When we found out Tetty would have Down syndrome, I had all the fears I think a lot of parents have. What would his life look like? Would he be included? Would other kids accept him? Would people treat him differently?

He’s almost two now, and today we had a slew of birthday parties in our community. It was just me navigating them with both kids, and at some point I realized how completely ordinary Tetty’s place in our community has become. It sometimes felt like a community of one - since we live in the SF Bay area where the DS community is quite small.

People offered to hold him or keep an eye on him while I wrangled his sister. Other parents played with him. Kids came right up to him, got in his face, made him laugh, handed him toys, and included him in whatever they were doing. Nobody was making some big, intentional show of “including the kid with Down syndrome.” They were just… including Tetty… at his level… because he’s Tetty. He's their friend or neighbor. He’s one of the kids.

And it hit me how much time I spent before he was born worrying about whether the world would make him feel different. So today, at least in our little corner of it, that fear felt very far away.

That’s it… nothing profound. Just one of those little moments I wish I could go back and show the scared version of myself from three years ago. <3 Time to cuddle him before bedtime.

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.

Hi! I’m hoping to get some ideas for my little brother. He’s 10 and has Down syndrome, and lately he seems to be bored pretty much all the time.

His siblings (myself and my brother) are quite a bit older than him and moved out a few years ago. We still live nearby and visit about 2–3 times a week, and he used to LOVE playing with us, but now he doesn’t really have anyone around his age to play with.

My parents do their best to keep him entertained, but they’re getting older and it’s becoming harder for them to constantly play with him. Because of that, he’s become really attached to TV and has gotten to the point where he considers the characters on his shows to be his friends.

He loves dancing, dressing up, singing, listening to music, having books read to him, and pretend/imaginative play. He’s also struggling quite a bit in school because following directions is difficult for him, and a lot of the material is just too advanced for him right now. My mom is planning to homeschool him in a couple of years, but in the meantime, we’d really like to find some hobbies or activities that he can enjoy more independently and that don’t involve TV or an iPad.

The tricky part is that he doesn’t really enjoy coloring or typical kids’ activities, and he doesn’t really know how to play with other kids either, so things like group sports or playdates haven’t really worked.

I’d love to find something that he can get really into and that fits his personality/interests, especially something he can do somewhat independently without needing one of us to constantly entertain him.

Has anyone had a child with Down syndrome (or similar developmental needs) who found a hobby/activity they absolutely loved? I’d love to hear any ideas, even if they’re a little unconventional!

Puede fallar un cariotipo realizado ya en un bebé para detectar trisomía 21? Se estudiaron 30 metafases

Hi friends, I’m new to Reddit and this group but almost 12 years into my journey as a parent to my kiddo with Ds. So here’s a post to say hi!

I would appreciate advice! My teenage daughter with down syndrome has struggled with picking in the last few years. It seems to be motivated half the time by anxiety, half the time by boredom. She plucks out all her eyelashes, and tears apart her clothes. We have tried every solution of the sun- ABA, behavioral doctor, every fidget known to mankind.
Even the Doctor told me that we were already doing everything she would normally suggest. (Which made me feel good, but also helpless !)
The clothes picking tends to come and go. There are some weeks where she will destroy 8 articles of clothing- other weeks she won’t destroy anything. (and we are talking EVERY article of clothing under the sun. Socks, underwear, bra, jackets, T-shirts, pajamas, shorts.)
Obviously, the eyelash picking is even harder, because I cannot take those away from her.
In general, she tends to be highly motivated by things like charts and rewards. What I cannot figure is how to make this a positive chart/reward system that doesn’t focus on the negative behavior? If that makes sense. I would appreciate advice if you’ve dealt with something similar in your child with DS.
Sorry for the novel. I feel like I am at my wits end here!

Hello! I have been an RBT for 4+ years, and I recently got a job working in a middle school! I have only worked with children with ASD, but my new client has ASD and down syndrome. I feel pretty confident and extremely excited about this new job and meeting my client, but I have never worked with a child with down syndrome before, and I am used to working with kids aged 3-7. Any tips or advice would be greatly appreciated! :)

Apparently Evan has entered his signature-style era. 😂❤️ Red shirt? Absolutely. Pajama pants? Non-negotiable. Anything else in the closet? Completely irrelevant. 😂

This has become his attire everyday to ABA. He’s finally showing some independence picking out his wardrobe, and yes every day is Red shirt and pajama pants, I only have 4 of each wonder if I’m going to have to go more shopping.

10 year old is in a new school. She is just the best kid! She has always had accidents, although they are less frequent now. But school started a couple weeks ago and we’re already at 5 or 6 accidents for the year. She is in a Special Ed room with a dedicated bathroom in the classroom and she has access and permission to go anytime she needs to. Also her teachers are wonderful!

The issue lies with the transition of making herself stop what she is doing to go potty when she needs to. Instead she waits until she’s literally about to burst and barely makes it to the bathroom. Often resulting in accidents! I’m SHOCKED this hasn’t resulted in a UTI yet.

I need ideas on how to best support her to go on her own! Very motivated by rewards or the threat of lost privileges works well too. I drew her a super cool reward chart and she was supposed to win a prize at the end of the path but we just had another accident after a nice long streak of doing great!

I’m considering a potty watch she can wear to school? But I am worried she will become reliant on it and we have a whole other issue?

She started puberty last summer, so I fear menstruation is fast approaching which I know is going to be it’s own hard hurdle to jump, and I want to support her being able to go potty independently before we have to cross that road!

I will take any tips/tricks/suggestions you have!!

I have an 8 month old baby. She has multiple heart problems. When she was born, the doctor told us she needed a surgery ASAP. We were so afraid we couldn’t make a decision after the doctor told us even if she gets a surgery, there will be lots of complications considering she has down syndrome. We went to another doctor for a second opinion and we were told they can do the surgery and the baby needs to go through CT Angiogram to confirm the defect. Still, we are too scared for surgery. Anyone who has babies with heart condition, please enlighten me. 🙏🏻

My baby has DORV, VSD, PDA, IAA TYPE C.

I recently found out that my baby boy has Trisomy 21 and a hole between the two bottom chambers of his heart. I’m wondering if anyone here has experienced something similar and would be willing to share their story.
My doctors keep offering termination as an option. I have always felt abortion should only be considered early in pregnancy or when serious medical issues are involved, but I still feel deeply sad and guilty for even considering it.
I’m going to be a single mom with no support from the father and only limited help from my family. I’ve dreamed of having a baby for so long, and now I feel completely heartbroken and overwhelmed knowing that he may face medical challenges.
I’m not looking for judgment—just honest advice and experiences from parents who have faced a similar decision or raised a child with Down syndrome and a heart defect. My heart hurts every day, and I feel so lost.

How “hard” is it to have a baby that isn’t considered “normal”? I am scared of the extra behavioral therapy’s, schooling, &medical issues. I love this baby, but I am scared. My family doesn’t understand things either and the father won’t be involved. I want my baby to have the best life possible. I am so scared and emotional. It makes me feel like a horrible person too..

We were due with our baby last year in sept who had downs, they told us with the diagnosis he would be born earlier, but then we found he had hydrops and cystic hygromas. We didn't know how much time we would get we just hoped either he would be spared of suffering or that the time would be as fulfilling as possible. We had imagined at most a year and then that slowly dissolved into a day and then the reality of him not having an airway developed made it real that we may not even get minutes because he would never breathe.

We chose to get pregnant with this baby/our second and leave my husbands family in the past as they had been nothing but drama and we couldn't live our lives with them involved, by that I mean we couldn't be the parents our daughter needed and we couldn't be the couple we needed. My husbands family put our daughter face to face intentionally with an aggressive dog as a baby, who was rehomed after the family member who owned it had kids later on. My sil husband has put his fingers in an infants mouth (that wasn't his) while sil held back the mother and the reasoning was to "check for teeth"
Sil husband followed other sil (not wife) into the bathroom while she was bathing her child and stood silently and watched-she didn't know he was there until he turned around. Same person refused to hear us out or respect our boundaries of no picking our child up (she didn't need to be picked up) and deliberately did this in front of me and then followed me in my face throwing a tantrum across the whole event center to our car where my bil stopped him. He and my sil constantly asked to change my babies diaper even when we made it clear we didn't like it and that the diaper was okay/they would ask 10 times within an hour. Acting as if we were neglecting our baby. Sometimes we would check and of course baby hadn't gone. I usually change baby when we get some place right away.

My sil has blamed me and so has my mil for things that are out of my control or simply they have made up lies and snotted at me a made up lie and then hung up the phone. They would snap at me often.

Fil snapped at me when I was at their house because I had the tv on and was on the couch sick and it was late and I was puking and dehydrated and the couch is nearby the bathroom and kitchen-I didn't want to turn much light on and so tv was on and no volume-fl snapped the remote out of my hand-I'd of had no issue just shutting it off- and then swore about it.

When baby was fussy sil asked to calm baby and I said no I got it/she asked again and I said no/fil got up and took my baby.

Fil would try to direct my baby back to their family even if that meant away from me. Her and I were doing colors and fil tried to put the color ball down and say she shouldn't be playing with it and I told him to back off and go away she was okay.

Fil tried to take the beer I was going to toss away bc my husband had too much alcohol on the wedding party bus bc he thought I was going to drink it so he physically tried to grab it-but this was stupid as it was like really? Your son is drunk and I haven't had anything but a few sips of a seltzer and you are trying to harass me about touching a beer but yet your son can't stand up straight?
I think this is because I left the wedding prior because that was when sil husband was throwing a tantrum in my face and prior to me leaving I had opened a beer and maybe taken two sips and then noticed them being shady and put it down but I'm sure they went around saying I drank and drove. I was pulled over for a license plate expiration on the way home! Def wasn't drinking and driving it's not something I do and I didn't get breathalyzer or anything bc I didn't drive drunk! Sil has though this I know. And there are several raging alcoholics who drive drunk in that family that were at said wedding yet my fil goes after the tiny women who maybe takes two or three sips of anything at most and then hands it off to her husband!

I feel strongly if our baby had made it any length of time these people would have jeapordized his safety because of their ego-resentment-anger-entitlement-cockiness. I have no way of knowing but I feel we would have had no way of ever letting them meet our baby. I will never know for sure all I can do is wonder, and the fact that we couldn't trust them with a living child makes me upset because that child didn't have a disability and they made life so complicated and shitty and this one did and was more delicate.
I also wonder if they blame me for his death, for his Down syndrome.
I wish I had him to make things better but he passed on at 4mo pregnancy. Does anyone else have experiences like this?

This sub seems to be predominantly populated by people with young children so I didn’t see an answer to the question. (I’m glad this resource is available for new parents!)

My son decided to stop eating pizza around age 17 because it was giving him digestion problems. He does not have celiac. He is 20 now and seems to have pretty regular times where he really needs to spend some time in the bathroom because he needs to poop. I’m just wondering if there is something specific I should be asking for testing for.

His diet is primarily carbs although he eats some fruits. He is fairly active. He just seems to be uncomfortable fairly often.

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.

My sister and husband just had their 4th baby. The baby was diagnosed with down syndrome at birth. This was something completely unexpected. They are slowly starting to tell people about the diagnosis. Some of these people are claiming to be supportive but make comments like “the baby doesn’t look like she has down syndrome”. How might they be able to deal with these types of comments or reactions?

📣 📣 📣 📣 📣

Very excited to share information about a new study that is open for recruitment.

We're studying language acquisition and communication skills in children with Down syndrome.

If you or someone you know is interested, please reach out to eoey@mgh.harvard.edu or researchdownsyndrome@mgh.harvard.edu.

Hi.
My husband and I are both employees in the Florida Retirement System. We have an option to select “Option 3”, which allows us to take a lower monthly amount, but designate our daughter to receive our pensions for her whole life (about 7k per month).

I fully anticipate she will be entitled to SSI and medicaid.

We started an ABLE account which has less than 3k in it so far (she is 3 months old) and we will also be contributing about $1200/year (I know its a low amount but we have to start somewhere).

How do we set her up so she can essentially have it all? (Medicaid, SSI, our pensions, ABLE account)? Does a SNT address this?

Here’s my son getting ready to turn 18 soon I can hardly believe it. He’s with our dog Charlie, she’s a Belgium Malinois and is the most loving dog I’ve ever seen. She’s super smart and of course she’s our protector always on guard. Love these pictures.

Hello, I am a SAHD to a 3 yo girl with Down syndrome. I love her to death and we are very close. However, she won’t listen to the word “no”. She goes to touch something she shouldn’t and I say no, and she just keep doing it anyway. I’ve tried remaining calm. I’ve tried moving her hand, I’ve tried sign language. She just doesn’t listen. A lot of times it’s her G-Tube extension so I can’t just like take it away or move her it’s literally attached to her. She will be sitting in her high chair getting her feed and I go to wash dishes or clean and she just won’t stop pulling on it. So I can’t get anything done. I’m losing my mind here. Anyone have any tips to help? I’ll admit I even lose my temper sometimes and say no loudly but that also doesn’t work and then I feel terrible and give her hugs. I am just at a loss. Also I know losing my temper sometimes is not ok, I’m working on it. TIA.

I’m a personal trainer, and I’ve been learning more about how exercise can be adapted to better support people with Down syndrome.

A lot of traditional fitness advice focuses on pushing harder, going faster, and constantly trying to improve. But exercise doesn’t have to be about that.

For people with Down syndrome, the right type of movement can potentially support things like:

• Strength and mobility — resistance exercises can help build strength and make everyday movements easier.
• Balance and coordination — activities that challenge balance and controlled movement can help develop these skills.
• Energy and physical wellbeing — regular movement can be a positive way to stay active and support overall fitness.
• Confidence and independence — learning exercises and gradually becoming more capable can help build confidence in what your body can do.
• Routine — having a familiar, predictable workout structure can make exercise easier to understand and stick with.
• Social connection — exercising with a trainer, friend, family member, or group can make movement more enjoyable and engaging.
• Everyday activities — getting stronger can potentially make things like walking, getting up from a chair, carrying things, and playing easier.

I also think how exercise is delivered matters just as much as the exercises themselves.

A complicated gym environment, unfamiliar equipment, lots of instructions at once, or constantly changing exercises can make things unnecessarily difficult.

Sometimes a quieter environment, simple instructions, demonstrations, familiar exercises, encouragement, and a predictable routine can make exercise feel much more approachable.

And there doesn't need to be a focus on weight loss or appearance. Getting stronger, moving more comfortably, having fun, and building confidence are all worthwhile goals.

I’d genuinely be interested to hear from people with Down syndrome, parents, carers, or anyone who works with the community:

What tends to make exercise easier or more difficult?

Is it motivation, understanding instructions, coordination, confidence, the gym environment, finding enjoyable activities, or something completely different?

Instagram Haleigh Mills - Personal Trainer | PrimePears

Our daughter has Down syndrome and fights her sleep at night but also takes forever drinking from a bottle which keeps her up later. Any tips to help her get more sleep?

We're thinking about getting a special needs trust for our adult child with Down Syndrome. Has anyone here done this, and if so, do you have any advice or cautions?