACC Adults group and read what the other adults who have ACC are posting in the group. Then, you can choose to reply to the messages, or you can post a new message, regarding a topic of your choice, and have an opportunity to interact with other adults who have ACC.

There is an "Introductions" message in the ACC-Adults group so you can reply, tell a little bit about yourself (for the other adults with ACC members to read), and you can also post a link to your blog and/or your Facebook page, if you like.

In order to stop spammers from joining the ACC Adults group and posting spam/junk mail messages, there is an approval for new ACC Adult members who join.

The ACC Adults is a private group. When you join, and are a member of ACC Adults, your discussions are not viewable to the public.

Only members of the ACC-Adults group will be able to view and respond to the messages.

I believe that it is extremely important to bring about awareness of other ACC support group options that are available for adults who have ACC because people differ in terms of the type of ACC group that best fits their particular needs and their comfort level.

It can also be nice to have a few options to choose from. Plus, having a variety of support group choices can aid in helping you make additional contacts with more adults who have ACC and offers even more opportunities for networking, socializing and support.


ACC SUPPORT GROUPS AVAILABLE:   


NODCC - "Adults with DCC Program"

The National Organization for Disorders of the Corpus Callosum states: "The goal of this program is facilitating social connections and social support between adults who have DCC." If you would like to participate in the Adults with DCC Discussion Board, you need to fill out their application and you are required to be a member of the NODCC. This Program is a private discussion board that is only for approved "Adults with DCC"

ACC-Listserv e-mail support group

The ACC Listserv is the largest and most active ACC group with hundreds of people from all around the world who have an interest in ACC (or a corpus callosum disorder). They discuss a wide variety of topics dealing with ACC. The group consists of many parents who have a child with ACC, adults who have ACC, grandparents, family members, and others. You can post a note with your questions, concerns, or anything that you would like to discuss about ACC and you are sure to receive input, suggestions, advice and help. Everyone is welcome to join. Adults with ACC who contribute information in this group offer so much hope to so many parents who have a child with ACC.

Please be advised that I was recently informed by Sarah M., an adult who has ACC, that there are indeed some other Adults with ACC groups. I will share with you the information she provided...

Sarah wrote:

"There are many groups for Adults with ACC, we have a Yahoo Chat every month or so (can be found on facebook, "ACC WEB CHAT", for adults with ACC only. Also there is a "Young Adults and Adults with a DCC" group as well. Both groups are very active, and run by adults with a DCC. There is also a program through the NODCC for Adults with a DCC. Adults with a DCC (ACC) are also active on the listserv, as well as the other facebook groups. If anyone has any questions or if an adult with a DCC has questions about getting involved feel free to find me on facebook "Sarah R. Mellnik" or email me back here at"
smellnik99@aol.com

I asked Sarah for direct links to the Adults with ACC Facebook groups she mentioned (because I don't use Facebook - but wanted to provide the links here for easy access to anyone who might be interested).

Sarah replied:

"The groups can be found by typing in "ACC WEB CHAT" or "Young Adults and Adults with DCC". I dont have the links to them. We are always excited to welcome new adults with a DCC."

UPDATE (new info)


Sarah wrote, (after this post was published):

"I found out how to get the links to other groups with a DCC. So here they are,

Young Adults and Adults with DCC:
https://www.facebook.com/groups/138724776192081/

ACC Web Chat (Facebook group but we chat in yahoo conference chat): http://www.facebook.com/groups/243883758737/

...if you don't have facebook and would still like to check out the chat on yahoo just let me know and I'll get ya the info."

Sarah also wrote:

"We connect at the conferences and then throughout the year we connect via facebook, and webchats. Facebook is probably the best way for any new adult with a DCC to connect with the rest of us."

Hopefully, these different ACC Adult support groups mentioned will bring about greater awareness of the options available, and will offer Adults who have Agenesis of the Corpus Callosum the opportunity to explore one or more avenues to find other Adults who have ACC and connect with each other in meaningful, positive ways.


Join ACC Adults e-mail group (for Adults who have ACC)

Wednesday, April 25, 2012

Meet Joe - An Adult with ACC


I am writing on behalf of my son Joe who is 19 years old now. The responses are a collaboration of our combined responses.

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

I found out that he had complete ACC at the time of birth. I had complications, but they were unidentifiable until he was actually born, at which time they did a scan of his head. It was then confirmed. I did not actually let Joe know until he was about 15 years old. At the time I was told, there was not much information available regarding ACC. I was told by doctors that there were cases with partial ACC where the child experienced developmental delays and/or seizures. We were at doctors for the first three years testing and looking out for the worst. Thankfully, there was nothing remarkable happening. Nothing that needed immediate medical attention.

What did you struggle with in school?

Joe had problems that were evident in preschool. He was extremely attached to family and expressed no desire to go to school. Once he was enrolled, it was a teacher in first grade that suggested I take him to a public school where there would be more resources to help with his education (he was in a private school). Once I switched him (mid-year), he was tested, but they could not justify additional help. It was not until we moved to a different school district (in 3rd grade), that his teacher identified A.D.D. Joe did not have the hyperactivity that is usually associated with A.D.D, but he was very disorganized. This lasted throughout all of grade school, where turning in schoolwork was the biggest challenge. Once he got to Jr. High, he was placed in an "emotional disorder" class. That was his first opportunity to excel a bit more. Once he went on to H.S. he was also placed into an "emotional disorder" class that helped throughout all four years. Although the schools knew of his ACC, that was never taken into consideration. All help was really based partly on his A.D.D., and associated struggles.               

What did you enjoy most about school?

There was nothing really enjoyable about grade school. He pretty much hated the fact that the teachers were unable to assist him, or understand what he was feeling. In his words, they made him feel as if he were a "stupid, slow kid". The other children bullied him constantly. The better years were in Jr, and H.S. where the teachers were more understanding and motivating. He started to read books, and found interests in reading. He also enjoyed some math.

Did you struggle with social skills in school?

Yes, again, there was nothing enjoyable related to grade school. Socially, even Jr. High was a little tough. It was not until H.S. with a whole new crowd that he was able to make some new friends. Not too many, but due to the fact that Joe is grounded, and that the confidence he has with his family has somewhat transferred, he did better and has managed to keep some friends. Joe also attended church groups, and trips (with the same group of children since 3rd grade), but was not very outgoing. The Pastors and others at the church were instrumental in helping him get out of his shell during the trips. He had no problem bonding with older people, and again with older family members.

Do you struggle today with social skills as an adult?

Joe is not very outgoing. With family and close friends, he is fun and outgoing, but not much past that. He has cared much for grandparents since a young age and was always a favorite for that. He is very comprehending and warm at heart, almost like an old soul, but again, not too much with people his own age.

Did you attend a mainstream classroom?

This was pretty much explained in "school struggles".

Did you receive Special Ed resource help?

To a certain extent, and again, it was most in relation to the A.D.D. Joe took medication from 3rd grade through the end of Freshman year for A.D.D. He also took some anti-anxiety meds for a couple of years, but my feeling is that is was mostly due to the fact that he was having such a difficult time socially. He also had to see a Psychiatrist to dispense the medication, but as he grew older and started coping with the social issues (end of Jr. High and HS), we found no need to continue.

Can you ride a bike or drive a car?

Joe had an extremely difficult time learning to ride a bike. He first could not do it alltogether, but then after he learned, he could not start off. He finally got it at about 15 years old, when he wanted to go out with friends and he felt pressured to learn. As for driving a car, the A.D.D and obsession with driving video games helped out much there. Joe learned how to safely drive a car at 16. He got his license at 17 and has been an excellent driver since.

Did you attend college? Did you get a degree?

Joe was told that he would be able to attend college, but only if he were to just focus on one, maybe two courses per period. Towards the middle of Sr. Year, Joe approached me with the thought of joining the military since he read much on armory (books). At first I was hesitant, but he convinced me. I agreed to him joining, but I had a preference as to the area, or section. Joe was told he had to lose about 40 lbs to make weight and study for the ASVAB (Armed Services Vocational Aptitude Battery). It has been a long struggle, but Joe lost all the weight and studied. However, I think the largest obstacle is fear of being on his own. I would not necessarily say that it is fear of going, but more of not being around family.

Now...

I noticed that there is so much now on the internet related to ACC that was not there before. I wish there were more related to adults but some of these stories on here have still given some insight. The main difference is that Joe is otherwise a very healthy individual. His eyesight is better than 20/20 and he loves to run, and weight lift now. He still loves reading on weaponry and volunteers (with adults) at the church service weekly.

We wonder if/what there is anything else to face, or if there are cases that may be more similar to his. He is still very shy with people he does not already know, but working at becoming more outgoing.

Vilma M
Illinois


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

Like Joe's mother wrote earlier, I also "wish there were more [information] related to adults" [who have ACC].

It is always very interesting and helpful to read more about adults who have agenesis of the corpus callosum. Their unique input and inside perspective is invaluable.

I am so happy that Joe's mother contacted me and expressed their two-fold desire to tell Joe's Story. 

Joe's mother, Vilma, expressed an interest in hearing from other families who have a grown adult son or daughter with ACC who have similarities with her son, Joe. 

If you would like to contact Vilma, please leave a comment here for her. 

In addition, if you would like to post a note for Joe in regard to his ACC Story, please leave a comment for Joe. 

I know that they would enjoy 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

Thursday, June 16, 2011

Meet Kelley - An Adult with ACC


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

Monday, May 2, 2011

Meet Abbie - An Adult with ACC


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

Tuesday, December 21, 2010

Meet Vance - An Adult with ACC




"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

Monday, December 13, 2010

Questions and Answers




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.

Wednesday, October 13, 2010

Sara's Story - An Adult with ACC




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.

Wednesday, May 19, 2010

Meet Patty - An Adult with ACC


Patty & her daughter

The process of telling Patty's story came about
through a series of e-mail conversations that
took some twists and turns along the way but
ultimately wound up revealing her character,
her personality, her sense of humor and helped to
give a better understanding of who Patty is.

In much the same way that Patty's story unfolded
before my own eyes, through a series of questions
and answers, is how you will see her story revealed.

Patty is an adult who has Agenesis of the Corpus
Callosum. But she is also a terrific lady, a
dedicated and passionate teacher, a loving mother
and wife, a Sunday school teacher and so much more.

I know I certainly enjoyed interacting with Patty
and getting to know her better and I hope that you
will too.

It is a privilege and pleasure to introduce Patty.
Here is Patty's story as it unfolded quite
unexpectedly and yet quite naturally in a style
that seemed to fit Patty perfectly.

I received an unexpected e-mail from Patty for the
first time in August of 2009:


*Note: ACC-C = complete Agenesis of the Corpus Callosum


"I am a 34 yr old married mom that has ACC-C.
It was discovered about two years ago. The
neurologist was not much help to me. I have
enlarged ventricles in my brain which I think
are a link to having ACC. I am not sure. I have
educated myself via the websites I have browsed.
My daughter has not been evaluated for any ACC
for herself. Yet she has issues that some kids
have that have ACC. Especially the social aspect
of school and crowds. I am really tired so I am
giong to finish this now. Good Night. Patty"

Many months passed with no further contact.

In May of this year I posted another adult's ACC
story on this blog and then invited any other
adults who have ACC to share their story.

On May 4, 2010 I received a second e-mail
from Patty:


*Note: I have interjected my questions/her answers
within the content of Patty's original e-mail to
help the conversation stay organized and flow more
easily.


"I think I have told you my story. I did not
find out I had ACC until after a car wreck. The
difference is that I was about 31 or 32 year old
before I found out that I have ACC-C. Many things
that don't make sense to me I chalk up to ACC-C.
Even around here I have been researching things
myself since I have been left in the lurch medically.

you said:


"Many things that don't make sense to me I chalk
up to ACC-C."

Can you explain this more and give examples?


"My thyroid hormone imbalances are something I
believe are not accurately measured when my brain
throws a wrong signal to my thyroid. I firmly
believe that my coordination as a child had a lot
to do with having ACC-C. I walked within the normal
range of time, and talked within the normal range
of time. I grew up with 6 brothers and 3 sisters,
so I think that I had some natural OT [occupational
therapy], PT [physical therapy] and ST [speech therapy]
built into my daily routine. (One of my brothers ,
child # 3, has some learning delays because of
having the cord wrapped around his neck at birth
(blue baby).) So, I think that by the time I came
around, being the youngest of the family, my siblings
were going to make sure I was going to be “normal.”
I did not learn how to swim or ride my bike at the
average age. The coordination of some sports
activities were very tough for me to conquer. I
learned how to do it a year or two past the normal
age kids. I was very clumsy as a kid with a lack
of coordination.

I had a huge head from birth until my body caught
up to it. It was not an ugly head but a large head.
There are pictures of me between growth spurts that
I look at now and think “wow, now that is a big melon.”

back to Patty's original e-mail:


"I am a state certified school teacher for WI.
Currently, I teach 4K ( the little guys). I enjoy
it very much. I have to admit that I think this is
the best age for me since I have discovered some new
limitations or rediscovered limitations I used to have
that are present again.

What is 4K (the little guys)? Is that Kindergarten
or 4 year olds in preschool?


"4K is a program was originally designed for
children who struggle with basics, (alphabet,
counting, colors, numbers, and SOCIAL SKILLS) to
have a jump start before kindergarten. It is what
kindergarten used to be 30+ years ago. What I did
as kindergarten student is what I teach my students
minus rest time."

back to Patty's original e-mail:


"It is amazing how when you are diagnosed with
something like ACC-C, a lot of your developmental
years can make more sense now in restropsect. I did
not do well in Math and Science, anything that dealt
with memorizing facts with numbers is not on my favs
list. I did enjoy band and choir class in middle
school and high school."

Since memorizing facts and numbers is difficult for
you, was/is there anything that you do to help you
memorize something more easily?

Can you list specific things that help you memorize?


"I don’t really have much of a short term memory most
times. I have to write down a lot of things in order
to remember dates, times, events, etc. If its not
written down somewhere, consider it not having a chance
to be remembered for long, unless it’s a randomly odd
placed bit of info that has stuck in my brain. I have
to be a creature of habit or I won’t remember where
some important papers or things are kept. If I don’t
tell myself “ I am putting such and such IMPORTANT
paper on top of the refrigerator,” then I may not
recall where I put it. Ie) My mom bought a Younkers
ticket for shopping last school year in November. I
knew she paid for it. I knew I had it. I did not make
a verbal statement to myself where I put it. I did
not find it until the following summer, when I was
searching for something else. It’s pretty sad but
that is one thing I do.

I read it once, read it again, and sometimes read
it a third time before information sinks in unless
I take notes on what I am reading. If I takes notes
my brain see it as a picture, then I can recall it
much faster. I see snapshot pictures of things or
notes in my head and I can recall it better than
just hearing it or reading it once."

back to Patty's original e-mail:


"I wish I could write more but time is ticking
away and I need to finish filling out some
kindergarten screening reports. Patty"

ADDITIONAL QUESTIONS AND PATTY'S ANSWERS:

How did the doctors tell you that you have ACC
when you were diagnosed?


"I was diagnosed with ACC-C after an “abnormal”
EEG(’07), led to an immediate MRI (’07) . A
doctor saw it in ‘03 after a CT scan but chalked
it up to “nothing abnormal,” “nothing that can
be fixed, looks like it was inborn.”

Did the doctor in 2003, who saw that you were
missing your corpus callosum on your CT scan,
give you a specific diagnosis of ACC and then
simply dismiss it as "nothing abnormal"?


"No specific diagnosis, mumbled words with a
nothing abnormal ….. BULL!"

Did the EEG reveal seizure activity and what
kind of "abnormal" activity was revealed on
your EEG if you know?


"NO seizures…. (does a happy dance!) Abnormal was
the gaps due to the ACC from what they had told me.
Again sometimes looking through mud is clearer than
getting straight answers from doctors who are
clueless on ACC-C."

Did the doctors explain ACC to you?


"The neurologist did not know what to say besides
saying it was a Complete Agenesis of the Corpus
Callosum. My mom and I asked him several questions
but he had no experience with patients with this
diagnosis. He explained what he saw on the MRI images.
I had “texas long horn” ventricles in my head. It
was a little concerning to him because one end was
sooooo oversize while the other end went to a rounded
point. (hence the jargon Texas long horn). My optic
nerves showed damage but the damage did not lead
back past the optic region much. Since there was
no corpus callosum, the doctor was impressed to
see the parts of the brain that show without the
c.c. [corpus callosum] there. There was nothing
that he suggested as a treatment. “You seem to be
doing good otherwise neurologically. So I hope you
have a good life.” This was received to me as to say
“good luck, don’t let the door hit ya where the
good Lord split ya.” GRRR! Thanks!"

I asked Patty several questions in an attempt
to piece together why she needed to have an EEG
in 2007 and a CT scan in 2003.


Why did you have an EEG in 2007?

Was the EEG ordered after your car accident?

Were you ever referred to see an ophthalmologist
due to the optic nerve damage that was revealed
on the MRI in 2007?

Why did you have a CT scan in 2003?


"Clarification:
"A doctor saw it in ‘03 after a CT scan but chalked
it up to “nothing abnormal,” “nothing that can be
fixed, looks like it was inborn.”" I was pregnant
with my daughter and had fallen down some steps and
bumped my head I think (can’t recall all details of
the day) The CT scan showed the ACC-C back then. I am
sure of it. But whatever doctor who reviewed my results
saw mine and concluded “ehh no biggie.“ So he literally
mumbled something about something being inborn but not
to worry because everything else looked fine. Can we
say drop kick the doctor and then say… “ehh he’ll be
fine once he catches up to Mars….“

OH YEAH! CT scan in ‘07, I was hit T bone style in an
intersection in the city near here. I was given a CT
scan then since I told me neck hurt. They said the
results of the CT scan was nothing alarming…..
(DUH! They saw the ACC-C, but nothing alarming)
BY THE WAY since this accident I have had the most
issues with brain related functions, thyroid, memory,
moods, etc.
I was having a routine eye exam with
an Opthamologist suggested by my regular family med
doctor because I was feeling like I was encountering
some optical migraines mixed with hypoglycemic episodes…..
(Talk about the wrong type of medical cocktail NOT to
have when driving…… I plunked my car in the ditch on
its side, as gracefully as a Buick Lesabre can tip
that is….. Meanwhile I am saying JESUS OHHH JESUS! )

So the ophthalmologist did his normal exam. I flunked
the field of vision test once and retested (guessing
on about 25% of flashes)passing the second or third
time. Also he discovered there was optic nerve damage
in each eye. I want to say my left was worse than my
right… He was a bit concerned because I was in my early
30s. So that optho ordered an MRI and BINGO…. WE HAVE
A WINNER….. YOU HAVE WON THE PRIZE OF…… oh my lands…
what is this? What? Agenesis of the corpus callosum….
Not much said to me EVEN THEN! “Let’s watch your optic
nerve damage and use this as a baseline.“ says the
Opthalmalagist.

Do you have a specific diagnosis involving your
optic nerves?


"N o diagnosis but the picture of my optic nerves
are forever as a picture in my brain seared there,
with the cupping and the gaps,, oh yeah! I see it!"

"The ophthalmologist saw the nerve damage but the
MRI showed it did not extend into the brain at a
dangerous point. He was “not concerned”."

"*******Since all this my awareness has been heightened
by my own research. If you don’t look out for yourself
who will? Doctors… cha… right… anyways

New doctors ordered new tests when I switched clinics
after still having hypoglycemic issues….. So the new
doctor orders an EEG to make sure I am not having
seizures and rule in that it is borderline hypoglycemic
so keep eating routinely…..WHAMO….. ALERT! ALERT !
After the EEG “PLEASE COME IN TOMORROW FOR AN MRI.”
why I ask “all it says was there is abnormal readings
on the results. Just please come in on a Saturday for
an MRI.” man that tracer stuff gets you cold …brrrr!
A few days later, I go in for my “results” of the MRI
with my mom,. Since my mom knows more developmental
questions than I do, I take her for answers if they
ask me any of those questions. Which explains the :
I was diagnosed with ACC-C after an “abnormal” EEG(’07),
led to an immediate MRI (’07) ."

you wrote:


"man that tracer stuff gets you cold...brrr!"

Can you please explain what you mean?


"At one point during the MRI they took me out of
the MRI tube and injected some "contrast" fluid
into a vein in my arm. IT made my hand very cold
and then the cold feeling ran up my arm. The
tracer helps to see the flow of fluid moving from
point A to point B. It was a small amount of
contrast but it left a metallic taste in my mouth
for a little bit of time."

Did you find out most of the information you know
about ACC from your own research on the internet
and from other people who have ACC or parents who
have a child with ACC?


"I found out most of my information by looking up
ACC on my own through research on the internet.
I found MRI images that looked identical to mine
from a medical website. I am sorry I can not recall
what site it was, I looked up information by using a
specific ACC-C search. It is simply nothing better
than feeling validated when you see someone else in
the world that has a brain that looks like yours.
Through my research I found out more correlations
to my optic nerve problems and thyroid issues."

Earlier in your May 4, 2010 e-mail you wrote:


"I have discovered some new limitations or
rediscovered limitations I used to have that
are present again."

What are some of the new and rediscovered
limitations?

Can you explain them in more detail?


"Since my automobile accident March 7, 2007 and a
minor one in October 2007. I have discovered
limitations I have as an adult. I truly believe
that those minor bouts of disorientation have
short circuited my brain more than I would have
preferred. I say that because I have less
capability to process information as quick as I
did in college. I have to slow down when receiving
new information not ever learned before. My ability
to process information that adds to what is stored
in my long term memory is still doing okay.
(e.g. I recently took a 2 cr. [2 credit]-8 lesson
Spanish class for teachers. I finished it in 9 days
doing it after my house was quiet for the night. The
last time I took Spanish was in h.s. although I have
spoken minimal Spanish with my students). I have
less capability to handle stress, and process it
effectively, that used to roll off my back.

My hypothyroidism has put limitations on me as well.
Since the hypothalamus runs most effectively with a
functional corpus callosum, some months have turned
out to be a “crap shoot” for the lack of better terms.
I say this because I do not know if thyroid is going
to receive the meds properly or if its going to not
receive it because I did not follow every letter of
the law when taking the meds. Regardless I need more
sleep than most people, on average. I have to watch
my diet because food can affect absorption of the
thyroid meds. I need to keep moderately active, too
much is bad and too little is bad."

When were you diagnosed with hypothyroidism?


"1995. Holy cow it has been 15 years…. Yikes!
Spring of my first semester away at college
(2nd yr in college)."

Does hypothyroidism or thyroid disorders run
in your family?


"My maternal grandma had thyroid issues since my
hypothyroidism diagnosis, one of my sisters has
been on meds for it also for about 4 or 5 years
too"

you wrote:


"Since my automobile accident March 7, 2007 and a minor
one in October 2007. I have discovered limitations I
have as an adult. I truly believe that those minor bouts
of disorientation have short circuited my brain more than
I would have preferred."

Can you explain and give more detail about the "minor
bouts of disorientation"?


"These bouts of disorientation had come more when my
thyroid hormone levels were off along with my sleep
pattern or eating patterns. If I am not a clockwork
kid with my life, then I can wreak havoc that trickles
into my sanity. Last summer, my thyroid TSH levels
were so whacked along with something else undiagnosed
that I had a terrible summer overall. We are talking
emotionally off, physically un-energized, and mentally
not being able to handle much stress, even the healthy
amounts of it.

Did the "disorientation" begin after the car accidents?


"Yes and No."

Do you still have "minor bouts of disorientation"?


"I don’t get it much any more. Although a few weeks ago
I had it and my chiropractor wants me to time it and
chart it on a calendar because it may have something to
do with hormonal changes so many days after menstruation.
Great thing to talk to a male Chiro. about right?!"

you wrote:


"I truly believe that those minor bouts of disorientation
have short circuited my brain..."

When you say that the disorientation has
"short circuited my brain", are you referring
to the loss of short term memory that you deal
with now?


"YES I am talking about my memory."

Did you at any time BEFORE the car accidents deal
with any short term memory loss or difficulty with
memory and remembering things?


"No. I did my college all before that and even having
kids before my short term memory loss started going.
If you can maintain memory in college and during
pregnancy and childbirth, then you are pretty good
right???!!"

Do you have any other medical conditions in addition
to having complete Agenesis of the Corpus Callosum
and hypothyroidism?


"I have no curve in my neck. But that gets adjusted
by a cute, sassy, younger than me, knowledgeable
chiropractor that has helped me more with my thyroid
problems more than my own med doctor in the past few
years."

During our e-mail exchanges Patty revealed a few
additional things about herself that I will include
here for those of you reading her story.

Patty said:


"I can have random, unorganized thoughts, hence that
is why I answered the question right after it was
asked. So if you can piece everyting together that
I told you, it would be impressive.lol"

On the contrary, it is definitely the other way
around; I am impressed with Patty the person,
the teacher and the Mom amidst her challenges.
I am especially impressed with her kindness,
openness and I am thankful for the enlightening,
insightful and very valuable information that
Patty is willing to share with others.


Did you struggle with social skills as a child
in school?


"I did not struggle much with social skills. I knew
the social graces and proper manners to have when in
public. I have been “very emotional” since little on.
So, I have been easy put to tears over small things.
I was not a popular student. It probably was because
I was a sensitive child to getting my feelings hurt."

Do you struggle with any social skills or
socializing now as an adult?


"I am pretty social as an adult. As my husband says
“ you can make a good conversation with an ant.” I
avoid useless people, people who I have been kind to
or friendly to and they don’t give me the time of day.
Phooey on them. I am selective on how I socialize. I
have a select group of friends I like to hang with.
We don’t get to see each other much, so face book has
helped me connect with old friends and make new ones
through acquaintances."

Did you attend a mainstream classroom?


"I attended a mainstream classroom. I was a good
reader so I was in the above average reading group.
I did take years of summer school for math because
the drill and practice of math facts were painstaking
for me. It paid off when I went to a prep school for
h.s. [high school] and took for years of math. I only
did average in those classes but it was better than
taking remedial classes."

Did you receive Special Education Resource help?


"I did not qualify for SP.Ed. [Special Education]
Resource help. The more cerebral multi task problems
just took me longer to do but I completed them in the
given time."

Can you ride a bike and drive a car?


"I ride a bike and drive a stick shift car. I love
my car because I feel like I am back in college.
(The best part of my early adult life. Ahh the memories!)"

Did you attend college and get a degree? I assume
that you did attend a four year college and you
received a teaching degree."


"I attended the University of Wisconsin -Stout.
I received a Bachelor’s degree in Early Childhood
Education, in 1999. I taught one year at a day care
without having my license. I was hired from just
having my degree. I am in the process of renewing
my license a second time, every 5 years I must take
6 credits of classes. I have taken several classes
that relate to managing a classroom with a variety
of students, ELL [English Language Learners] and
special needs."

Is your daughter your only child?


"I have a daughter who will be 7 in June and a
son who is 5."

What do you enjoy doing the most in life...
what are you passionate about


"Personal: My deepest passion is that I use my
knowledge to make informed decision and to empower
other people with the information I can pass along
to them. I want to learn as much as I can about
ACC-C from educated neurologists. So I put the
puzzle pieces that are still missing into my life
with solid answers."

"Career: I am most passionate about having my
students have my classroom as the best environment
for learning to happen. I want to be as fluent as
I can in Spanish to communicate effectively with
families of my students."

It is very evident to me that Patty is a dedicated
teacher who cares about helping her students learn
and I have seen her passion for teaching and helping
kids/students take place before my own eyes.

Patty belongs to one of the same ACC online e-mail
support groups that I belong to. In fact, just
recently Patty reached out to the parent of a young
child who has Agenesis of the Corpus Callosum who
was asking for help with her child's learning needs
and challenges. Patty gave advice to the parent and
offered specific, detailed teaching methods and ideas
to try. Along with Patty's specific reply to the parent
she also included this information:


"If you stimulate the different hemispheres of the
brain with crawling activities and stretching across
the body activities, the brain will begin to be
stimulated.

Even with having a ACC-C myself. I have found that
these midline crossing activities help my cognition
to engage better that day, and I am the teacher!

Look into a local S.M.A.R.T. training program near you.
The program is for struggling students in the early years.
The program is very hands on and was designed by some
people who had children with special needs. It combines,
OT and PT and ST mixed in. The activities themselves are
between 2-5 minutes each."

S.M.A.R.T. stands for:

Stimulating Maturity through Accelerated Readiness
Training.

SMART is a multisensory program.

Many kids who have Agenesis of the Corpus Callosum
have benefited from using a multisensory teaching
approach. The midline crossing exercises that are
incorporated into S.M.A.R.T are an added bonus for
someone who has ACC.

The S.M.A.R.T program is being implemented into
some schools in pre-kindergarten, kindergarten and
in some first and second grade classrooms and seems
to be a big hit with the students and staff.

Because I have a child who has Agenesis of the Corpus
Callosum, I was curious to learn more about S.M.A.R.T.

I asked Patty:

Do you know of a specific website for S.M.A.R.T.?


"I have my resources at school. go figure. SO I
would have to look the website information when
I get back to school. I can check on Monday.
I know there is a 4 day training seminar that all
"moderators" (and teachers too) are supposed to
take to be accurately trained. I am doing the
budget version and having my sister train me
(until my district would pay all or part of my
way of course.) My sister is the moderator for
her school. So she does the activities with all
kindergarten, all first grade and some second grade
students. She had them on a weekly scheduled time
just as gym or art would be scheduled. The reading
and math scores have greatly improved in one years
time from the impletation of this program. She has
several of the large motor activities done in her
classroom. In addition, each of the dedicated
teachers do more activities in their daily routines
such as I do. The only class that did not show
improvement with measurable success was from a
teacher, who had students in a half day program.
She was "too busy" to be consistent and take time
to do the activities. I heard that and knew I
could make it work in my half day program.

I will send you an email containing exact details
off the materials that I have at school. I should
have time to grab the books on Monday... if I
remember.... ha! I crack myself up! Note to self:
bring SMART books home! I know the creators of this
program set out to help their own child with special
needs. It worked for them so they wanted to share it
with others!"

I love that Patty is able to make a joke about her
difficulty with short-term memory loss and can laugh
at herself.


In my own research I found the following information
about S.M.A.R.T. and will share it here for anyone who,
like me, may be curious and interested:

Check out a school in Wisconsin where a teacher uses the
S.M.A.R.T. program with the PreK students in her class.

The teacher, Miss Beth, wrote:


"The S.M.A.R.T. curriculum is designed to help each
student progress at her or his own rate and to enrich
and enhance the student's abilities in a positive and
"play-like" atmosphere."

Have a detailed look at S.M.A.R.T. in the News

and


A S.M.A.R.T. new program at Jefferson


Minnesota Learning Resource Center-S.M.A.R.T. Info.



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

S.M.A.R.T. Newsletter Archives and E-Mail Sign Up

S.M.A.R.T. Online Resources

I asked Patty:

Do you do midline activities with the students
in your classroom?


"I do midline activities every day. I have received
many compliments from parents that they have new
children with their profound improvement of skills.
I have not done a ton of "academics" I do a ton of
"train the brain" activities. It may look like we
don't do much to the untrained professional. Yet by
golly I have a class of students, where 95% of them
are ready for Kindergarten. Hallelujah!"

"I do the "hulk stretch" where we reach up and grab
something, with both hands, big from the sky on the
left and carry "it" over to the right side with our
arms going from extended up to lowered down and SMASH
the thing across our knees. My 4 year olds of course
have to show me a good "grrr" muscle pose before it
as a added humorous body building move! Hulk-smash...
get it! Then we do the crossover "smashing about five
times on each knee, alternating left/right/ left right/
etc....."

alligator crawl - picture not Patty's class



"We do the alligator crawl where their belly must
stay on the floor but they have to crawl with
their bottoms down also, Their knees alternate
as if to crawl, left arm up right knee up, right
arm up left knee up. Their bottoms must be down
at all times and their arms can not carry them
they must bring their knees up in te correct
pattern. I had 3 to 4 kids who could not do it
in October that are able to do it more successfully
now. THey do not do it 100 % all the time but their
success is up from 0% correct body patterns to about
75% of the path is done correctly. My path for this
is about 10 - 15 feet long. I moved tables and chairs
away from a part of the room."

"I do the bear crawl where their hands and feet
do the crawling pattern with their bottom in the
air....I had a few kids tip over from having their
legs go faster than their hands...The length of
the path is the same as the gator crawl.

I do a flamingo stand with one foot in the air at
a time, counting to 5 at first, then building to a
count of 10. Also I do a heel tap where the child
stands up and taps the right heel with the left
hand both in front of the body for x amount of
times and then behind the body for x amount of
times."

sensory crawl - picture is not Patty's class



"There is a sensory crawl where pictures of objects
are in clear pockets taped to the floor. The child
names the object and taps the picture. then he
crawls to the next picture on the floor and does
the same. use 10 pictures of objects at least.

Hook board- little mug hooks are on a post and a
child puts varying size washers on the hooks all
with one hand and then uses the other hand to take
all the washers off. start with bigger washers
and then move to smaller washers.

Wipe off boards- Make simple maze patterns and
have the child follow the right path with their
finger first. Another activitiy is drawing letters
or lines on the wipe off board and have the child
erase the lines using their pointer finger.

Use small tongs (without the sliding ring- it
pinches fingers) and have kids pick up pon poms
from small bins, putting them from one bin to
another bin.

Do the same with eye brow tweezers and small
pon poms or beads. Boy do they really have to
concentrate on that! I love their little tongues
sticking out trying to focus on a steady hand."

spin in circles - picture is not Patty's class



"Spin in circles counting to ten. or get a
"sit and spin" and let it rip (counting to 10)!
Then reverse the direction they are spinning.
I had horrible problems with one girl's need
to spin before I was told by my sister
(trained in SMART) " let her do it"
"do it daily" we did it daily for 4 weeks.
She was a new child! She sat still better
and had better focus after we spun! Spinning
builds the core muscles in their belly needed
to sit better on chairs.
I could on and on....."

She could go on and on and I could listen to
her with great interest.


In closing, during our ending e-mail exchange,
Patty shared some information with me about
herself that I believe is valuable and should be
shared here:


In actuality, thinking of all these specific questions
has worn me out a bit mentally. I need to recoperate and
get my gears switched to more college classes within the
next week. I have a three credit class starting soon. I
have not taken a 3 credit class in 5 years. So with my
preparation for a church youth rally, 4K graduation,
spring concert, end of the year picnic, my college class,
and being a Sunday school teacher, my next month is going
to be out of control buzy. I pray my brain keeps up so it
doesn't short circuit and make me an emotional basket case.
My limitations are very apparent with needing sleep
having hypothyroidism, food to keep me from becoming
hypoglycemic, and personal time so my brain can process
and organize the day's events- overstimulation can make
my brain hemispheres feel further apart. (my speech gets
garbled, my mental fog becomes as bad as pea soup, and
my emotions become a roller coaster ride)
God Bless, Patty"

As a mom myself of a child who has Agenesis of the
Corpus Callosum, I am highly interested in what Patty
has to say from both the perspective of an adult, who
has ACC, and as a teacher.

Thank you very much, Patty, for your willingness
to openly share your story, for taking the time to
answer my questions and also for sharing some of
the S.M.A.R.T. multisensory and midline crossing
exercises that you do daily with the students in
your classroom.

I thoroughly enjoyed meeting Patty and having the
pleasure of getting to know her better and I hope
that you have as well.

Won't you take a minute to let Patty know what
you think by leaving a comment for her.



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