My little sister is 12, she has Down syndrome (I am much older than her for reference). She HATES the shower. She puts up a huge fight every time and while she does eventually get in there, it takes a lot of time and stress for us both.

I talked with her today and she says really doesn’t like being alone, that it’s really boring. She listens to music in the shower which helped for a while but it’s not keeping her satisfied anymore. We’ve talked about thinking and what it’s like to talk in her head, and when she’s alone she usually just thinks out loud. Side note — I love this about her, so much. I love knowing that she has a vivid internal life and that she’s processing things from her external life that way. She just doesn’t recognize that she is going to keep herself busy in there and that it’s good to have independent time.

I am not sure if anyone has gone through this with their loved one, but any support is welcome! I am thinking about maybe talk radio while she’s showering (geared towards her ofc) so suggestions on stations and how to access from an iPad would be awesome. I also want to foster some independence for her — I am the oldest and she is the youngest of 7, so this was a problem for me growing up too. Maybe suggestions on fun things for her to do that are appropriate for her age and intellectual abilities? She’s similar to a 7 or an 8 year old in that way. But she is every bit of a moody teenager too. Now I’m off on a tangent but she even has a boyfriend with Down syndrome and she is always thinking about him, haha. Thanks in advance!

I left my 18 month old with grandparents today for about 3-4 hours while I went out to dinner with friends.

i have noticed he has gotten more clingy and is a bit fussy when I leave the room- I figured he would be a little bit sad as well tonight.

however, when I got back grandma informed me he was hysterical almost all the time and seemed to be looking for me through the house. They didn’t call me as I guess they wanted me to have a nice night out.

This is my first child so I guess I am wondering if this could be DS influenced or normal kid development things? It seemed to start pretty recently. Any experience or advice?

thanks!

I’m based in the UK, 40 and our screening test came
back as 1:21 chance for DS (they couldn’t measure the neck fold at 12 wk scan). Because of this I can have the NIPT done on the NHS. I’m 16+3.

I asked the same question in a pregnancy sub and was downvoted to hell for saying I was scared midwife might try and ‘push’ me to do the NIPT tomorrow, because I have read stories about that. I also don’t want to do amniotic fluid testing because I’m on immunosuppressants and don’t want to play around with infection risks.

My plan is to decide on NIPT after the anatomy scan, which I should have at 19 weeks. If anything serious pops up there, I’ll do it, but I wouldn’t terminate for DS itself and feel like doing the NIPT right now might just cause me more anxiety.

Did any of you get higher risk of DS at first trimester prenatal blood screening and opt out of NIPT or just opt out of testing altogether (I know in some countries it’s almost standard to do the NIPT early)?

So sorry if this is the wrong sub, but as I said,
pregnancy sub was just people downvoting and giving speeches about testing and why they did it and I should, too. I’m starting to wonder if I’m being really stupid

ETA: thank you all for sharing your situations and not berating me! It really helped calm me down. And I just spoke to the specialist midwife, too. She took a lot of time and explained my results in detail and I got to ask her lots of questions. We brought my anatomy scan forward by a week and if anything pops up that indicates serious issues (like Patau or Edwards), I’ll do the NIPT. I’m already booked for growth scans due to age and some meds I’m on anyway, so I’m basically on an ‘enhanced meternity care pathway’ regardless.

Other than that, we’re just going to mentally prepare for the possibility of DS, and this sub has already given me some useful info. Again, thank you!

I want to share our experience so far with my mom passing and my sisters reaction. She is 12, she has Down syndrome. She is very verbal and coordinated. She learns quickly and loves to be involved and independent. I am very proud of her, she is a smart girl. Our mom passed in March. We didn’t bring her to the funeral because we didn’t want to traumatize her. I’m not very well researched but I know trauma can lead to regression and that’s a big fear I have for her.
So far, her grief has mainly shown in her behavior issues. The things im mentioning, she had done before our mom died, but it’s been happening a lot more. She gets violent over food, enough to push me. She also gets violent over being told she has to get off the tv, she has thrown remotes at me. Unfortunately, I don’t need much advice, I know the issues; food is a comfort to her, as is the tv, but shes addicted to both. I’m ready for school to be in session so she can get back to a routine and normal socialization and all. She rarely asks about mom, there has only been a handful of instances. The first few times, she would cry a bit too, but she would move past it within a minute. Today, I was looking at a photo of her, and my sister said “mom” in a happy, gentle tone. I worry for the future when her vocabulary and intelligence grows and she remembers more about mom and wonders where she really is. We already told her the truth, we told her mom is happy in heaven with *family dog,* and she stays there now. I guess I just wanted to get this off my chest a little and I’m curious about other families experiences.

Hi! I dont know anybody with DS, so its not a subject Im very familiar with, but Im interested in learning what life is like for a person with Downs Syndrome from their perspective. I work in specialized retail, and I have a couple customers with Downs. Its a life experience Im not familiar with, and I just wanna understand better so I can help better. It feels invasive to ask in person.

Im looking for a good interview/documentary/etc from people with Downs Syndrome talking about their lives.

Also, if anyone with Downs Syndrome wants to share their thoughts on this Id really appreciate it: In customer service, what do you consider helpful vs. not helpful?

(I know it varies from person to person, which is why im asking a forum! Looking for many perspectives)

Thanks!!

I really mean no offense, I tried to word this as compassionately as possible.

So, here's the context:

I am a dietitian, and I was approached, via text message, by a male for an online appointment, I agreed, we set a date. At the moment of the appointment was when I realized he has DS, he is 40yo, and fairly independent, we proceed with the appointment, and at the very end is when he tells me he has no money (and since he approached himself without his parent's knowledge he can't ask his parents), he told me he works with his father and brothers and when he has the money he'll pay, it's 300MXN (~15 USD) so no biggie.

Anyways days go by, he texts me constantly to ask if what he is eating that day is ok, I answer as I would to any patient who has concerns, but then he starts to request pictures of myself, I say no, of course, and try to explain that that is an inappropriate request and he shouldn't do that. He says ok, stops for a while and then starts doing it again, I keep saying no. The other day (this is already two months after the initial and only appointment) he sent me two TikTok videos of girls dancing (quite provocatively) and asked me to send videos dancing like that, I say "DEFINITELY NOT", he says "ok", but I'm quite sure he'll do it again eventually.

I understand that he might not do it maliciously ( I'm not 100% sure because he keeps deleting ALL his messages), but other women might not be so understanding.

My question is should I just block him (because it's uncomfortable for me) and forget about it all or should I get in touch with mom or dad to let them know and see if they can guide him with boundaries? I would love to hear from parents/ caregivers what would you like me to do if it was your son?

Hi everyone,

Looking for some insight or shared experiences from anyone whose little one has gone through something similar.

Background: Our boy is 3 months old chronologically, but spent his first month in the NICU, so developmentally he is closer to 2 months adjusted. He has Down Syndrome and went for a stomach operation when he was just 3 days old to repair Duodenal Atresia (DA) (a blockage in the upper part of the small intestine).

Our Setup:
- Bottle: Dr. Brown's Anti-Colic with the internal vent system and a slow-flow Level 1 nipple.
- Formula: Similac Total Comfort (considered one of the best comfort formulas here).
- Drops: We add both Reuterina probiotic drops (for long-term gut support) and Telament drops (for wind/gas) into his milk before we feed him.

The Issue: When we feed him awake, he will latch (okay-ish) and drink a small bit (about 5ml), but then he starts writhing, wriggling, and cramping. We have to stop, burp him, let him calm down, and try again. He will take a bit more, then start writhing again.
Because of this constant stop-and-start, a single 90ml feed takes us 30 to 45 minutes. It is incredibly exhausting and frustrating for us.

We have tried rubbing his tummy or cycling his legs before a feed with little help.

The absolute best time he drinks is when he is asleep or falling asleep (dream-feeding). When he’s fast asleep, he takes the bottle smoothly with very little writhing. But when he is wide awake, it’s a total nightmare. I've read this might be due to post-op duodenal dysmotility (a slow-moving upper gut) or a strong gastrocolic reflex triggering spasms when milk hits his stomach.

Has anyone else with a post-op DA baby or a DS warrior dealt with this intense awake-feeding writhing? Does it get better as their gut matures? Any tips on how to handle these feeds would be so, so appreciated.

We are running on empty!

***I know nothing about Down Syndrome in pregnancy, so if I misspeak or don't ask a question correctly, please know it isn't intentional!***

I am 12 weeks pregnant, with our first boy, after 3 girls, one of whom was born with unexpected, diagnosed at birth, congenital deformities that have since been repaired and she is growing perfectly average-ly, and one which was miscarried.

I am not freaking out. I do not feel worried, anxious, concerned, afraid, etc. I have a history of anxiety and my oldest spent 3 (unexpected) weeks in the NICU, so I am actually more freaked out over the fact that I am not freaking out!

My sister in law has convinced my husband that the test is inaccurate. That there is no need to worry (I do agree there's no need to worry, but not because the test is inaccurate). He is now refusing to deal with any kind of preparation talk, which I feel is very important. This is really frustrating to me!

I will NOT be getting an amniocentesis done. I know this NIPT test is nit diagnostic, but I'm comfortable proceeding with less invasive forms of monitoring for the time being.

I am assuming that my OBGYN will refer me to an MFM (I already know which one I will be using, as I was also referred to her during my 2nd pregnancy (which was successful) to make sure she didn't have the issues my first had). I then expect to just...proceed through pregnancy from there? Probably be referred to give birth at a hospital with a NICU, instead of my local hospital (I love my local hospital labor and delivery, so I'm very sad about that)?

What I am most wanting to learn and focus on is how to prepare my home, and my post partum life, for a newborn with Down Syndrome. I realize a lot of that will depend on if scans reveal concerning health issues, like heart problems?

I have a WONDERFUL village in my church congregation, my mom will be staying with me for a bit after bit, and then my MIL will be coming up to help after that.

I would LOVE for you all to share your stories with me in the comment section! Tell me the things to be aware of, tell me the things to look out for, tell me the concerns, the successes, and the trials. I WANT to hear your stories!

Thank you all for reading this!

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.

For context, during my pregnancy our daughter had an absent nasal bone at our anatomy scan. Our first NIPT at 12 weeks was low risk for everything, so our genetic counselor recommended an expanded NIPT as a first step in addition to increased screenings through 28 weeks. The second NIPT also came back low risk and no other markers presented, so everyone was comfortable determining this was an isolated marker/normal variation without doing amnio. She was born seemingly typical. My OB even forgot about the whole thing and was surprised when I asked if she had down syndrome the morning after she was born. Her pediatrician at her first appt almost laughed when she felt her nose and couldn't believe they made us feel so concerned.

Around 2 months, we got a letter in the mail outlining support through the state because our MFM apparently had signed her up for the disability registry. I was a little uncomfortable with her being on some list, plus my understanding was that she did not need additional support as everyone had concluded she did not have down syndrome. We asked our pediatrician at this checkup on the basis of the letter and how to proceed. She was shocked and thought we had put this behind us, but reiterated no concerns and brought in another doc to do a second physical check. All agreed. She said we could do a karyotype if it would put us at ease but there was really no reason to. We decided not to do it as we were just being anxious over it.

This brings us to today. Her 4mo appt was going wonderfully. She has grown incredibly well, is meeting or exceeding all milestones. Her doctor mentioned more than once her excellent tone and she spent the entire appointment babbling over us for attention and smiling. So it was a shock when her doctor came back in and said it was time to revisit the down syndrome conversation. She reiterated that baby has excellent tone, has zero developmental concerns, and is socially exactly where she should be. But her nose bridge is still a little flat and her eyes are slanted. She looks identical to my husband and I as babies and my eyes are similarly slanted upward, but I digress. I need this either ruled in or out at this point. We went for the karyotype and are waiting for results now.

I share all of this detail because 1) I am annoyed we waited until now and may have missed early intervention opportunities and 2) it seems like we aren't experiencing any delays *yet* so wondering if others felt like they were able to catch up if starting somewhat late. My main question is, for those who knew right away, how much intervention really happened in the first 4 months? What does that involve in the early months?

My son has Down Syndrome and is 35. He has mild to moderate sleep apnea. I bought him a Resmed Airsense 10 auto, but he will not wear the mask more than a few minutes. He panics and holds his breath and rips the mask off. I would love to hear about any information regarding Down Syndrome and sleep apnea. Anyone have luck with getting their loved one to wear the mask or any other treatments that have worked for them

Hello everyone, I’m hoping to get some advice and perspective from parents, caregivers, and professionals.

How do you handle internet, social media, and chatroom access for an adult family member with Down syndrome?

I’m currently dealing with a situation regarding an adult man with DS. I am concerned that his conservators are not setting appropriate online boundaries, and it is starting to cause real issues for others. Without getting into too many specifics, he is blurring fantasy with reality and has started posting explicit messages and ai generated videos online about some girls in real life. (He has been using IG, TikTok, and YouTube for years and I don’t see him or his conservators deleting/restricting those apps)

I would love to hear how others navigate this:
* How do you discuss online safety, boundaries, and appropriate behavior with them so they will understand?
* Do you check their phones? Is it generally considered acceptable to monitor their devices since they require conservatorship?
* What specific boundaries, rules, or parental controls do you put in place for social media?

Thank you in advance for any insights or resources you can share.

I've had a lot of trouble getting connected with our local support groups and unfortunately haven't had much help at my pediatrician's office since receiving the late diagnosis (found out at 3.5 months). My son is 4 months old currently and the only thing I'm noticing is that he's having trouble reaching for things. He has a good grasp if you put something in his hand or can grab at hair but he's not really reaching the way I think he should be.

He's doing good with tummy time and I've been trying to work with him as best I can until we can find some support groups, but does anyone have any recommendations for what I should be doing? I don't know how to encourage him to reach his arms out. He likes to keep them tucked in, even during tummy time. Or he'll lay with them flat out next to him.

Will it come in time and I just need to be patient and keep working at it?

Thank you for any advice you can provide, second time mom but first time downs baby ❤️

Happy 30th Birthday to my son. The ride has had its ups and downs, but it always ends in love and laughter. He has accomplished some wonderful things along the way and has made countless people smile. You're an amazing son and we are so happy to have you. 🥰

Hi! I need your help 😊
I keep wondering why no one seems to make clothes specifically designed for adults with Down syndrome — or am I wrong? Do you know of any brands that already do this?

I am 17 weeks now and learned at 10 weeks that he has a 75% chance of DS. We moved states later that month and switched care of course. I told the midwife about the NIPT results and aside from asking if we wanted to do an amnio (which I declined), she didn’t say or do much. I asked to be referred to MFM and have my anatomy ultrasound scheduled for 22 weeks. My question is this normal? I’m having to go to the low income hospital in my area due to our financial situation and I’m concerned my care isn’t as good as a result and from general lack of knowledge about DS from my midwife. However, I do have a history of anxiety so I can’t tell if my concerns are valid or not. What should I actually be worried about and what prenatal care is actually important? I’m also worried that they aren’t taking this as seriously because the baby is not a confirmed diagnosis. Also is it okay for me to still reach out to Jacks Baskets and other organizations despite not having a confirmed diagnosis?

Hey all,

Just wondering what you are doing to help your kiddo communicate?

I have a newly turned 4 year old girl that is non-verbal. She is not ready for an AAC device. She has been getting really frustrated lately as she clearly wants something but obviously cannot tell me. I feel like I have been doing basic sign language forever without any noticeable difference.

She has lately been refusing to eat, refusing to go in her wagon and generally just very destructive ( if that's even the right word for it).

Any tips, guidance, advice would be greatly appreciated 😊

Are there any children's book that feature non verbal characters with special needs? Are there childrens books with characters that have Down Syndrome?

My older sister (30 years old) has had an operation early this morning, in her ear. She’s been staying with my mom and I, and has described the pain as either mild or in the middle.

She’s been scared, and panicking a little about it. When It was time for us all to go to sleep she didn’t want to. Both me and my mon tried comforting her. We tried giving her extra pain medication (she says it doesn’t hurt that much). She doesn’t want us to stay with her, she rather be alone. She doesn’t want ice cream or candy. She only wants coke which I gave her.

I really think I tried everything and I really want her to be able to rest. I’m really worried about my sister and her healing progress.

Is there anything I can do for her? Anything that can help her sleep?

Please, if you have a moment read this. Dad here of young perfect child w t21.. Can someone within our community please talk to me? I've struggled so much with the diagnosis and fears of the future for my SON with down syndrome. He's 4, totally healthy but just progressing slowly for milestones. Also I lost my job thanks to the assholes in charge of our beautiful country so I'm watching my kids full-time and also trying to work a little on top of that but not striking a good balance either. Having a ton of marital difficulties due to my bitterness for life.. Life used to be so much easier when we only had one kid. I just need to talk w Dad's or Mom's someone who get it....

Hi everyone,

My brother has Down Syndrome and I know some of the challenges that my family has faced as a result.

I am wondering what are some of the major challenges/problems that parents or siblings have experienced? For example, is there a severe lack of adult services for children with down syndrome in your area? If so what services are lacking?

I think that every family's situation is unique, but I want to try to find some of the common problems that need solutions!

Thanks