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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    Accepting People With Disabilities as Valuable to the Community

    When non-disabled people think of people with disabilities in their communities, they may have a variety of responses. Some people may view people with disabilities with pity and think that they “can’t do anything.” Other people may view people with disabilities as “lazy” or “unmotivated” — even though they’re often hardworking and motivated. Other people may think of a person with a disability as having superhuman talents. People may be disappointed when these people with disabilities can’t live up to the expectations of others. What many people may miss, though, is that individuals with disabilities bring value to their communities. One of the biggest ways that people with disabilities bring value is diversity. Many times, people fear or dislike things that stray from their version of “normal.” In the late 1800s, “ugly laws” were passed to prevent people with disabilities from being seen in public. Chicago was the first city to pass this type of law in 1881, and the law prohibited people who were “diseased, mutilated, or maimed” from being on the streets. Take a walk down the street in your town or city, and you will find that this is thankfully no longer the case. Being around others who have disabilities also can provide unique perspectives on life. People with health conditions may have difficulties, but they have many ways to contribute to the community as well. The world needs all types of minds to make it work effectively. Diversity also creates compassion and understanding. We may often fear what we don’t know, so having a wide variety of people in the world — including those with differences — shows that people with disabilities are far more alike than different. Another way that including people with disabilities in the community provides value is implementing universal design. The Americans With Disabilities Act was passed in 1990 to let people with disabilities have reasonable accommodations so that they can access their communities. One of the parts of this law mandated universal design for buildings so that anyone can access them — regardless of ability. The beauty of universal design is that it benefits all members of the community — not just those with medical diagnoses. Examples of universal design are automatic doors, curb cuts, and accessible elevators. This type of design is helpful for people in the community who have full hands or are pushing strollers too. Other accommodations are specifically for people with disabilities, but universal design can help everyone. Individuals with disabilities are more prevalent than many may think. In the United States, 16 million people live with a disability. Some of these people are adults with cognitive impairments.  Previously, many people with cognitive disabilities were placed in institutions and kept away from the community. Many of these places were run poorly and didn’t adequately meet people’s needs. Some disabilities may be temporary while others may be long-term. This is why having a welcoming and supportive community is important. Anyone can become disabled at any time. Despite all of the ways that people with disabilities help their communities, many communities are resistant to inclusion. Some communities have subtle ways of discriminating against people with disabilities — like not providing bus service to people with disabilities who can’t drive or not giving a person with a visible disability an opportunity to get a job or apartment. Other citizens may be vocal about not wanting people with disabilities in their neighborhoods.  People with disabilities are no longer being shut into institutions or hiding in corners. Instead, many individuals with disabilities are now proud members of not only the disability community — but also the community at large. Sadly, many people don’t see the value that people with disabilities bring to the community or know how prevalent disability really is. Hopefully, people will someday see that disabled people are important citizens in the community that bring diverse perspectives and compassion for others. I also wish that others understand the innovative ways disabled people contribute to communities that can benefit everyone.  Most importantly, I hope that people will see that individuals with disabilities are valuable citizens of the community and play an important role in moving our society forward.

    Community Voices
    Community Voices

    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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    How Older Mentors Can Help Families of Children With Disabilities

    Today my family’s friend Bill turns 92 years old. Bill and I have known each other for almost 20 years, but became closer friends starting in 2007. Bill had recently lost his wife of many years, and was a devoted father to his son with an intellectual disability. His son is in his 60s. My daughter Yassy, who has Down syndrome and autism, is 22. Here are just some of the things he and his family have taught me when it comes to the world of disabilities, advocacy, and parenting. Keep in mind these points apply to Hampton, Virginia. 1) Bill’s generation is the one who started to firmly stand up and say no to doctors who suggested placing infants and children with disabilities in institutions. While Bill and those who did so were still in the minority, there were enough to do things like start The Arc in each state, and band together for progress. 2) In the 1960s, parents were begging just to get their children with disabilities into any public school. Success, or failure, depended on each locality and each group of parents. Self-contained special education classes were the only choice. Reading and writing were not always expectations. 3) Success getting his son into school required the parents to work together to volunteer to drive the school buses. This was the only way one school district would say yes. 4) Back in the early 60s, physicians often gave a medical diagnosis of “idiot.” Bill’s son did not receive his diagnosis of autism and intellectual disability until he was in his 40s. 5) Sheltered workshops were considered progress in the early 1960s. They are becoming outlawed, rightly so, in 2022. Many people who worked in sheltered workshops were very capable of working in the community, even if they could not read or write. 6) Bill’s other son, who does not have any disabilities, is vitally important to their family’s success. An avid runner and biker, he has taught his younger brother to run and ride a bike over the past decades. They often run together in races. Attending sporting events and other passions keep the brothers close. As Bill ages, this bond has gotten stronger. Bill’s older son is so proud of his younger brother, and says that clearly to his friends often. His pride, deep love, and devotion for his brother warm my heart beyond measure. 7) As Bill has aged, his son with disabilities has become his primary daytime caregiver. He has retired from working and enjoys helping his father with day-to-day living. 8) Bill’s generation of parents who kept their children at home commonly placed their children in group homes as adults. Bill did not do this. He and his family did not want to. He has been a clear example of aging in place, in the community, and not always following the crowd. In 2022, group homes are no longer the automatic default for all. 9) Our transportation system needs an overhaul. Watching Bill and his older son drive his younger son to and from work until Bill was 90 was tough. It was a clear example of how poor public transportation impacts self-advocates and their families, and how little has changed in decades. 10) Parents of children with significant disabilities need to get to know families of children with disabilities in the generations ahead of them. Really get to know them. There is much wisdom and gratitude to learn. And during those times when we feel progress is too slow, the real history of the journey before us is just what we need to keep moving forward.

    Larissa Martin

    When Caregivers Comment on My Weight as Someone With Cerebral Palsy

    I am a person with a disability. I have cerebral palsy and am an amputee as well as being a wheelchair user. I also have an intellectual disability. I cannot transfer, so I must be lifted in and out of cars, restrooms, etc. So, this being the case, I have had to rely on aides and family to lift me. Over the years, my weight has fluctuated. I have gone on diets twice; once I was successful, but the last time I wasn’t. Eventually, I changed my lifestyle and have been vegetarian for the past three years. I love to eat healthy most days. I do enjoy some junk every now and then. I have had issues with body image and how I see myself. However, I am in a good place with that at this point in my life. That’s not to say I don’t still struggle; it’s a work in progress and it always will be. I have had two different personal care aides over the years, one for 10 years. My most recent aide has been my aide for about four years now. The one thing they have both said to me at one time or another is, “Either I am getting weaker, or you’re getting heavier.” Recently, my current aide said this — and mind you, she knows my history with my other aide and how I felt about myself for years. I don’t think she said it to be malicious; it was more of an off-handed comment. I said, “I am sorry,” because that has been my go-to response whenever an aide or family member makes a comment about my weight. I immediately go to that because I feel like it’s my fault, even though I know it’s not. This time, when I apologized to my aide, she replied, “What does it have to do with you?” My mind was blown! In my mind, it has everything to do with me! How could it not? If not, why say that knowing how sensitive I am about this topic? When people do this, they’re pretty much saying I am fat and need to lose weight. If you were in my position, wouldn’t you feel offended and hurt by comments like this? I would rather have a conversation instead of this constantly being said to me for years. It makes me question myself and my self-worth. Another comment I heard from my dad when we got my first accessible van was, “I am so glad we have this now.” I interpreted that as, “Thank goodness I don’t have to lift you anymore.” That might not be what he intended, but that’s where my mind went. In society people with disabilities, visible or invisible, have enough to worry about, whether that be accessibility, employment, or their own struggles with their disability. We don’t need caregivers or family members making comments to make us question our self-worth as individuals. We are enough just as we are. I think people do this because they don’t want to have hard conversations. They don’t know how, and they think this is a good way to approach this subject. Or possibly they’re just trying to be hurtful. Either way, it’s not OK for something like this to ever happen to you. Everyone’s weight fluctuates, disabled or not. I think if able-bodied people had this done to them, they would understand how upsetting it can be. We don’t need to change — society needs to accept us as we are. I may or may not be getting heavier, but your words hold more weight.

    Community Voices

    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.

    Community Voices

    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....

    Community Voices

    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.

    Community Voices

    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.

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