Thank you so much for your videos. Our seven-year-old daughter has complete Acc and we have known since birth. Her birthday is in 10 days and we are going to tell her shortly afterwards. She has noticed in herself that she seems to be a little bit "different" than a lot of the other kids that she knows. She was born with three missing ribs, her legs did not attached to her hips, she had a tethered spinal cord and also had to be hospitalized after her first week of life due to a severe of milk allergy. She is doing amazing now. She can ride a bike, she has friends, she is learning to read and she is actually pretty good at math too. She is the funniest little girl I know! She has an enormous imagination and is just loved by everybody at church. We are so thankful for her. God bless you and thank you again for your videos.
Hello Kathy. I’m from China and now I've already pregnant for 26 weeks. My baby has ACC.In China, most parents can’t admit their kids who has any malformation. They hope their kids good looking, have talent on study and could get good job in the future. So ACC kids will be aborted by these parents. But my husband and I are Christians, we believe God is able to do everything, who knows how the kid will be. Your video really encouragement. Thank you so much!
Hey! How is your baby doing now? I’m 27 weeks pregnant and my baby just got the ACC diagnosis. I’m freaking out and looking for others who have gone through the same thing
I just watched this and loved hearing from someone doing so well with ACC. As a parent of a child with p-ACC, it is so inspiring! Thank you SO much for posting this.
Rebecca DeFrang I am glad you liked it! Hopefully many of my videos will be helpful and/or give hope to other parents of ACCers and the ACCers themselves.
Hi, thanks for this video! I'm the parent of a 14 year old who has complete ACC, too. I suppose he would be considered high functioning, although academics are challenging for him. We found out about his condition after he was born, because they saw an anomoly on his scans while I was pregnant. He's been a bit of a challenge parenting-wise. he's extremely active and busy.
thank you for sharing and looking forward to hear from you... My son is 6 years old ACC. at this point he does not walk by himself or talk (only some words)...we are from Costa Rica
chavachris Thank you for following my channel! It is nice to hear the stories and situations of others with ACC. I hope my videos can give everyone hope and maybe some ideas on how to encourage the child to succeed the best they can. Thank you for watching all the way from Costa Rica :)
I am 20 with CACC, also considered high functioning. Always enjoy hearing about others experiences with the same condition. I would love to go to the NOCC Conference one day. I am fron the UK :)
Hi I'm Sara, I was born with C-ACC. Though when I was a baby, my parents were told P-ACC. My parents found out something was wrong with me when I was still in the womb. The doctors thought I had water on my brain, which resulted in them having to plan to get me out early, which resulted in them finding out about ACC. I'm 20 years old now, and I wish to be able to attend the NODCC meetings, but unfortuantly I can't.
+LuckyisSara Hi Sara, Its so nice to meet you. thank you for sharing a bit about your story. Its too bad you cant attend the NODCC conferences. may i ask why? They are really great. i will even be speaking at the National one coming up this July. if you have any questions about the disorder feel free to ask! I am happy to help anytime i can :)
Living with ACC Money issues. I can't really afford to go. Even though I really do want too. I can see if I can try to get the money for the one coming up, but I usually have no luck.
+LuckyisSara can you message me at kgee03@gmail.com about where specifically. I can try to find someone near you that is going and you could catch a ride with them. also i can look into an airline i know flies into chicago for only $98 a round trip ticket. they may come to an airport near you :)
Thank you!! My daughter is 12 w/ C-ACC, she is high functioning as well!! You give us so much hope :) I want to learn more about your social skills please and math!! Did u absolutely struggle with math? I know crazy questions but I am very curious!
***** Hi! i hope you saw that i did a Q and A video and tried to answer your math question :) i hope it helped! leave a comment any time if you have any other questions. I will be doing multiple videos on social skills in the next few weeks. (trying to keep my videos under ten mins so i have to break it up). Thanks for watching!
Thank you is not enough for what you do!! I was 19 when we found out about my ACC as well...us this common? I am now 37 and noticing a few changes in my medical problems that I am exploring as being linked to ACC. I am looking forward to watching more videos to learn more! Also would your NY chapter accept visitors? My husband and I live in NM but gave family in NY and I would love to meet you and 8thers with ACC.
Our New York group never turns anyone away. You and your family are very welcome to come to any of our gatherings. However, our face book page is for New York only because it’s for people close to connect. Your family in New York is welcome to be a part of that. I will look into the NM area for you. There’s got to be a group close to you that I can get you hooked up with.
Hi, I'm from Brazil. My son was born last month, and he has ACC, I think ur videos will help me how to deal with it. if u put legends of what u are saying, would help me even more.. my english is not that good. ^^ kefer doing vídeos pls!! :)
hi mam..my son has born with acc...now heis 12 years old.but he is 4th std...he can't speak properly .he has seizure he is under medication .mam i want to know that can acc kids go for special school or normal school ? pls let me know
+lakshmi lakshmi kids with acc can go to a special or a regular school. But it really depends on where the best fit is for that child. If they are high functioning a regular school may work just fine. They have Hingis like OT and PT there if the child needs it. Also, where I am from there are special education classes in the same building as the regular classes. So everyone is treated equally. But if the child needs a lot more attention they may need to go to a specialized school. Get ahold of your school district and if you are unsure where your child should be ask them if you can have him tested to see what areas he needs help in. This will help you to see what type of schooling will be if it him.
Hi my son has born with acc now he is 13 years...Just now he has completed 5th standard...as Repeated 1st nd 2nd class....His iq level is 64...He has seizer...He is under medication.doctor suggested to give remedial and behaviour therapy...Can we continue in regular school...Or in normal school...Pls reply
As much as I wish I could give you an answer to this, I am not qualified. Have you met with the teachers your child has now? My best suggestion is to see what they think. Choosing to have your child do therapy doesn’t have to effect the type of school they go to. Many kids in regular schools get therapy at the school during the school day. Since I don’t know you or your child it is hard for me to give advice on this type of question. Your best resource is the teachers who deal with him on a daily basis. Good luck. It away so feels hard to make big decisions like this but trust yourself to make the right choice.
I am not, nor have I ever been on any meds for my ACC or any other issues. I am not sure what your definition of “a normal life” is hat you are looking for an answer too. What I can tell you is that many high functioning acc adults are independent in a variation of ways. Others are a bit more dependent but still lead happy lives, where they may need some assistance but have areas they can be independent in.
+Daine Farrell I am not on any medication. I have never had to take medications on a regular basis due to my ACC. I am prescribed a nausea medicine for headaches because at one point they were very severe and I couldn't get rid of them but that was about a year ago. I only take it when I get nauseous, which doesn't happen much anymore. I rarely get headaches because I have learned what triggers them for me. I have no other issues other then the ACC.
Thank you so much for your videos. Our seven-year-old daughter has complete Acc and we have known since birth. Her birthday is in 10 days and we are going to tell her shortly afterwards. She has noticed in herself that she seems to be a little bit "different" than a lot of the other kids that she knows. She was born with three missing ribs, her legs did not attached to her hips, she had a tethered spinal cord and also had to be hospitalized after her first week of life due to a severe of milk allergy. She is doing amazing now. She can ride a bike, she has friends, she is learning to read and she is actually pretty good at math too. She is the funniest little girl I know! She has an enormous imagination and is just loved by everybody at church. We are so thankful for her. God bless you and thank you again for your videos.
Hello Kathy. I’m from China and now I've already pregnant for 26 weeks. My baby has ACC.In China, most parents can’t admit their kids who has any malformation. They hope their kids good looking, have talent on study and could get good job in the future. So ACC kids will be aborted by these parents. But my husband and I are Christians, we believe God is able to do everything, who knows how the kid will be. Your video really encouragement. Thank you so much!
Hey! How is your baby doing now? I’m 27 weeks pregnant and my baby just got the ACC diagnosis. I’m freaking out and looking for others who have gone through the same thing
I just watched this and loved hearing from someone doing so well with ACC. As a parent of a child with p-ACC, it is so inspiring! Thank you SO much for posting this.
Rebecca DeFrang I am glad you liked it! Hopefully many of my videos will be helpful and/or give hope to other parents of ACCers and the ACCers themselves.
Thank you so much for your honesty.
Hi, thanks for this video! I'm the parent of a 14 year old who has complete ACC, too. I suppose he would be considered high functioning, although academics are challenging for him. We found out about his condition after he was born, because they saw an anomoly on his scans while I was pregnant. He's been a bit of a challenge parenting-wise. he's extremely active and busy.
Thanks for starting this series.
thank you for sharing and looking forward to hear from you... My son is 6 years old ACC. at this point he does not walk by himself or talk (only some words)...we are from Costa Rica
chavachris Thank you for following my channel! It is nice to hear the stories and situations of others with ACC. I hope my videos can give everyone hope and maybe some ideas on how to encourage the child to succeed the best they can. Thank you for watching all the way from Costa Rica :)
Excellent video! I am looking forward to hearing more of what you have to say.
Mary I. Thank you!
I have PACC myself and was diagnosed in the mid to late 90's.
I am 20 with CACC, also considered high functioning. Always enjoy hearing about others experiences with the same condition. I would love to go to the NOCC Conference one day. I am fron the UK :)
My CACC is isolated
Great video!!!!
ACcuberSam Thanks!
I found out i had it at age 44,im 53 now. Its hard to find a doctor to treat adults with ACC.
Hi I'm Sara, I was born with C-ACC. Though when I was a baby, my parents were told P-ACC. My parents found out something was wrong with me when I was still in the womb. The doctors thought I had water on my brain, which resulted in them having to plan to get me out early, which resulted in them finding out about ACC. I'm 20 years old now, and I wish to be able to attend the NODCC meetings, but unfortuantly I can't.
+LuckyisSara
Hi Sara,
Its so nice to meet you. thank you for sharing a bit about your story. Its too bad you cant attend the NODCC conferences. may i ask why? They are really great. i will even be speaking at the National one coming up this July. if you have any questions about the disorder feel free to ask! I am happy to help anytime i can :)
Living with ACC Money issues. I can't really afford to go. Even though I really do want too. I can see if I can try to get the money for the one coming up, but I usually have no luck.
+LuckyisSara
lets see if i can help get you there! first, where are you from?
Living with ACC I'm from Connecticut.
+LuckyisSara can you message me at kgee03@gmail.com about where specifically. I can try to find someone near you that is going and you could catch a ride with them. also i can look into an airline i know flies into chicago for only $98 a round trip ticket. they may come to an airport near you :)
Also have acc I never met anyone else with it just keep seeing UA-cam videos of people
Thanq mam
You’re very welcome
Mam please reply me I am pregnant recently my scan reports my baby having Acc please reply me
Thank you!! My daughter is 12 w/ C-ACC, she is high functioning as well!! You give us so much hope :) I want to learn more about your social skills please and math!! Did u absolutely struggle with math? I know crazy questions but I am very curious!
***** Hi! i hope you saw that i did a Q and A video and tried to answer your math question :) i hope it helped! leave a comment any time if you have any other questions. I will be doing multiple videos on social skills in the next few weeks. (trying to keep my videos under ten mins so i have to break it up). Thanks for watching!
Thank you...is there a FB page for New Jersey families?
+Gloria M Ron-Fornes I am not sure. Are you part of the Moms of the NODCC page? You can ask on there.
Thank you is not enough for what you do!! I was 19 when we found out about my ACC as well...us this common? I am now 37 and noticing a few changes in my medical problems that I am exploring as being linked to ACC. I am looking forward to watching more videos to learn more! Also would your NY chapter accept visitors? My husband and I live in NM but gave family in NY and I would love to meet you and 8thers with ACC.
Our New York group never turns anyone away. You and your family are very welcome to come to any of our gatherings. However, our face book page is for New York only because it’s for people close to connect. Your family in New York is welcome to be a part of that. I will look into the NM area for you. There’s got to be a group close to you that I can get you hooked up with.
Hi, I'm from Brazil.
My son was born last month, and he has ACC, I think ur videos will help me how to deal with it.
if u put legends of what u are saying, would help me even more.. my english is not that good. ^^
kefer doing vídeos pls!! :)
+Matheus Oliveira Silva
I will try to put something at the bottom of the screen so you can understand it more easily :) thanks for your input!
hi mam..my son has born with acc...now heis 12 years old.but he is 4th std...he can't speak properly .he has seizure he is under medication .mam i want to know that can acc kids go for special school or normal school ? pls let me know
+lakshmi lakshmi kids with acc can go to a special or a regular school. But it really depends on where the best fit is for that child. If they are high functioning a regular school may work just fine. They have Hingis like OT and PT there if the child needs it. Also, where I am from there are special education classes in the same building as the regular classes. So everyone is treated equally. But if the child needs a lot more attention they may need to go to a specialized school. Get ahold of your school district and if you are unsure where your child should be ask them if you can have him tested to see what areas he needs help in. This will help you to see what type of schooling will be if it him.
Hi my son has born with acc now he is 13 years...Just now he has completed 5th standard...as Repeated 1st nd 2nd class....His iq level is 64...He has seizer...He is under medication.doctor suggested to give remedial and behaviour therapy...Can we continue in regular school...Or in normal school...Pls reply
As much as I wish I could give you an answer to this, I am not qualified. Have you met with the teachers your child has now? My best suggestion is to see what they think. Choosing to have your child do therapy doesn’t have to effect the type of school they go to. Many kids in regular schools get therapy at the school during the school day. Since I don’t know you or your child it is hard for me to give advice on this type of question. Your best resource is the teachers who deal with him on a daily basis. Good luck. It away so feels hard to make big decisions like this but trust yourself to make the right choice.
Hi mam...Are you on any medication now?....Mam can acc kids lead a normal life?
I am not, nor have I ever been on any meds for my ACC or any other issues. I am not sure what your definition of “a normal life” is hat you are looking for an answer too. What I can tell you is that many high functioning acc adults are independent in a variation of ways. Others are a bit more dependent but still lead happy lives, where they may need some assistance but have areas they can be independent in.
Are you on any medication....do you have any poblems bi-polar or pychosis...
+Daine Farrell I am not on any medication. I have never had to take medications on a regular basis due to my ACC. I am prescribed a nausea medicine for headaches because at one point they were very severe and I couldn't get rid of them but that was about a year ago. I only take it when I get nauseous, which doesn't happen much anymore. I rarely get headaches because I have learned what triggers them for me. I have no other issues other then the ACC.