Advice

Agenesis of Corpus Callosum
#1

Hi, just found this site. My son Payden who will be 5 very soon has C-ACC and we are starting to find out may have some delays. Just wondering if anyone out there has any advice on teaching. We are doing are best but would like to know if there are certain techniques that help.

Also is there anyone out there that found there child later in life had any other problems, like hydrocephalus? We are concerned due to the ventricles being enlarged and are taking him in for a MRI. Just wondering if there is more I should be concerned about.

Otherwise he is a great loving boy, has social and emotional issues but we are working with that!

Any advice would be great!

#2

Hi, Our daughter is six and she has C-ACC and Colpocephaly. Her ventricles were enlarged also because they were fiilled with fluid. Nothing they can do about it, dosent get better, dosent get worse. Same as C-ACC. My daughter is in the IEP program in school and also has occupational and speech therapy through school. We are waiting now to find a behavoralist in our area that specializes in pediatrics and then we will do that therapy once a week. Is your child in kindergarten yet? If not, when he gets there you become his advocate and get him all these things based on the fact that there medically needed. Dont forget the law “NO Child Left Behind”.

#3

My son is 3 with C-ACC, when i was 7 months pregnant, they diagnosed him with Hydrocephalus in utero. When he was born he had an MRI the very next day, that is when we found out it was ACC. It was because the ventricle were enlarged and formed differently due to the missing piece. He does not have it and he is doing well. So just because they are enlarged does not mean that he has it. My little guy is only 3 , so it is hard to say that he will have problems later. It is possible, anything is with ACC, it is alot of waiting to watch them grow. I hope all goes well for your little man. Good Luck.
Amy

#4

Hi,
Our son is six and he will be in the second grade this year. He is a full special ed class room as his needs are better met there. This past school year was remarkable because he began to read. I credit the Edmark reading program that is very repetative and is geared toward children who learn differently. We also used alot of flashcards for sight words and we love the leapfrog DVD videos. My son learned all of his letters with this video. We have other challenges such as writing. Ours has a hard time writing a straght line or a circle let alone make letters or color. So we are doing alot of computer work so he can learn what it is to output correctly spelled words and his name. Another issue that we are having is math concepts. They are way over his head. It is amazing that this child can recognize over 500 sight words, but can not tell the difference between big and little.
Each child with ACC issues is different. Some are good at math and some are better at reading. Some can play sports and understand baseball stats while some are uncoordinated and find joy in music or other things. We try to focus on the things he can do and remember the things he can’t - all the while trying to understand what he loves most. With this in mind - learning is a bit less stressfull for all of us.

As for the enlarged ventricles. Our son has these too and it was explained to us that they are a common occurance related to the C-ACC and they are filled with fluid, but it is not fluid that is causing pressure, but it is just fluid filling the space.

Hope this helps.
Crystal