Down Syndrome

Join the Conversation on
Down Syndrome
79.1K people
0 stories
2.6K posts
About Down Syndrome
Explore Our Newsletters
What's New in Down Syndrome
All
Stories
Posts
Videos
Latest
Trending
Post

I don’t know how else I would do it


Hello everyone my name is Leah and I’m a mom to a spectacular 13yr old girl with Down syndrome and autism. I also have 2 20-something’s with autism who have moderate support needs, a neurotypical 18 yr old, a bipolar 15 year old, a wonderful neurotypical husband, and have adhd and autism myself. Life is always a challenge in our household, but there is love in abundance. At my daughter’s most recent IEP meeting the head of our school district’s SPED program sat in and at the end told me he was really impressed at how I problem solved my daughter’s struggles at home and school and all I could say was that I don’t know how else I would do it. I love puzzles, and that is how I tackle every issue and struggle that comes along. What is the hurdle/behavior issue/need, what are the potential causes for the gap between where we are and where we need to be to help her, and what are things we can do to bridge the gap and make the puzzle whole. Because it’s not REALLY a her problem as much as it is a gap; a gap in understanding between us and her, a gap in development between expectations and where she actually is, a gap in knowledge/adaptations/skill building. She doesn’t see any problem, just frustrations, so either we can find a way to bridge the gap or she’ll find her own way and we may not appreciate her methods. To illustrate, we had been discussing at that same IEP meeting that the struggles with my daughter eloping from class and also spending expensive amounts of time in bathroom breaks. In thinking about the issue before the meeting I realized that the place she was eloping to was similar to her play area at home and that at home she often took long bathroom breaks when she needed quiet time. When I checked with her teacher about when her incidences occurred that were always after gym, music, lunch, her time in her gen-ed classroom, or an exciting activity. That’s when the puzzle piece that I needed clicked into place, she was getting overwhelmed by the noise and excitement. Her teacher set up a quiet corner for her in the classroom with noise canceling earmuffs where she could go when she needed to. Since then there has been no more eloping, no more excessive bathroom breaks, and she is attending much better to her homework. I just had to find the right puzzle pieces. #DownSyndrome

9 reactions 4 comments
Post

I'm new here!

Hi, my name is Bernie_85. I'm here because my wife and I were just informed that our third child has Down syndrome. We are terrified and processing what this means.

#MightyTogether

7 reactions 5 comments
Post

Why I Tell My Daughter with Down Syndrome to “Keep Being You”

On our recent drive to a birthday party, my seven-year-old daughter stated, “Mommy, this is the same way we go to Pizza Box,” our local pizza place. I smiled when she said this, as my daughter inherited my love of maps and keen sense of direction, and often spends our time in the car talking about the “new way” we are traveling and pointing out familiar and well-loved places: her school, local library, coffee shop, the YMCA.

In my previous essays, I shared the joys of raising Hazel, who has Down syndrome. Hazel’s strengths and talents are undeniable; she is a force for good, with her signature smile, big heart, and genuine love and concern for those around her. She is curious and smart. Like her dad, Hazel loves music, devours books, and enjoys nothing more than being silly. Like me, she loves the outdoors, adores her pets, and is always up for a chat at the end of the day.

Hazel also challenges me—often multiple times a day. She is strong-willed, stubborn, and often believes that her way is not only the right way but is the only way to do something. Her personality often mirrors my own, and because of this, moments can be hard. Really hard.

But at the end of every day, as I see that sweet face asleep in her bed, I am in awe of my little girl.

Here’s why.

While Hazel’s personality, strengths, and favorite activities are similar to her dad and me, Hazel faces additional challenges and biases that we have never faced —and likely never will. Because when Hazel was born with Down syndrome, she was also born with a heart defect that required surgery at three months old, low muscle tone for which she has had weekly PT since six months old, and the reality that many skills would just take longer and be harder for her to acquire—from speaking and walking to playing sports to reading and writing to being accepted for who she is.

And for the last seven years, she has grown and strengthened her mended heart, developed the muscle strength to run, jump, hop, and climb, and spent each and every day working hard on her motor, speech, and social skills—in therapy sessions, in the classroom, and on the playground.

When Hazel was a baby, then a toddler, then a preschooler, I was often by her side, cheering her on. Now a first grader, Hazel spends her days at school. I say goodbye to her each morning as she gets on the bus, and I remind her to listen to her teachers, be kind to her friends, and have fun. And when she gets off the bus at the end of her day, looking tired and seeming a little quieter than usual, my heart aches just a bit.

Because as Hazel grows up, the reality of having to work longer and harder becomes more real. Hazel tells us that learning is hard. She talks about when a friend makes her sad. She sometimes struggles to find her place in the crowd. As her parents, we try to work through these challenges together. We read books together, play math games, talk about what being a friend means, and remind her that not everyone will end up being a friend. And that is okay.

As we celebrate our seventh World Down Syndrome Day, we will wear our mismatched socks, visit Hazel’s classroom to read a book and talk about Down syndrome, and stand proudly as our daughter shares her About Me poster with her class. From this, I hope others will realize that while Down syndrome is a part of who Hazel is, it does not define her.

My little girl has met many challenges in her young life, and she keeps moving forward—often with a smile and a laugh. She is an inspiration to me and, I believe, to those who have been lucky enough to meet her.

Keep being you, Hazel. The world is a brighter place with you in it.

4 reactions
Post

There is always light

Atara must have been a few months old when we went for the genetic testing and counselling my husband insisted that we go for. The day we went was a cold, cloudy, wintery day; a perfect description of how I felt about what we had an appointment to do.

I regretted it soon after I made the appointment. If it had been for a family’s medical problem, then it should have happened. It’s true; an ounce of prevention is worth a pound of cure. If only we knew that Atara had nothing within to fix. Had it been clear that a chromosomal abnormality had been in my family, a test would have also been warranted. If only it was clear to me that though it may have been warranted, but far from necessary.

The outcome of the test was clear. Unfortunately, it didn’t take Atara, the human, into account. Her details may be a part of a spread sheet, but she was an adorable, bouncing baby at the time. As the brainless rider, I didn’t see the child.

Technically, the medical label, Down Syndrome talks about chromosomes. Most often people have 23 pairs of chromosomes. About 4% of cases of Down syndrome are caused by something called translocation. This can be random or inherited from a parent. This happens when the extra copy of chromosome 21 becomes attached to another chromosome. Atara has translocation.

Whether or not my husband or I actually stated that the Down Syndrome came or didn’t come from our family history, it was at the back of my mind. It took a long time to free myself of that possible blame. It was another blockade to our family and ourselves. If we as a couple shifted our world of blame, doubt and shame to a world of allowance, tolerance, acceptance and trust, well….we wouldn’t have been us.

Post
See full photo

Just a little about me

I always felt like my time on this earth was limited.
When I was a little girl, I lived in my head because the “reality” that I would make in my head was so much safer. As the sun went down and the sky grew darker and darker I would lie in bed with my eyes closed trying to drift to sleep trying to come up with a new reality in my head but all that I could think about was how scared I was. When I did fall asleep, I’d wake up and just cry. I have done that for as long as I can remember. My dad has been an alcoholic since before I was born and my mother was a workaholic. My dad was never really a dad to me but took my brother (who has Down syndrome) to every sports game ever. I used to beg my mom to leave my dad. The only time my dad and I spoke was when he was yelling at me. The first time I ever spoke about suicide was to my mom one night after weeks of being yelled at, and crying myself to sleep every night by my narcissistic father during my freshman year. I looked at my mom and said, “ I feel like the world would be a better place if I wasn’t in it.” At this point, I’ve been self-harming for two years. I found out my mom was having an affair when I was 15 and at 16, I moved with my mom and little brother. A few months later I was raped by my boyfriend I was dating at the time. In 2015, I began dating someone I thought was the love of my life. He fooled me because he was a psychopath. This psychopath introduced me to meth. I had been dabbling with drugs since High School and a very committed pot smoker since 7th grade but meth quickly consumed every ounce of my body, my mind, and my spirit. I was living with a psychopath, enduring abuse every day and then smoking meth to numb every emotion I had. On August 28, 2017, he attacked me pulled a loaded gun out, and told me he was going to take my life and then his. That was the last time I used it for the next 5 1/2 years. I began drinking, using cocaine, and popping benzodiazepines every night and when I didn’t have to work that day then it was all day. February 27, 2018, 10 days after my 23rd birthday I attempted to take my own life. I was sent to a psych ward where I spent three days and then my dad picked me up and took me to rehab. I stayed a month and moved in with my dad, step mom and brother. I had my new diagnosis of bipolar, I was on medication, I started going to meetings and aftercare and I was doing good until I started drinking again. I was drinking 1 sometimes 2 bottles of wine a night and stopped taking my medication. October 17, 2018, I was date raped. I woke up the next morning, naked and drove home while still intoxicated. When I parked and started walking towards the house, my dad came out and we started fighting and that night I took roughly 40 or more different medications. I woke up in the ER throwing up and all I remember feeling was pissed. I was sent to another psychiatric ward and spent 5 days. I moved in 2019 to my moms and step dads and I significantly reduced my drinking and got a really good job. I moved back to my hometown two years later to live with my grandpa and my grandma who has stage 7 Alzheimer’s. It wasn’t too long until my old lifestyle slowly creeped in. I was living at the bars, doing cocaine and then in the summer of 2022, I relapsed on meth. The biggest lie I have ever told myself was that I had control over my addiction. I became the biggest liar to everyone around me, including myself. I was getting myself into awful, scary situations and it didn’t matter and I stopped taking my medications. My body also started doing some scary stuff. I started experiencing vasoconstriction and that led to me seeing a rheumatologist because I was convinced that what I was experiencing was an autoimmune disease and not caused by me poisoning my body every chance I got. In August of 2023, I was raped and two months later, I finally admitted to myself that I needed help. I detoxed by myself in my room and after three weeks, I used again. In December, I went to the ER and they asked if I wanted help and I declined and then two weeks later they called me again and I accepted help but I never followed through. January 8th, I was at my suppliers house and around 4:00 AM I looked at him and said I was done and I meant it…. After being clean for a couple weeks, I couldn’t stop feeling really really depressed. That feeling that I’ve had since I was a little girl was still so strong. I just wanted to die. I wrote a suicide note which is something I didn’t do the last two attempts but this time, I really really thought I wouldn’t wake back up to have to deal with the consequences of trying to kill myself for the third time. February 13, 2024, I had my outpatient group meeting and when it got to my turn to talk about how I was doing, I didn’t say much, all I could think about was my note. After group, I had my therapy appointment over video and I started telling her that I was “tired” and that “ I wanted to go out fast.” She told me that I either drive myself to the ER now or she has to call the police. I drove myself to the ER and started to tear up. I walked in and saw my best friend of 7 years who works at the ER. The same best friend that sat with me while I was on my first 50-1-50 hold before being transferred out. I was in the ER for 1 1/2 days and then transferred to the psych ward. I spent 7 days and was put on new medications and I left to ward feeling like a new person and for the first time in my life I didn’t have suicidal thoughts. In the beginning of March, I met someone from my outpatient groups and we were glued. He had two weeks clean and I was a little over two months clean. One morning, I called him and when I went to his house he was high. He told me he used the night before and I said, “ Ok. This is your only day” and then I drove us to my supplier’s house. 76 days down the drain. I was the highest I’ve been since the first time I ever smoked meth. The next day, I couldn’t drive, I was hurting all over, I could barely walk and I definitely wanted to die. Today, I have 11 days clean and I don’t know what’s next for my life but I do know that I want to help others who have been through similar situations and let them know that they are not alone. I want to share my story. #MentalHealth #SubstanceUseDisorders #SuicidalThoughts #Addiction #ComplexPosttraumaticStressDisorder #Trauma #BipolarDisorder #Depression

18 reactions 3 comments
Post

Spread the word

Today is crazy socks day to stand for so many people I love. I work at a school for children with disabilities. Some of our children have down syndrome. They are some of my favorite people. I get hugs and fist bumps daily. I am wearing heart socks and heart shoes because I love all my little friends that struggle but are so happy. #DownSyndrome

1 reaction
Post

What are we celebrating?! (MARCH)

national developmental disabilities month
Women’s history
National MS Education and Awareness Month
March 1-31: Alport Awareness Month March 1-31: Brain Injury Awareness Month
March 1-31: Brain Tumor Awareness Month (UK only)
March 1-31: Deep-Vein Thrombosis Awareness Month
March 1-31: Malignant Hyperthermia Awareness Month
March 1-31: Multiple Sclerosis Awareness Month
March 1-31: Myeloma Action Month
March 1-31: National Bleeding Disorders Awareness Month
March 1-31: National Cheerleading Safety Month
March 1-31: National Colorectal Cancers Awareness Month
March 1-31: National Endometriosis Awareness Month
March 1-31: National Kidney Month
March 1-31: National Nutrition Month
March 1-31: Problem Gambling Awareness Month
March 1-31: Save Your Vision Month
March 1-31: Trisomy Awareness Month
March 1-31: Workplace Eye Wellness Month
March 1-6: National Aplastic Anemia & MDS Awareness Week
March 2: World Teen Mental Wellness Day
March 3: World Birth Defects Day
March 3: World Hearing Day
March 4: HPV Awareness Day
March 4: World Obesity Day
March 5: Dissociative Identity Disorder Awareness Day
March 7: National Hospitalist Day
March 10: National Women and Girls HIV/AIDS Awareness Day
March 10-16: Patient Safety Awareness Week
March 10-16: Pulmonary Rehabilitation Week
March 10-16: Sleep Awareness Week
March 11-17: Brain Awareness Week
March 14: World Kidney Day
March 15: World Sleep Day
March 17-23: National Poison Prevention Week
March 18-24: National Drug and Alcohol Facts Week
March 20: National Native American HIV/AIDS Awareness Day
March 20: World Oral Health Day
March 21: World Down Syndrome Day
March 24: World Tuberculosis Day
March 26: Epilepsy Awareness – Purple Day
March 26: American Diabetes Alert Day
March 30: National Doctors’ Day
March 30: World Bipolar Day
March 17: Saint Patrick’s Day
March: autoimmune diseases awareness month

(edited)
12 reactions 4 comments
Post

Young Adult Books Featuring Genetic Disorders

Having genetic disorders can be isolating. So here are 4 young adult books about genetic disorders to tell you that you’re not alone:

1. “A Step Toward Falling” by Cammie McGovern
*This book may trigger individuals who experienced sexual abuse, violence, or assault. Please do not read if this triggers you!

Cammie McGovern follows up her breakout young adult debut, “Say What You Will”, with this powerful and unforgettable novel about learning from your mistakes, and learning to forgive. Emily has always been the kind of girl who tries to do the right thing—until one night when she does the worst thing possible. She sees Belinda, a classmate with developmental disabilities, being attacked. Inexplicably, she does nothing at all. Belinda, however, manages to save herself. When their high school finds out what happened, Emily and Lucas, a football player who was also there that night, are required to perform community service at a center for disabled people. Soon, Lucas and Emily begin to feel like maybe they're starting to make a real difference. Like they would be able to do the right thing if they could do that night all over again. But can they do anything that will actually help the one person they hurt the most?

2. “Just Breathe” by Cammie McGovern
David Sheinman is the popular president of his senior class, battling cystic fibrosis. Jamie Turner is a quiet sophomore, struggling with depression. The pair soon realizes that they can be their true selves with each other, and their unlikely friendship develops into something so much more. But neither Jamie nor David can bring themselves to reveal the secrets that weigh most heavily on their hearts—and their time for honesty may be running out.

3. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

4. “Rules for 50/50 Chances” by Kate McGovern
A heartrending but ultimately uplifting debut novel about learning to accept life's uncertainties; a perfect fit for the current trend in contemporary realistic novels that confront issues about life, death, and love. Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she's going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington's disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family's genetic curse, Rose is skeptical about pursuing anything that presumes she'll live to be a healthy adult—including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

📚 I hope this list can help someone 🧬

#themightyreaders #DownSyndrome #CysticFibrosis #HuntingtonsDisease #SickleCellDisease

2 reactions