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Aw, you're so lucky to have had that sister who took care of you! I can absolutely identify with feeling bullied and excluded, it was awful. ☹️ I was bullied heavily throughout my elementary and high school, it left many deep scars. I have complete ACC too. That's some great advice for your daughter, I really need to learn it too.

Hii Katherine , Is it necessary that if previous child has dysgenesis of corpus callosum ,then coming baby will also have the same

I find car washes boring unless they allow me to stay inside the car while it moves through the belt.

My concern with my granddaughter is she gets grounded or punished for forgetting stuff.

You can drive? Wow! I didn’t think that would even be possible! I’m 46, complete ACC, shunted hydrocephalus & epilepsy.

This is what I needed so bad to hear, I have a 10 month old child with ACC and most of the doctors don’t explain what to expect or what to do rather than just therapy

Crucial info

Hi Katherine Please provide your email id... We need your help 🥹

Hi Katherine, Need your help. My child also having ACC. I am from India. Could you please share your contact details so we can talk to you. Please help us🥺.

I just wanted to say I think you are an amazing and inspirational woman. I hope you realise it! I can only imagine how many people you are helping. I have a son with acc he's 23 and has taken a year out of university for a break - he's studying engineering. He said he would go back in Sept but I think he's unsure. He says he knows he needs the degree and probably a masters to do well in the area he wants to work in. He took a 2 year break from study after school before starting college. The college were great, they held his place the 2nd year because we had all the medical records of his acc and he had achieved enough points in his leaving cert for the degree. I don't know if they will let him take a 4th year. It's so hard to know whether to ty to persuafe him to just do it as I know he'll feel good about finishing the degree. He is incredibly deep and he does analyse himself a lot. There are often arguments which I feel terrible about afterwards he says he doesn't think about arguments after they end. To be honest most of the time I forget he has acc, I need to remember this is the moment more. Any tips on advising him 're returning to college? Thankyou again. You are a really wonderful person. I hope you know it!

Yes I am an artist !

I'm recently dxed with ACC . I am much like you. I'm 43 now . Dr said the symtoms will gradually get worse . which they have the last10 years . my son also has ACC .

Faith, 12 Acc - school is Boces program. School should Know about your Acc - It Should be a Open Communication If you Know Already - We have known about Faith- after birth. I Believe it's Important. You Shouldn't Be Ashamed of your Acc -

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 ?

Keep your Doors unlocked, You Can Always Drive your Car Off the Rack. The car wash service has a Emergency Shut Off system. 👍 you Did it ! Play Music 🎶. In Car Wash.

Oh okay, you're a genetic freak poisoning the gene pool. Cool.

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.

Did you go to a special ed class? What major obstacles have you overcome?

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!

You are a lovely and a vibrant person, without a brain part!

I wish you woukd do more of these. Very Helpful!!

Im 20 years old with acc, can i email you? I have some questions if thats okay?

Thank you for making this video and god bless you and your family.

Keep spreading hope just the way you did here.

Can I just say I love your videos and they give me reason to be hopeful with our daughter who also has ACC. You're an inspiration. Now, as far as kids mocking their parents, boy oh boy. I have a 9yr old who thinks he's 16 and loves to crack jokes in just about anything and everyone. I don't think this is something that goes away for many kids, Lol. I'm glad you can look back and reflect. I just say pick your battles so you can win the war. Lol. Thanks again

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.

I really appreciate you posting all of these videos. My daughter is 12 years old and we have known that she has had complete ACC since she was born. She has always done really well but it seems that just now in the last year or so she is really beginning to just struggle a little bit more. She is active in our church and is friends with her older siblings friends but does not have any close friends of her own. She was always content at a younger age but now we are seeing that it is much more difficult on her as she gets older. I think now would be. Good time to Let her begin watching your videos because there are so so many similarities between what you explain going through as a child and what she experiences. God bless you and thank you so much for taking the time to post your videos!

I am someone who has an intellectual disability and is high functioning. To me high functioning means the ability to be live life to the fullest with little or no supports

It would be trally helpful if you and some of tbe other leaders eould do Utube Videos . Visual along with personal ecperience to telate would really help.

Are you doing amymore UTube videos for the year 2022-2023??

My 20 year old daughter with PACC hates car washes. She feels the same way you to. My daughter had her first day of classes at VCU but can’t drive a car. I am so proud of her accomplishments. Parents that have children with ACC should never give up hope because our kids are amazing.

My daughter has Acc she started walking independently at age 5, the next goal is potty training which is a challenge, I really need her to come out of diapers now, this is useful, thank you.

@katherine m waiting your kind response plz suggest me how to overcome with this acc..my daughter is also delayed

Hello this is really nice to meet you...can you tell me what therapies you are done with ...bcs baby is also delayed she is two years old

I have a longtime friend who has hydrocephalus and ACC. I have hydrocephalus but no ACC, and I am trying not to be frustrated and impatient with her cryptic way of speaking. I think it can be related to hydro, too, but I’m also finding out that others I’m getting acquainted with have this issue as well. She says she sometimes knows she’s doing it but other times not. She’s also had a shunt infection, so that may figure in as well, but how can I, as a friend, help her? Thanks for any suggestions! 💕 I will subscribe to your channel now! 😎

My 20 yr old daughter has PACC and just moved into her first apartment😊 My daughter starts college in August

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.

i agree with everything you said. i found out i have ACC in my 40's. finding this out later in life, shows that you can have a normal life depending on how it affects the rest of the brain. i did over 20 yrs of military service, so, do not let this diagnosis let you walk on eggshells with your loved ones, help them to have as normal a life as possible

My son has ACC and he is definitely like a normal kid except for a few tantrums here and there!

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

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🌸🥺

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..

Just found out my brother’s unborn son was diagnosed with ACC. Thank you for this video.

Thank you for this

How can I speak on your platform? I'm age 63 and I have Complete Agenesis of the Corpus Callosum and was also born with a severe hearing loss. I found out at age 50 through an MRI scan on my brain. In spite of my disabilities, I have succeeded as a full time professional artist and a published author. In my book, an autobiography, I share my difficulties as a youth and into adulthood, unknowingly dealing with ACC in the beginning. I also share how I survived and coped with my ACC difficulties throughout my life, until getting expert help from 2 quified therapists.

My daughter is 6 with ACC and she has always hated and been absolutely terrified of the car wash, once we realized that we don’t take her anymore but even driving pass it causes her to freak out. Thanks for sharing your journey, it reminds me that we are not alone!

I'm so thankful for finding your page. I'm 28 weeks pregnant with my first child, a son and it is suspected he has partial ACC. There's just not alot of info out there about it and all I've been able to find is alot of worst case scenarios and I've been so scared. Seeing your page has helped my anxiety so much and feel so excited to meet my little man and see what an amazing person he is going to be.

Hey! What did you do for National DCC day?

I’m an ACC adult born in the early 90s who found out about my disorder in the first grade, and I had headaches for a good chunk of my fourth grade year. They never did find a cause, but your explanation resonates with me because that teacher was probably the least accommodating one I ever had, and it was frustrating. I like when listening to others’ stories illuminates aspects of my own life. Thanks for doing this.

BALI INDONESIA ❤️YOU