son with ACC
I have two children: Francis (2003) who is typical developing, and Stella (2006) who has C-ACC. I also participate in the ACC-ListServe.
Hi there my name is Christine my daughter Jamie Lynn age 4 has ACC and ASP. She is doing very well and learning at her age level. Her health is also doing great has well. Although all is well know it was not that way in the beginning im thankful to all the resources that we had and finding out early i feel helpled Jamie out. I am happy to answer your question if you have any
My son has been diagnosed with ACC two years go. I would like to know more about their strengths and weaknesses. I know kids with ACC act differently.
my unborn son was diagnosed with this condition
Hi, My son Kaleb (12) was born with C-ACC … he had a hard time of it in the beginning but grew to be a happy boy… but here lately he has become violent towards himself and has been placed on meds… I know this type of behavior sometimes comes with the condition but any help in curbing his “tantrums” would be helpful… Thanks
My 2 yr old daughter has ACC, and I enjoy speaking with other parents about the condition.
My name is Christie and I am a stay-at-home mom of two. One daughter, Drew, almost 9, and Jonah, will be three in just two weeks. Jonah was diagnosed with ACC at 6 weeks old. We brought him into Children’s emergency room because he had a hard lump in the middle of his head. A CAT scan showed that to be craniosynostosis which was repaired a couple of months later. The CAT also showed the ACC. A MRI the next day confirmed it. I went through all of stages I’m sure everyone else here has gone through. I lived online looking for any drop of info on the diagnosis. It is so incredibly hard to label a certain “type” of person with this. In the meantime, Jonah was hitting his milestones normally, even walking two weeks ahead of his big sis. When Hurricane Katrina hit, of course, we had to leave our home and that was, in a way, a blessing for me because I was able to break from the internet and just enjoy Jonah. (Our house was unaffected thank goodness) Jonah is in a mothers day out program 3 days a week and absolutely the most verbal and happy child in the class. We are so proud of him. I am looking forward to reconnecting with everyone. Sincerely, Christie Dannewitz
My 3 1/2 yr old son has Hypoplasia of the corpus callosum. I would like to learn more about what his future will hold.
Hi I am 31 year old stay at home mom who has a 18 month old son that has C-ACC.I am here to learn and to meet other families with ACC.I would like to meet others and be able to talk with people that have this issuse dear to their heart.
I am a mother of a 2 1/2 year old girl that has dysgenesis of the corpus callosum, as well as underdevelopment of other parts of her brain, optic nerve hypoplasia, and nystagmus.
My son has thinning of the corpus callosum along with sotos syndrome.
I have a son that has agenesis of the corpus Callosum and would like to meet other parents and families in a similar situation.
My son was born with ACC. He is 18 months old now. I am interested to see how or if this will affect him in the future.
I am mom to Jesse (8 year old son) who was diagnosed with P-ACC at the age of 3. I am interested in learning more about ACC and P-ACC, helping to find support in various ways, connecting with children and adults who have ACC or P-ACC so that we can all better understand this condition and encourage each other.
My son Benjamin has ACC along with midline cysts. He just turned two.
My son, Rafi has cc dysgenesis and multiple other anomalies. He’s a bright, stubborn, partly uncoordinated 9 yr old who wasn’t supposed to survive and is still proving the docs wrong. We just went to homeschooling this year after trying both public and charter schools. I am a former member of the acc list which I found to be vindictive and an unfriendly place. I’ll give this one a shot. Hi to any oldtimers who might remember me from the 2000 and thereabouts family oriented gatherings.
Oh yes, and since I left acc list I have been labeled an Aspie…leaving open questions about the status of my CC and answering many…
Jane in MN - rafismom
My son Rafi was born with multiple anomalies in 1997. Incidentally, they found he didn’t seem to have a CC…later the diag was switched to partial cc-thin, with ONH, which of course only impacts his vision enough to be a small problem but not to qualify him for any help. I have 4 older kids too, who are all now young adults and the entire family apppears to be on the autism spectrum somewhere…so I have little patience with the eliminate autism now nonsense that is all over the Net…don’t even start with that please.
Rafi has beaten the odds so far. He is verbal, active, happy and stubborn. Biggest challenge seems to be fine motor (writing especially, though he is learning to keyboard) and sensory, including the toilet thing (any of you have kids who LIKE the feel of poop on their bottom?). He reads at grade level at least, is very bright and a good problem solver, and biggest academic problems seem to be in math. At this time I have begun homeschooling and his last school did not work and play well with mommies so I am still finding out what he actually knows.
We have just gone through eardrum reconstruction this spring, and are waiting to see if hearing has been regained.
I am an officially single parent with limited financial resources but muck along the best I can. CHck out what i do when not focusing on Rafi at www.janesprints.com.
Jane in MN
My name is Michelle Jasperson and my son Bailey has a thin CC. Along with a thin CC he has multiple other diagnosis and I do not have a support group for help.
I have a student in my special education classroom who has this disorder. I would like to learn more about how to help him!