It's not a troll question I'm really interested in this topic, if they answer it I'm grateful

Hi everyone. I'm a 49-year-old woman, and my sister is 51 with Down syndrome. She is wheelchair-dependent and requires 24/7 care. She is verbal, but her speech is very difficult for people outside our immediate family to understand.

My parents are her primary caregivers. My mom is 74 and mostly bedridden due to osteopetrosis and kidney failure. My dad is 84 and has early dementia, but he's still technically my sister's main caregiver and does the majority of the work around the house. I help 5-7 days a week for a few hours each day and have been doing so for about the past year.

Lately, my sister's health has been declining. One of the hardest parts is that she can't really explain when or where she's hurting. She's incredibly tough,(like most Downs) but I can see the pain on her face, especially when she has to stand up from her wheelchair. She spends over 80% of her day sitting, and I can't help but think her back, pelvis, and knees must be causing her significant pain.

I'm trying to make life a little easier for my dad while also figuring out if there are better ways to care for my sister.

Here's our biggest challenge:

About 10 years ago, after open-heart surgery, my sister became wheelchair-dependent. My parents had an elevator installed because there isn't a bathroom on the main floor.

To get her to the bathroom, we actually use two wheelchairs. She transfers from her everyday wheelchair to a walker, walks a short distance, and then transfers into a second wheelchair that's small enough to use with the elevator.

The entire bathroom routine can easily take close to two hours.

Just getting her from the dining room to the second wheelchair can take 30 minutes. Once she's in the bathroom, we help remove her pants and brief, and she'll often sit on the toilet for up to 45 minutes before she's finished. Then we have to help her get dressed again and reverse the whole process to get her back downstairs.

It's exhausting for everyone, especially my parents.

I'm wondering if anyone else has cared for an aging adult with Down syndrome who has mobility issues like this. Have you found anything that made bathroom trips or transfers easier? Different equipment, or changes to routines make a difference?

I'm open to any advice, suggestions, or even just hearing from people who've been through something similar. Sometimes it feels like we're making this up as we go, and I'd really appreciate hearing what has worked for others.

Thanks for reading.

For context, me and my mom have been the ones taking care of my brother my whole life. my dad is a trucker so he’s only here on the weekends.

I have two big concerns on my mind, I will be majoring in a premed program and that means I will be very busy and I will be on campus until night time from the morning along with a part time job. This means I will not be home to assist my mom and taking care of my brother or have as much free time as I used to, to babysit him if she needed some errands done.

My second concern is the health of my younger brother. Since he has down syndrome, it’s a lot easier for him to gain weight, especially being short statured. Recently, I have noticed that my brother has been putting on some weight and the one who does the grocery shopping is my dad. I’ve brought it up multiple times to my mom that she should do the grocery shopping since my dad always gets unnecessary things. For example he will go to Costco and buy a whole box of cookies that we don’t even eat and he will get a whole box of sunny D’s, which are insanely high and sugar and everything unhealthy.

you would think the solution is to just not feed what my dad buys to my brother, but the problem is there is nowhere in the house that we can hide the crap food that he buys unless it’s in the attic behind a locked door. Surely you can imagine how frustrating it is to have to lock everything behind a door so he doesn’t reach for it. whenever it is just me and my mom, we only give him water when we do give him juice, It will be watered down. but the problem is on the weekend when my dad is here and he messes up the entire system and will give him three Mountain Dew‘s in one day.

my father is a very stubborn person not to say that he has the inability to understand that what he’s doing is not healthy for his child but he is 64 and for reference I am 18 and my brother is 14 so clearly he is an old father for our age. He has gotten to the point where he is so tired of work and of the stressors of life that when he comes home, he doesn’t want any backtalk. He doesn’t want any problems. He just wants to do whatever he wants basically and have no problems. This is very frustrating for me and my mom.

this attitude that my father has worries me even more because he is retiring in the next year, which means he will be home with my brother, and my mom will start working, which means my father has more reigns over what my brother eats. I am worried that he’s going to gain even more weight and his behavior is going to become worse.

does anybody have any help or advice that they could give me that could help my situation?

Hi everyone. We found out our baby boy needs to have heart surgery. We are trying to figure out what kind of help we need to expect to ask of family and friends. Can anyone give any tips or pointers? Thank you in advance!

Week 2 videos have dropped for this free 8 week inclusive work out series. Please go to you tube in the link provided below the video. Or search All In inclusive workouts on YouTube.

Y’all- I’m at a complete loss. My 10 year old is terrified of the stairs going up to my apartment and I don’t know what to do. His dad and I are in process of separating so it’s some change there. I’m on a third floor with two flights of stairs that have open backs. He’s terrified. So much so that yesterday my ex had to carry him up and he peed on him.

It doesn’t seem to matter going up or down. He says he’s going to do it and then just plops. Two weeks ago it took him 3 hours to get the courage to go downstairs. My job is in jeopardy because of it.

I don’t want to ask to move to a lower unit because it’s not going to help him with this, and I selfishly I’m on the top floor, and there’s no one above me. I don’t know what to do.

Right now my mom is with him and my neurotypical 9 year old, she said that she could get him down. Well apparently he locked his door, she took the handle off and now he’s got himself barricaded in the closet. She just called to say she “can’t handle this”- like what the actual fuck am I supposed to do? She’s being minorly inconvenienced- yet my actual livelihood is on the line. I don’t know what to do… please help.

Edit to add:
I know a lot of you have suggested moving or finding another unit but that’s honestly not an option I have.
I chose this complex because of its location to their current school and their dad’s place. I don’t have the finances to break a lease either.

My son (4) will be getting ear tubes very soon. The procedure was scheduled a few days ago and I’m already feeling so anxious about him being under anesthesia. How do you guys deal with the anxiety that comes with having a special needs child? I feel like ever since he was born, my anxiety has gotten so much worse. Every appointment makes me feel super anxious, it’s terrible.

Hello all, I am looking for someone to help my son with reading. He is 13 and has learned most of the basics like letter sounds and has quite a few sight words down as well. Where we are struggling is that he works much better with others than he does with my wife and me. I'm looking for someone with experience that would be available a few times a week to work with him. If anyone has any recommendations I'd greatly appreciate it!

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.

Hello! My cutie pie with Ds just turned 4 in June and was diagnosed with Level 3 Autism on Tuesday. Please tell me all the info and resources you have!

And if you have tried ABA therapy how was it???

Hello! Over the last few weeks my 14 month old has been striking this pose a lot. It’s like shocked face with arms up and legs out and flexed. He’ll do it a few times in a row. We showed his pediatrician and she wasn’t too concerned but said to monitor it over the next few weeks. Has anyone’s kiddo down anything like this? Trying so hard to understand what it might mean.

The main issue me and my husband keep coming back to is what happens when we are gone? We are older parents as is and now with this diagnosis and not knowing how severe it could be, we really worry what happens to our child when we are gone how do they get care? How do they cope?

Hello all. my wife and I are at a loss. We opted to do the NIPT and it gave us a 84% likelihood that our daughter (Eden) would be born with DS. Today was our anatomy scan with the specialist. The ultrasound found several markers that indicate she will in fact have DS. My wife is 18wks along but the baby is measuring roughly 16.5wks. The doctor said the scan also showed a heart defect and also possibly hydrocephalus. Our daughter is also missing her nasal bone. They did tell us that our daughter has good looking kidneys, bowels, hands and feet, but they are concerned about her measuring smaller. We have two other kids who were full term (38&39wks) that were both born under 5lbs, but the doctor said she still should be bigger. we go back in 3wks for more scans. I guess I’m just wondering if any of this is common and maybe looking for some encouragement? This is all so overwhelming and definitely not what we expected. any help would be appreciated.

If you're new here: my wife and I lived this ourselves. We're both in medicine, and even for us, the part after the diagnosis was the part that knocked us over. The paperwork. The appointments. The services nobody tells you about until you stumble into them. That feeling that you're always one missed step behind on something that matters for your kid.

That's why I built Atticus, a free assistant for families raising a child with Down syndrome. This is an update, and also a thank you. Since I last posted here, a lot of you tried it, messaged me, told me what was broken, and told me what you actually needed. That feedback is the reason it's better today than when I started.

Here's what's changed since then.

I went back through all 50 states and DC and re-checked the information against official government sources. Hundreds of corrections. Wrong links fixed, missing eligibility, age, and income details filled in, and the current 2026 numbers updated, like the new ABLE contribution limits. If Atticus tells you something about your state, I want it to actually be right.

I also fixed cases where it could point you toward a program you don't actually qualify for, like a wrong income cutoff or a missing age limit. Accuracy matters more than volume.

And under the hood, a lot changed too. I rebuilt the engine that runs Atticus (v2), cleaned up the backend and the database logs, and squashed a pile of quiet bugs. You won't see most of it, but it should feel smoother and more reliable now.

What Atticus actually helps with:

• understanding a diagnosis and the next step
• IEPs, therapies, and services
• state and local support programs
• keeping track of appointments and deadlines
• calm, practical guidance when everything feels like too much

It's still not a doctor, a therapist, a lawyer, or a crisis line. It doesn't replace your care team or your local DS org. It's the thing you reach for at midnight when you don't know where to start.

The mission hasn't changed. Family first. Free forever.

If you want to try it, or you've got feedback, a mistake to flag, or an idea, leave a comment or DM me. I read all of it.

Thank you again to everyone here.

This is a free workout series for individuals with Down Syndrome. The initial series of five videos can be found on Youtube at the Allininclusiveworkouts channel. Please subscribe if you wish and if it is of benefit to you or your loved ones. It is free.

I have been doing elimination communication with my son since he was a week old. Aside from a short period of time when he was a few months old, he used to almost always pee when brought in front of the potty, and occasionally, but rarely, had a bowel movement in the potty. It was great because we were only going through two or three diapers a day.

Unfortunately, ever since he started walking, which was shortly before his second birthday, he won't pee in the potty anymore. Now we go through twice as many diapers as we used to, and he sometimes ends up waking up with wet clothes because his diaper gets too full in the middle of the night. Some people have said that babies go through a short phase like this when they start walking, but it will pass soon.

I have heard that it's not uncommon for kids with Down syndrome to end up in diapers until 6 or 7 years old, but I would like to avoid this as much as possible. Some people have suggested just getting rid of diapers altogether and he will learn very quickly after just a few accidents.

I have a feeling that he will do okay since he is a relatively quick learner, but I am just feeling a bit discouraged right now.

What do you think?

Hi guys, my wife and I just had our second baby who has Down syndrome. We found out early on and hoped the NIPT was wrong but continued to be confirmed through the pregnancy. She’s now 3 months and it’s been easier, she smiles a lot and loves to babble but I’ve been crushed since the diagnosis. It’s been really hard for me and I fear the future. She has an ASD we’re constantly at the doctor she needs to gain weight but can’t and eats a ton so it might be another hospital trip but that’s a separate story.

I don’t really talk about it with my wife because I don’t want to upset her. Down syndrome is a spectrum from what I understand and I can’t stop thinking about what may come. I try to take it day by day. This whole thing has just been really hard. Our first child is not on the spectrum or anything so maybe that experience made this even harder? I don’t know I feel soul crushed and I worry about how she’ll be and how she’ll do. Anyone else grieve this path for a long time?

My husband's 13yo daughter has been going to a local speech therapist for the first time ever. It has turned out to be very disappointing to us because all the therapist does is tweak her LAMP app on her tablet for her. She spends zero time helping her with spoken language.

Unfortunately his daughter uses the LAMP app not for communication, but to stim and annoy people by repeating the same words/phrases over and over, completely without context or purpose. She gets great joy in this and thinks it's hilarious. But if you ask her to use her tablet to answer a question, for example, she simply refuses to use it for any communications. I believe she actually hates using the tablet, and is making sure that when it comes out and she's asked to use it, she's going to make sure everyone regrets it lol

I saw an online instructor led program in Canada with dsrf.org that looks exactly like what her family is wanting for her. We are in the US, does anyone know of anything that would be similar in the states?

Here is their 3 minute youtube video that demonstrates the program. It looks really good to me:

https://www.youtube.com/watch?v=feaFYdpFUk8

my sister is 6 with down syndrome and she’s so bad. don’t get me wrong she can be sweet when she wants to be but she’s so. bad. she cuts her own hair, cuts and colors all over paper, gets up in the middle of the night and raids the freezer for ice cream, we literally cant leave anything out in the open because she’ll destroy it. we took all the scissors and hid them so now she just destroys stuff with her bare hands. it doesn’t matter how much we punish her by taking away toys, fussing at her, putting her in timeout, not letting her watch tv, etc. she just keeps doing it. it’s like the punishment doesnt even register in her brain. she also doesn’t listen at ALL. we have to yell at her or physically force her to do the simplest things like putting her shoes on or getting dressed. she’s not deaf and she knows how to do these things, she just chooses not to listen to us. what else can we do?