Visitor Comments:
A NOTE TO PARENTS OF RECENTLY DIAGNOSED CHILDREN:
I am a very high-functioning C-ACC, and my birth defect was not discovered until I was thirty-one years old. Consequently, the information about my own personal experiences with the disorder may seem unrealistic compared to what your children's doctors have told you to expect. So, please bare in mind that Agenesis of the Corpus Callosum can occur as an isolated condition or in combination with other cerebral abnormalities such as Arnold-Chiari malformation, Dandy-Walker syndrome, Andermann syndrome, schizencephaly (clefts or deep divisions in brain tissue), holoprosencephaly (failure of the forebrain to divide into lobes.), or (if your child is a girl) Aicardi's syndrome. Also, know that ACC can be associated with malformations such as midline facial defects.
I know that the more profoundly impaired ACCers may have intellectual retardation, seizures, hydrocephalus, and spasticity. But, please bare in mind that the effects of Agenesis of the Corpus Callosum can range from subtle or mild (such as in my case) to severe, depending on the associated brain abnormalities. Many people with ACC are of normal intelligence (my IQ is 126), and may only have a mild compromise of skills, but they still have ACC.
We adult ACCs would love to answer your questions and offer you as much support as we can since we have been surviving with this disorder for so many years, but we cannot do it without your cooperation. We may not have given birth to ACC children, but we do understand the anger, the sadness, the grief that you are going through because we went through it ourselves when we learned about our own diagnoses. As mentioned in the first paragraph, I was thirty-one. I know of one woman who found out when she was fifty-one and a man who found out when he was in his mid to late eighties. It doesn't matter how old you are or how long you've lived without knowing - the news that you have a neurological brain disorder is still a hard pill to swallow.
Part of that reason is because in retrospect, the signs of the disorder have always been there, but we never realized that our clumsiness, standoffishness toward unmelted butter, or the constant harassment we got from some of our siblings, classmates and/or co-workers had anything to do with us. We just figured we were born with two left feet, butter was nasty, and (as the adults always told us when we cried) kids were just plain mean. Also, generally speaking, by the time we learned what was really wrong with us, we'd already gone through years of being incorrectly diagnosed with ADHD, Asperger's Syndrome, Nonverbal Learning Disabilities, specific learning disabilities, or psychiatric disorders. Currently, there's more information available about those disorders than there is about ACC, so even though we may have disagreed, we could understand why the doctors, psychiatrists, and psychologist thought they were the issue. Finding out it was really due to us being born without over 200 million nerve fibers in our brains was quite a shocker to say the least.
Once we found out and went through the shock, denial, rage, envy, resent, bargaining with our God, and depression, we then had to move on to acceptance. That meant learning to live with the disorder by making the necessary changes to improve our lives. In doing so, we sometimes fought with our family members, lost our friends and/or spouses, and sometimes even our jobs.
All of us are familiar with the sneers and jeers that are directed toward seemingly able-bodied people who park in handicap zones. Some of the seemingly able-bodied are not handicapped at all, but most have invisible disabilities such as lung disease, cardiac condition or an arthritic, neurological, or orthopedic condition. An isolated case of Agenesis of the Corpus Callosum is also an invisible disability. I happen to suffer from a seizure disorder, migraine disease, hydrocephalus ex vacuo, chronic sinusitis, recurring depression and anxiety, and allergic rhinitis. Everyone is susceptible to headaches, anxiety, depression, and allergies, and we all get colds. People don't often like to believe what they cannot see. So, unless you could tell the difference between a daydream and a petit mal seizure you wouldn't even notice that I had any disabilities at all, but they are there.
So, I am going to share my story and (God willing) in time, stories of other adult ACCs. We may not be as profoundly impaired as your children, but we have a great deal to offer those of you seeing help, hope and understanding. Given the right amount of disregard (if you will) for the presence of the disorder, a child with an isolated case of Agenesis of the Corpus Callosum can thrive just and well and you and I. |
