Living with ACC - My Childhood
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- Опубликовано: 2 май 2015
- My website: www.alittlebitofsprinkles.com
Please let me know if you have any questions or feedback in the comments section below.
Potential topics for upcoming videos:
- Elementary through college school tips
- how to get through a day
- things I practiced to help with social interactions
- sports: horse back riding, golf, running, lacrosse
- my job experiences
- being a special education one on one teaching assistant
- Becoming a wife
- Becoming a mom
- Struggles I have as a mom with ACC
- Struggles I have a mom of a child with ACC
I have ACC, and I'm 26 years old. I had developmental delays as a child (from needing physical therapies to speech therapies, vision therapies). For any parent reading this (pertaining to your child that has ACC) that it will be okay. While I have a mild form of ACC (and schooling was difficult for me growing up), I feel as normal as anybody else. I'm married, and have a college degree. As an adult, I still do sometimes deal with social-interaction issues. However, ACC doesn't define me. I'm not my disorder. Great video.
Great words to put out there for parents to see!! Thank you!
Hi my son was born with a cleft lip and plate he had many surgery to repair his cleft and he look amazing now but he also developed delays he is non verbal and his corpus callosum is very thin, so because of that he has Seizures so the doctor said if they move the corpus callosum it will 95% stop the seizures. I am praying that he will be able to speak and have some independence. He is now 11years old
@@austinerolle5184 I'm so sorry to hear about your son. Going through life having ACC has taught me so much (now that I'm 27), but I want you to know that your son LOVES YOU (even if he can't fully express it verbally). Growing up with ACC has taught me to view life and others with compassion, and understanding. I don't take anything for granted because God gave me another day. I will pray for your son.
happy for u
U r so brave god bless you
HI, My daughter is four and she has complete agenesis of the corpus callosum. She is super smart and talks really well now even though she started talking late but my son talked late as well and doesn't have anything wrong with him. She isn't potty trained yet but we're working on it. She didn't walk until she turned three and that was with intense pt. She is very headstrong. She is affectionate and very happy. I don't feel like she is much different than other children her age.
I was born with ACC. I am a very rare case because I was born with the ACC completely missing yet I am high functioning I do sometimes struggle with the social aspect of things and math I can't even fathom. No one can tell I have ACC unless I tell them I am now 28 years old married and a mom of three children. Growing up with ACC was not always easy they had me in special needs classes even though I felt like I didn't quite belong because I was so high functioning but I could not handle a regular classroom thank goodness for middle school and high school because they had recreational classes which is classes in between special needs and regular classes. And because I had such great teachers growing up I was able to learn and grow into the functioning woman I am today. This disorder has never held me back it's always just been something I have.
hi, my name is alex, and i to have ACC i was born with out one and always felt lost and all my life ive had this issue with TEXT, and the lack or understanding just about anything, everyone would have to repeat what they said at least 3 to 4 times for me to at least have some sort of understanding and still not always worked. and sadly i was the guy who got an award for being the dumbest in my year(students voted), yet im here todaty at the age of 31, i know 3 languages, also a graphics designer/ artist/ programmer/ yet i still cant spell or or read very very well. yet im still here my IQ in program solving was top %5 of hte smartest people on earth but the logical side of the IQ that was reading and rewarding word that where given to me. and i was bellow %20 so my score in that was like a 20/150 so i was pretty limited when it came to logical side of things . yet i some how have photgraphic memory and im shit at calculating numbers but good at mesmerizing numbers, so till this day i still know my home phone number(s) as a child and it changed 5 times in my live and i still remember all 5 ? and still have no idea y or how ?
i really though i was alone here before watching this video, its made me happy to see this in another person eyes with the same issues i have. yet you are not wrong. we have missing peace of our brain, yet we can do just about everything the avarage person can and we use less of out brain to achieve the same result. thank you so much for this video i really needed to watch this.
That's horrible that they voted you the dumbest person! There are all types of intelligence in the world. Your story is amazing.
I’m a web developer :)
You have no idea how grateful and happy I am for your story. My wife and I just received news that our unborn daughter has ACC and it's safe to say, we are at a loss. This gave us hope. Thank you!
how is your daughter now?
How is your baby now
Hi we have just adopted a little girl with ACC and look forward to watching your videos to educate myself so that I can give my daughter the best start and best understanding. Thank you
Can I just tell you how happy I am for you. I found out last week that my unborn baby girl has complete ACC and I was devastated and scared of the unknown because there’s so little information on this topic but your story is so inspiring.
My daughter has ACC and when we found out, these videos were so helpful. ACC is so variable in how it manifests. So it was nice to have a frame of reference
Thank you for this amazing channel, I am from Libya ,and I am a mother of 2months boy ,who was diagnosed intrautrine with hydrocephalus, then after he was born CT brain revealed that the diagnosis is Isolated CACC, I am really feeling down because the fear of unknown is chassing me all the time,furthermore there is no special schools or centers for these cases in my country🌸🥺
@Luna Halla Having a mom who very obviously cares and will be there for him is going to make all the difference. He has you to teach him, you to advocate for him, your baby boy will be just fine. You can feel your love and concern for him just from this little comment, so many babies, condition or no, aren’t lucky enough to have that and it’s the most important, beautiful thing you can give him. Keep fighting for you sweet little one and do your best to remember to take a breath for yourself when you can! Have you ever watched the RUclips channel SBSK? They do interviews with people and the families of people with different conditions and have done quite a few on ACC that would be a great place to maybe get more info or even get in touch with other moms!
I have 2 kids a boy that is 6 and a daughter who is 3 and they both have ACC. My son started reading before 3, and taught himself how to tell time at 3. My daughter is incredibly bright. They do need time to process things, but the are very perceptive and have learned how to read people and situations. They do have motor delays, but they are working through them. I am glad I came across your channel. I am curious what obstacles they may encounter in the future, so that we can be mindful and help prepare them for it.
hi, im a 31 year old with ACC, and im here to say you kids are little geniuses, i alone can some how memorize numbers but i cant calculate, i cant read or write very well, i know 3 diferent programing languages, and i can play about 4 musical instruments and im also a graphics designer. so just because they dont process like others it does not mean anything At all, the system makes us feel lost because they have no idea how to teach us but yet we some how end up teaching out selves and that alone is beautiful. still to this day i fail when it comes to writing essays but my work speaks for it self, so im not worried much about what i cant do because sooner or later i will figure it out. so keep up the good work with your children.
sorry in advanced if i don't make any sense
I'm so grateful, that you said you realized you were not stupid. That's exactly what I told my family and friends after being diagnosed with ACC at 40.
My 16 year old daughter has Partial ACC and is high functioning. Her fine motor skill are still a little delayed. My daughter Meg has an amazing memory and never forgets someone’s name. Watching her sometimes still amazing me on how far she has come. She has learned social skills by watching her friends. For example, they laugh she’ll laugh. During the last school year Meg flipped out. There was never any warning she’d just strike anyone in her path. I ended up losing 52 pounds and my blood pressure shot up too195/100. I’ve looked into Therapeutic Boarding Schools so Meg can get the help she needs. I’ve exhausted all the resources in my small town. I believe what Megs main problem is now is that she’s becoming more aware of her limitations. This has got to be very frustrating for her. I’ve explained her condition countless times. Meg will go to college but I’m not sure if she’ll ever drive a car. I learn more and more about services that can help her once she’s an adult but in the mean time we just wait and see. Be blessed none of us are alone😊
Thank you for sharing. I am so frustrated as a mom of a 15 year old boy with partial ACC - there is so little information and so little attention from our doctors. He is so functional and smart and talented that they tell me not to worry. But I see his anxiety and perfectionism etc. I want to help him - thank you for this
What resources did you end up finding? I just found out my 3.5 mo old son only has part of his CC.
Hello
Nice Video thank you for your video, My Name is Michael, I had a fall a week ago, and being a heart attack and double bypass heart surgery survivor, I had to stay overnight in the hospital, I had to have an MRI done to x out bleeding on the brain, while waiting to hear results, the nurse comes in and says "did I know I was special" that i am 1 of 4000 that have a quarter of their brain missing!!!! And it is called ACC, I joked and said i knew i had some screws loose lol. She said seriously that it's true, I was stunned and well rather scared and being 49 years old it really set me back. I was rolled back to my room and then the remainder of my stay I researched ACC and had to go back to my childhood which was rough growing up to sit and cypher all I could remember as a child to growing up to understand the special child, son, brother, grandson, I was always told I was without knowing anything. I felt something wasn't right as many things as you discussed about school and more. I'm defining it for now until I get a better understanding I see my primary Dr. Tomorrow to follow up on my fall, heart, and will discuss this ACC with him to see if they will help me further or send me in a direction to seek help for it. Most of my family is deceased and the secrets went with them so now I'm on my own to seek the knowledge of my special self. I do however thank God I'm not alone with this. I'm on Facebook and several off the ACC groups and on NORD also. Thanks again for sharing your story.
Thank you for your strong beautiful words. My granddaughter who was born on 8/18/20 has been diagnosed and so nice to hear about your life with this. I will share your video with them and continue to watch and learn!
Sandy
Sandra Bergdale hello! Please make sure to visit www.nodcc.org. It’s the national organization for this disorder. I am even on the Board of Directors for it! My committee I am the executive chair for has been running zoom calls every couple weeks for different age groups. We just had one for parents and guardians of newborns! There will be another call for them again in a few weeks. You and your family should join it! If you are on Any of the Acc Facebook sites, I advertise all the zoom calls in many Acc groups there.
Just found your channel and subscribed. I have a 2 y/o boy with acc and no apparent associated conditions. We have noticed a higher pain tolerance and a certain level of hyperactivity, which could certainly be normal and unrelated. His never cried more than normal and his motor functions are actually developing faster than his sisters did. We are thankful, but never know what to think when we read about it and none of it seems to apply. Hearing about others experiences is so reassuring. Thank you for doing these videos and sharing your experiences.
+Justin McCartney it sounds like he is doing great!
Are you in a constant state of worry? When you think about his future, how different is it from how you think about his sister's?
i am romanian we got the same acc and i okay i can speak 3 language as italian ,romanian and english and now i want to learn the fourth one pace
Thank you so much for sharing your experience. I'm a mother of a 3 year old precious little girl with P-ACC. We're hoping she can walk and talk soon.
Sorry to hear that. Is she walking now?
I work with Lynn Paul! I'm a student at Caltech. Thanks so much for this video!
Keep spreading hope just the way you did here.
I just delivered a baby with ACC and other anomalies, I was at loss initially. I labored her pre term. And she survived with no life support(even without an o2 support) this surprised all of the doctors and made them call her a miracle baby!
She has no vision and we will know about rest of her delays may be during the development stage.
But I hope really really hope she shows no issues in future.
Seizures is something I worry of the most.
Thank you so much for doing this! My son just turned 12 and has ACC. He is high functioning but has issues with social situations (not knowing when to stop talking) He also has some issues with math. Your video is so encouraging to me.
My wife is pregnant and we just learn the Fetus will have Partial ACC , your video really make my day. Thank you
+Martin Durand
Hello Durand Family,
I hope all is going well. Congrats on your soon to be little one :) Please keep in touch. i always love to hear about how the little kids are doing since my daughter who is two also has ACC!
My husband and I are having our first child, due next month and today we found out he has ACC. I was crying when I arrived home but these videos are helping very much, thank you for posting and everyone's comments are insightful.
@@sheilashadiamusic how it's going now with your baby? My wife is pregnant with acc fetal and any info is really appreciated. Thank you
My son has complete ACC, too, and he is always complaining about the sound in the classroom and how he is distracted. He has difficulty concentrating during tests.
Do you realize how great you seem to me? I've seen ACC only with disabilities in thinking, and in abilities to make good decisions because of prefrontal lobe loss. You are amazing!
Thank you!!😍
It could be that binaural beats like Holosync and techniques like image streaming can help strengthen an underdeveloped corpus callosum over months to years of daily practice. It certainly works that way in "normal" cases, but there are cathartic emotional releases that come with it now and then. Sometimes its euphoric too though.
Thank you for sharing. Our 12 year old daughter has CACC. We have had a difficult past couple of years with her. She has an extreme victim mentality. She thinks people are upset with her most of the time and feels like no one likes her. She doesn’t like to be told if she is doing something wrong. She tries to argue her way out of everything and not accept blame or apologize for things. Her only friends are her older sister’s friends. I think God for them and that they include her despite the way she is. Unfortunately, they will all be moving on in life soon and our daughter will be left without any real friends. I just pray constantly for her and that life will get easier.
Did u use any medicine treatment ?!
i hope my girl turn out great.i find out my self at 4 months that something is different about my girl.we vent in hospital at 5,half months they did scan so was corpus colosum didn't developed small part.that was scare me.
you have made me so hopeful my grandbaby has Acc she is beautiful ans sweet ans very energetic but she will be two in December and has yet to speak. she has great hearing since she had tubes placed in her ears. if you dont mind me asking how old were you when you started speaking. you are amazing for making these videos and I thank you.
First, please remember that everyone develops at their own rate. Even "normal" children can't be compared to each other for when they start to do certain things. That said, I said my first word around 9 months old. But if you ask my siblings they always say that I "came out talking. And never stopped"! My daughter who also has ACC is two years old and said "hi" and "E-I-E-I-O" (when I sang old macDonald) at 11 months old. We are rare, I think, in that we talked early and we talk a lot. Knowing how ACC can effect someone my husband, older daughter and I made it a point since her birth to "make " her talk. I think I describe a few ways we do that in one of my videos :) maybe that could give you some ideas to try with your granddaughter. When were the tubes placed in her ears? If it was recent I would keep after her but be patient while she gets use to hearing the sounds around her more clearly and words may eventually come. thank you for writing me. I hope this helps! Thanks for watching my video.
Thank you so much for responding to my questions and as when they had placed her tubes in her ears it was very recent like two months ago. She started to babble and she smiles that beautiful smile so much more. She likes to do things and play on her own and if you ask her to give you something she wont respond but she will take something from your hand. She does pay attention to someone if they are doing something with toys on the floor and she will want to play with it but not play together. She also has a speech therapist that visits once a week but she does not want anything to do with her to much. She is extremely attached to her mother which i love and my daughter shows her so much affection. I love her so much i hope and pray for her to have a happy and normal life. I think she is doing well so far. I have notice that there are only two people that have ACC and are speaking about it and helping us to better understand it. I thank you so much from the bottom of my heart.
Are you doing amymore UTube videos for the year 2022-2023??
OMG, the same placenta tear happened to me and I just found out my 31 year old son has this.
That is very interesting!!
i really suspect that I might have acc. I have been diagnosed with adhd and bipolar, but I never felt that these diagnoses fit or explained enough. I always had problems with coordination and with school work, there were very few things i was good at as a child. I managed as a C student, as a child i was diagnosed with boarder line mental retardation but my parents didn't buy it and it is a incorrect diagnoses for me. Thing i pass as high functioning untill people take a closer look at my life. I would love to get a mri but i don't know how to get about ferrying one or finding a neurologist or doctor that would belive me. If I do not have ACC, o at least would like it ruled out. regardless thank you for posting this. this was very educational and i aprecate learning about ACC.
+Haruki Inugami to get an MRI all you have to do is schedule a doctors appointment with your regular doctor. Tell them your concerns and tell them you want an MRI done. They should then very easily set you up with one
Hi I’m was also told the same about my ACC which was found 13 yrs ago, I also have a lipoma in my spine a tethered spinal cord and a hole running through the cord, I am only really learning more about things as for some reason it’s popping up all over my social media , back when I was told there was nothing and again the drs didn’t know, I am learning so much about myself seeing hear videos and it’s been hard as I am now 47, but I’d like to understand more. I have 3 sons, two which are adults and have never been checked for ACC but have similar problems and traits as I do, so could this be genetic ?
Yes, it can be genetic. It’s definitely something they should look into if you feel they have a lot of the same traits as you.
and i am 29 life goes on :P
I am 22weeks pregnant an found out my baby has ACC, an I am not going to go through with the pregnant the dad does not want his first child to go through this. I am scared that I am terminating but I can’t deal with the disabilities or dealing with it alone..
It’s okay to feel that way and to make that choice. 💗
You are a lovely and a vibrant person, without a brain part!
Thank you so much 😊
Hello, I am pregnant and doctor told me the fetus have ACC, I live in Africa where we don't have a high standard medicine to continue to treat my baby well, and they advise me to determination the pregnancy. what can I do for my baby? please help me. thanks
+bite salama ACC is a large spectrum. Does your child have only ACC with enlarged ventricles? ACC alone only causes learning delays and social issues. Which there is a lot of ways to get them help for (if they even need it). I was told I could “terminate” my pregnancy also. I am glad I didn’t! She is four now and very high functioning. Perfect in every way! I cannot tell you what to do since I am not a doctor and I don’t know your situation. There are options like a fetal MRI before the baby is born to check for other brain abnormalities. But it isn’t always a safe option. You could ask your doctor. Another option is to have an MRI done on the baby shortly after birth. That’s what we did. Also, have the doctors keep an eye on the ventricle levels. There is a normal range for an ACC brain that is higher then a typical brain person. My daughters levels are 17 and 21 to give you an idea. They stopped going up before she was born so we don’t worry about them. If a child’s levels keep going up you may want to research shunts. Hope this helps. Keep me posted. Feel free to email me at livingwithacc@gmail.com (This way your personal information and questions can be kept from everyone seeing on my site)
I also live in Africa/Middle East (Egypt) and was wondering the same thing, I never heard of ACC until today when my fetus was diagnosed also so I guess asking the doctor's option will be useful.
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