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Living with ACC
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Добавлен 26 апр 2015
My name is Katherine and I have complete agenesis of the corpus callosum.
I am a wife and mother of two and am considered by the researchers as "extremely high functioning."
I plan on uploading videos discussing my experiences and challenges living with ACC as an adult and as a mother of a child who also has the disorder.
I am a wife and mother of two and am considered by the researchers as "extremely high functioning."
I plan on uploading videos discussing my experiences and challenges living with ACC as an adult and as a mother of a child who also has the disorder.
My ACC Actions and Reactions #2
Let’s get real with admitting we have social issues! Here’s just a thought from an event that happened in my day. I may look typical but I often worry about situations I am in and my actions! Misunderstanding people can be an every day struggle.
Просмотров: 1 214
Видео
My Acc Actions and Reactions #1
Просмотров 7073 года назад
I wanted to start doing a video series that shows some things I go through in my everyday life. In my first video I take you through my experience of going through a car wash.
Amazon Smile and the NODCC
Просмотров 8665 лет назад
I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! My website: www.LivingwithACC.com Please let me know if you have any questions or feedback in the comments section below. Potential topics for upcoming videos: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences - being a special education one on one teaching assistant...
Memory Loss - Living with ACC
Просмотров 2 тыс.6 лет назад
I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! My website: www.LivingwithACC.com Please let me know if you have any questions or feedback in the comments section below. Potential topics for upcoming videos: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences - being a special education one on one teaching assistant...
The ACC Spectrum - Living with ACC
Просмотров 1,4 тыс.6 лет назад
I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! My website: www.LivingwithACC.com Please let me know if you have any questions or feedback in the comments section below. Potential topics for upcoming videos: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences - being a special education one on one teaching assistant...
Newly Diagnosed Parents - ACC and Disorders of the Corpus Callosum - Living with ACC
Просмотров 4,6 тыс.6 лет назад
I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! My website: www.LivingwithACC.com Please let me know if you have any questions or feedback in the comments section below. Potential topics for upcoming videos: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences - being a special education one on one teaching assistant...
The Diversity of ACC - Living with ACC - NODCC Community Photo Montage
Просмотров 3,2 тыс.6 лет назад
I asked across multiple ACC-related Facebook groups if members would be willing to submit a photo of their child/self with ACC so that I could make a video slideshow showcasing how wide the ACC-spectrum is and the diversity of individuals diagnosed with the disorder. This video took a considerable amount of effort (10 hours) to edit, so please LIKE, FAVORITE, COMMENT, and SUBSCRIBE to the chann...
How to learn more about DCC / ACC? NODCC Memberships
Просмотров 6686 лет назад
NODCC Membership: nodcc.org/community/nodcc-membership/ I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! My website: www.LivingwithACC.com Please let me know if you have any questions or feedback in the comments section below. Potential topics for upcoming videos: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences -...
Teaching Letters - Living with ACC
Просмотров 1 тыс.7 лет назад
I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! My website: www.LivingwithACC.com Please let me know if you have any questions or feedback in the comments section below. Potential topics for upcoming videos: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences - being a special education one on one teaching assistant...
My Biggest Struggle - Question from Facebook
Просмотров 1,4 тыс.7 лет назад
Please leave any questions you'd like to see me answer in the Comments section below. :) I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! 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: - how to get through a day - sports: horse back riding, golf,...
Living with ACC - Occupational Therapy and Physical Therapy - Question from Facebook
Просмотров 8977 лет назад
I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! 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: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences - being a special education one on one teaching a...
Living with ACC - Headaches
Просмотров 9207 лет назад
I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! 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: - how to get through a day - sports: horse back riding, golf, running, lacrosse - my job experiences - being a special education one on one teaching a...
How I was in Social Situations - Question from Facebook
Просмотров 1,2 тыс.7 лет назад
Please leave any questions you'd like to see me answer in the Comments section below. :) I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! 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: - how to get through a day - sports: horse back riding, golf,...
Living with ACC - Handwriting - Question from Facebook
Просмотров 1 тыс.8 лет назад
Please leave any questions you'd like to see me answer in the Comments section below. :) I hope you enjoyed the video! Please be sure to LIKE, FAVORITE, and SUBSCRIBE! 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: - how to get through a day - sports: horse back riding, golf,...
Living with ACC - What is considered "High Functioning" and what are "Primary ACC" and "ACC Plus"?
Просмотров 3,2 тыс.8 лет назад
Living with ACC - What is considered "High Functioning" and what are "Primary ACC" and "ACC Plus"?
Living with ACC - Tips on Potty Training
Просмотров 9478 лет назад
Living with ACC - Tips on Potty Training
Living with ACC - The Basics of DCC
Просмотров 2,3 тыс.8 лет назад
Living with ACC - The Basics of DCC
Living with ACC - 2015 NY Regional Meeting - My Presentation
Просмотров 7989 лет назад
Living with ACC - 2015 NY Regional Meeting - My Presentation
Living with ACC - 2015 Texas NODCC Regional Meeting
Просмотров 1,1 тыс.9 лет назад
Living with ACC - 2015 Texas NODCC Regional Meeting
Living with ACC - Best resources for children
Просмотров 5869 лет назад
Living with ACC - Best resources for children
Living with ACC - Parenting Tip Examples
Просмотров 1,7 тыс.9 лет назад
Living with ACC - Parenting Tip Examples
Living with ACC - My BIGGEST Parenting Tip!
Просмотров 7 тыс.9 лет назад
Living with ACC - My BIGGEST Parenting Tip!
Living with ACC - Tips on Independence
Просмотров 8809 лет назад
Living with ACC - Tips on Independence
Hii Katherine , Is it necessary that if previous child has dysgenesis of corpus callosum ,then coming baby will also have the same
There are rare chances where a family has had more then one child with DCC. But typically it’s just one child. In my family I am the only one out of six kids. I have three older siblings and two that are younger. That being said, if you are a parent that has the disorder (like myself), it’s possible to pass it on to more of your children. I have a 50/50 chance with each pregnancy that my child will be born with the disorder. So I only have two kids. The oldest is typical brained and the younger has the disorder.
@@LivingwithACC - Thank you so much for sharing this ,I am so much relieved now ☺️
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.
Is your life is hard.....my wife 6 month pegnent # my child also have the same issue #acc with hydro and absence of csp... Plz suggests me we continue or terminate
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🥺.
Hello, I would be happy to help you any way that I can. My email is livingwithacc@gmail.com Also, if you are on Facebook at all there is a Facebook page called “Disorders of the Corpus Callosum in India & SAARC Countries” that you may want to join. 😁
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 -
I’m not ashamed of it. I just don’t use it as an excuse.
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.
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!
Thank you!!😍
You are a lovely and a vibrant person, without a brain part!
Thank you so much 😊
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?
Sure! I am happy to answer any questions you have. You can email me at livingwithacc@gmail.com
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.
Did u use any medicine treatment ?!
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
Sir please call mee.pandurang khune form .india
That's encouraging to read Richard. I have a newborn son that's been diagnosed with ACC, thankfully that's it so far. Your comment gave me a boost, thank you
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🌸🥺
@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 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. 💗
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
hey there. My daughter has acc and she is 11 months old. she is little delayed in her milestones. she sat up independently at 9 and a half months .recently started PT to teach her to help her with gross motor skills. you're an inspiration. I look at you and suddenly i am filled with hope and positivity.