This is my new series of posts regarding what it’s like to raise a child with ACC. If you are interested in being interviewed, please let me know. I want to know everything about what it’s like to raise a child with special needs/ACC.
1. How long did it take to find out what was wrong with your daughter?
Diagnosed @ 6 years even though we had been under doctors care since she was a few months old.
2. Did you notice signs that she would be special needs?
From the moment she was born I knew something wasn’t right she wouldn’t feed –she was loosing weight and wasn’t reaching her milestones.
3. Do you use charts and/or aids to help her do things independently?
No we don’t use aids.
4. What books, websites, blogs, ect helped you learn more about ACC?
Books I read were: The Official Patient’s Sourcebook on Agenesis of the Corpus Callosum (amazon)
Agenesis of the Corpus Callosum: The Beast Within (amazon)
The main websites were:
www.corpal.org.
www.NODCC.org
And everything on a google search I looked on every site to find out everything I could and I’m on all the facebook groups
5. What does she struggle with the most in school?
She struggles with all aspects of academic learning.
6. Is she in a special education class at school?
She’s not in a special education class but she has a support assistant for 1 to 1 and she has a IEP
7. Is she physically impaired?
No she is not physically impaired.
8. About on average, how much does she sleep at night?
She sleeps about 4/5 hrs a night.
9. If she doesn’t sleep much, what does she do if she can’t? (ie, cry, want you, or just lay in bed)
Watches TV or goes on her laptop or Wii
10. What types of behavior problems do you have to deal with?
She’s hyperactive and does not listen– she doesn’t get that things are wrong and even if she is punished she’s not bothered because material things are not important to her she doesn’t get things she does are wrong or a danger and she is quite immature for her age.
11. How old was she when she was potty trained?
Potty trained just before she turned 3
12. What do you think the future holds for her?
I’d like to think she will be able to live some sort of a normal life job/marriage/kids but I have to be realistic and we will have to wait and see.
