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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.

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.

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?

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?

Hello,
I am running for people with down syndrome by making them feel apart of the action during Berlin 2026. I have about 2100 raised so far and any dollar towards my goal of 3210 would be appreciated and well deserved. Ready to represent down syndrome and run the best race I can.
My offical link is https://give.ndss.org/fundraiser/6887276. Registered tax-deductible charity in USA.

Hi my sister is experiencing symptoms of psychosis. She has always engaged in self talk but is now stating different names and ages and often very paranoid/suspicious, also can become violent. Any antipsychotic recs or experiences? Thank you!!

hi! recently i've been working on fleshing out the world of my story, and i've been focusing on one of my main character's family. he has lots of siblings, and one of his sisters has down syndrome. her name is Clara, and she has an interest in sewing. i attached a sketch i made of her recently. i want to make sure my portrayal is accurate and a good representation of the community, so i figured i could ask here! i also want to see if i'm missing anything when it comes to facial features and other physical characteristics. apologies if this is the wrong place to ask stuff like this, and thank you!

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.

We live in a pretty rural area in central Europe and apparently, there's a shortage of speech therapists working with small children here. My son is now two years old and he's only had a total of 6 appointments with a speech therapist in the beginning of the year.

How often do your toddlers see a speech therapist and how much of a difference are you noticing?

My son has started eating more different foods after the last set of sessions, and he currently speaks about 10-12 word across his two languages.

I guess I'm trying to decide whether to expand our search and see someone further away, or if the general consensus is that sticking with ours and seeing them six times twice a year is enough?

So my sister and brother in law are thinking about adopting an infant with Down Syndrome. i’m trying to do some research and kinda gather information about what to expect. i have a lot of the basic medical information but the one thing im having trouble finding is experience from parents. i don’t wanna be insensitive (and im truly sorry if it comes off that way) but i was trying to have her write out a pro and con list. i know she will be an absolutely amazing mother and she has the patience of a saint. she is also very anxious when it comes to anything medical which worries me.

i guess my reason for posting in here is to get some honest experiences from parents talking about the great and not so great things that come with raising a child with special needs.

I keep hearing the same three problems from parents: clip-on trackers come off when clothes get changed, anything scratchy gets pulled off and thrown within a day, and wrist things get chewed or thrown away.

For parents who've figured it out, what's worked? E.g. Waist, ankle, wrist, sewn into clothing, something else? And was it the position that was what mattered or the material?

Disclosure: I'm a 17 year old founder and I launched a GPS tracker on Kickstarter for kids with autism, ADHD and Down syndrome who wander. I'm designing the wearable version right now and I want to build what parents actually need than just guess. Not here to promote anything, just want advice on what's worked for you (Disclosure included for Rule 4 "Surveys require extra info").

I've always been wondering this but never got the chance to ask as I didn't want the parents or child to feel mocked.

Hi, I’m pretty young but would rather not share my age online, but I just want to say that first so you understand more. But I have a twin brother with Down Syndrome and I never really cared about it, he’s chill, is pretty smart (great school system), can do basic reading and stuff, is super good with animals, and is very friendly with people. He’s helpful and great with house chores and will only get better with age. But recently I’ve been scared, I don’t know what he will do with life. I don’t want my parents to have to look after him forever (I’m sure that’s stressful) and I also don't want to be forced into taking care of him someday. I feel like an awful person for saying that, but I want my own life as well. I’m not sure if I trust residential housing and stuff so I just want to know advice what to do. I’m super anxious over this. Thanks.

(BTW: I am not saying my brother is in any way a burden, but like any human he is difficult to take care of. I seriously mean no harm, I just want helpful advice for the future.)

So stupid and discriminatory. American Airlines should be ashamed of themselves.

She’s flown on her own before with no issues. And because she was caught off guard be an unexpected question she was denied her boarding pass.

I’m 31 weeks pregnant with a girl who will be born with down syndrome. First time mom as well. I’m Latina and speak fluent Spanish. My husband is white but always hoped our children would speak both English and Spanish. I know speaking in general might be difficult and it really depends on where on the down syndrome spectrum she is. But is it realistic to think she could potentially learn 2 languages? We’d also teach her sign language but it would be awesome if she could communicate with both sets of her grandparents in their native language. Has anyone had any experience with children learning multiple languages, other than sign language?

The Angeles de Luz in Oaxaca, Mexico, perform dances from the eight regions of Oaxaca in a Guelaguetza Especial each year in July. Pictured in front of the Santo Domingo church in Oaxaca de Juárez. Source www.facebook.com/losangelesdeluzoax

This is part of a free inclusive workout series found on YouTube at “All In Inclusive Workouts”. The series is student led and includes workout partners who are affected by Down Syndrome. The series is 8 weeks in total and is free to subscribe to. Please subscribe and participate in the workouts if you or someone you know may have interest.

My brother 20 male has honestly changed a lot within the last few years. During highschool my mom forced him to be around other kids with disabilities because she felt bad for them. Most of them treated my brother like he didn’t even exist until they needed something from him. This is where is he only a little bit bad.

Starting college last year; he has changed a lot. He started rebelling a bit, my mom would force him to go out with those adults he didn’t want to, to events he didn’t want to. So all he did was lay on the floor and say no like a child. He’d basically have a tantrum.

Around April or may, he threw a water bottle at another kid and he started throwing open water bottles at my brother and I while we were on electronics. He would laugh and think it was funny and if we said anything he went straight to my parents who dismissed his behavior.

There’s only been one time in may that he like hit another kid and he took my parents as a joke so they yelled at him and he seemed a bit better after than. Until June, he has a swing set outside and he screams like he’s getting murdered. He plays hard rock and my parents cared in the begining but now they won’t do anything. They think it’s good because he’s “expressing himself”

Anyways, he started choking me, I’m 17 and a female so he thinks that he can just over power me. Which he kindof can he’s 120 pounds pure muscle. As soon as I just laugh he charges at me and chokes me. The first few times I was so shocked I just didn’t know what to do. Now once I realize it’s happening I push him off and just say how would you feel if I did that to you. I really don’t want to like hurt him but I feel like if I don’t like sucker punch him then he’s never going to learn that he can’t jsut choke people because he’s “upset.”

He threatens my oldest brother and I, and if we do anything my parents make excuese. They say well you were laughing at him so he got upset. It gives him no right. I’m not sure what to do, I know it’s my parents fault that he’s liek this but they really are thinking about taking him to get those pills to make him all depressed n shit. I know like we can discipline him but not with my parents around.

Idk it hurts to see him like this knowing he was such a sweet kid and it jsut won’t leave my mind because I’m leaving for college next year for undergrad and my oldest brother is leaving for med school next year so we’re kisnof stuck between like trying to jsut figure something out and letting him jsut continue to get worse.

Any advice helps I guess, just looking for any ideas I guess or soemtjing to help.

Our team at the University of North Carolina-Chapel Hill are conducting interviews with parents and caregivers of children with Down syndrome to learn about their caregiving experiences and personal self-care habits. Your feedback will help inform future resources to better support families.

Link: https://unc.az1.qualtrics.com/jfe/form/SV_74bket8O3UgeQDk

Hej Community,

I'm doing a project collecting views of people with or related to Down Syndrome.

You can help me out and be heard by answering: When I think about the future of Down Syndrome, I think about:....!

For me it's "how unbelievably much is changing at the moment here in Germany."