Looking for Much Needed Input

Agenesis of Corpus Callosum
#1

Hello To All!

My daughter Holly is 12 (13 this July) and has ACC. She was diagnosed in utero. We had her in early intervention from 6 months of age and she currently attends public school and is mainstreamed in the 7th grade. Holly is very high functioning and seems not to have any of the multitude of other issue I see so often with this diagnosis. We are truly blessed to have Holly in our lives.

On the other hand as Holly is getting older we are facing new issues. There is that "There is something a little off but-I-can't-put-my-finger-on-it" feeling when it comes to Holly. The other children are starting to pick up on it. Her intelligence is not affected but her social skills are lagging behind the other kids her age. I would put her emotional age at around 8 or 9. We are having issue with her having " bathroom accidents" during school and this is a concern as Holly doesn't seem affected by it. We currently have her enrolled in a social skills group and she has a 504 in place which allows her extra time for tests etc. The school has been very supportive.

The reason I am reaching out is two fold at this time. As Holly gets older I am becoming more frustrated with the lack of nformation available from doctors, therapists, specialist etc. etc. I would be very grateful to hear from other parents of children Holly's age and older to gain from your experience in facing the teenage years ahead.

I am also having a bit of difficulty with Holly's older sister, Paige (age 14). Paige is very aware of Holly's special needs and is finding it frustrating to deal with the issues Holly has. Her friends really can't relate to her issues with her sister. The support groups that I have found have not been specific to ACC and they seem to cut off sibling support groups at 12. I'd like to find someone who is Paige's age that is going through the same issues. I think that she just needs to be in contact with some one in the same situation that gets it.

I appreciate any and all, advise, support, information, help that anyone can offer at this point. It has been helpful just reading these posts and knowing that I'm not alone. Thank you all for your honesty in sharing your stories on these boards. I keep you all in my prayers!

Dawn

#2

Hi, my daughter is 11 and is high functioning but is only at a 2nd grade level. She had the sme bathroom accidents and could care less, she has no concern for anything, she is blissfully unaware most of the time. She isnt very good at interacting with other children, sometimeis they are younger she can get along with them. I dont know if this helps. Good luck!!!
Tina and Jessica

#3

Hi Dawn,
Have you tried the ACC-List out of Maine,the creators of that Board have son with ACC.
The address is:
listserv@list.maine.edu
They are on the internet,I have been there 5 years and there great!
All they deal with is ACC stuff.!!!
Good Luck,
Vance Kinkel

#4

There is some evidence that CC issues might be similar to autism in the way they present and many of the same things work for teaching social skills as work in autism. You might wish to use “social stories” about things like how to behave in social situations. Also, many children have bathroom accidents quite late, they may not get signals from their nerves in time to get to the bathroom. If the accidents are urine related, there are medications that can help and they might see a Urologist just to get checked out. Also some kids have hypotonia (weak, floppy muscles) everywhere including in their gut. Then if they don’t get enough fiber they can be constipated, or they don’t get the signals that their gut is full and they need to go to the toilet in time to avoid an accident. You might need to try either laxatives or adding psyllium or other fiber, and get the child on a schedule (you go and sit every 90 min) to get them used to the toilet and having some success.

My son is 10 and still does not always notice the signals though we have been working on this since he was 4. He is mostly there, and we use extra fiber. It is a bit more of a challenge now though as he has scoliosis too and the brace makes dressing and undressing a bit more of a challenge.

Jane in MN

#5

My son, age 13 has C-ACC. He is pretty high functioning but I am having some behavioral issues with him. He’s a great student, loves the computer and designs a lot of things for school. I have him enrolled in a small day school. He graduated 8th grade. He is fluent in reading and writing Hebrew. He doesn’t have any friends to speak of. He loves to be around adults and takes good care of kids helping them with homework. He loves to cook. He doesn’t interpret social signs very well, he is very repetitive, rips paper and has a “treasure trove” of stuff for his hands. He bites his nails. He is on a small dose of Fluvox and Benadryl when he needs to sleep at night. I’ve been a member of yahoo ACC Network since 2001 and ACC listserv for ACC Network. I want to learn more about what I can do to help my son during these teen years.