|
Post by matthewsmom on Aug 15, 2009 14:21:34 GMT -5
Meet Adults with ACC Stories If you are an adult who has ACC or a corpus callosum disorder, I invite you to share your own personal story on the ACC blog. I am the mom of Matthew. He is 15 years old and he has complete ACC. He was diagnosed with ACC at four months old by a CT scan. In April of 2009 I created an ACC blog. I wanted to create a site that could offer positive information, teaching tools, etc and an interactive place where other people could post comments and give their own valuable and insightful information in an effort to help others. One of the topics that was created is: Meet Adults With ACC Lynnea, the person who founded ACC Awareness Association, Inc. (ACCAA) and who also created this wonderful ACC Message Board forum very graciously wrote her own personal story about life with ACC and shared it on the ACC blog. I can tell you that Lynnea's story on the ACC Blog sparked the interest of MANY people who read (and continue to read) it. Her story is especially helpful and insightful to parents who have a child with ACC but is equally as helpful in reaching out to other adults who have ACC and helps give teachers a much better understanding of ACC (as seen through the eyes of a grown adult) what it was like as a child with ACC in school. The ways in which your own story can reach other people is endless... If you are an adult who has Agenesis of the Corpus Callosum or a corpus callosum disorder, I invite you to tell your story so that others can gain insight and see through your very own perspective what it is like to have ACC, to read your own personal struggles, your accomplishments and whatever you may choose to share about yourself. If you are an adult with ACC who is interested in sharing your own personal story on the Agenesis Corpus Callosum blog please send me an E-Mail: hope@aracnet.com or you can send me a PM (Private Message). Here are some things to consider including when writing your own story that give insightful and extremely valuable information to other people who will read it: When did you find out that you have ACC? How old? What did you struggle with in school? What did you enjoy most and do well at in school? Did you struggle with social skills in school? Did you make friends easily in school? Do you still struggle today with social skills as an adult? Did you attend a mainstream classroom? Did you receive Special Ed resource help? Can you ride a bike and drive a car? Did you attend college? Did you get a degree? Do you have a job and if so what do you do? Are you married? Single? Do you have children? How does ACC affect you today as an adult? What do you enjoy doing the most in life? What are you passionate about? And, if any of you would like to read Lynnea's story...Meet Lynnea - An Adult with ACC....you can read it below: agenesiscorpuscallosum.blogspot.com/2009/06/meet-lynnea-adult-with-acc.html Thank you again, Lynnea, for sharing such a wonderful story. *hug* If you are the parent of a child with ACC or someone else reading this who is interested in reading and learning more about the perspective of an adult who has ACC please show your interest and encouragement (by posting a reply here) and let the adults who have ACC know HOW MEANINGFUL, helpful and insightful their stories are and how interested you are to hear their own personal story. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on May 17, 2010 1:22:15 GMT -5
Steve's Story: An Adult with Hypoplasia of the Corpus Callosum agenesiscorpuscallosum.blogspot.com/2010/05/steves-story-adult-with-acc.htmlI became aware of Steve on another ACC e-mail support group that I belong to. I was fascinated to read the things that he reveals in the support group with respect to how he found out that he has a thin (hypoplasia) corpus callosum so I asked Steve if he would be willing to share his story on the ACC Blog. I was thrilled when I woke up one morning to find an e-mail story from him. Have a look for yourself (at the link above) and it would be great if you could please take a couple minutes of time to leave a comment on the ACC blog for Steve at the end of his story. I am very thankful that he took the time to share his story. Sandie *Mom to 16 year old Matthew with ACC in Oregon*
|
|
|
Post by Lynnea on May 18, 2010 8:51:21 GMT -5
I think it's wonderful what you are doing, letting people have the chance to tell their stories! It's a blessing not only to the readers but to those doing the sharing. So the thank you goes both ways. Thank you for giving myself and others the opportunity to share our stories!
|
|
|
Post by matthewsmom on May 19, 2010 23:52:24 GMT -5
Lynnea, Thank you for your very sweet note. It was so kind of you to take the time to send such a nice note. It is my pleasure and a privilege to share the stories of adults who have ACC on the blog. Sandie *Mom to 16 year old Matthew with ACC in Oregon* P.S. Congratulations on your college degree!!
|
|
|
Post by matthewsmom on May 20, 2010 0:02:35 GMT -5
Meet Patty - An Adult with ACCI recently received an e-mail from an adult, Patty, who has ACC, who wanted to tell her story for others on the ACC blog. Patty is also a teacher. I was so happy to hear from Patty when she e-mailed me and, having just finished Patty's story, I am really excited to be able to share Patty's story with you. Patty's Story is insightful and enlightening. Patty shares her life with ACC and how it affects her and she does so in a unique and interesting way that I think will speak to so many parents who have a child with ACC and will also, more than likely, cause some adults who have ACC to relate to one or more things that she says. If interested, you can read Patty's story at the direct link below: Meet Patty - An Adult with ACC May 19, 2010 agenesiscorpuscallosum.blogspot.com/2010/05/meet-patty-adult-with-acc.html If anyone would like to leave a comment for Patty you can do so directly on the ACC blog by clicking on the "comment" link. Or, you can also send your comment for Patty directly to my e-mail: hope@aracnet.com and I will be sure that Patty gets it. I hope that you have a wonderful day. Sandie
|
|
|
Post by matthewsmom on Oct 14, 2010 22:15:41 GMT -5
Sara's Story - An Adult with ACCagenesiscorpuscallosum.blogspot.com/2010/10/saras-story-adult-with-acc.htmlSara has posted notes in a couple of the ACC support groups that I belong to but I didn't know her very well......until Sara recently left a comment on the "Autism and ACC" blog post. That comment from Sara sparked some e-mails between us and I asked Sara if she would consider sharing her own ACC Story. Well, she not only replied with a yes...but she wrote her story and sent it to me the next day! It is a privilege to be able to include Sara's ACC Story on the blog and I am really excited that she is willing to share her story with other people. Sara is even willing to answer any of your questions. So, if you read her story and want to ask Sara a question...go ahead. Thank you. Sandie *Mom to 17 year old Matthew with ACC in Oregon USA*
|
|
|
Post by Leanna on Feb 9, 2011 12:53:31 GMT -5
Hi! My name is Leanna and I am 24 years old with complete ACC. Maybe I was just naive, but I just recently discovered "it" has a name (ACC) and am really interested in doing research and meeting people that also have ACC. I was born with ACC, and have shook my head (back and forth, as if to say "no") since I was born, and over the years, as I've become more aware of it, I have been able to control it better. I have vision impairment (I wear glasses, and have an astigmatism), but other than that, I would consider myself "fully functioning" (I don't mean to hurt anyone by that term, it's just the only term I could think of to describe myself). I have always been teased and questioned about my head-shaking, so I am curious to find out if other ACCers also shake their head. The doctors didn't know much about ACC when I was "diagnosed", and I guess my parents were never super-forthcoming with information about it (possibly because I was so "normal", and maybe they didn't want to admit their daughter had a disorder). I had no idea how ACC affects others, and that there are so many more problems with it that are much more severe than mine. I'm wondering how I can get involved (volunteer) with ACC organizations and people. I'd love to know more about ACC, and like I said, I'd love to meet others that deal with it (ACCers, parents, guardians, etc.)
Thanks, Leanna (Oregon)
|
|
|
Post by Leanna on Feb 9, 2011 12:55:20 GMT -5
I also have low muscle tone and a high pain threshold, which I have been told could be related to the ACC.
|
|
|
Post by Lynnea on Feb 9, 2011 23:07:40 GMT -5
Leanna feel free to send me a message on here, or to e-mail me at ACCawareness@gmail.com Our names are very similar Leanna and Lynnea (Pronounced like ReNae but with an L) and I'm 25. I found out about my ACC 5 years ago. And so I'd love to talk to you more!!
|
|
|
Post by matthewsmom on Feb 9, 2011 23:12:03 GMT -5
Hi Leanna, Welcome to the Message Board. Thank you so much for posting a note on the board and for sharing a little bit about yourself. I am also from Oregon. I have a son who is 17 years old and he was born with ACC. He was diagnosed when he was four months old. I know of another adult who has ACC who also lives in Oregon. I invite you to consider joining the message board and becoming a member if you are comfortable with the idea. I hope that you will find support through the people on this message board and that you will find the information that is shared here to be valuable, helpful and informative. There are so many avenues to network and connect with other adults who have ACC as well as with parents of a child with ACC. The support is a blessing...and you yourself have so much to add and share with other people, too. Please let me know if you are interested in learning about the other ACC support groups and avenues to get in touch with adults who have ACC and parents of a child with ACC. I will be happy to pass that information on to you. In response to your other note regarding the low tone you experience and your high tolerance to pain...those are also experienced by some people who have ACC...my own child included. If you have any questions or would like information please let me know. I am happy to do my best to help. You can e-mail me: hope@aracnet.com or send me a private message (PM): accawareness.proboards.com/index.cgi?action=pmsend&to=matthewsmomIt may interest you to know that the owner of this ACCAA Message Board (Lynnea) is an adult who has ACC herself. In fact, she just graduated college last year. You can read Lynnea's personal story about ACC if interested at the link below: agenesiscorpuscallosum.blogspot.com/2009/06/meet-lynnea-adult-with-acc.htmlSandie *Mom to 17 year old Matthew with complete ACC* Hi! My name is Leanna and I am 24 years old with complete ACC. Maybe I was just naive, but I just recently discovered "it" has a name (ACC) and am really interested in doing research and meeting people that also have ACC. I was born with ACC, and have shook my head (back and forth, as if to say "no") since I was born, and over the years, as I've become more aware of it, I have been able to control it better. I have vision impairment (I wear glasses, and have an astigmatism), but other than that, I would consider myself "fully functioning" (I don't mean to hurt anyone by that term, it's just the only term I could think of to describe myself). I have always been teased and questioned about my head-shaking, so I am curious to find out if other ACCers also shake their head. The doctors didn't know much about ACC when I was "diagnosed", and I guess my parents were never super-forthcoming with information about it (possibly because I was so "normal", and maybe they didn't want to admit their daughter had a disorder). I had no idea how ACC affects others, and that there are so many more problems with it that are much more severe than mine. I'm wondering how I can get involved (volunteer) with ACC organizations and people. I'd love to know more about ACC, and like I said, I'd love to meet others that deal with it (ACCers, parents, guardians, etc.) Thanks, Leanna (Oregon)
|
|
macs
Newbie
Posts: 3
|
Post by macs on Jun 4, 2011 22:53:51 GMT -5
First of all, I have to admit that in order to not get frustrated because I already forgot what was written on the 1st thread of this board I coppied all the questions below so I could answer them to the best of my knowledge. I have COMPLETE ACC... it's a sucker and a huge shock! Why? Well here is the answer to the 1st question: When did you find out that you have ACC? How old? a. I found out almost 2 weeks ago. I am 31 years old and have lived a pretty normal life I'd say. I have no Idea what to make of it to be honest!!!! What did you struggle with in school? a.I struggled with a lot... it's a long story, but by the time I learnt english I was 7 years old (my 1st language is Spanish, but Italian & Croatian are spoken in my home. Regardless of what language I spoke... I couldn't ever be bothered with describing a book's plot (oh gosh noooooo)... but I LOVE to read (I completed the twilight series in a total of 8weeks). I also learnt a bit of german in gr. 7 & 8. Math was very easy for me but I couldn't explain my answers as was expected of me (I love math but I do struggle... I hate calculators to be honest, but I can't deny the fact that I do need them). Making friends was the worst (especially after I moved to Canada) I was subject to intense bullying of all sorts, I hated being ignored! What did you enjoy most and do well at in school? a. I can only say that what I hated I also enjoyed... but I loved Drama, I loved drawing (i'm kinda horrible at it though LOL)... I enjoyed Math (when I got it) I loved the sound of shakespear, I loved phys-ed. Did you struggle with social skills in school? a. I guess I did.. now that I'm aware how lacking of social cueing I am, I totally get why... but I was always a very social person, making it harder on my when I was rejected. I loved making new friends, but never understood why the thought was not mutual! Did you make friends easily in school? a. This is "THE STORY OF MY LIFE" I guesss! Do you still struggle today with social skills as an adult? a. Yep... and can end up crying myself to sleep even... mainly because I still don't understand my condition (ofcourse it's only been 2 weeks since I found out). I am happy though that my Hubby finally gets me and tries so hard to be humouristic about it (not that I actually take his sarcasm lightly though - which now I understand why that's so hard for me)... He's starting to understand why I do the things I do and how I do them... and he's more accepting lately of my reactions than he would have been 2 weeks ago --- it's been a struggled 7 years of marriage that we've coped with quite well if I may add.... Did you attend a mainstream classroom? a. yep... but at the end tried an alternative method (completing courses in thirds)... did me wonders but I got discouraged easy and still have some credits to complete) Did you receive Special Ed resource help? a. only in gr. 9 but moved away from that school (big sucker had a great teacher) Can you ride a bike and drive a car? a. I do both... driving a car has been a learning curve though Did you attend college? Did you get a degree? a. partial but gave up... too frustrating... then I went back to school to try and finish something... but had a horrible experience..... Do you have a job and if so what do you do? a. I'm a stay @ Home Mom so not right now... but I've had trouble sustaining positions in jobs. but when I get a job I doooo work very hard! Are you married? Single? a. I answered this question above so YEAH 7 YEARS but I would be lying if I said it has been easy! Do you have children? a. 2 extremely smart beautiful daughters How does ACC affect you today as an adult? a. I'm truly still trying to figure this out... it's all fresh on my mind and I'm sure this answer will come with time and patience.... I honestly have to say... I'm blessed... I was born w/ Complete ACC... never knew about it until they sent me in for an MRI because of severe migraines... I can't hold a job for too long, I am impatient (severely), I crave routine, I have anxiety, the small things bother me more than anything in the world... What do you enjoy doing the most in life? What are you passionate about? a. I don't have an answer for this... I love to learn, I really do, but it gets so frustrating... I do enjoy the fact that I was truly blessed w/ nothing but ACC with a High Functioning life, with some hiccups along the way.... I am now glad I have a "purpose"... I'd really love to be able to help Parents of children w/ ACC cope with this issue a tad better... I think I now hold a lot of insight into what it's like to live w/ this dissorder and succeed at the things I have been able to.
|
|
|
Post by matthewsmom on Jun 5, 2011 13:57:41 GMT -5
Hi macs, Thank you very much for answering the questions and sharing your own ACC story with others here on the message board. I read your story eagerly this morning. I am the parent of a child, Matthew, who has complete ACC (he is completely missing his corpus callosum). He is 17 years old. He was diagnosed with ACC when he was 4 months old. Having only been two weeks since you received the diagnosis of ACC for yourself, how are YOU doing? It's a shock! And yet it may also help give you some answers and awareness for all of those things you struggled with as a child (and may still struggle with). I would like to know if you would be ok having your ACC story (what you shared here) to be posted on the ACC blog (with all of the other adults who shared their stories)? That way a lot more parents who have a child with ACC and other adults with ACC (who are not part of this message board) would be able to read what you wrote. You can read the other adult ACC stories at the link below: agenesiscorpuscallosum.blogspot.com/search/label/Adults%20with%20ACCIf you are comfortable having me post your own story on the ACC blog please send me an e-mail or you can leave a note here on the message board. Sandie E-mail: hope@aracnet.comI understand completely if you are not comfortable with the idea. I will wait to hear from you. Also, I sent you a private message here on this board. You can read it by logging in and clicking on the new messages at the top right hand side of the page where it says: "Hey, macs, you have ____ messages, ___ are new"Again, I am grateful to you for writing your story and I enjoyed reading each one of your answers to the questions. It was very interesting and enlightening. If you have any questions please just ask. I would be very happy to help in any way. Sandie *Mom to 17 year old Matthew with complete ACC in Oregon* P.S. If you would like to share your story on the ACC blog, would you like to include a picture of yourself (like some of the other adults did)?
|
|
|
Post by Hannah on Oct 26, 2011 6:26:37 GMT -5
Hi! My name is Leanna and I am 24 years old with complete ACC. Maybe I was just naive, but I just recently discovered "it" has a name (ACC) and am really interested in doing research and meeting people that also have ACC. I was born with ACC, and have shook my head (back and forth, as if to say "no") since I was born, and over the years, as I've become more aware of it, I have been able to control it better. I have vision impairment (I wear glasses, and have an astigmatism), but other than that, I would consider myself "fully functioning" (I don't mean to hurt anyone by that term, it's just the only term I could think of to describe myself). I have always been teased and questioned about my head-shaking, so I am curious to find out if other ACCers also shake their head. The doctors didn't know much about ACC when I was "diagnosed", and I guess my parents were never super-forthcoming with information about it (possibly because I was so "normal", and maybe they didn't want to admit their daughter had a disorder). I had no idea how ACC affects others, and that there are so many more problems with it that are much more severe than mine. I'm wondering how I can get involved (volunteer) with ACC organizations and people. I'd love to know more about ACC, and like I said, I'd love to meet others that deal with it (ACCers, parents, guardians, etc.) Thanks, Leanna (Oregon) Leanna, I would be really interested in speaking with you further. My younger brother suffers from hypoplasia of the corpus callosum and has shaken his head back and forth, as if to say no since birth. He has found it extremely difficult to accept that he will probably always do this and as a result he's suffered from severe depression and psychosis. We have never met anyone else withh ACC or HCC, or anyone who shakes their head in this way. Please get in touch with me at hfarrell6@gmail.com. Thanks, Hannah (UK)
|
|
|
Post by can on Jun 6, 2012 9:32:02 GMT -5
hello. my name is can. ı am from turkey. ı can speak english so so this is why ı am sorry about my writing... my wife was pregnant. ın 7,5 months we learned that our baby was acc. and the doctor advise to us, 'you know, but this baby do not live, talk, see... and our baby was dead in his mothers fetus. we want a baby now again. but we afraid of this... do you have any child that he/she has no acc?after the 1st baby with acc?
|
|
|
Post by Monnie on Jul 11, 2012 13:50:43 GMT -5
hello. my name is can. ı am from turkey. ı can speak english so so this is why ı am sorry about my writing... my wife was pregnant. ın 7,5 months we learned that our baby was acc. and the doctor advise to us, 'you know, but this baby do not live, talk, see... and our baby was dead in his mothers fetus. we want a baby now again. but we afraid of this... do you have any child that he/she has no acc?after the 1st baby with acc? Can, do not worry about a 2d child with ACC. ACC is not an inherited conditions, so you and your wife cannot 'give' it to your baby. We lived thru a miscarriage too, and know how difficult that can be. Loss of a baby is a big thing, even if the baby dies before it can be born. But it, and many other birth defects, can be caused by things you do -- like drinking alcohol or drugs, not enough vitamins or nourishment etc... Please read up and talk to your doctors about the care the mother (and father!) should take in how to eat etc... before and after conception and the baby should be fine. Remember also that even if the child does have a disability, they are a blessing from God and can enrich your life in ways you can never imagine if you only accept, love and support them. Take care and may God Bless your family we many wonderful children!
|
|