A Question for Adults with ACC

[matthewsmom]

I'm not an adult with ACC but I am the mom of a 15 year old boy who was diagnosed with ACC when he was four months old.

For the adults who went through school NOT knowing they had ACC
or partial ACC...do you wish you had known and been diagnosed with
it sooner? Do you think it would have been helpful for you to know
why you struggled with learning and other things?

Thank you very much to any of you who may choose to answer this question.

Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*

[Lynnea]

Sandie,

You and I have talked a lot before, but I figured I would answer your questions though I'd love to see other answers of adult ACCers.

My answer is this: Though I regret nothing in my life sometimes I do think that I would have liked to know when I was growing up. Though I had the time in life to drive, I drove for a year before I wasnt allowed to drive anymore. I miss it. I think that this is one of those "the grass is always greener on the other side" moments. I think it would have been helpful but on a personal level they didnt put me through any special needs classes, and always treated me as a gifted student. They taught me above my level in some classes but were patient with me at the same time. And in a way that was helpful. But like I said sometimes I do wish I knew as a child about it.
-Lynnea

[Keeping Condition from Child]

I was not told I had ACC Complete until I was 18 years old. My parents sat me down and tried to explain as best they could what I had. It was incredibly overwhelming even at that age, I can't imagine a young child hearing that. What would they do with that information.

I, for one, am glad I was not told until I was an adult. My dad was persistent on keeping it from me until now because he believed I would use it as a "crutch." And I probably would have. I already had multiple things wrong with me that I knew about, and to add on another would have been extremely tramatic to a young child.

I thank my parents almost every day for keeping it from me until now.

[superstar]

I have always known about my ACC. My parents never hid it from me.....I learned as they learned about ACC, and I've learned along with all the other researchers, parents and other ACCers.

I have never used it as a crutch, and I have never let it stop me from living.

Parents are the best to judge if and when their child is ready to learn about their ACC. Some children might need to mature some so that they dont use it as an excuse to get out of everything.

I am glad that I have always known about my ACC. I sometimes wonder what life would have been like if I hadnt known, but it doesnt seem like it would have been any better, I would have still had the same struggles and problems that I had.

Thats my two cents for now.

Sarah Mellnik

[matthewsmom]

Lynnea, Sarah & Guest-(keeping condition from child):

Thank you to each one of you who took the time to answer the question and for your willingness to share openly your own thoughts regarding knowing or not knowing about your ACC diagnosis.

It actually took a little twist that I hadn't thought of when I presented the question...the possibility of parents making the choice to withhold the diagnosis of ACC from their child in the best interests of their child.

As the mom of a child who has complete ACC, it is always enlightening to get the perspective of an adult who has ACC so again I thank you for being so open and willing to share your feelings.

Sandie *Mom to 15 year old Matthew with complete ACC*

[grettagrids]

I wish my mom had told me when I was first diagnosed at age 12.. it sure explains a whole lot! I asked her why she had waited so long a few days agao and she said she wanted to spare my self esteem. I was never brought up by mom to be thought of as "disabled" that and it has always been a hush hush thing here. I am still pesstering her to join ACC groups and chat with other ACCers and their parents. As my sphycologist told me last week.. Alot of doctors,teachers and other folks just don't understand ACC and may even be freightened by us or our intelligence. School was hard for me becuz of my behavior but I graduated on the B honor role and aced chemistry,biology and mechanics.. MATH I flunked.

[annickacox]

I found out when I was thirteen my parents never hid it from me. My mom was always open with me she never let it be a crutch for me she would always refer to me as her " little miracle" she always told me I was special and to never let anyone think I was weird. And when life would get hard or confusing she would be there to help me think it through