And then there was the day that our lives changed forever as we knew it.
The dreaded day that we needed to have the banshee assessed for a clinical diagnosis.
A diagnosis needed to label her as more unique than she already was.
A diagnosis that was required to ensure she was labelled appropriately for schooling purposes.
A diagnosis to ensure a label for life.
A diagnosis to change the game completly.
I remember sitting with the psychologist and my daughter, ready and raring to get these "tests" underway. It had been a while since we had the diagnosis of global developmental delay and sensory processing so we were quiet used to running the gauntlet of appointments and speaking openly about all the negative things surrounding my our child's inabilities.
This was like those appointments but with an overwhelming doom hanging overhead.
As I sat back and watched my babe struggle to understand the questions in the standardised testing and therefore not responding appropriately in return, I remembered feeling gutted and soul crushed.
We needed this diagnosis to ensure she was able to receive the help she very clearly needed but also needed validation that there was more than met the eye.
I felt sad for the "neurotypical" child that I never had. Sad that we would never have. Sad that she would now from this moment on be labelled as "neurodivergent". Sad for her that people may see her in a different light. That she wouldn't be seen as just being her, without a label. - I still feel like this most days.
It's an overwhelming roller-coaster of emotions, diagnosis day.
You know you need it, it will (hopefully) eventually help.
Doesn't make the hurt and heart ache any easier.
Selfishly you have the heart ache and question why.
But there is always the heart ache for the child. The innocent child.
We live with a Moderatly Intellectually Disabled Little Girl who has Autisim, Selective Mutism and Hyper Anxiety.
DISABILITY PRIDE MONTH QUOTE 9 OF 9
Thursday, July 13, 2023
What would happen, they conjectured, if they simply went on assuming their children would do everything. Perhaps not quickly. Perhaps not by the book. But what if they simply erased those growth and development charts, with their precise, constricting points and curves? What if they kept their expectations but erased the time line? What harm could it do? Why not try?
- Kim Edwards, The Memory Keeper's Daughter
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Me, a physically disabled (high support needs) neurodivergent (mid to high support needs) person: Hey, my neurodivergence IS extremely disabling in a way that a lot of you say "isn't possible" and also my physical and neurological disabilities often combine in ways that can't be separated and produce symptoms that are new or of added severity for me.
Responses I've gotten from disabled exclusionists (some of whom are also both physically disabled and neurodivergent):
"What drugs are you on, you delusional freak?"
"I've never experienced this and therefore you're a dirty lying physically abled neurodivergent person who just wants to be more disabled and oppressed than you are. My experiences are universal and anyone who has different experiences is a lying liar. No one can ever prove otherwise because my axiom is that anyone who claims otherwise is lying."
"The ableds are at it again."
"Sit down and let the REAL disabled people talk."
"You're never allowed to find similarities between disabilities that are of different types, even ones you have, and if you do you're actually the reason why accessibility is such an issue because conflating them is why ableist doctors don't give us what we need and why society thinks medical gatekeeping is good, actually."
"If you're that suicidal do us all a favor and kill yourself."
This is without even getting into stuff about how disabled labels often apply differently to systems. The big discourse now is "nonverbal" labels for headmates who are permanently, always nonverbal, primarily by people and systems who refuse to view systems as anything but "parts" of a single person. Which is funny to me because ah yes, we have actual studies showing physical disabilities such as allergies can apply only to individual headmates, but gods forbid you apply a neurological label to someone whose brain activity is not only visibly different on scans from yours, but to the extent that it changes your entire shared physical body!
Like here's a novel idea: maybe we could just stop policing how other disabled people talk about their disabilities forever! Maybe we could blame any and all harm done even from the unicorn-rarity "actual fakers/liars" (also don't think I don't see you being ableist against people with actual diagnosed that cause compulsive lying) on the ableists DOING the harm because it's actually perfectly possible for them not to cherrypick our words and listen to the MAJORITY of us!
Maybe, just maybe, we could form a coalition, focus on the REAL enemy (ableist medical professionals and lawmakers) and push for actual change for ALL of us!
Hello, my name is Ally, I am a PhD student researching neurodivergent experiences of grief. I also am autistic and have ADHD too. I will be looking at publicly available posts on neurodivergent experiences of grief as part of a study I am currently running and wanted to let you know of this, as if you have any content you do not want me to look at, just let me know in a comment below, by emailing me, or using an opt out form (linked here and on my blog). If you want any more information, feel free to contact me or to check out the document explaining this study in more detail (linked here and on my blog).
Advocating for Inclusion: Nicholas Herd Speaks Out at the UN Conference on Disability Rights
NEW YORK — Nicholas Herd, a passionate advocate for the inclusion of individuals with intellectual disabilities, is making his mark at the United Nations Conference of States Parties to the Convention on the Rights of Persons with Disabilities.
The conference, held at the UN Headquarters in New York, serves as a platform for international collaboration on disability rights.
Breaking Barriers: Nicholas Herd's Personal Journey
Herd's personal experiences have fueled his determination to fight against discrimination. Reflecting on his past, he recalls being bullied during his childhood due to his disability.
Today, he embraces the opportunity to amplify his voice, drawing strength from his younger self.
"I can shout it on the top of a building or off a mountain, bigger than the UN, so that persons with disabilities are included at the table," Herd proclaimed.
"That's how big our voice should be around the world. That's the reason why we're here in the United Nations. We want to be included."
This marks Herd's first attendance at the UN, an occasion that stirred emotions within him. He expressed disbelief at the opportunity to contribute to such a significant global stage.
An Animated Revolution: "Free Bird" and Authentic Representation
As a creative director, Herd finds inspiration in the world of animated films. Growing up watching Disney, Pixar, and Marvel movies, he always felt that something was missing—the representation of individuals with Down syndrome.
However, this changed with the release of "Free Bird," an animated short film in which Herd serves as the creative director.
Debuting on World Down Syndrome Day in 2021, "Free Bird" brought immense joy to Herd upon its release on YouTube. The film also achieved recognition by qualifying for the 2022 Oscar Awards.
Through this animated masterpiece, viewers are exposed to the authentic representation of a person with Down syndrome, debunking common myths and promoting factual understanding.
Dispelling Myths: Institutionalized Survivors Take the Stage
Herd also seeks to dispel the myth surrounding the institutionalization of individuals with intellectual disabilities. In collaboration with the theater program Sol Express in Toronto, he participated in a play called "Birds Make Me Think about Freedom," led by institutionalized survivors.
Herd took the initiative to interview these survivors for his talk show, "Keeping It Real with Nick," gathering valuable insights to enhance the production. Together with fellow Sol Express members, they transformed the play into a collaborative endeavor, not merely about the survivors but with their active participation.
This, to Herd, exemplifies true inclusion.
During one of his interviews, Herd encountered a survivor who shared his yearning for freedom. Recollecting his time in the institution, the survivor vividly remembered watching birds outside, symbolizing the freedom he longed for but was denied.
Herd's determination to bring about change extends to ensuring that no one, including those who were institutionalized, is left behind. By promoting inclusion and participation, Herd aims to empower individuals with intellectual disabilities and grant them the freedom they deserve.
Empowering Voices: Inclusion and Participation for All
According to Herd, everyone has something unique to contribute to the conversation on disabilities. Their voices deserve to be heard in various arenas, promoting greater inclusivity, awareness, and participation.
He firmly believes that individuals with disabilities have the right to host talk shows and pursue meaningful work. Appreciating his own privileges, Herd acknowledges the importance of family and the sense of acceptance it brings.
With his niece already in his life and the anticipation of his sister's upcoming baby boy, Herd eagerly awaits the arrival of the newest addition to his family.
While progress has been made, Herd recognizes that more work lies ahead. His unwavering dedication to the cause embodies the aspirations of individuals with intellectual disabilities worldwide. With hope for a more inclusive future, he continues to advocate for freedom, inclusion, awareness, and education.
Hope for the Future: A Family's Anticipation
As the UN Conference on Disability Rights progresses, Nicholas Herd's resounding voice serves as a reminder that the journey toward equality requires continued dedication and unwavering commitment.
Sources: THX News & United Nations.
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a disability that affects the acquisition of knowledge and skills, in particular any of various neurodevelopmental conditions affecting intellectual processes, educational attainment, and the acquisition of skills needed for independent living and social functioning.
"participants are children and adults with intellectual disabilities"
Kudos to our special children from #intellectualdisability Home, Kerala, as their #AbilityCoffee wins 2nd position for selling coffee and snacks at an event held by the Social Justice Department, Govt of Kerala.
#HLFPPT has been managing #PratheekshaBhavan, Home for the #IntellectuallyDisabled Adults in Kerala, with support from the Social Justice Department, Govt of Kerala.
https://www.voiceamerica.com/episode/140527/intellectual-disabilities-and-womens-health-empowerment
Host Keerthi launches the program with a description of intellectual disabilities. “According to the American Psychiatric Association, intellectual disabilities affect intellectual and adaptive functioning, which means that individuals with intellectual disabilities generally struggle with…
#OregonLife For this Sunday The Oregon Special Olympics.
VIDEO: https://youtu.be/76svKm1rUJ8
#SpecialOlympicsWisconsin (SOWI) provides year-round sports training and athletic competition in various Olympic-type sports for children and adults with #intellectualdisabilities
Thank you to Torhorst Insurance for your continued support.
If you would like to sponsor a show or contribute to #OCAMedia please contact: [email protected] or visit our donation page at: http://www.ocamedia.com/donate #OCAMedia
Participants needed for online survey! Topic: "The Impact of COVID on Services used by Young Individuals with I/DD" https://t.co/Gmy4T3GU5i via @SurveyCircle #DevelopmentalDisabilities #IntellectualDisabilities #caregivers #services #survey #surveycircle https://t.co/ILt592SaDp
— Daily Research @SurveyCircle (@daily_research) Feb 2, 2023
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