ASKING FOR A FRIEND - 14 adults with a Corpus Callosum Disorder (CCD) answer the tricky questions.
ฝัง
- เผยแพร่เมื่อ 12 ส.ค. 2024
- Take a glimpse at life with a corpus callosum disorder (CCD) as 14 adults generously and candidly share insights into their lives while answering some tricky questions.
What is a corpus callosum disorder? What can you do that people think you can't? What's the dumbest thing that anyone's ever said to you? What do you think about sex? What's the best thing about having a CCD? and more...
Chuckle, cry, nod and understand!
A CCD can have a range of impacts ranging from mild to severe. Some of the impacts can be seizures, autistic traits, cerebral palsy, non verbal communication, social anxiety, mood disorders, visual/audio problems, intellectual disability and much more. In our community we have people affected in many different ways. This is a small sample of adults from attendees at our November 2023 Connections conference who were able to arrange to attend early for filming.
Produced by Australian Disorders of the Corpus Callosum (AusDoCC) with Mighty Films, at Connections 2023, Melbourne Australia.
AusDoCC is the peak support group in Australia/NZ for corpus callosum disorders (CCD).
Web: www.ausdocc.org.au
Email: info@ausdocc.org.au
Partially funded by The Australian Government's Information, Linkages and Capacity Building Program. - วิทยาศาสตร์และเทคโนโลยี
I’d never heard of this disorder. It’s not obvious from outward appearance. All of these people look like any common person you’d see anywhere. You’d not even notice by having a casual conversation. Suppose you live in the same building and see the person in passing. “
“Hi. Beautiful weather, isn’t it?”
“Yes, it’s lovely.”
“Well, enjoy your day.”
“You too, love.”
“you become proud by practicing” is a lovely line
⚡️I have a 40yr old son with who nearly died at birth due to cerebral asphyxia. He has epilepsy, learning disabilities, autism, etc. But I had never heard of CCD before. I want to thank all of you for educating me! I do not say this to be condescending in any way - I am just so impressed with how eloquently you all spoke. The patient and thoughtful manner in which you answered the questions presented to you shows everyone how intelligent and knowledgeable you are! Having a “hidden handicap” or “invisible disability” can be very challenging. It takes a lot of courage and determination to face the challenge. I admire each one of you. I admire my son. Because you are all beautiful and very brave!✨🙏🏽💖😎
I believe this shows that we all need to be aware that there is a potential for anyone to have a disorder of some sort. Speaking as someone who only recently was diagnosed with my own invisible disorder I do my best to be understanding of everyone, as I don't know what they are going through.
"We actually ended up teaching the doctors" is a sentence my husband used yesterday. I have a weird neurological condition and can relate to these these people.
4:08 That's not unusual because a GP can't know everything which is why we have referrals to specialists.
It's the doctors who insist that they DO know everything that are the problem,gps or consultants! When you have rare conditions you know that you can't expect doctors to know everything about all of them. But to have a doctor look you in the eye and tell you that you can't have whatever it is after years of getting diagnosed,or (more commonly) that they simply 'dont believe in*****( fill in the blank) is so difficult!) I have something that regularly requires an ambulance,and lands me in a&e, 8 years later my small town local hospital still don't treat me because they don't know and won't find out what to do with me🙄
@@LuciThomasHardylover-qx6ts ouch! That's tough.
@@biddiemutter3481 that's sweet of you to say! It's tougher for my daughter who has to watch it all, and with the ever present worry that she'll end up like me! Just so exhausting when every single person from the paramedics who lift me off the pavement, the staff who lift me onto a bed, the nurse who comes to do your vitals, the nurse who comes to remove the monitors etc every single one insists that they must hear from you yourself what happened and why you're there. Even when I'm choking so bad I can't swallow my own saliva for FIFTEEN hours!!! Won't speak to the previous person, won't listen to my very competent daughter, won't read the notes and almost all of them go away and never get seen again 🤦🤬 or even worse then go and Google it and get the wrong type and start rushing me around thinking that I have a vascular version 🤦👊😂 so I really feel for people with rare conditions, especially when there isn't an easy way to explain it because it can affect everyone so differently. And laughter at the absurdity is the only coping skill we've found of any use! Lots of lovely laughter from everyone!! 😊
I still call myself handicapped, not disabled. I'm kinda other abled.
I was born with partial agenesis of the corpus callosum. I have hydrocephalus, a diagnosed Nonverbal Learning Disorder, and very highly likely ADHD/Autism. This randomly showed up as a suggestion for me. It's eerie how well TH-cam knows me
Ive told people about this issue for years, (Im an AutoDidactic on the Autistic Spectrum but not a CCD) since I first heard about it as a teenager. People are just people, no matter what issues they might struggle with. We all need to be raised to be kinder to each other. Thank you for sharing this with us! ❤
Thanks everyone for sharing. My son is the only person I know with CCD.
This is a beautifully created and edited video. Thank you so much to the participants.
I understand the difficulty with fine motor skills. Notice the uncoordinated air quotes @6:07.
One of my twin daughters has a small part of her Corpus Callosum misshapen tho the doctor told us, when she was born that it was in the normal range. She is a twin and while I would never call her normal (she is the craziest, funniest, smartest twin ever and her 3 min older twin sister runs a close second but has a normal CC based on ultrasound before birth. She has a four year bachelor’s of arts university degree that she got all on her own. She can do anything she just takes a little bit longer to process some things. She does an amazing job of managing her world. You would never ever know that she has this different ability. She also reacts poorly to loud noises and she has so much in common with you all yet she can literally do everything. She is really good at things that her twin sister, whose corpus callosum is of normal size and shape, isn’t as good at. She just takes her time to make sense of the world and we just always knew that and gave her her space to process. But we have never ever ever said that she had a disability. She just has different abilities. Disability implies that she is somehow lesser of a person and she is anything but! She is friendly, happy, very intelligent and successful and so much more! She is amazing at ASL, she can sus out a situation faster and better than I do! I love the adult person that she has become and she has never been told she was different until she was in high school and her neonatologist said she was perfectly normal and that her brain difference was like the difference in hair color. And that’s how she was raised, treated, loved and respected. And she is gorgeous! I think the moral is, “don’t ever let anyone tell you you can’t do something.”Bc you can do anything!
you are so wonderful to bring her up the way you did. so terrific she’s doing so well. :) 🌷🌱
thanks for imforming us
Jade you crack me up ❤
What an amazing share of information on a disorder I was unaware of.
This video came across my home page quite randomly, I'm so glad! This was super informative, I had never heard of CCD before, but hearing from these people's lived experiences is so valuable! Thank you for doing what you are doing :)
just to speak to the point that people don’t understand!! i have agoraphobia. i’m 78. people my age talk about forcing themselves to, for instance, go out for a walk. they do Not get that i cannot force myself. my head has to be in certain relaxed state or if i don’t go to the store, i will have nothing decent to eat!! then i take a chlonazepam and take my life in my hands and go out. (n.b. once i’m in the store, i’m pretty good! ?)
anyway i finally thought of a way, just last week, to visualize it for people. you go to step out of your usually safe house and there’s a thick panel of glass that stops you. there is no getting past it!! maybe there’s a way you guys can visualize your disorder for other people. cause they just do not get it. :) 🌷🌱
A good B-Complex and an additional B1 helps immensely with anxiety disorders.
My ex husband became a severe agoraphobic about 6 months after we married. He didn’t go out the front door for the first two years. After that, you know, he didn’t die, he still says he is agoraphobic, but separating our marriage led to hi great improvement because he just had to fend for himself. Freed me from 35 years of a difficult marriage, too.
Thank you for this enlightening experience! ❤
I learned something new today. Thank you.
This is new to me. Thank - you so much for sharing and educating people.
Me too 👊
Lovely interviews, thanks.
Thank you for educating us
I’ve had students with this diagnosis.
Awesome
My only exposure to the idea of not having a corpus callosum was from discussions in psychology classes where it had beenn cut later in life, often due to a seizure disorder.
So I was expecting to see people being unable to move part of their body and stuff like that. Like maybe their legs would work, but not both arms or both sides of their face.
It seems there is a big difference when you are born with it and can compensate. I can see why it might confuse others who may have heard about the corpus collosum and what it does.
I do kinda wish we had more visual representations of what these issues are, because it would help me when they talk about how "not normal" they are and how they have to learn to accept it.
13:19 I love the way you explain that.
“Are you sure?” 🙄 🤣🤣🤪
Due to my thin Corpus callosum. miss parts, Arnold Chiari II, SBO. Thats what defines me.
Two minds; two people; in the same body. Weird eh.
I don't know how to ask this question so I am just going to ask it. Forgive me please if it hurts anyone's feelings. Here goes. Would you rather your mom terminated you during pregnancy? Or are you grateful for your life as it is?
That IS quite a question! Judge for yourself by their animated conversation what would be their answers.
@user-wd5qw2sr4d I'm glad you asked that question, you did it well and sensitively. Most folks don't mind answering questions about their quality of life, and you were kind in asking. I know a lot of folks want to ask questions, but we're told not to look or stare when we're kids, and there IS no one to ask. So you're in the right spot - I just wanted to support you. My best.
In spite of my disorder , I was not a "Dangerous" pregnancy endangering my mothers life. Nor was I ectopic. If I would have caused harm or been FATAL to my mother, I would rather not be here. I have empathy and would rather not harm others because I am somehow more IMPORTANT than anyone else.
CCD does not mean a Mothers life was in danger.
@@tamnosivad3623 Thank you for responding. Oh if we could sit and talk I would be a rapt listener.....and would have so many questions! You see, my daughter is expecting. The baby has partial ACC. I want to know if he lives, will he have some quality of life? Thank you again. May God bless you .
These people all make the world a far better place. Their own lives would be better if society was equitable, kinder and more understanding.