I have a child with down syndrome.

Our utritionist told us to feed our baby son every 3 hours.

I understand baby's need to eat a lot and he should be eating a lot. He has gained weight and is over his birth weight. My partner and I were feeding him every 3.5 hours or so because he would actually finish the bottle then and drink close to 2 ounces. Since we met with the nutritionist they told us to feed more often every 3 hours for 8 feedings a day.

He is fully awake when we try, but he just will not eat. He closes his mouth, makes funny faces, has clean diaper, not too cold, but refuses any food until it is almost 4 hours since he last ate and the bottle is almost expired. So we try to feed at 3 hours and end up eating at the 4 hour mark anyways.

I know for a typical baby I think that would be okay, but with our circumstances I think they really want him eating more. We are trying to follow the guidance we are given but it doesn't work and I feel like I'm doing something wrong. If I try everything and baby won't eat, what could I do? I don't want him to be in the ICU.

We took little Wes Trick or Treating tonight and he had a blast. He’s the cutest big bad wolf ever 😊

We just got back from taking our 2 year old trick or treating, he can’t walk yet and is nonverbal. I look forward to taking him trick or treating every year because it’s fun and we love Halloween. We got comments tonight of people asking things like “can he even have candy?” It’s a bit sad because I know these things wouldn’t be asked if he was walking and if he was typical😞 do you guys take your little ones trick or treating?

Hi! I (f21) support a client (f34) who has DS and for the past ten years has “seizures”; she’s had all the checks and bloodwork etc that show there’s nothing medically causing these to happen. Often she’ll fall down and convulse but will peak out of one eye to see if she’s getting attention. Sometimes she feels wobbly and says her eyes feel funny, in which support will help her sit down or offer assistance in standing. Recently she’s been having “seizures” nearly every day and so it’s becoming a lot worse. If you reassure her she’s fine and to get up (obviously ensuring she hasn’t hit her head or actually hurt herself) then she will do so and go about her day. After a collapse she normally gets upset, staff always reassure this is okay to be upset. I’m just curious and wondering what I could do to help her, and how DS might affect her behaviour; I’m not a professional psychiatrist in any form but I do think a large part of this is psychological.

Not sure if this is the right place and I will preface this by saying I know we need a miracle and I believe it’s possible, as anything is possible.

My girlfriend (f36) and I (m33) are having our first. This pregnancy has had an enormous amount of ups and downs. We first found out around 8 weeks we were having twins and were beyond excited. Then the bumps in the road began. We took a NIPT test and positive for 1, T21. We were shocked but we never thought termination. We know it will be tough. Then we go for the 12 week ultra sound, NT was 8, signs of club feet and omphalocele. The doctors said it’s very serious but again no thoughts. We decided to go to a specialist for the omphalocele to see what the extent was. So we’re now 16 weeks, spend an entire day at the hospital doing ultra sounds, MRIs and echo. The doctor says that we have good news and bad news. Good news is the omphalocele is small and not a worry for them, also the heart is good and working, however the baby is showing non-immune hydrops.

The doctor has said she has seen babies survive but it is fatal. Especially this early. She doesn’t know if the babies heart can keep going but right now there is nothing we can do. We could do an amnio but we’re already high risk and we don’t see the point. Even after all of this we still have hope, but we have come to terms that one of our boys may not make it. Also I’ll add they are di/di not identical so the other is not at risk. I guess I’m posting here so idk to vent, to get support or just if you read this keep us in your thoughts and prayers. Last thing we do know the risk of mirror syndrome and also things may get worse to the point we have to intervene. But right now we’re holding on to hope and believing our little guy is a fighter.

Our first baby, and we got the news that our baby girl has DS. No nasal bone in the ultrasound at 20 weeks with a positive NIPT test. We are over the shock and have accepted it, awaiting her birth in the next couple months.

To keep it simple, are there any specific health insurances that cover DS well? Also, are there any government assistance available and how does one go about applying for it?

Would appreciate the help if someone has already done the research.

Hi all, I’m (23F) a caregiver for a 31 year old man with DS. Lately he’s been having issues with the bathroom, more specifically, aiming in the toilet. This hasn’t always been an issue with him. The real problem with this is that when he uses the restroom, he completely drops his pants to the floor, and then he pees on his shorts.

Does anyone have any advice on how to resolve this issue? He is non speaking and high support needs. I don’t know how to go about correcting this behavior because I don’t want him to feel undignified if I’m in the bathroom with him more or less trying to correct his aim. I would rather not have to bring multiple changes of clothes with us everywhere we go. And this is not a problem with anything internal, he’s had tests and ultrasounds done and they have all shown normal results.

Please let me know if I need to provide any additional information. Any tips, suggestions, and advice is welcome. Thank you in advance!

Hello! I'm currently researching for my Design degree at my University. I'm having concerns about some things regarding AAC pictograms and their use in children with Down Syndrome. I'm in need with context and experiences from parents, teachers, therapists or themselves with AAC pictograms. What are your experiences using this medium, and how common is the approach of abstract concepts with pictograms?

My sister in law as Down syndrome and we can never find a coat that fits bc she has shorter arms. Anyone know where I can purchase a coat that’s shorter length in the arms? Thanks in advance!

My relative with DS (30M) is having eating and drinking problems. Mostly he will accept a syringe. But they are not great, and difficult for him to form a seal around.

He will not use a bottle and needs the syringe to plunge the liquid into his mouth.

The end of the syringe isn't great and not the most comfortable thing.

Does anyone have any ideas on a better syringe/device to feed an adult?

I've seen baby feeding syringes with a teet on the end, which look better and more comfortable. But it only holds 20ml.

Does anyone know of something that could work?

It needs to be a syringe or similar as he will not suck on or bottle or use a cup.

Any help is much appreciated.

Edit- He is under investigation for his eating issue. He has not lost any motor skills. He still does all the other things like get dressed, put his dvds on, and draw. He just has a sudden refusal of food and drink. Only taking in nutrition if someone else does it for him. He can still use a knife/fork/spoon but refuses to. He only feeds himself in very rare, unique occasions. If I or any other family don't feed him, he will quite happily refuse food. He has dropped 40kg/88lbs.

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Hi all,

Question for you strictly out of curiosity. How many of your babies have the single palm crease and brush field spots? My baby girl has a single crease on her right hand only and the most beautiful baby blue eyes with spots. I love these unique and adorable little features ❤️

Hey everyone! We just started with 'See and Learn' by Down Syndrome Education with our little guy. We are very much in the beginning of our early literacy journey. We are a bilingual family and both parents are fluent in both languages so we can be very consistent with our language separation. We live abroad at the moment but will likely move back to one of our home countries for formal education, although which one is still written in the stars. I was wondering if anyone has tried or heard of someone doing early literacy in two languages? If yes, what worked for you? Or anyone who wants to share anything on how they introduced sightwords or implemented early reading? How did you make books? Right now we are learning how not to laminate. Who knew laminating was the hard part?

Hi there, I am currently pregnant with my son who will have trisomy 21. Currently I am waiting for my amniocentesis but with the thick NT(5.2mm) and a positive NIPT screening my geneticist and doctors are very sure that it’s DS. I’m going through ups and downs with this information. This baby is so wanted and loved already. What I am worried about is what the fetal echo cardiogram will show(still have another 4 or so weeks before I can get it done). Can anyone tell me their personal experiences with this and what the first year held for them? Was breastfeeding possible? Did your baby have to stay in the NICU and for how long? I am worried about giving my toddler the attention he needs while taking care of a DS baby. The future is just so unknown to me now. I cherish this baby, have an amazing support system in place, and my toddler is constantly giving my belly kisses and saying I love you baby. I desperately want this child to be healthy and make it to term and not need surgeries. I’m really just looking for support from others.

Hi! I was making a post 2 months before asking if there is a Down Syndrome Discord and I find there wasn’t. :( But one was made by me and some body else so if you are wanting to join you can! It is just the two of us but I am hoping people from Reddit can be joining also and maybe people with Down Syndrome like me can be joining so we can talk?

Thank you for reading! The link is here. :) :)

https://discord.gg/qbfKv64rmz

Our son is going to be born next month and he’s confirmed to have tri21 Down syndrome. I can’t seem to find a straight answer for NJ and SSI or Medicaid. My wife is going to not return to work being that he will have special needs. We have a family of 5 now and my income is about 130k a year. I’m looking at 2k a month in health insurance premiums, on top of mortgage etc.

Is there anyone in here from NJ that’s done through this?

My relative is having medical issues. He hardly eats or drinks and hid blood pressure is very low. He has collapsed multiple times. Due to this he has hit his head, and fallen down the stairs.

For his safety, until we can get to the bottom of his health issues, he has been living downstairs. (Investigations ongoing for over a year.)

His old room Is upstairs and bit by bit he has been transferring its contents downstairs. Going upstairs is too risky for him. On top of that there is the issue that there is no room for his stuff downstairs to do this, it's creating a trip hazard. And so, we have needed to move it all back.

This means he can no longer be left alone as he will go up to his room as soon as he's left. The risk of him collapsing is too high for him to go upstairs, but he will not listen. I feel I can no longer leave the house. I'm constantly terrified he will fall. As soon as I leave, even if it's just to the back garden, he makes his way to the stairs.

We have tried a baby gate (one of the pressure screw ones) and he just rips it off the wall.

Does anyone have a trusted brand of gate or thoughts on other solutions?

Help much appreciated.

Some backgrond information: I am in a relationship now for about 1,5 years. The oldest brother of my girlfriend has down syndrome (She does not) However she has some comminucation issues. If she is confronted with something she can't react normally and she is in general has some things that refer to communication and reacting to things.

Previous weekend I was at her parents house and her brother was there aswell. The parents said something to their son and he reacted to it in a specific way. Then it hit me that my girlfriend sometimes reacts the exact same way he did......

Is it possible/ normal that a younger sister (my gf) copy's some behavior of the older brother (with downsyndrome) because she grew up with it?

If yes, do people have any experience with this and is it possible to get rid of the behaviour?

My question is, what all private therapies I should be getting for my 3-year-old son if I can afford? The pediatricians have not been very helpful, they just ask me what I need and they would refer….But I’m not sure? I am based in US He has speech delays, so I’m getting that. He was behind in gross motor, so I got him some private PT sessions, they taught us some stuff and said they will reevaluate in about 6 months… I’m not sure if he needs OT, what do they do? Behavior wise, no issues that I notice, he is social and kind, no tantrums. Feeding wise, he still can’t eat with a fork, with spoon and hand he’s fine, but he is an extremely picky eater, are there any therapies for that? Are pediatricians usually like this? I’ve moved 3 states, it’s been the same experience with different pediatricians. The current state I’m at does not have a Down syndrome program.

Hello, My partner (M53) and I (F53) have an adult nephew with DS. All is good. Amazing person. In the summer, we stayed with him while his parents were away. We love doing this and spending time with him. During our stay, we took him to the Special Olympics which he does every year. While we were kinda just standing around watching the various games, a team mate of our nephew (also an adult with DS) walked by me, smacked my ass, and when I turned around to see who it was, he winked and smiled at me. It actually hurt. When I mentioned it to the team lead/coordinator, it happened to be his father. But he spoke to him, and later the teammate apologized and we left it at that.

At one point a few hours later in the day, when we (my partner and I) were standing there, the father apologized for his son again and said,

Well at least you know you have a nice ass…

So I just thought maybe it explained a bit more about why the son thought it was ok to do something like that.

Anyhow - fast forward all these months to about two hours ago when I received a friend request and a disgusting message on social media from the son telling me he thought I was hot and that he would appreciate it if I took all my clothes off and send him some pictures of my bare body.

What tf do I do????

If he didn’t have DS - and could truly understand how wrong this is I would call the police since he has already been in trouble for being inappropriate with me.

I am not saying he doesn’t know right from wrong - I just mean this is NOT OK. I do not know this person. I do not know the family.

But our nephew and his parents are a part of the same community and so doing something about this could have consequences that our nephew wouldn’t understand.

Nephew has a “closely monitored” social media account and I’m sure that is how this person discovered me to be able to add me.

How do I proceed?

It’s 12:30am and I am crying overthinking about my son who is 2 years old getting Alzheimer’s when he is older and not knowing who I am. I often overthink things and I try not to worry about the future, but it is so hard not to. Lately every night I start crying thinking about my son. I love him so much, I just want him to be happy but I find it so hard to be positive when there’s so many things he could possibly get due to him having Down syndrome. I feel sad every day and I don’t know how to fix it

Can anyone recommend a dentist near Huntsville, AL for an adult female with Down Syndrome?

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 wife is due February 14 and the baby has a complete AVSD that will require surgery . I just started a new job in Massachusetts and need to pick my benefits . FMLA is pretty good. Should I max out short-term disability insurance? I’m assuming I can use it for any unforeseen paternal timeline. Any advice would be greatly appreciated. Tx