Intellectual Disability

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Intellectual Disability
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    Defying The Odds

    Your Daughter Will Never Walk or Talk.

    Defying the odds, Amy never thought she’d be able to have children. Her pregnancy was high-risk due to her own medical issues. However, she made it through the first trimester of her pregnancy and was ready for an ultrasound at 18 weeks. Amy didn’t expect the doctors at her local hospital to tell her that her daughter would never walk or talk. From the ultrasound, the doctors explained that her daughter would have extra fingers and toes and enlarged ventricles in her brain. Amy said, “this was my miracle child. I chose to keep the baby, knowing that I’d have to figure everything out every step of the way.”

    Fifteen days after Jordynn’s birth, Amy took her daughter to see Dr. Catherine Nowak, a geneticist and the clinical director at The Feingold Center for Children, located at Boston Children’s Hospital and funded by The Genesis Foundation for Children. Amy, who had also been born with extra fingers and toes (known as polydactyly) and other medical issues, saw Dr. Nowak as a teenager because her pediatrician suspected that her problems might be due to a rare genetic disease. At that time, Amy’s genetic test results were normal because “we didn’t have the ability to test for the thousands of genes as we can today,” explained Dr. Nowak. Now age 22, Dr. Nowak suggested testing both Amy and her 15-day old daughter.

    I Had Spent 22 Years Not Knowing What Was Wrong With Me.

    “After 22 years of not knowing what was wrong with me, I was relieved to discover why I was different from everyone else. I learned that my daughter and I are a rare mother-daughter duo with Greig Cephalopolysyndactyly Syndrome.”

    Greig Syndrome is caused by a mutation in the GLI3 gene, which is involved in the normal shaping of many tissues and organs during the early stages of fetal development. “The GLI3 protein can either turn on (activate) or turn off (repress) other genes,” causing secondary medical conditions. (Hyperlink to Source: https://medlineplus.gov/genetics/gene/gli3/)

    Greig Cephalopolysyndactyly Syndrome affects the development of the limbs, head, and face. It also can cause seizures, delayed development, and #IntellectualDisability . Now that Amy knew what she and Jordynn were dealing with, she felt that with Dr. Nowak’s guidance, she would be able to get Jordynn the necessary medical care and support so Jordynn wouldn’t just survive. She would thrive.

    36 Surgeries in 11 Years

    At 11 years old, Jordynn has had 36 different surgeries. The first surgery was on Jordynn’s hands when she was four months old. At age six, Jordynn had her most extensive group of surgeries in a two-month timeframe which included a bone graft in a finger, bilaterally lengthening her Achilles tendons and surgeries on the tendons in her toes. Afterward, she spent eight months in a wheelchair before Jordynn could relearn how to walk again. She then had to wear Ankle Foot Orthosis (AFO) braces for the next 18 months, followed by bilateral knee braces. When Jordynn was done with the AFO braces, she put them under the Christmas tree so Santa could give them to another child in need.

    Jordynn spent countless hours in physical, occupational, and swim therapy, along with Amy’s work with her at home in between. Amy and Jordynn know that Jordynn will need more surgeries throughout her life.

    Not Just A #RareDisease , But Also A Rare Spirit

    When Amy speaks of the complications from the #RareDisease , Greig Cephalopolysyndactyly Syndrome, what stands out as especially rare is both Amy and Jordynn’s fighting and joyous spirits to shine their light and love on everyone around them.

    Jordynn attends the public middle school near her home and has made high honors. She enjoys dancing, being outside in nature, riding her bike, playing snare and bass in her middle school band, drawing and painting, and playing with Sarge, her German Shepherd puppy. Amy remembers when the doctor told her that her child would never walk or talk. Amy laughingly says, “if they could see Jordynn now, she doesn’t stop talking and has become so sassy.”

    Amy is grateful for Dr. Nowak, The Genesis Foundation for Children, and The Feingold Center for Children because their constant support and compassion have made all of this possible. Amy’s wish for Jordynn is that her “warrior spirit will guide her through life’s obstacles and that Jordynn’s big beautiful smile will continue to light up the world for everyone around her.”

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    I heard in some Vlog on youtube that people who have #Autism ARE much more smarter then people who don't have it. She was kind of smug about it. Is having Intellectual Disability (That i have) linked to #Autism ? Os is that why people always assumed I have it? Or would it be about like a person who is full fucating autism? When i was looking up different #learningdisalitby Intellectual Disability wasn't listied.#TheMighty #MightyTogether #Depression

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    intellectual disability,

    So people who have intellectual disability, Do you think have a mind of a child? Or people might think so and trat you like that? Sometimes i feel like that. That im just not smart has everybody else. Sometimes i think i act and appear to be how people think i people are with this dislitibaty. #LearningDisability #IntellectualDisability #TheMighty #MightyTogether #Depression

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    I am much smarter than I think I am

    I thought I have Intellectual Disability, but I am much more intelligent than I give myself credit for. I just only learn things based on my restricted interests.

    Forensics is my restricted interest.

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    Hi aĺl

    So I have bi polar 2 anxiety depression cpsd ptsd and teleplis and autism and a mild intellectual disability scoliosis #bi polar sucks #misunderstood

    So only a few years been diagnosed with autism being female you know it is what happens

    I find it so hard in the community
    Who else does
    Where do I fit
    I function like a so called norm
    But don't understand conversation enough or social....
    Why is it that if you are not fully unfunctional that people lump everyone together oh it's disability not being able to see each person and putting people who have high behaviours above others....

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    My explanation why some criminals are part of the ASD community.

    Most studies say that people with ASD are more likely to be victims than being perpetrators. While that is true, that statement is too broad, people with co-morbid diagnosis of Intellectual Disability and Autism are actually 20 times more likely to be victims than being perpetrators, compared to people who are on the higher functioning end of the autistic spectrum. Another problem why that statement from most studies is too broad, it is because the diagnostic criteria for Pervasive Developmental Disorders became more broad for the last decade and it was lumped as Autism Spectrum Disorder, and it's broad to the point where even some people with Antisocial Personality Disorder can be considered to have Autism Spectrum Disorder.

    A lot of you guys wonder why more criminals happen to have a diagnosis of Autism Spectrum Disorder than a decade earlier, it is because the diagnostic criteria for Autism Spectrum Disorder is a lot more broad than it was a decade ago. It was thought that only people with Intellectual Disabilities have Pervasive Developmental Disorder, but after few years, they made the diagnostic criteria for ASD more broad to include people who have symptoms of PDD but without Intellectual Disability, and after few more years, the diagnostic criteria became more broad to include Asperger Syndrome. And In 2013, it was lumped as Autism Spectrum Disorder, and recently it was lumped as Autism Spectrum Disorder in ICD-11.

    It's true that most people with ASD are more likely to be victims than perpetrators, but if we get more technical, people who have ASD without Intellectual Disability are more likely to commit crimes than people who are Intellectually Disabled. There are some people with Intellectual Disability that commit crimes, but it's so rare, because the diagnostic criteria for Intellectual Disability includes problems with Intellectual and adaptive functioning. People with ASD without Intellectual Disability are able to do neurotypical tasks and some people with ASD without Intellectual Disability are able to defend themselves than people with Intellectual Disability.

    Since the diagnostic criteria for Autism became more broad in the last decade, I wonder if I am correct that there are some crimes that with ASD without Intellectual Disabilities are more likely to commit, but due to lack of social skills and repetitive behaviors.

    You guys are wondering why more criminals happened to have ASD than a decade ago, it's because the diagnostic criteria for Pervasive Developmental Disorders became more broad in the last decade and lumped it as Autism Spectrum Disorder in recent years.

    There are a lot of people that say it's impossible to have Antisocial Personality Disorder and ASD, but the problem is that the diagnostic criteria for ASD is much more broad than a decade ago, that it's is considered possible to have comorbid diagnosis of Antisocial Personality Disorder and ASD.

    Now, you know why more criminals happened to have ASD than a decade ago.

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    Going back to my childhood.

    I asked here what Unspecified Intellectual Disability means. At first, I thought I am only bad at academics and had severe communication delays, but as an adult, I found out that I have severe problems with learning from experience, problem solving and milder problems with adaptive functioning, and especially from looking through my IEP and medical records.

    My symptoms of Intellectual Disability is so mild, that it took 20 years for me to find out about my symptoms of Intellectual Disability. I am 21 years old now.

    My IQ can very, but historically, it was very low for my age.

    I only meet 6 out of 9 symptoms of Intellectual Disability.

    I can reason most of the time, and I can make logical arguments.