Our baby boy tested positive for TRI21 on a NIPT test; anatomy scan only showed absent nasal bone.

We have fetal echo tomorrow. We opted out of amnio.

I am trying to figure out what size to lean towards, does he have DS or not?

Anyone else’s child have DS with only an absent nasal bone on ultrasound?

A reddit community for disabled individuals to connect with others and search for love has been created. It is called r/DatingforDisabled.

Hello to all, when did your DS kiddos start crawling? My little one is turning 13 months and has not started.

There is a facebook page called the Inquisitive that steals and posts people's photos from social media to farm engagement. So many of them are photos of kids with down syndrome with captions like "It's my birthday, I just want a wish" and a bunch of unrelated hashtags of things people search for a lot like female celebrities and marvel terms. I know of some of the kids from parenting groups I am a part of. One boy had passed away a few years ago. The page also post pictures of people with limb differences and other visible disabilities.

It's awful and exploitative and I've tried to report them several times, for fraud, for impersonation, for spam. But each time I get an automated message saying the page meets community guidelines. I can't think of any other recourse, does anyone have a suggestion?

How did you guys get your LO to use a straw cup? My son just recently started holding his own bottle, he is 2 and is currently using dr browns transition nipple bottle. His speech therapist told us we should start trying to get him off the bottle, she said we should just not give him any juice at all during the day unless he uses the straw sippy cup. I don’t really agree with this since I don’t want my son to get dehydrated in the process. I have been trying to juice box method but unfortunately my son refuses to even touch the juice box… can’t help but feel like I’m failing him since I don’t know what else to do 😣

Our 8,5 month old was diagnosed 1 week after her birth and they said it was full t21. She didn’t really look like she had it except when she did certain facial expressions. We thought it would get more visible the older she gets but it’s less and less visible, even some doctors have started to question if it’s really full t21 but they won’t take any more tests. Has anyone else been through this? Did you decide to take another test or something?

hello all! my son Jamie (formula fed) will be 1 year in January, and we have been working with a speech therapist for a month or two now on feeding; he eats purees for solids and we have been incorporating hard munchables which helps with his fine motor skills, too. just wondering what it looked like for you all as you transferred off of formula post-1 year since he won’t be eating enough solids to get the sufficient caloric intake. i have heard from some others that their kiddos with DS drank supplemental drinks? i also heard from a therapist at a hospital Down Syndrome clinic that milk will suffice where formula was. just kinda nervous for a transition. thanks 💙💛

Hi there!

My name is Koen, and I’m a Dutch digital designer passionate about creating meaningful solutions. I’m reaching out to gather insights on applications tailored for individuals with Down syndrome.

I’d love to hear from you about:

• Challenges you’ve faced with existing apps

• Gaps in current applications that need addressing

• Specific needs that aren’t being met by available solutions

Whether you have ideas for new apps or know of existing ones that could be improved, your experiences and suggestions are invaluable. Your input will help in designing tools that better support individuals with Down syndrome, their caretakers, and parents.

Thanks all!

I have an almost 5 month old daughter and we found out post birth when she was 1 month old. I’ve noticed that for the most part it’s been better since the initial shock, but my hubby’s best friend and his wife just had a baby and the picture of him holding their new baby just sent me into a spiral again.

I hate feeling this way but obviously still have so much jealousy and grief around her diagnosis. Ugh.

Edit: thank you for all the comments. I appreciate all of the vulnerability that you shared and am appreciative of this community.

Sounds a little bit weird, but I'm currently restyling a Barbie with down syndrome and now I need some input on what type of shoes I could make her that would be appropriate. I don't know much about down syndrome, but she came with ankle supports, so I thought I should ask first before jumping into something.

I hope my question is appropriate for this sub and if you have any other suggestions for her I'm open for it. She also needs a name, so I'm also open for name suggestions.

I just wanted to share a wonderful resource that really helped me during a challenging time after my baby’s prenatal Down syndrome diagnosis. I was feeling scared, overwhelmed, and alone, and then I found out about Jack's Basket. They sent us the most beautiful gift basket filled with thoughtful items, but more importantly, they connected me with a volunteer who is currently raising a child with Down syndrome.

This connection to another mom was a saving grace for me. Talking to someone who had walked the same path, someone who could offer advice, reassurance, and share their own experience, was incredibly comforting. It truly gave me hope and helped me realize that my journey with my baby would be filled with love, support, and joy. My baby is now 7 months old and the best thing that ever happened to me.

If you’re a parent navigating a similar diagnosis or know someone who is, I highly recommend looking into Jack’s Basket and request a basket on their website. They are doing amazing work in providing support and a sense of community during a time when it’s easy to feel alone. 💙

Hi everyone! If you have a baby with a gtube (baby baby..as in not yet sitting in a high chair) where are you feeding them? I don’t want to feed him in his crib through the gtube in worry he will associate his bed with eating. Have you found a set up that works for you that you mind sharing?

My sister needs help applying for así baby is 6 months . What is a good support group she lives in Cobb

Hi everyone,

Looking for some advice for my son. He is 4,5, the sweetest boy, but for the last 6 months or so, he has hardly been able to play by himself att all. He has a little sister who is 2,5, and another sibling just a few weeks away. He is basically glued on me every minute we're both at home. He wants to sit in my lap while we eat, I need to feed him (although he can eat by himself but hasn't done so in a while) and in order for him to play I need to sit next to him on the floor the whole time. If I get up from the floor to sit in our chair in the playroom, he breaks down crying and it takes a long time for him to get back in the mood to play.

I'm weeks away from having a baby so it's probably going to get worse.

Anyone have 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.

Hi I'm a caregiver for a really nice 35 year old nonverbal man with down syndrome. He is wonderful to be around and overall very easy to take care. However here of late he's been getting his days and nights mixed up. I've been trying to keep him during the day but unfortunately sometimes when he's determined to sleep it feels like there's no stopping him. He's been keeping me up all night because he screams a lot when he wakes up and then I can't seem to get him back to sleep. Any advice would be appreciated.

We just found out recently that my 3 y/o daughter is on the box of her favourite tv shows new toy. We are so excited to see her on it and share her success! She LOVES the toy. It’s wonderful to see how much more inclusive the world and pop culture are becoming.

Disclaimer: This is not an ad for the toy. We do not get any sort of additional royalties or commissions from the sale of them.

Just found out we have a bit of a surprise pregnancy and my HCG numbers at 4 weeks are sky high and tripled every 48 hours for the three draws I did. Ultrasound around 5w3d showed just one gestational sac so it’s not multiples. I’ve never had HCG draws with any of the my other pregnancies so no idea how their numbers compared. My son with DS is 18 months and my HCG levels are worrying me that we’re about to get hit with another DS diagnosis. Does anyone remember what their HCG levels were at 4-5 weeks?

My daughter is 6 months pregnant and was told the baby has an 80% chance of having down syndrome. What should we expect? He also has a heart condition and will need open heart surgery.

hey guys!! just looking for some christmas gift ideas for my sister. we still do the presents under the tree christmas morning thing every year since she enjoys it and quite frankly, i enjoy it too lol. she is 21 years old and her main interests are electronics, youtube, kpop, victorious(not so much these days but every now and then she has the soundtrack playing) and childrens movies.

every year my mother and i find ourselves stumped on what to get her. she has a dvd player and probably every barbie, shrek, pixar, and disney movie you could ever imagine. so another movie is out of the question since she already has all of them LOL. she has a tablet she uses 24/7, her speech device, and when she comes home from program with her school laptop she will use that as well. i was thinking either a new tablet or her own laptop to use at home may be a good idea.

the thing is, my mother and i want her to have a lot of christmas presents to open. weve tried getting her toys from her favorite movies, but shes only interested in them for a few weeks and then she doesnt even really touch them or look at them anymore. she is most interested in her tablet because she likes to watch movie snippets and music videos.

ive noticed recently she comes home wearing costume jewelry, which shes never really even been interested in jewelry like that before. i suggested that to my mother as well but she thinks it may not be as interesting to her since she gets that jewelry at her program as a prize from an activity. for example, they had an event where they would have her and her classmates walk a certain distance/amount of steps and they earn a charm for a necklace for each one earned. she got that necklace and wore it for MONTHS until it broke. maybe we can start doing something like that?? not sure.

any ideas or advice or anything is welcome! thank you!

My sweet boy with Down's Snydrome is now ten months old. Since about 2 months I've noticed that he's flapping his hands and fingers when he's excited. It made me think about autism, because I read that this dual diagnosis is a possibility. Does anyone have any experience with autism? Is it even possible to tell at that age? He has very good eye contact and is overall really social, he's just scared of too many people when he's tired. I'm just not sure if maybe people with autism tend to have this social abilities and then regress and lose them when they're older. His next neurological appointment is in a month, I didn't wanna anticipate it just because he's playing with his hands. It's not gonna change anything anyway. I'm just curious though, could this be an indicator?

3 month old baby having open heart surgery for ASD and VSD this Friday and I am very anxious. It’s not his first surgery as he has a Gtube but much bigger deal. Any tips for preparing myself? What did you do for 6-8 hours during surgery to stay chill? Any advice of what to expect for after care. Heads up or positive experiences appreciated!

When is the right time to begin looking for supportive living situations ? My daughter is 26 years old with DS. She is verbal but has a hard time composing thoughts and words and a lot of anxiety. I am afraid that my fears are partly related to her anxiety. Her hands shake.

I think she would like independence, but I am not sure when to make that happen I have heard nightmare stories of abuse.

I am an older mom and I know I won't be here forever.

Do folks here struggle with the same?

Our little guy (19 months) is starting to pull himself up and looks like he really is trying to start walking, so we would like to get him something to help move around the house. I was wondering if anyone has something specific that they used for their children? Amazon has a ton available and most are more/less the same. I might be overthinking it but it looks like its hard to find something that is just focused on the walking part and not just a busy box with wheels.

So my brother in law is in mid 20s with Down Syndrome. He is currently being held in hospital under a PCE after several acts of violence towards his mother who is his only caregiver. Me and my partner live an hour away.

He was social in high school, has had several jobs but is not high functioning. His mother is overbearing and he is not verbal.

Doctors and his mother suspect schizophrenia but since researching on places for him, I came across several readings about “self talk” which is pretty much his behavior. He has an imaginary girlfriend. He is hard to communicate with.

He snaps or becomes violent with his mother. So far it has included pushing her down, throwing objects at her. Pushing her into a fireplace where she injured her wrist.

He later escalated to punching a firefighter (where he works as a volunteer firefighter), attempting to be physical with tennis instructor who wanted a group picture, then shortly after - throwing a tennis racket at his mother’s face which she thankfully blocked but suffered contusions on her hand.

Most recent attack was a point blank punch to her face while she was helping trim his neck of hair. She woke up unconscious on the floor for an unknown period of time.

Biological father died several years ago. One brother had to tackle him to defend his mother so he is scared of that particular brother.

They tried several doctors who gave him ANTI DEPRESSANTS. With severe reactions. The mother is in her mid-60s. Is a speech therapist and has experienced dealing with children. There is no doctor they have consulted with any experience with Downs and this behavior. The mother is also now anti-vax. Did not vaccinate the both of them during covid. She is done with “medicine”

The overall consensus in the family is that he will eventually kill his mother if something is not done. It has gotten to the point where he now hast to live separately, but no place we find in Louisiana has experience with down syndrome.

A family member had to physically restrain the mother for doctors and nurses to take him. She has been catatonic at times since being punched and has not being able to make decisions so that was the call.

Can anyone give any recommendations or insight? We are located in south east Louisiana.

Hey there,

I'm working on a project focused specifically on gathering information and advice for friends/family of people with DS who are looking to date/potentially get married. I was wondering if anyone on this subreddit had anecdotes about finding partners for the person with DS in there life or about the difficulties that come about in romantic relationship between people with DS. If you're open to discussing this further in detail as well my DMs are also open.

For a bit of context my father, who helped my sister with DS get married about ten years ago, is hoping to spread awareness of the possibility that people with DS can date and have romantic relationships just like everyone else, and wants to start a youtube channel devoted to this. But I've pointed out that his one experience is not enough of a bassi for such an endeavor and as such I'm helping him by looking for as many perspectives on this as possible.