Down Syndrome

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Down Syndrome
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    Community Voices

    I'm new here!

    Hi, my name is Tiffnmom. I'm here because
    Our daughter has Down syndrome #MightyTogether

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    Teaching My Son With Down Syndrome Life Skills

    This week during my son’s occupational therapy time, the therapist started working on some skills with my son while I started slicing a big box of strawberries.  “When can George start working on cutting with a knife?” I asked.  “Let’s start today!” she suggested.  So, we divided the strawberries between us. This task was not easy for George, who has Down syndrome. His fingers are short and thick and he struggles with fine motor skills. Slicing strawberries is complex: using a sharp knife, cutting off the stem but not too much of the berry, slicing the fruit into smaller parts, and removing anything mushy or unripe. The therapist reminded him that knives are not toys and to keep the knife straight while being careful not to get cut. He also needed to rewash his hands a few times when a few strawberries got shoved in his mouth. After the initial excitement of using a knife, there were loud sighs about this task even though there were plenty more strawberries to be sliced. To cheer him on, I decided to motivate him by connecting the task to a future job skill at one of his favorite restaurants — Dairy Queen.  “You know this is good practice because someday if you are working at Dairy Queen, you’ll need to know how to do this when someone orders a strawberry sundae.” George thought about this and then mumbled something about how “Blizzards” are a better choice anyway.  Blizzards are a blended ice cream treat from Dairy Queen that likely wouldn’t need strawberries. Although I love his cleverness and sense of humor suggesting an alternative, I do want to make sure he has kitchen and other job skills mastered. This has made me think about: What other household jobs can he do or help with? Is he ready to follow directions and complete a task? Will he one day be ready to get a job and earn his own money? I came away from this experience with the realization that I need to involve George in more daily tasks in order to help him learn new skills and build stamina. A berry important lesson!

    Marya Ketchell

    What We Carry as Parents of Kids With Disabilities

    We carry it. The weight that comes with being the parents of a child with a disability. That does not mean we don’t love our kids fiercely. We do. In fact, we love them ferociously. And we carry it. The willingness to fight for them at any moment. At all costs. We carry it. The constant and endless advocacy. We carry the words. The words so casually and caustically flung in movies, music, on tv, at parties, during casual conversion, by friends and actors and acquaintances and musicians. Words like “idiot.” “Moron.” “Remedial.” “Stupid.” The R-word. Words designed to describe people and situations and animals as less than.  Words used to demean and devalue. We carry those words and we throw them away, again and again, so our children will not hear them. We carry education. Everywhere we go. We talk about why these words are inappropriate, why they hurt. Why they’re cruel. We carry explanations. That our kids are more alike than different; that we’re all people. And we’re all a little different too, we explain, and those differences make the world go round, so we celebrate them. Because wouldn’t life be boring if we were all the same? We say this over and over. To kids and parents and teachers and doctors. To people closest to, and farthest away from, us. Like a refrain. We carry expectations. Expect greatness, we say. Presume competence, we yell. See the ability, we sing. Just because they can’t talk yet does not mean they don’t understand, we shout. Include them, we pray. We carry them. Because they do get tired, our kids. They work so hard, harder than many people ever will, to do the things that come so easily for most. And they never give up. And much as we shoulder, they feel some of that weight. We carry it, we carry it all. But really, our kids carry us, by showing us every single day what grit and grace and perseverance look like. By breaking barriers. By being completely true to who they are. We carry it — and we carry them — with endless love. With complete resolve. But our kids — they also carry us.

    GAMUT Seal of Approval Identifies Adaptive Clothing for People With Disabilities

    The date was March 24, 2022. I happened to be watching “The View” on ABC when Mindy Scheier, the founder of GAMUT Management, was being interviewed with her son, Oliver. GAMUT is the leading consulting and talent company with and for people with disabilities. My daughter Yassy happened to be off work that day, so I called her in to watch. She was captivated by Mindy and Oliver’s interview. Yassy was quiet, but her interest was clear. When a fashion show came on the screen showing GAMUT models, who all had disabilities, Yassy’s interest turned to joy and excitement. Yassy is 22 and has Down syndrome and autism. She is also one of the over 800 actors/models on GAMUT’s roster. She is fairly new to this acting/modeling world so seeing this was new for her. I told her that maybe one day she can model in a show like that, something she already was seeing and noting for herself. Representation matters, more than most people realize. Fast forward to this summer when GAMUT made an announcement to its talent community. It stated that a new GAMUT Seal of Approval ™ will be launched later this year and asked its talent roster to send in very short videos stating what that seal means to them. The video was released July 26th, the anniversary of the creation of the ADA. Yassy was on board immediately, as were many others. As a parent who knows that we have to step up to help create the world we want for our children, I have tremendous admiration for leaders like Mindy who take one need and not only solve it, they change the world for more than their immediate concerns. Mindy started Runway of Dreams, and later GAMUT Management when her 8-year-old son Oliver wanted to wear jeans to school. Oliver has muscular dystrophy and no jeans would fit over his braces. He also needed pants without buttons and zippers. Being a fashion designer, Mindy decided right then and there to not only solve that immediate problem, but to make fashion more accessible for all. Oliver is now a very fashion-forward 17, and GAMUT is growing leaps and bounds, just like he is. It was an honor to recently speak with Mindy and her amazing team at GAMUT about this new Seal of Approval. GAMUT Management was organically born when many designers, companies, and interested parties wanted to learn more about how to responsibly be more inclusive for people with disabilities after discovering Runway of Dreams. They were reaching out to Mindy Scheier and her team at Runway of Dreams, which is a non-profit foundation. A for-profit company was created, GAMUT Management, providing consulting and talent management. Now the third arm of GAMUT, accreditation, is being finalized. This crucial piece is the GAMUT Seal of Approval.™ For consumers who are in the marketplace for adaptive products, either for themselves or those they care for: this Seal means the product has been vetted by people with disabilities, caregivers, experts, and professionals in the community. GAMUT’s diverse and very talented team is making sure that proper criteria are developed for this seal. The team consists of core members: Mindy Scheier, CEO, Molly Kettle, COO, Jonathan Kaufman, Chief Strategy Officer who also happens to have a disability, and Kerri McBee-Black, Chief Research Officer. They also have an independent group of evaluators that will be fluid. Integrity is very important to GAMUT and the seal, thus the need for the evaluators to be independent of GAMUT. This group includes people with disabilities, occupational therapists, physical therapists, researchers, designers, product experts, and others. The goal is to have the actual seal officially launched and featured by companies by the end of 2022. GAMUT cannot reveal most of the companies currently trying to get the seal for confidentiality purposes. However, they are proud to announce that adidas Accessories (hats, bags, socks, men’s underwear) is on board to earn the seal. GAMUT’s list of corporate clients to date includes companies like Victoria’s Secret, Target, LVMH, Tommy Hilfiger Adaptive, and Kohl’s among others. Part of Gamut’s mission states: “GAMUT is rebranding the way people with disabilities are viewed, marketed to, and represented in pop culture.” While all of this is true, I want to add a crucial point. Every time GAMUT interacts with a brand, designer, or corporation they are opening the company’s eyes as employers. Gently, with genuine interactions and relationships, companies start to see themselves as employers who can employ more people with disabilities. They look at themselves and start to take a corporate inventory of how they can become more inclusive and accommodating to all disabilities. This is not something GAMUT is formally tasked to do, it is something that is part of their core beliefs and culture, that spreads to those they work with. Organically. Sustainably. Look at that list of corporate partners above again, and then picture the truly large impact this is having knowing there are other companies not listed, and so many more to come. On March 24, 2022, 17-year-old Oliver Scheier said these profound words in his interview with “The View.” “It boggles my mind every day that such an insignificant ask (the jeans he wanted to wear when he was 8) can turn into something so world-changing. It’s unprecedented.” He then praised his mother who he loves very much. That ask and world-changing movement for adaptive clothing now will include a mark of quality to reassure everyday people like you and me that a stringent set of requirements for creating adaptive products has been met. Kudos to GAMUT Management! Look for the logo in this article in stores near you soon, and support those truly inclusive companies!

    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.

    Community Voices

    Plant your kid where they will grow

    <p>Plant your kid where they will grow</p>
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    Hey Educators, Let's Stop Comparing Our Students' Disabilities

    I’ve been working in special education for almost 10 years, and one of the things that frustrate me the most is when I hear teachers compare their student’s abilities to that of other students. I was once a student with a disability in the education system. Growing up, I always had trouble in school. I had a congenital heart defect, and because my disability wasn’t visible, I was always pushed to do things my body couldn’t do. One of the areas was in P.E. I was often told I had to run a mile but I physically couldn’t do it. When I said I couldn’t, I was seen as defiant, and my dad would be in the office fighting with the administration the next day. I switched schools constantly because of teachers pushing me beyond my physical limitations, and I was soon seen as a kid who just exaggerated things and had overprotective parents. When I got into middle school my undiagnosed autism started to become more of an issue. Where I once was an A student, my grades started falling, and I was seen as a gifted student that was just “lazy.” Society has been conditioned to compare. We often hear things like, “That person has it so much worse, so why don’t you try harder.” “If they can do it, then you have no excuse.” This thinking is deeply rooted in ableist ideas and inspiration porn. One of the things I try to remind educators when they see a student who seems like they are being lazy, not doing work, or distracted, is that we aren’t in their body or their mind. We are complex creatures and disabilities present differently in everyone. Many disabled students have multiple disabilities, chronic illnesses, and/or mental illnesses. These comorbidities can dramatically affect a student’s primary disability. One person with ADHD, autism, cerebral palsy, Down syndrome, lupus, anxiety disorder, etc. isn’t the same as another. Learning how your specific disabled student functions and thrives with their disability is the path to their success. I’ve seen a lot of educators get frustrated with a student when they compare them to someone who they deem as needing high support or who they think has it rougher than others. These assumptions are often based on the awkwardness of a student, their social interactions, how they communicate, or their physical limitations. They see these kids and determine that if they can get good grades and be a good student, then a student who might have a similar diagnosis and isn’t doing work must mean they are lazy or could do more if they only tried. For students who have an invisible illness, people might have less empathy towards them in comparison to other students who have a visible disability, or whose disability presents in a way that is more obvious. We think of those kids who are constantly going to the nurse as engaging in task avoidance instead of trying to understand how a disability might cause a child to go to the nurse’s office more frequently. Shifting our educators’ focus from comparison to acceptance, understanding, and education on how disabilities present differently in each person can really help our disabled students succeed. Just because one person can do a task a specific way does not mean another can do the same. Disabled students deserve an understanding of how their disability affects how they learn. Educators, stop comparing students’ disabilities and start educating yourself on ways to help our disabled students thrive.

    Michelle Tetschner

    Yes, My Son With Down Syndrome Can Ride a Horse

    My husband signed the three of us up to go horseback riding. It was last minute, within 24 hours of the ride, and neither one of us really thought to tell them that my son has Down syndrome. On the way over, we talked about it with Raymond and he said, “I can do this!” We agreed to let him try. We watched a quick 10-minute video that the owner had created. It showed some of the path and talked about what to expect, setting clear expectations for everyone. And then we were ready! When my son was younger, he had taken over three years of hippotherapy, so we knew that he could it. But we also knew that we needed him to be confident in himself! As the team started to load up the horses, they picked a specific, gentle horse for my son. He was loaded early, and was brought around the corner out of my sight. I started to panic, thinking maybe I had given him too much credit. Would this work? What if he falls off? What if we end up chasing his horse through the woods? What if, what if, what if? As I was finally put into the saddle and led around the corner, I saw my son. He looked so proud sitting there in his saddle and he waved to me. He was so excited! I looked over to the leader of the ride, and he rode up next to me and said, “He’s ridden before, hasn’t he?” I said yes, and was still talking as he rode away. I realized this man knew he had ridden before. He had no worries, and knowing that he’s seen it all, I should be OK with it too. He felt confident in my son — so should I. I took a deep breath and off we went. The ride was fantastic. We rode through the woods and to a beach area. Did I mention it was sunset? It was stunningly beautiful! I was able to enjoy the ride, be present in the moment, and relax. This isn’t to say that little things didn’t occur along the way. My son’s horse, while very sweet, was also a nibbler — meaning she would take every opportunity to stop and have a bite of leaves. A few other times, she went off course, and suddenly my son was behind me instead of in front of me. But we took them in stride, explaining to him how to get back on course and helping him through it. We considered them small bumps in the road, instead of making mountains out of them. It was a fantastic ride. It was also a learning lesson for us — go with the flow. Set up clear expectations and prep as much as possible. And mostly — if he thinks he can, he will!

    Dan Szostek

    Thanking the Teacher Who Believes in My Daughter With Down Syndrome

    Dear Ms. Michele: Thank you for believing in our Abby. Thank you for believing in yourself that you could teach a child with Down syndrome. Thank you for rising to the challenge of communicating with a child who is non-verbal. Thank you for helping Abby soar. “I want to see Abby soar.” Those were the words that you said to us during Abby’s parent-teacher conference. Those were also the words that reduced my wife and me into a pair of glassy-eyed adults in much need of a tissue. As you know, Abby is our only child. After she was born, we spent 78 days in the NICU of Children’s Hospital of Philadelphia. So it goes without saying that we were extremely protective of our little miracle. She was just 3 pounds at birth and still remains on the smaller size on all the growth charts. As an only child, and non-verbal, we were also very nervous about how Abby would handle herself around other adults and peers. When we first met you, Ms. Michele, we told you that Abby was not speaking yet and used sign language to communicate. We explained that she knew about 200 signs at that point. My wife and I did detect an element of worry and concern. We could sense your discomfort with the fact that Abby could not talk. But we totally expected a reaction like that after hearing this type of news. Flash forward to today and you have become a champion for sign language. You were extremely open to learning how to communicate with Abby through signs. Thank you for working so hard with Abby’s speech therapist to not only educate yourself in signing but to also teach your entire class to sign. You have totally exceeded our expectations. To hear the love in your voice when you share stories about the children signing in class and at home warms our hearts. When we talked about our passion for having Abby included in a Catholic School, you shared a story with us about your friend’s brother who had Down syndrome. As a young girl, you wondered why he could not attend school with the rest of the children in the neighborhood. Now, as a professional educator, you wonder what opportunities that young man missed by not being included in the local school. Thank you for sharing your experience; it has fueled our passion to ensure Abby is always included. The school principal told us when we first met her that she never wanted to deny a student a Catholic education because of a disability. It is teachers like you, Ms. Michele, that are making inclusive Catholic schools a reality. Lastly, we would also like to express a heartfelt thanks for the way you and the whole school jumped right in to embrace and celebrate World Down Syndrome Day. We were so grateful to be able to come in that day and read a book about kindness to your students. Seeing everyone, including yourself, “Rockin Your Socks” for Abby and other individuals with Down syndrome, showed us firsthand the caring environment you have created in your classroom. And when the local news showed up to interview you that day, we were so proud! And we will never forget your quote, “No matter what life throws at you. You just got to pull up your pants, put on your wacky socks, and just tackle it!” Amen, Ms. Michele! Amen! In closing, I come back to your words to us: “I want to see Abby soar.” Those words touched our hearts. Those words assured us we made the right schooling choice for Abby. Those words make us forever thankful that Abby has you as a teacher. Sincerely, Abby’s Mom and Dad

    Community Voices

    Superstar Heroes

    Giving birth to my son was such an emotional moment like all births. Being told shortly after that he has a genetic syndrome just by his appearance was even more emotional for me. A few months have passed, multiple specialist later the results were in. My son who we call Aj had a full whole genome sequence study on his DNA and it came back with no real answer. The changes that were found in his DNA had little to no evidence to support them and that made his condition a #RareDisease . I mean extremely rare! As the years came and went Aj was diagnosed with plenty of other medical disabilities. Some were more challenging than others but here are just a few to name; ADHD, Autism, #Microcephaly and more. As a mom I wanted to educate myself as much as possible so that I can help Aj get the best treatments, therapies and at home care I could. I also wanted Aj himself to understand that he had several disabilities. I encouraged Aj to strive like any other child and that his disabilities were limiting him in some areas but if he poured his heart into anything that his outcome would be limitless. I went to the library, book stores and online book shopping trying to find stories that were relatable and could help me explain Aj’s medical conditions without boring him. That was really hard I couldn’t find books that shared more than one condition at a time. So I wrote one! As fist time Author I became intrigued about helping parents, educators, physicians explain disabilities and life in general of a special needs child. I started with a series titled “Superstar Heroes” Aj goes to camp is the first book in the series I have self published this book in both English and Spanish. It is available on retail online book platforms. I have taken the negative and turned it into my positive story . I continue to educate myself, others, Advocate for children with special needs and also Interpret for Spanish speaking individuals so that they can better understand their conditions. Aj goes to camp features 6 diverse children, 6 disabilities with a common goal of inclusion. The six disabilities are Autism, #CerebralPalsy , #DownSyndrome , #HearingLoss /Deaf, #MuscularDystrophy , #RareDisease featuring Aj. All kids have the Cape-Abilities to be the greatest! Support us, spread the word and become a S.W.A.N kid too.