Are there any members of this group that has a family member with complete ACC? If so, how old are they and how are they doing today?
Hi. We just found out that our 6 month old daugther has PACC.What can we expect? The sad thing is that her older sister has Cerebral Palsy…
My son has complete ACC he is now 8 months old. He is doing well. He doesnt have any other abnormailities or any of the other syndromes associated with the disorder though. He has been in early childhood intervention since he was 6 weeks old. They come and work with him 3 times a month, including physical and occupational therapy. We work with him everyday to ensure he continues to meet his milestones. I have met others that have said one of the hardest things to teach or learn with acc is walking, many dont walk until 2 years or older. So we are always working with him. He is getting ready to crawl soon, he gets up on all 4s and rocks back and forth now. He was rolling over by 2 1/2 months. He is doing great. I know that he is not that old and I cant give you a whole lot of info yet. But hope this helped.
I just read your profile and found that your son is now thirteen, can you tell me how things have gone for him? Does he have other issues or other genetic disorders associated with this? How does he do in school? Have ou encountered a lot of problems with Complete ACC? I am constantly trying to meet other parents and get information for my son. I am also trying to get the funding to go to the Disorders of the Corpus Callosum conference in Dallas in July, from the NODCC. I think that will be a great way to network and meet others as well as get info. It seems that so little is known about this even still. Are you going to the conference?
HI, Robin! Thank you for your e-mail. I will be at the conference on Saturday and Sunday. Actually, my daughter, Lindsay McGinley, is one of the speakers in the financial part of the program. I did not even know there was a network of people who had family members with ACC in their families until Lindsay told me about this conference. I wish I had this support when Anthony was younger.
My husband and I adopted Anthony when he was only three weeks old. His birth mother was single and had chosen adoption early on in her pregnancy. This was before she knew about the ACC. I believe she knew when Anthony was in utero, but did not know the extent. The agency told us that every child with ACC is different and we would just have to take one day at a time and see how he progresses.
Anthony has gone through the milestones that my other children have gone through, only at a much slower rate. He walked shortly before his third birthday. I remember that clearly as I was pregnant with my youngest son at the time. I prayed that God would let Anthony walk before Elijah was born in 1997. Anthony walked a couple of months before Elijah’s birthday.
Toilet training came a bit slower. By five Anthony was okay in the daytime. He just took a bit longer in controling his overnight wetting until around nine. But, now he has that all under control and does well.
Anthony does not have any other disorders outside the CACC. Related to the CACC, he does have siezures which are controled with medicine. He had the seizures until he was four or five. Then they stopped completely with the result being that he did not have to take medicine for about six years. Then, when he reached puberty, the seizures started again.
Anthony has difficuty with his motor coordination. For example, he would have trouble in an excercise class where he was asked to touch across his body or twist from side to side. But, he walks well and can run slowly. He does not ride a bike or anything of that nature.
He speaks in sentences and communicates his needs well. He has a great sense of humor and is quite funny. For example, the other day I wanted to borrow his portable CD player while I was running. He brought it to me and I asked if he knew if there was any way I could attach it to my waist while running. He said that no, I couldn’t do that but that “the CD player does open easily.” I thought that it was good that he felt it important to say something positive about his cd player.
Anthony does have some repetitive behaviors, mainly he likes to clap quietly and move his head back and forth. He is incredibly musical. Actually, he sang long before he talked. He knows tons of lyrics to songs and loves to sing. Many of my children are musicians, so Anthony has always been surrounded by music. That has enhanced his life tremendously and gives him so much happiness.
I have always had a strong sense that there is so much inside Anthony that he just has trouble expressing. Everything he says makes total sense. He behaves normally in every way, just at a slower pace than my non-challenged children.
I homeschool Anthony. I homeschooled all my children until somewhere between seventh or ninth grade. I have a master’s degree in educ. so I had a strong background in that area and believe I do a good job. Right now I’m working with an umbrella program in California called the Alamaden Valley Christian Academy. I work with a woman that has her master’s degree in special ed. She helps me with Anthony’s curriculum.
Anthony is much loved by all my other children. Until Lindsay told me about this conference, I did not know anyone that personally had contact with children having ACC. I am looking forward to meeting other people. I am frankly amazed at the adult profiles I read about those who did not learn they had ACC until they were grown. I can barely imagine that and am thankful that at least, I knew something about the disorder from the start. I am greatly encouraged at reading other profiles.
Hope this helps. I hope I see you at the conference. I need to get my registration in.
Please feel free to contact me at any time. My e-mail address is: s_j_mcgin@yahoo.com.
My address is: Sarah McGinley, 1720 E. Highland Rd. Waxahachie, Tx. 75167. Phone number: 214-289-2434. It would be a pleasure to talk with you any time.!
Best Regards,
Sarah
RobinMartin agenesiscc-cpt3554@lists.careplace.com wrote:
Salisbury,
I am a member of this group and I have complete ACC. I was just recently diagnosed in February of 07. I am 36 yrs old. I have graduated high school, and college as well. Obviosly we had no idea I had this brain disorder until my 30’s but I have realized some areas looking back that I could have used help in during school years.
I struggled with math and also social studies/history, throughout school. Also, as I transitioned to adulthood, I am finding it more difficult to process my thoughts when speaking, I have my so-called “brain pauses” where I sometimes search for words. I am easily frustrated and am very sensitive emotionally. Pretty much have been all my life. I am also not good with eye contact and social cues in social situations which tends to make me somewhat of a wallflower in social settings/parties, but I can get through them at this point in life.
Otherwise though, I do pretty well. I tend to communicate better in writing though, than when speaking, simply because I don’t have to process things as fast as when I am talking with someone. I am working with a therapist on recognizing social cues/expressions and also other ways of expressing myself that won’t cause me so much frustration. So far it has gone well.
Let me know if I can be of any other help or e-mail me privately if you like.
Dori
My son is 2 and 1/2 and like so many others it seems, i am always interested in hearing how others cope and develop with this issue. My son has complete ACC and has met all of hi s developmental milestones though has been at the tail end of “normal” with crawling and walking. He is a character though…charming and funny, has a good sense of humor and likes things to be right…put back in their place and tidy (so do I so I don’t know if this is just learned behavior or part of ACC stuff). We learned of his condition at birth…prior to that we were told it was hydrocephalus. When he was 5 weeks old we were told he would probably never be strong enough to nurse (he did and thrived for 9 mos.!), never sit up, crawl, walk etc. Obviously, the doctor that nearly broke our hearts was very wrong. In fact, he is no longer with Children’s Hospital of Phila. Speech is an area where I am seeing the largest gap compred to his buddies and general peers. He no longer qualified for early intervention services from the state at age 2, but I am sure would be delayed enough again at this point. He’s had OT, PT and speech at one time or another. Though he has no accompanying syndromes, he does have adducted thumbs…the tendond did not grow in his thumbs so while he is able to grasp things and hold a cup normally, this could cause fatiguing quickly when he begins writing. Anyon else’s child have the thumb issue? If so, did you opt for surgery to correct it?
My son will be two next month. He has complete ACC and was also diagnosed with Colpocephaly which the neurologist described as mild and something of a by-product of the ACC. He has a few related issues that I would consider minor, but nothing that requires medication.
He started nursing at six weeks old and still does a few times a day. We have had early intervention therapies, starting with PT and then adding OT and speech, since he was three months old. We are just finishing eight months of tx with a second OT who is ceritfied in functional vision tx. (My son has intermittent esotropia, common enough with ACC but I believe it was made worse by the brain bleed he experienced at birth).
He is not walking or talking but he is the fastest crawler the church nursery workers have ever seen. He started crawling at fifteen months old. We are working on walking; my son wears orthodics for ankle support and we’ve just borrowed a pediatric walker. He signs for more and follows some directions, and through our play routines we can see he understands more than he can express.
He is a problem solver and works around his limitations. He has always been motivated and curious. We are seeing another burst of new behaviors right now that are very exciting! It’s obvious he’s making some connections. One thing that I have always noticed has been his social awareness and attachment to us, and now to other special people in his life.
We were not given much hope by the neonatalogist when he was diagnosed at five days old. I am thankful for communities like this one, where real people can share their stories.
My seven year old daughter has complete ACC…she is mainstreamed in school, still in pull-ups, has private speech therapy, and consistently performs in the lowest percentile in class…but I’m thrilled that she is in the same school as her siblings, and she seems happy at school.