hi i have a 8 yr old son born with this condition. he has severe developmental delays, and cannot read, write or count or recognise numbers or letters yet.
i have read much about agenesis condition but not the dysgenesis.
i am home educating him at the moment and would love to share ideas and hear from anyone in a similar position.
My 17 month old son also has dysgenesis of the corpus callosum. I too am haveing trouble finding any information on it. I was wondering if you could let me know of any, if there is websites or support groups that deal with it. Were there any symptoms that your son had as a toddler, because when i asked his neuroligist, he really couldn’t tell me anything.
Thanks
Wide variation, rafi has a number of other issues too. Some depend on where in the CC the lack of connection is. Rafi was sitting, scooting, vocalizing but no speech at 17. He walked at 33 months, talked single words in the following year, still having issues with language, math processes and hand eye control though we are not sure how much may relate to the optic nerve hypoplasia he also has.
stars101041 agenesiscc-cpt5736@lists.careplace.com wrote:
I found nodcc to be outright nasty and not real useful. There are a lot of (imo) professional crip parents and self aggrandizers on that site. There is a Yahoo group called ACC Kids which is much friendlier. And more useful.
Jane in MN
I’m sorry to say that I have to disagree with rafismom. I have found the ACC network in Maine and the NODCC organization to be valuable resources for raising my son. The information that they have provided has helped me discuss issues and treatment options with my son’s doctors and therapist. They have also provided articles and newsletters that have helped me explain my son’s diagnosis to his teachers, aids, and our extended family. Furthermore, when we attended the NODCC conference this past summer, we got to meet some trully special people who could relate and understand all the obsticals we face while raising a child with special needs.
But please don’t take my word for it (or anybody elses for that matter) look them up. Call the numbers they provide on their sites. Tell them your worries and concerns and see what happens. I bet you’ll find compasionate and understanding people who perform non-profit services out of caring and not out of malice.
Take care,
Crystal
And I will have to disagree with jacksonsmom. ACCKIDS was started exactly because a number of parents found the NODCC organization to be unduly expensive in their events, to be in part a Schillmoller personality cult, and not to be that helpful. Initially, I found some of their information to be useful, but as an ongoing source of any kind of support, IMO they SUCKED.
Most of the real parents of disabled kids I know out here in the real world cannot begin to afford the high costs of their events, and I learned NOTHING at the last one we attended, which we only went to because it was close enough to our home to not need a room or expensive transportation. As a parent who also has developmental issues, plus is a member of a religious minority group I also found that list and its parent organization to be derogatory and insensitive in both arenas.
Jane in MN
jacksonsmom81101 agenesiscc-cpt5736@lists.careplace.com wrote:
I am not sure what “list” you are referring to. I am a pastor’s wife of an evangelical (protestant) church and have had no problems in working with the network based in Maine. I found the people there to be friendly and helpful. We visited 2 years ago and were given a warm welcome and some helpful advice. My son Jesse is 8 with P-ACC. I am curious about the ACC Kids you refer to simply because I think that anything we can do to become more informed is wonderful.
Dygenesis in layman’s term is basically a birth defect involving the Corpus Callosum of the brain. It could be complete or partial or thinning. A term given by a doctor who does not want to give an incorrect diagnosis of ACC.
Regardless, whatever the condition of your child’s (or your own) Corpus Callosum does not change because of the terminology that is given.
Disorders of the Corpus Callosum, in my opinion, feels to generalized. Agenesis of the Corpus Callosum sounds better.