My 9 year old son has DCC

Hi everyone. My 9 year old son was diagnosed with DCC 4 years ago by his neurologist. According to the genecist, he has a mild form of the disorder and it would affect it mostly his learning and short term memory. During the same time that he was diagnosed with DCC, he was also diagnosed with ADHD by the neurologist, which I now believe was a misdiagnosis. He was having a lot of behavior problems in school at the time because the school he was attending had a very poor ESE program and he was frustrated most of the time. Once I switched his school and limited his daily transitions his behavior changed and so did his ability to sit still.

He has grown out of alot of his trantrums but still has his share of meltdowns. Other than that he pretty much does most things like other kids his age. Sometimes, he understands what you tell him and other times you have to repeat it several times. He also understands Spanish and speaks it a little. My real concern is that he won’t get to the point where he can retain the information and learn to read, write or speak to the point where when he’s older he’ll fit in. It scares me because I know that the teen years are especially rough on kids let alone a special needs child and I although I don’t expect him to outgrow his disorder, I would like him to get some help in some of the things that may give him problems socially later on.

Quite frankly like most parents on here I find myself reaching out to other parents because the doctors seems to often times misdirect me more than correctly direct me. It’s very frustrating that the doctors don’t even know how to direct me. I feel very blessed that he is high functioniong but I want to be able to help him enough, so that he can take care of himself as an adult.

If anyone has any ideas on how I can help his speech or learning along I would really appreciate it, since it seems that he has just halted in his progress lately. I am trying new things but if anyone has experiences that worked then I will be more than happy to welcome the recommendations.

Hi there!

I am a 37 yr old that found out about a year an a half ago that I have C-ACC. Although I didn’t know it throughout my school years, I struggled through school as well. My study habits were good, but when I started to use questions on flashcards they improved even more and I had success with tests and such. I usually would write a question on one side and then the answer on the other. The advantage for me was that I discovered that I also had a photographic memory, and during tests would “turn over the card” in my head and remember answers that way. I would encourage you to try this with anything. I also did especially well with flashcards in memorizing my multiplication and division tables. Please let me know if you need more info or if I can help in any way.