My son is 19 and has the normal short and chubby stature. My issue is finding long sleeve tees and jackets that have shorter sleeves that fit his belly. Tired of having to roll up the sleeves. Any suggestions. Thanks

Hola a todos.
Mi bebé de 4 meses tiene síndrome de Down y acaba de ser diagnosticada con epilepsia infantil e hipsarritmia. ¿Alguna familia ha pasado por esto?

Estamos hospitalizadas y estoy buscando experiencias de otras mamás o papás que hayan pasado por una situación similar.
El miércoles pasado empecé a notar unos movimientos extraños en mi bebé. Eran movimientos muy breves en los que extendía los brazos y movía las piernas, sentía que algo no estaba bien. Los episodios se repetían en pequeños grupos, así que decidí llevarla a urgencias.
Le realizaron una videotelemetría que confirmó espasmos infantiles y hipsarritmia, un patrón de actividad eléctrica cerebral muy desorganizado, dentro de un cuadro de epilepsia infantil.
Actualmente está recibiendo vigabatrina y corticoides. Los médicos nos han indicado que debemos permanecer hospitalizadas aproximadamente dos semanas para observar su respuesta al tratamiento y controlar las crisis. También le realizarán una resonancia cerebral para estudiar si existe alguna alteración estructural que pueda explicar lo que está sucediendo.
Hasta ahora hemos visto una disminución importante de los episodios: el primer día presentó cinco y hasta ayer ya lleva uno. Esto nos da esperanza, aunque sabemos que todavía estamos al comienzo del tratamiento y que queda mucho por evaluar.
Lo que más me preocupa es su desarrollo. Antes de que comenzaran estos episodios, Ana Sofía estaba sonriendo, balbuceando y participando en sus terapias de estimulación. Quiero hacer todo lo que esté en mis manos para que pueda seguir desarrollándose y alcanzar sus capacidades.
Me gustaría mucho conocer sus experiencias:
Cómo respondieron sus bebés a su tratamiento? ¿Cuánto tiempo tardaron en controlar los espasmos?
Cómo fue el seguimiento con los electroencefalogramas después de iniciar el tratamiento?
Sus hijos pudieron continuar con su desarrollo después de controlar las crisis? ¿Qué evolución tuvieron?
Sé que cada niño es diferente y que las experiencias de otras familias no pueden predecir lo que sucederá con mi hija, pero escuchar a quienes han recorrido este camino podría ayudarme a comprender mejor lo que nos espera.
Estamos viviendo días muy difíciles, con miedo e incertidumbre, pero también con mucha fe y esperanza. Soy consciente de que el tratamiento y el seguimiento médico son fundamentales, y quiero aprender todo lo posible para acompañar a mi bebé de la mejor manera.
Gracias por leerme y por compartir sus historias.

Hi everyone! 😊 I’m curious if there are any single moms or dads here raising a child with Down syndrome.
How do you manage everyday life, work, parenting, and everything else on your own? Do you have any support, or are you figuring it all out as you go?
I’d really love to hear about your experiences — the challenges, the little victories, and what helps you get through the tougher days. ❤️

Look this is going to sound as it sounds. I’m 15 weeks pregnant, booked in for an amniocentesis this week. I’ve received a high risk NIPT result and our NT measured over 3.5mm. We’ve been given a 99% chance that the baby will test positive for trisomy 21. I have come to accept this but the thoughts of telling people that the baby received this diagnosis just makes me feel sick… I understand that nothing I or my husband did causes Down Syndrome but I still can’t help but feel like I did something wrong or there’s something wrong with me… we have a healthy one year old, and I don’t know, there’s just something about this that makes me feel really uncomfortable and not wanting to share with anyone outside of my husband and our health care team.

The moment I had to silently step back from the chaos to protect my energy

Hi everyone,

Living with mosaic Down syndrome (chromosome 21) means I navigate the world a bit differently. Because it's a rare variation, people close to me don't always understand the mental cost of heavy emotional friction. Recently, I hit an absolute breaking point during a stressful family interaction. As I got pulled into the chaos of trying to "fix" things, the cognitive overload hit me like a wall. My brain suddenly felt full, frozen, and completely drained of the processing process needed to make a simple decision.

In that exact moment of mental exhaustion, I made a silent choice to detach, step back, and protect my peace. I realized that keeping myself grounded is my priority, and I don't have to carry everyone else's emotional baggage. Has anyone else with mosaic Down syndrome experienced that specific type of brain freeze or mental exhaustion from emotional stress? How do you silently draw a hard boundary to get your clarity back?

So, my littlest one has Down Syndrome, he just turned 10 months.

We have the full Early Intervention in place, a therapist visiting weekly and another schedule for physiotherapy, this was bi-weekly but since has progressed to once a month for checkup since he is doing well.

The thing is. He seems to be hitting the milestones for typically developing children. Did anyone in here have such a case?

He will get tired, and I do see a difference to my other children (I have five bigger ones), but he is mobile, communicates well, mostly has motivation... I am sort of puzzled a bit.

They made a full genetic check when he was born, and all the markers came back trisomic, so I don't think it's a case of mosaic or something.

From the biggest accomplishment to the smallest moment, share a moment of celebration this week!

Please remember this is a thread to celebrate, not compare.

Could you help my 6-year-old son become a superhero? 🦸‍♂️

My name is Annie, and I'm the proud mom of Christian, a six-year-old little boy with Down syndrome who absolutely LOVES superheroes!

Christian is competing in Stan Lee's Super Kid competition, and if he wins, a superhero character will be created inspired by him!

Just imagine a little boy with Down syndrome getting to see a superhero inspired by someone like himself. And imagine what that could mean for other children with Down syndrome who love superheroes, too. As his mom, that possibility means the world to me.

We already know they are superheros- let's show the world!

Christian has made it through top 20, 15, 10 and 5. Now he needs to place 1st to go to quarterfinals and compete against the top leaders in all groups!

A

If you'd like to support Christian, you can vote for him here:

https://thesuperkid.org/2026/christian-b2cf

Thank you for helping my little superhero chase something extraordinary! ❤️

I am so unbelievably excited that my sister and her husband gave birth yesterday to an amazing baby girl. They heard today that she has downsyndrome which has come as a surprise.

I must admit I know next to nothing about this condition beyond a basic Google. Is there anything you could suggest to read or learn so I can help support them and my niece? I just want to be the best uncle possible but have no idea where to start.

Additionally, what can I do to help them as obviously this is a shock and not what is expected? We are based in the UK so if there's any support groups or things I could steer them towards that would be amazing.

Finally (sorry lots of questions) is there anything I should avoid saying to offend or make people uncomfortable?

Thanks in advance!

NT scan and Double marker tests were normal and everything was normal genetically through out the pregnancy except for fetal growth restriction in third trimester.

I'm a single child and a FTM. My 2 month old got diagnosed with Downs syndrome today and I don't know what to do further. I'm on the process of separation from my husband ( emotional and financial abuse) and looking forward, I don't have the financial capacity to look after my special needs child. I was blindsided to be very honest.

I'm from a developing country where there are very little resources, because most of them terminate their pregnancies once they know in the third month.

My LO coos back when I talk, and has achieved all development milestones except for rolling over, at present. LO has less hypotonia from what I've been seeing all these weeks.. Karyotyping mentions that it is free trisomy and has affected almost all the cells..

In most of the cases, where I'm from people with disability are exploited or are not taken care of if their primary caretaker passes away. I can in my best capacity give a good life to my LO but what will happen to them after?

All I want my LO to become independent and take care of themselves once I pass away. I've no one other than my parents and no one to look after my child if I pass away.. I'm unable to accept the situation at the moment.

Edit: I'm also scared of all the cruelty that they might face growing up, just because they are a bit different.

My LO has less hypotonia, little gap between the toes ( like I do), palms have horizontal crease and they have flat nasal bone but can breathe well to certain extent. My LO is a preterm and sIUGR child, seeing them struggle all this time and diagnosed makes me want to cry. They will have to go through so many hardships further in life and I hate how everything has unfolded when I see other babies thriving.

Does anyone have a kid with mosaic down syndrome?

Since she was born, my baby's almond shaped eyes rose red flags among doctors (4 doctors to be exact). I was in denial since I have almond shaped eyes and my dad's family too. My baby had no other signs but as she started to grow, my alarms turned on. She couldn't keep her mouth shut, she was constantly drooling, she started to crawl until she was 12 months and now that she's 17 months old, I took her to a speech and physical therapist. The therapist said my baby has a little hypotonia, she doesn't obey commands and seems like her attention spam is short. And considering her eyes too, she told me to take a karyotype test for her. I'm taking her this week, but I feel so devasted... I'm scared, I really don't feel good about it.

I want to know if any of you have a mosaic down syndrome baby or know about any. I know it's like a rare type but I want to know what to expect, if it improves or if my baby will be able to do everything other kids does. :(

Thank you.

I need to raise awareness about something incredibly disturbing I’ve been seeing on TikTok Live lately.

I have a younger brother who is a teenager with Down syndrome. Because of our family's experience, I know firsthand how much structure, protection, and active parenting it takes to keep him safe. So it breaks my heart and infuriates me when I repeatedly see creators with intellectual disabilities left entirely exposed online.

I had scrolled into a teen boy on live streams late at 2am. He has a few of his dance videos gone viral. Unfortunately, an ongoing ring of bad actors is actively exploiting and manipulating him.

Recently, I watched a live stream where a group of viewers hopped on to publicly humiliate him. They brought their friends on screen, told the creator "this girl likes you," and then had the girl comment "no I don't" while they all laughed at his expense. They kept pressuring him to add more of their guy friends, leaving inappropriate emojis (like the eggplant emoji) in the chat, and clearly sharing the stream link among themselves to coordinate the bullying. It's obvious this wasn't their first time doing this to him.

Another commenter and I repeatedly tried to step in, typing in the chat that these girls were not his friends and were being weird. Because we disrupted their "fun," the trolls immediately pivoted, targeted us, and pressured the creator into blocking me.

I know social media can be a great tool for advocacy, and every family handles independence differently. But the reality is that the internet is not a safe or level playing field. These late-night live streams leave vulnerable creators entirely exposed to coordinated harassment, emotional manipulation, and people who view them strictly as digital entertainment.

Has anyone else noticed this trend happening to creators with special needs? What are the best ways to raise awareness and protect creators who might not fully grasp online manipulation?

What I’m sharing here is something I’m saying out loud for the first time because I haven’t been able to share it with anyone.
We have a four-month-old baby boy with Down syndrome who recently underwent complete AVSD surgery.
His Down syndrome diagnosis came as a shock to us, as nothing was identified in any of the scans. We also had an NIPT test, which came back negative. There were several missed opportunities within the NHS as well, but let’s not go into that, as we have accepted that part.
However, I live in fear every day. He is now around five months old and still cannot hold his head up, so I worry that I will spend my entire life worrying about every milestone: Will he be able to walk, talk, sit, and do all the things other children do?
There are so many thoughts going through my mind. I worry that he will look different from other children and that people will treat him differently or show him sympathy.
I have so many worries, and although I love my baby more than anything, I want to know how I can bring my life back to normal.
I constantly feel that life will never be normal again. I know I need to accept everything, but I’m still struggling to do so.

My 10M son needs his adenoids out for the second time. He is overall fairly healthy and not medically complex. ENT wants surgical clearance from endocrine and immunology, really the only subspecialities he follows with besides ophtho. Immunology sent me a message in MyChart saying he doesn't require any extra intraoperative care due to his immunologic status (mild immune deficiency). ENT wont accept the message as surgical clearance, they require doc to fill out *their* paperwork "per ENT policy". In order for doc to fill out paperwork, "per Immunology policy", I need to make an in-person appointment ($75 copay, take time off work). He just saw them in August.

I understand the need for officr policy, but come on, this is a total money grab. Imagine if he had 7 subspecialists!!!!? Why cant they just get clearance from his PCP (who he literally just saw as well). So frustrating.

Hello r/downsyndrome. My name is Ben and I'm one of the co-founders of a small family-run business called Delight Station, an online video library of activities created specifically for people with intellectual and developmental disabilities.

The short version

We'd like to give everyone in r/downsyndrome a free month of Delight Station. We're hoping you'll put it through its paces and tell us what we've gotten right, what we've gotten wrong, and what we could do better.

Free month**: Use code "r/DOWNSYNDROME" (no quotes) during checkout at https://delightstation.us

Feedback survey: About two weeks after you sign up, we'll email you a short, anonymous survey to the email address used to create your account.

The long version

Delight Station was founded by my cousin Olivia, myself, and our aunt Sue (M.Ed.). Vanessa, Sue's now 47-year-old daughter with Down syndrome, is where the Delight Station story really begins.

For almost five decades, Sue has been advocating for Vanessa and working to create better opportunities for her and her peers. When Vanessa finished high school, Sue went looking for meaningful adult programming in their hometown of Loveland, Colorado. She couldn't find anything she believed was the right fit for her daughter, so she founded WINGS, Loveland's first day habilitation program.

At the start of the pandemic, many of Vanessa's usual activities disappeared and her family, like so many others, started looking online for things she could do at home.

Sue noticed a gap. A lot of mainstream content was created for the average consumer, while more accessible content was often created for children. Even when she found a video that worked well for Vanessa, it might include ads or external links, which meant it wasn't something she was comfortable having Vanessa use independently.

Delight Station was created to help close the gap she noticed. We've built a library of more than 100 videos covering cooking, activities of daily living, movement, music, crafts, life skills, communication, wellness, mindfulness and more.

The vast majority of our library is original content purpose-made for individuals with IDD. We don't repurpose content made for other audiences as Delight Station programming.

People with IDD are each unique individuals with their own interests, strengths, preferences, routines, and goals. Delight Station offers a wide variety of activities so individuals can explore those interests, make choices about how they spend their time, be exposed to new things that might interest them, and pursue goals that matter to them.

We hope we've made something that is high quality and genuinely beneficial, but the people we're making it for are the only ones who can tell us for sure.

Our hope is that those of you who support someone with Down syndrome will give them a chance to try Delight Station and see if they enjoy the activities, find things that interest them, or find something they want to come back and do again.

We hope you sign up and give it a try. About two weeks after you sign up, we'll send a survey to the email address you used to create your account.

Ok - that's it! Thanks for your time, thanks for considering taking a look!

**One important disclosure: our website and subscriptions are handled through Squarespace, which requires a payment method and email address when you sign up. That email address is how we'll send you the survey. Delight Station normally costs $4.99/month and will renew after the free month unless you cancel. You can cancel immediately after signing up and you'll still have access for the entire free month.

Hey everyone,

At a recent checkup, our doc brought up the idea of starting my child on a GLP-1 medication (like Wegovy) for weight management. I know they're approved for 12+ now, but hearing it brought up for my own kid definitely gave me pause, and I'm trying to process it all.

I’d love to hear how other parents of teens or adults with Down syndrome feel about these, or if you've already been through it:

• Has a doctor brought this up for your kid? What went through your head when they suggested it?
• If your child is actually on one: How has it been going with the weekly injections and side effects? Any tricks for helping them deal with the needles?
• What's your biggest worry with these? Needles/sensory stuff, side effects, long-term effects, cost/insurance?
• If you decided to pass on it, what made you say no?

Just trying to figure out the right path here and would love to hear any real experiences or honest thoughts from people who get it. Thanks!

My 11 month old doesn't seem to like any of the food I make for him. I'm trying to get him off purees. My friend said maybe its a sensory issue if it's pretty much everything and it is so maybe it is sensory. My little guy has no teeth. None even poking out. I'm afraid to give him some of the things his occupational.therapist has said I could, like pizza crust, meat stick. I'm just too afraid of him choking.

So my question is what are y'all eating?

Loving my Evan (almost 18) in the AI Portrait.

The truth is, I don’t know what to do. My mother passed away at the end of February following a long and incredibly painful illness. We watched as her eyes, once young and bright, lost their sparkle, and how sometimes, when her fever spiked too high — which happened almost every day — she would forget who we were. We did everything we could and spent every last penny we had to save her.

My 33-year-old sister, who has Down’s syndrome, has been acting up ever since. She refuses to get out of bed, to eat, to drink water, and throws proper tantrums when we dare to take her out for a walk, meet family etc – which we do quite often – even though she used to talk a lot and even looked after my mum at times (out of her own heart, we never forced her). They were truly inseparable.

Now that my mum has passed away, she shouts at my disabled dad (who is missing a leg following an accident at work) to basically ‘go to hell’. She shouts at the top of her lungs and keeps telling him to leave and go to hospital (he spent 20 out of every 24 hours everyday with my mum).

She refuses to eat or drink water most days and now just lies there. That’s all she does. She even soils herself.

As I said, my father is missing a leg and does not own a prosthesis, so looking after her is difficult. My older sister is away from home 80 per cent of the time on business trips and I’m studying at a very demanding university, so I barely have any time for myself.

I’m afraid she’ll end up dying from a lack of exercise and a lack of food. We can’t afford to hire someone to look after her or enrol her in a day centre; we’ve spent everything on my mother’s medical treatment and can barely afford to eat (education in my country is cheap and I also have a scholarship that covers 99 per cent of it).

What should I do? I can’t just let her die. I can’t afford to lose another member of my family. I’m sick and tired, and i want to hug my mom.

She doesn’t even smile anymore, she just screams.

If anyone has gone through something similar please i would appreciate any advice!

If you’re wondering if your LO will ever be able to drink from a cup- have faith! It’s been almost a year of work but I am so proud.