Hi everyone! Sorry if this post is repetitive, but I am looking for some advice…
I see a lot of Posts about children with ACC, however I am hoping to hear from Adults who have it.
I am engaged to a man who has this condition and we have a daughter. I guess I am wondering what to expect…and how I can help…or get any suggestions/advice/info at all…
Sorry about the last response, I didn’t recieve the other email with her speaking about her fiance!!! SO SORRY!
— On Fri, 10/3/08, leyd agenesiscc-cpt10325@lists.careplace.com wrote:
From: leyd agenesiscc-cpt10325@lists.careplace.com
Subject: Re: [agenesiscc] A future with ACC
To: tracyl.williams1984@yahoo.com
Date: Friday, October 3, 2008, 5:55 PM
Hi there!
I found out that I had ACC only about a year and a half ago. How long has your fiancee known about his ACC? If he has known for awhile, he may be best able to tell you more about it. If it hasn’t been that long, then I would be willling to answer any questions that you might have about life with ACC. Please let me know if you have any questions.
Dori
I believe he has known about it his whole life. Up until recently, with the exception of court-ordered doctor’s visits, he hasn’t really wanted to deal with it. His opinion is that people will treat him like his is stupid if they know, and therefore has pretty much ignored that he has it, other that as I said the court-ordered doctor’s visits. (ended up with the wrong crowd doing the wrong things when he was younger and they suspected it was partly because of the ACC)
Only very recently have I been able to get across to him that the people around him should know so that they can understand him better, INSTEAD of treating him like he is stupid (because, lets be honest, he has his moments 
) So hopefully now he will stop ignoring it, but as for being able to explain much or describe much, he hasnt been of much help because he has barely acknowledged that he has it.
Anything you can tell me, suggest, etc will be helpful. I guess I just want to get a glimpse inside his head and understand him better so that I can support him and help him, when he needs it.
It isn’t my fiance who has the ACC, it would be our son that has it. He is three months old, and we are facing a world of unknowns.ÂÂ
— On Fri, 10/3/08, leyd agenesiscc-cpt10325@lists.careplace.com wrote:
From: leyd agenesiscc-cpt10325@lists.careplace.com
Subject: Re: [agenesiscc] A future with ACC
To: tracyl.williams1984@yahoo.com
Date: Friday, October 3, 2008, 5:55 PM
Smylls,
In some ways I reacted to the news of my ACC much like your fiancee. I had, at 36, managed to get through high school, get through 2 college degrees, only to find out about this later on. I would encourage you and the family to attend a conference put on by the NODCC(National Organization of Disorders of the Corpus Callosum). You can also check out their website. I think that it is NODCC.org? We have a conference every year. Are you anywhere close to Indiana? Next year’s conference will be held in Indianapolis, IN next August, and I would recommend this conference for the whole family. Your fiancee will be able to interact with other adults with ACC, and you both can learn more about ways to help your son with whatever difficulties he has along with ACC. Please let me know if I can be of any more help at all!
Dori, 37 - C-ACC
I have ACC. I am also now seperated from my husband and getting a divorce next year. I know how your fiancee/husband feels about not wanting people to treat him like he is stupid. I dont want my family talking or telling people about my ACC because I dont want others to then label me as ACC girl. I dont want to be my ACC or my disability. I want to be able to get around it, I want to learn from my mistakes and have a happy life…a life that I want to live, not anyone else wants me to live. I want to be able to make mistakes though…thats the only way I will learn, and I have really learned from my past mistakes, even if those around me feel differently.
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Thank you,
David Beal