r/downsyndrome

I'm looking for some information since it seems like I'm being left in limbo here. My genetic results came back high risk for t21 and I decided to get an amnio test which I'm waiting for right now. However, according to my scan my baby does not have any health concerns other than being a bit small (17th percentile). No soft markers or heart issues either. Very active as well during the scan. Does this mean that the baby will have less chance of health concerns? I am keeping my baby but I want to be prepared. We will have a follow up scan in a few weeks.

My son has fluid in both ears after being sick with RSV and getting an ear infection. ENT recommended that we get a hearing test done within the next month ( it has been two months since he was sick and he wants to wait one more month to give his ears a chance to drain naturally) and see if there’s any hearing loss. If there is, we would have tubes put in so that the fluid can drain properly. Can anyone tell me how the experience was if your child got ear tubes put in? Did they work? any info is appreciated. Thank you

We’re in such a tricky stage with my almost 6 year old who also has an ADHD diagnosis. He is pretty verbal, social and lovely! But he is extremely impulsive with very little sense of danger - eloping, throwing items, emotional regulation, etc etc.
I know 90% of his behavior is attention seeking, 10% sensory seeking. He is the oldest of 3, we have a 6 month old baby and my husband works full time. I’m doing my best to give him as much as attention as possible and teach him appropriate ways to gain attention, praise him when he does so. He’s in ABA, we’re currently working on starting OT again, waitlists are ridiculous. Has anyone had a child with this type of behavior who’s grown out of it as a teenager and/or adult? We literally can’t take our eyes off of him for he could hurt himself, his siblings or others. He’s such a gift, but it is exhausting. Praying this is part of toddlerhood/childhood.

Hi, this is my first post on the sub. Yesterday my daughter Consuelo was born, and as a father i'm as happy as i can be, being she the beautiful girl that she is.

She had some issues with breathing in the first seconds, but the doctors helped her and now she doesn't even need air support. However, the doctor told us that she is going to be in intensive care for the first month, because of her cardiac condition (which seems to be fine but needs monitoring) and to supervise that she can eat well.

I wanna know if other parents/siblings of DS kids have any advice on going through this phase of the care. I prepared with my partner for the early estimulation and healthcare in the house, so i would like to hear what others have to say in regards of being for my daughter in the hospital.

Also wanted to add that i'm from Chile, so advice that may seem obvious in other developed countries still works for me.

My husband’s job will be relocating us to Washington state next year. We will be in the Vancouver-ish area. By that time our son with DS will be about 16 months and I am wondering what services/recourses are like in Washington or even Portland since we will be in close proximity. I have already done a bit of research myself, but I’d love to hear anyone’s actual advice and info!

TRIGGER WARNINGS: Suicide and Death

My brother's group home administrator called me and stated that he's refuses to eat or drink and hasn't had much nutrition over the past week. I've visited and attempted to take him out somewhere to eat, offered him other foods. Nothing seems to work and he doesn't want to talk about anything/says nothing's wrong etc. He refuses to acknowledge that mom is no longer with us and that this is his life now.

He wants to go home and be with mom. I've told him that the condo and the old southern Virgina house are both empty and cannot be lived in. I've told him that mom never got better and she's not with us anymore. He will not accept that. He's got mom's ID and passport and medical cards in her old purse that he keeps with him at all times. He thinks people are trying to steal it.

I've told him that he needs to eat or he'll get sick.

I've tried giving options. I've tried asking. I've tried demanding.

The group home is on the verge of taking him to the ER and getting a psychiatric evaluation, which I believe will be traumatic for my brother. Ultimately, I do not believe he will eat or drink without a GI tube or IV fluids.

I currently have a meeting scheduled with his case manager, the group housing administrator, and anyone else that'll listen.

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Summarized Backstory:

My mother kicked me outta the house in 1993 when I was about 11 years old, keeping my brother who is one year younger than I am. When she retired, she moved away from Washington DC to rural southern Virginia where there are no services for the disabled. Hell, there aren't any services for anyone for that matter. I rarely saw her and almost never saw my brother after that.

For thirty years, she hand delivered food to his room daily and removed dirty dishes when he was done. He spent the entire day watching TV. He had zero skills as far as independent living is concerned. No laundry, no dishes, no cooking, nothing. Dresses in sweatpants and long johns when it's 90 degrees outside, has to be prompted to use the bathroom, shower, brush teeth, etc.

(March 2024) Two years ago she fell down the stairs and I got a call from emergency services. She had a spinal fracture and was quadriplegic.

I got my mother to an orthopedic surgeon and into rehab, meanwhile moved my brother into my house. I'm now in my 40s and have four kids, so it was chaotic. While my wife and I were at work and all the kids were at school, he fell down the stairs on multiple occasions and we found him in agony at the bottom on the stairs, having been there all day. This was obviously an unsafe housing situation for him.

(May 2024) After two months of recovery and rehab, my mother was discharged and confined to a powered wheelchair. I moved both my mother and brother up from southern Virginia to an elevator accessible condo that I bought for them.

Through 2024-2025, I paid private nurses to stay with my mother and brother in the condo while I worked during the daytime. I spent the night there. Eventually mom went on hospice care due to chronic neuropathy.

Mom never had power of attorney or guardianship over my brother and did not have any Medicare or Medicaid waivers for him. I had to navigate the process both from the beginning and blindly. I finally got a Medicaid "Family and Individual Support" waiver and got him into a day program at the beginning of June of 2025.

(4th of July 2025) TRIGGER WARNING - DO NOT READ THIS SECTION IF SQUEAMISH I took a night off to spend time with my wife and kids and do the fireworks thing. Mom asked my brother to bring a knife and a bowl of warm water. She used what little control/strength she had to hack at her wrist and submerge it in the warm water. She was unsuccessful. I cleaned up the bloodbath and immediately called the County Police and Adult Protective Services. I testified in front of a magistrate for a 72 hour psychiatric hold on my mother and reported the unsafe living conditions for my brother, as I could not continue to pay for the private nurses to come take care of everything. Mom died in the hospital at the end of July 2025.

These events seemed to light a fire under the county resources, as I finally got his Medicaid waiver changed to "Community Living" and got him into a group housing in August of 2025.

Meanwhile I've been driving back and forth 5 hours each way every weekend maintaining the house in southern Virginia and trying to sell it as well as working double and triple shifts covering the mortgage on mom's house, the condo, and my own household expenses. Mom's house and the condo have both been on the market at well under appraisal value with me taking a significant loss and I've had very little interested buyers in either. I have barely seen my wife and kids in a few months.

Fast forward to this week and we're at the section at the top.

I wrote an article about this last year and was wondering if there are any other parents interested in reading it and share your experience.

My daughter is 8, she's in second grade but that's just to say she's in school. Access to therapies is very limited and she hasn't had any in years. When she did, I was working only to pay for them and school, but I had to stop working 2 years ago to care for her and be in school as her teacher, since we can't afford one.

If this is hard you guys to understand, schools demand ea h child with learning disability or diagnosis needs to have a professional with them at all times, basically they just ho to school to "socialize"

I feel so worried about her future, as a teacher myself I do what I can at home to teach her, help her but it's very difficult. I'm worried about her future, if I can't even get her to feed herself how would she ever be independent. There are so many things she needs to work on and I can only do so much.

I can't afford everything she needs. I know people say all they need is love and support and trust me, she has plenty. We love her, cheer her, play, sing, dance with her. She's full of joy but when it comes to DO something ( school work, feeding, doing something on her own), she's relentless.

Sorry for the rant. I just wish I could give her what she needs in order to become independent

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Hi there,

I am looking after someone with down syndrome and potentially onset of dementia. This lovely person is in his 50s and non-verbal. We have attempted to get him to the tests, etc...but understandably he gets very agitated, nervous, and we end up not being able to do anything. There are so many pending tests we need to get done, but have not been able to. Just seeing if anyone has come across this and what methods/ approach worked for you.

Thank you kindly!

I’m a DSP at a home with 6 adults with a verity of developmental disabilities. I’ve only had difficulty working with one of them- a man in his 30s with down syndrome. I’m a smaller 19 year old girl so I don’t like pushing my luck with him. He’s mostly nonverbal but will say my name, hang out with me, give hugs, kiss the top of my head, and follow me around the house.

For whatever reason he suddenly decided to stop cooperating with me completely. One of his chores is to take his clothing protector to the laundry room and his dishes to the sink after breakfast. When I’m in charge of the dining he refuses to leave his chair and will occasionally throw his full cups of milk and juice onto the floor. He of course has to clean it himself afterwards but he doesn’t seem to care and continues the behavior.

When any of my coworkers ask him to get up while he’s refusing he gets up the first time they ask. So frustrating.

This morning while giving him a shower he refused to exit the shower. I dried him off and put on his shirt but he wouldn’t get out so I could put on his pants. We had to stand there until 1st shift got there and of course, the first time my coworker asked him to exit the shower he did.

He was shivering and his feet were turning purple!! Experiencing actual discomfort in order to show him just how stubborn he can be lol.

Any advice welcome. I’m very patient with him (maybe too patient?) and I do my best to reason with him. While he’s being stubborn it seems less angry/annoyed and more mischievous/ornery.

Parents siblings or friends of chromies how are their sleeping?

My son is 17 and over the past 1-1/2 years we have started to see aggressive behavior at home. He had been acting out at school for a few years prior, but not at home and not to the extent it is now. I assumed something was happening at school that he was reacting to.

Every now and then he gets mad about something (having to stop playing on his iPad to go into a rest area to use the bathroom, bed time, put his dishes in the sink, or something completely unknown). Not every time, but sometimes his response is to lash out. With us, it’s been pushing or hitting or throwing something at me). At school, he will kick over trash cans, knock stuff or lunches on the floor, or hit a teacher.

He is very verbal but can never explain why he’s mad or if someone did or said something to him. There was one incident at school that when the teacher was talking to him right after, he seemed to not even remember the incident.

Again, he’s very verbal, can do most things by himself, knows what he likes and doesn’t like, and decently capable of doing a lot of things.

I don’t know why he’s being aggressive (not something he’s seen in the home), and because he can never tell me why he’s upset, what happened, or who did something to him, I can’t determine the trigger. I’m not sure what the best course of action is. What type of therapy could address this? It it something with his diet? I may never know what is making him upset because his reactions are not consistent, I just need to know how to work with him to stop the aggressive behavior before it starts.

Notes:

-He doesn’t have a memory problem - he can remember stuff from years ago.

-He’s very verbal and although not always easy to understand, he can express very well when he does or doesn’t like or want something.

-I don’t believe he’s getting bullied.

-Other kids are not acting out like he is so he’s not copying behavior

-He was the sweetest little kid but around his teenage years he started getting more ”teenager-ish”.

I need help with this!

Considering a return to Eagle, ID from Camas, WA. Our youngest, age 3, has Down Syndrome & is in an amazing program here. However, our parents back in Idaho are aging and we feel a pull to return to Eagle (where we were born & raised).

My question is if the schools in Eagle have a good special needs program? Are the schools inclusive and loving towards those with special needs? Or how about the State of Idaho respite care program?

Thank you in advance & I appreciate your time helping us decide our next steps.

And my sincerest apologies if this an inappropriate post for this forum. Any kind redirection is welcomed.

Hi, I was hoping I could get some advice because my younger brother (5 years old) has recently gone back to his phase of pulling dangling anything like table cloths but mostly hair.

He has downs and is also autistic to preface. I want to see if there is any way to deter him from continuing to pull hair. My parents are trying their best with him but I can tell it's going at a rather slow pace.

My daughter is 10.5 months old. She still will not put weight on her legs when pulling up or standing assisted. The therapist have even noted that when pulling up her entire weight goes on her arms and upper body. She dowsnt crawl but told tjat isnt abnormal at this point but the weight bearing is a concern. We go back to neuro this upcoming week. Has anyone dealt with anything similar??

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.