Intellectual Disability

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Finding the Right Fit, From Inclusion and Beyond: A New Day Program for Jessica after 20 Years.

This is our daughter Jessica's story and the narrative for many adults who require assistance with all daily living skills and have a severe intellectual disability.

Finding the Right Fit

It's bewildering how we lose the dedicated funding and energy invested in including individuals like Jess in public schools once they reach age 21. Typically, opportunities for Jess and her peers in adulthood confine them to self-contained classrooms, with most activities being exclusionary. Finding the right fit after an inclusive public school education is difficult.  

When our daughter, Jessica, was born in 1982, we didn't know she had a diagnosis. She was our teeny first baby. Jess came home from the hospital weighing less than five pounds, yet she was born near her due date. We called her Peanut at the time. We discovered, much later, that Jess had a rare chromosome deletion and was delayed in all her milestones. Our daughter, age 41, cannot care for herself, uses a wheelchair, is non-verbal, and has a severe intellectual disability. Jessica is also the brightest, most joyful star in the room. 

Early Education

 Jessica's early education encompassed numerous schools and classrooms. Federal Early Intervention for Infants and Toddlers was not enacted until 1986. It was still 1982, and we enrolled Jessica in a local infant stimulation program for babies with developmental delays. She transitioned to a special education classroom in a center for children with special needs at age three, and at age five, she went to a school district Board of Cooperative Education (BOCES) program. The program was over 30 minutes from our home, and Jess remained in that program, which moved from district to district until she was twelve.  

Meanwhile, I worked with our local education district, Committee on Special Education (CSE), to include Jessica in our neighborhood middle school. Like the line from the old TV show, "Cheers," we wanted everyone to know her name.   At Jessica's CSE meetings, we planned intensely for her return to the district and entry into middle school. The school prepared to welcome its first student in a wheelchair.

Success

One of the first times I knew this was a success was when I took Jessica to our local food market. Some of her peers were in the store, and instead of getting the "who is that in the wheelchair" glare, we received a warm greeting. The kids approached Jess, called her by name, and said she attends my school. This gesture brought tears to my eyes.  

High school was quickly approaching, and in our and the district's opinion, Jess needed another change as she prepared for graduation and adulthood. Full inclusion in high school would not have the same benefits as in the lower grades. We believed Jess would not get the same opportunities for friendship and socialization in a secondary school math or science classroom.   

Once again, Jess returned to BOCES, but this time, the setting was in our neighborhood school. Her teacher, Leslie (Les), set up a reverse inclusion program whereby interested high school students entered Jessica's classroom and assisted. Jess joined the chorus during high school and participated in other typical activities. She still hums the music scales learned in high school chorus over 20 years ago.

Prom Date!

Jessica's next transition was to an adult day program. At her adult program, we hoped that Jess would feel useful, have friends, laugh, hum familiar tunes, and continue to maintain the goals she achieved in high school and strive to reach new heights.   Adulting in Jessica's world is far different than in public schools. The regulations are less rigorous than in public schools, the staffing requirements are inconsistent, inclusion is non-existent, and the hope for daily experiences in the community has yet to come to fruition.  

WHAT WAS ALL THAT INCLUSION FOR  

Many of Jessica's peers, who have more life skills, are in supportive employment and other inclusive community adventures. Yet, individuals who require more daily assistance often get stuck in exclusionary settings.    Jessica's original adult day program started differently. They explored the community, took field trips, and left the building. We connected with many staff and developed relationships.

A lot changed after Covid, and Jess was out of the program for nearly three years. A few months ago, I visited Jessica in her current classroom, saw the lack of interaction and activity, and knew it was time for a change.

The system is broken. New staff often enthusiastically start their positions, hoping to make a difference in somebody's life. Yet, the red tape and restrictions usually knock them down. This profession requires a significant level of responsibility, yet the wages provided are not commensurate. 

Adult programs require a culture of creativity, respect, collaboration, and encouragement. Our daughter, Jessica, loves meeting new friends, cherishes music, and enjoys outings. A way to incorporate more community activities into a daily program should exist.  

Jess has been in the same day-habilitation program since graduation in 2003. After##@ 20 years, we have decided to transition to a new program.  

We HOPE for the future.#RareDisease #Parenting #Transition #SpecialEducators #SpecialNeeds #dayhab #dayprogram #Disability #IDD #Hope #FamilyAndFriends @amanda-buck @amanda-hvass @amanda-snyder @breecoffey @cherieehlert

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Shopping at Trader Joe’s

Does anyone who struggles with this issue? I have mild intellectual disability, my biggest issue for me is money/budgeting and math I hate so much and i went shopping by myself tonight and this is how much I spent in total does anyone know any tricks/visual aid or something that I could understand with this sort of thing that will ease my mind and make it fun for it also?!

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Questions? I have intellectual disability and physical disability plus bipolar type 2. I just feel really confused and hurt.

Am I in the wrong?
Should I not have said anything?
Can I do anything to keep things like this from happening?
Did I do something wrong? Am I just talking and he thinks it's flirting?
I have other male friends who have atusim but they don't make me feel unsafe or uncomfortable-Is it just because I dated him?

Back in 2011 I started a college program for people with intellectual and physical disabilities. I learned a lot from the program and gained more self-confidence. I graduated in 2015.

In 2012 I dated one of my friends who has atusim and the relationship did not go well, so I broke up with him..
Ever since that day he has dated other females but has said and done things to me that made me uncomfortable and feel unsafe, and I just feel like i couldn't be his friend anymore because he would say sorry but then go back to what he was doing, then would use his atusim as an excuse.

I have cognitive/ learning disabilities, a physical disability, also bipolar type 2 and have never once used them as excuses.

So go forward to last night were I just told him look you a nice guy but time and time again I have told you about your behavior towards me that makes me uncomfortable and feel unsafe, yet I haven't seen a change in you, when you told me that you would not make me uncomfortable and feel unsafe again.
When I take someone at their word and they haven't changed their behavior I have had to walk away.

All i did was explain myself and he blocked me on everything.

I'm just sad.

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Self diagnosing

I think that I have brain damage, and that it’s irreversible. I lose my words, I twitch, and when I twitch, it’s like my brain does a hard reset. I am supposed to be hearing from a neurologist to get an appointment in the next few days. I also called work and asked for FMLA, but I haven’t heard anything as of yet. I’m trying to adjust to my new normal, but it’s frustrating and at times, hopeless. I feel like I’m emotionally 15-17, even though I’m physically 32. I don’t feel capable. #BrainInjury #MentalHealth #BorderlinePersonalityDisorder #IntellectualDisability

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I’m new here!

Hi, my name is goofieruthie. I'm here because

#MightyTogether im a female adult who has intellectual disability (miled) and live on my own and want to lern more

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Physically Disabled, but Not Intellectually Disabled

Think about what you do best. Are you creative, a musician? Do you cook well? Were you a star athlete in high school, and do you still try to stay in shape? Maybe you are very cerebral and well-studied. You are humble enough to know you have weaknesses, but see your strength as your contribution to the world. Something you can fall back on and say you are good at, even in the face of other challenges you may face in life.

Imagine a world in which not only are you not recognized for your strengths, but your strengths are actually seen as weaknesses. Ever since you were a kid, people assumed your strength was a weakness, and you know that there will always be people who make that assumption until the day that you die, no matter how hard you work at your strength or how many accolades you receive.

There is a widespread misconception that most people with physical disabilities also have intellectual disabilities. Statistics show that this is not the case. Common physical disabilities include cerebral palsy, spina bifida, and muscular dystrophy. Around 50-70% of people with cerebral palsy do not have any intellectual or learning disabilities, according to the www.ninds.nih.gov/health-information/disorders/cerebral-palsy and Cognitive Impairment Estimates show that around 70% of people with muscular dystrophy do not have any intellectual or learning disabilities, according to the Quest - Article - When Neuromuscular Disease Affects the Bra.... According to the www.nichd.nih.gov/health/topics/spinabifida/conditioninfo/di..., 80% of people with spina bifida do not have any intellectual or learning disabilities. These statistics do not include many other forms of physical disability, including, but not limited to, physical disability as a result of chronic illness or injury.

The truth is that not only do most people with physical disabilities not have intellectual disabilities, but many of us have above-average intelligence. Like a blind person with strong hearing or a deaf person who can see well, people with physical disabilities often use their intelligence to compensate for their weaknesses.

As a child, I was not playing on sports teams or dancing in recitals. I was reading, working on homework, and trying to win academic awards. It’s what I knew I could do well, and gosh darn, I was going to excel at it. For most of my academic career, I was not in special education classrooms. I was in Honors classrooms.

This is not to say people with physical disabilities are better than those with intellectual disabilities or that intellectual disability is a valid reason to treat someone poorly. Every person-whether physically disabled, intellectually disabled, or both, deserves to be recognized for their strengths and accommodated for their weaknesses. (According to the www.psychiatry.org/patients-families/intellectual-disability..., 85% of those with intellectual disabilities only have a mild intellectual disability. Also, even those with severe intellectual disabilities have value as human beings.)

This is about the many times I’ve overheard people whisper in shock, “Jen’s actually smart.” This is about people speaking more slowly or over-explaining things to my friends and me. This is about employers making pre-judgements about candidates with visible disabilities. This is about how many accessible recreational activities, social activities, and even church programs for people with disabilities are geared toward those with intellectual disabilities or even children. (At times, the leaders of such programs assume grown adults with physical disabilities need their parent’s permission to participate.)

This is about the strengths of people with physical disabilities being mistaken for our weaknesses.

Quest - Article - When Neuromuscular Disease Affects the Brain | Muscular Dystrophy Association

If you’re the parent of a child with a neuromuscular disease, you’ve probably heard something about learning disabilities, mental retardation or emotional problems that accompany some of the muscular dystrophies and related diseases. But this information is often expressed in vague, general terms, leaving a parent wondering what specifically has gone wrong, whether the child’s school problem is directly related to his neuromuscular disease or not, and — perhaps most important — what can be done to help. Several neuromuscular diseases can involve cognitive problems.
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Getting Away

I want to get away specifically from people who have problems like my neighbor. I have done everything for her and she is almost blind and is defensive about her issues.

She acts like I have an intellectual disability and said in front of me to my mom that she’s impressed with how my mom handles our situation. Our situation?!

She is really prideful and thinks she needs no help. When my mom helps her she goes on and on about how wonderful it was but when I offer she is really rude.

I don’t know why I expose myself to her. I feel like getting into the car with a coffee and driving away.

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Mothers Day 2023

To the woman who had admired me since birth and gave birth to me. 🌸🌺

엄마 어머니 날 축하해요 사랑해요 😘🩷

Mom without you knowing I just want you to say thank you. Thank you for believing in me.

Thank you for being a number 1 fan of me. Thank you for making me smile.
Thank you for being my inspiration.
Thank you for sharing your experience.
Thank you for sharing your testimony.
Thank you for everything. I appreciate you always.

Mom even though you doubt so many times you made it through I love you mom and I want you to know I will succeed in life.

God has chosen you to be my mom. I know it is tough seeing me in my battles you always reassured me saying it is going to be okay when things are rocky.

So blessed that I get to see you each day and even make the memories we have.

Thank you for the delicious food you always make and I will love you forever.

The quote from the book Love You Forever by Robert Munch goes “I’ll love you forever, I’ll like you for always. As long as I’m living, my mommy you will be” 💜

You went through so much mentally, physically and spiritually but I am always proud of you mom and can’t wait to make you proud next from my first milestones, from graduating all schools from elementary, middle school, high school and college from getting a chance to volunteer in the best hospital yet SickKids and so much more

You inspired me to keep going on my feet 👣
You always knew there was a finish line 🏁
You always think I can and I thought I could 🚂

Happy Mother’s Day 2023 mom cheers for more
I will always be your daughter who has autism, hearing impairment and mild intellectual disability 🫶🏼

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Letters to me part 3

This is part 3 of my letters to me. I am so sorry for the long long message those who don’t like lengthy messages. Also, reflect on the other 2 before you come to this one. Read it with a careful and thoughtful heart again 🙏🏼🖤🥺

Dear young teenage Jenny Jin-Young Lee. Hey girl it is the adult Jenny writing this I know you can’t come back but here is my letter to you. I know getting abused was a nightmare. But you kept climbing up the mountain called life. I know striving through for being autistic, hearing impaired and mild intellectual disability along with dyslexia is a challenge but you are strong. No matter who you hurt that's what you expect yourself to say, isn't it?

You do have a little secret you are broken behind each mean mark, rude even a glance, snipe, or comment you are terrified of being the villain in everyone’s life you want to be good how when everyone sees you as a snake. Understanding yourself is hard I get it. Being one of the other people who is diagnosed is harder. You always get judged before people know you. As you can see Draco Malfoy from Harry Potter is the same as you and out of the blue, you wanna be a part of other people’s lives.

Being a snake does hurt the only way you can do is learn to love the pain. Therefore you are part of a Slytherin house and think about those who love Harry Potter. You can feel like you will never be anyone’s hero.

But you are finished being the villain of your life if you think you are the “bad guy” in other people’s lives. I know it was rough when people misunderstood you just of course being Korean and so much more.
Darkness will make you felt not good enough for anyone, feel want to collapse, would make your organs go worse, abused, scared, make impulsive but dumb decisions, feel insecure, embarrassed, discouraged, emotionally declined, have fake friends even wannabes also be a liar, etc as you get older.

Also losing Lily Leah your Yorkshire terrier was the biggest heartbreak from the moment you lose her the more you will strive to have another dog which I know you will. After you will lose your great-grandmother on your mother’s side of the family. Straight after you will lose your very first mentor in life but some of the things you will find new things. For example new dog and new mentors.

But always know everything will be okay and there will be people that assume everything about you but don’t let them do it to you because you are going to just do it and stay quiet about everything much as possible and wait until you are ready. Everyone will be stoked to hear everything you went through.

You will make the people around you proud and you aren’t going to be picture-perfect I promise you will be okay. It was hard to believe in yourself but it is okay you got this.
Sometimes you will have some deja vu moments when you are older you will see what it is. Keep at it Jenny as your parents would say 화이팅 진영아! You will be like a champion in your life soon.I know you will go through a lot but it was hard. You went through 2 surgeries but when you get older you will have 2 more so keep trying to find interventions to hear in your ear that is your right but the left is for something else. Sometimes you gotta know to keep trying and moving forward.

But as you get older you will have fake friends and wannabes but you will find them around the age of 23. You had countless moments where you would cry until you couldn’t even cry anymore. No one saw you crying because you just didn’t want to fall. But it is okay to teenager Jenny I am sure of it. Also the teen years you had were 2008 to 2013 they will always be memorable and cherish because those were the days where you felt yourself but you will continue to do so.

From Jenny the adult

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I just wish my intellectual disability doesn’t control my life. I wanted to get a mother’s gift for some friends I know because why not but all of sudden I have to email this it really pisses me off. 😒