I'm new here!
Hi, my name is Nene_6513. I' AM HERE BECAUSE AFTER WAITING SO MUCH TO REALLY KNOW WHAT MY 10 YEAR OLD SON , WAS DIAGNOSED WITH F70 INTELLECTUAL DISABILITY HAS TO DO WITH HDHD.
Growing up, it was very hard for me to fit in with other people from my community. I always felt different from other kids and I never really fit the stereotypes of a "brown" girl. The stereotype where all south Asians were good academically in school.
I was diagnosed with a Mild Intellectual Disability and I didn't understand myself and my disability until I was 18. Having this disability has made my life much more difficult as it's a general learning disability. It was hard for me to do math as it was a complex subject and it was also hard for me to understand certain things.
It was hard to explain what I was going thru to those around me. I am high functioning so people thought there was nothing wrong with me but since my disability is invisible people can't see it. I always hated being compared to neurotypical people around me, those who did well in school and could understand things very fast. I felt very alone and in my head all the time.
My parents never understood me as they thought I was normal-looking and just lazy. It was hard having south Asian parents and then being neurodivergent.
They put very high expectations on me and they saw these other people doing well and they were also south Asian. So, they just thought I wasn't trying hard enough. They even thought there was a cure for my disability. But there is obviously no cure for it. I just did what I could do best.
To this day, I still struggle to do things that many neurotypical people can do so easily. It's very hard and one thing that really throws me off is when people tell me how easy it is for them to do things but they don't understand that there are others in the world like myself that struggle to do those little things.
I want to end off my post by saying if you have anyone in your life with the disability I have please be patient and supportive of them. They are human as well and deserve to be respected.
We aren't lazy, we're just different and sometimes that might not be enough for you neurotypical people but we just want you to accept us for how we are.
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.”
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
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