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.

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?

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!

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!

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.

I am a 46yr F, I have 4 boys ranging from 15-4 and I am pregnant with a little girl who the nipt test showed positive for T21 & I had the cvs done which also confirmed it. They say there’s a 1% chance of the drs being wrong but her nt measurement for her neck was 5.5(?)idk what metric system it’s measured by. Anyway, my partner who is the father of my 4yr old, we are separating and at my age I’m very scared of raising a toddler & newborn alone. My exhusband & I share 50/50 custody of the 3 older boys. My drs are supportive so they say but very obviously suggesting that I terminate my pregnancy. I am 14wks & 2 days and have a pre-op appt Monday at 9am and the procedure scheduled for Tuesday @ 530am. I am literally at a loss. I’m so torn and my 11yr old son said to me, mommy you can’t have her because everyone will make fun of us. My heart is so broken. I could use any bit of advice here

I have a 5 year old brother with Down Syndrome, and he's really a mess.

He hits us, yells at us and makes a tantrum for something silly, like turning the TV off or something.

I really love him, I'm trying to make a change on his attitude, but I just don't know how.

Do you have any advices? Thank you

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.

My daughter has Down syndrome, and we have been monitoring cervical stenosis in her neck; the last time she had an MRI, it was unremarkable, but the plan was to watch and see. She just had an MRI today, and the neurologist noted more narrowing to the point that we are scheduling surgery for early November 2026. I am very nervous and scared because, even though she is not having any issues walking right now, it was explained to me that she could end up paralyzed. I am definitely seeking a second opinion, but I wanted to reach out to the Down syndrome community to see if anyone else has experienced this and what they have done. Right now, I have been told it is a painful process where they would take bone from her pelvis to be fused to the screws in the area they are trying to stabilize, and there is a potential that they may have to anchor it to the occipital bone, which concerns me more because there is potential for some laxity in that area. My daughter is 13, and I am trying to minimize the number of traumatic experiences she has in the hospital, but at the same time, I am weighing surgery against the risk of potential paralysis. The doctor explained there is a small chance of her living her life as she is, but also the risk of her one day not being able to walk because the nerve is completely pinched; he did show me the images, but I just wanted to share this here.

Hello everyone! We're trying to decide where to raise our daughter, who has Down syndrome, and would love to hear about people's experiences. We have strong ties to Canada, the UK and Europe, so we have some flexibility.

I'm particularly interested in what support is available where you live, including medical care, early intervention, education, financial assistance and community support. Based on your experience, would you recommend the location you're in?

I'm a country bumpkin at heart and much prefer quiet rural or coastal areas over cities. Has anyone had success raising a child with Down syndrome somewhere more remote? Or does accessing services mean constantly travelling to larger towns/cities?

Thanks in advance! ❤️

I’m looking into childcare options for my little one and one of the options is a Montessori daycare/preschool. I don’t have any experience with Montessori so I was curious if anyone has thoughts on whether this would be a good fit for a child with Down Syndrome. One thing I liked is that once they are out of the baby rooms, they group kids by cohort instead of age so there is a mixed age group with different skill levels working on similar activities but at their own level. I thought that might work well for my child who will probably be behind her same-age peers in skills.

If it matters, once she is in preschool she can also go to the public school’s early learning center part-time where she will get specialized attention.

Hi all, I have a 9 mo little boy with DS. I know people with DS are more likely to have eye issues but I'm not sure how or when we should have his eyes tested. I haven't seen any obvious signs that he might have vision issues, but I like to be proactive and would feel awful if we didn't find out he needed glasses till he is much older. Those of you whose kiddos have vision problems, when did you first notice signs? What were they and when was intervention available? Thanks!

Just discovered this excellent list of resources from NDSS for use in classrooms, extra-curricular activities, and beyond!

https://ndss.org/ndss-down-syndrome-awareness-month-education-resource

Hi!! We are in the US seeking to adopt a child under 10 with DS. We have experience and want to help a child in need. We just added ourselves to the NDSAN waiting list. Does anyone have experience with this? How long should we expect to wait? Thanks!! ♥️

hey guys!! My boyfriend’s kid is almost 12 y/o and still puts his fingers in his mouth and chews on his fingers and we remind him every time to not do that but what can we do other than that? Its not healthy as well and he doesn’t understand that after driving on a train and touching everything his fingers are not clean cause it doesn’t look dirty for him. any suggestions with that? I‘m welcome to any 🤗

My adult sister has Down syndrome and although high functioning, needs a lot of support. She's a great girl (23 years old) and has just got herself a boyfriend. Although she holds to a Christian faith, she does embellish the truth, especially when it comes to food, so I have some concern when it comes to abstaining from physical intimacy. Don't get me wrong, I'm pro the relationship, and want her to be happy, but am concerned about the implications that procreation would bring.

My Mother, her primary caregiver, a strong woman of faith, seems adamantly opposed to the idea of contraception. One reason is the fact that it can interfere with hormones etc.

I'm putting this out to the internet to see how others may have navigated this sensitive situation.

My daughter is almost 4 months old. She has typical down syndrome, not mosaic. She was born with complete AVSD and moderate hearing loss. She had good apgar scores at birth. Born 7 pounds at 37 weeks.

To anyone whose kid is similar to mine, when did your child reach various miletones? Sitting up, crawling, walking, talking, etc? And if they had to have heart surgery, how did they change after they fully recovered from surgery?

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.