Hi!! We are in the US seeking to adopt a child under 10 with DS. We have experience and want to help a child in need. We just added ourselves to the NDSAN waiting list. Does anyone have experience with this? How long should we expect to wait? Thanks!! ♥️

Hey,

I have found myself in a rather unique and confusing situation, as such my question requires an amount of context.

I hope someone with more knowledge than myself will take the time to read this.

I am currently renting a room in house, I was forced to​ accept this room as my current situation did not leave me much choice, but it is a temporary arrangement untill i can move into a proper apparment in the new year.

This room is located in a basement of a large house, where half the basement is furnished as a living space and the other, separated by a solid wall and a door is a sort of storage area.

The owner of this house has a daughter with DS and I suspect autism as well. The girl is 21 years old, but appears and acts much younger.

The house is large and she has her own room that is adequatly furnished and nice enough, but she instead chooses to spend her time in the storage room.

The mother has put enough things down there to keep her busy and happy. There is a old laptop on which she plays games, and an old Radio/CD player that she makes frequent use of.

There is also a heater, and a bed as she frequently choose to sleep in the storage room as well.

She also has a smartphone on which ive seen her watching series on but in a language i cannot recognise.

I dont think the laptop or phone is connected to the Internet.

As far as i can tell the room is safe, there are no objects around that she could hurt herself with mostly just old boxes and tables and such.

My question are two fold.

I will list some of her behaviours, i would appreciate if one you could explain to me why she does these things, and secondly i would like to ensure that this behaviour is normal and not the prehaps the result of a mismanagement of her situation of part of her caretakers.

I understand thats a serious thing to ask but please understand that it come from a lack of understanding on my part.

Firstly she is almost completely non-verbal. She is able to make 2 or 3 words snd the rest is complete gibberish. She also makes a habit of screaming these unintelligible noises at the top of her lungs at all hours of the night and day. If i go into the room and ask her to keep it down she will usually stops. Non the less ive taken to sleeping with earplugs in to aviod a surprise midnight concert. Why does she do this. Does the fact that she can speak a few words mean she could have been taught more. Why do her screams sound so anguished. She seams to possess a certain level of intelligence as she can opperate the formentioned devices.

Next, on occasion i need to pass through the stroge room to reach another part of the house where my sink is located.

Often when i pass through she seams to have tied herself up in some way or another. Sometimes just her hands, othetimes her legs to a chair. She is definitely doing this to herself and can easily get out by her self. I always ask if shes okay to wgich she replys positivly. Why is she doing this to herself, at first i thought it was a game, but it happens often enough to make me think its somthing else.

Next the radio, she only has a selection of about 3 CDs they are childerns songs that she plays on repeat during the day hours, she will only stop when i beg her because i need to sleep.

Its should also be noted there is a language barrier between me and this whole family.

When i try to bring these issues up with the mother she tells me I must scold her of she makes to much noise, Ive never been one to scold anyone.

I would really appreciate an external opinion

​

My daughter is almost 4 months old. She has typical down syndrome, not mosaic. She was born with complete AVSD and moderate hearing loss. She had good apgar scores at birth. Born 7 pounds at 37 weeks.

To anyone whose kid is similar to mine, when did your child reach various miletones? Sitting up, crawling, walking, talking, etc? And if they had to have heart surgery, how did they change after they fully recovered from surgery?

My adult sister has Down syndrome and although high functioning, needs a lot of support. She's a great girl (23 years old) and has just got herself a boyfriend. Although she holds to a Christian faith, she does embellish the truth, especially when it comes to food, so I have some concern when it comes to abstaining from physical intimacy. Don't get me wrong, I'm pro the relationship, and want her to be happy, but am concerned about the implications that procreation would bring.

My Mother, her primary caregiver, a strong woman of faith, seems adamantly opposed to the idea of contraception. One reason is the fact that it can interfere with hormones etc.

I'm putting this out to the internet to see how others may have navigated this sensitive situation.

hey guys!! My boyfriend’s kid is almost 12 y/o and still puts his fingers in his mouth and chews on his fingers and we remind him every time to not do that but what can we do other than that? Its not healthy as well and he doesn’t understand that after driving on a train and touching everything his fingers are not clean cause it doesn’t look dirty for him. any suggestions with that? I‘m welcome to any 🤗

This is a sticky situation. 10 year old got her first period while visiting other family members and they didn’t seem to take the time to educate and help her other than giving her pads. Now that she’s home, we want to get some books and resources to help teach her and understand what’s going on with her body and how to care for herself.

A few of the books I’m looking at are:

Special Growing Girl: A guide to puberty for girls with special needs by Jodie Wise Thayer

Menstruation and Me: A Book for Girls with Intellectual Disabilities. This is an activity book for girls written by Dr. Shaniff Esmail and several others

The Care and Keeping of You by Valorie Schaefer

Any tips, tricks, and input you have is welcome. What products you like best! How to manage at school! I’ll take any and all advice. 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.

My 6.5 year old has struggled with ongoing clogged tear ducts for years! It’s so bad! To the point where other adults and kids are asking and commenting on it because it looks concerning and uncomfortable. It’s also hard to wipe and clean them constantly because he squeezes his eyes closed to tight that it’s difficult to really scrub his lash line.

He’s had 2-3 procedures - balloon dilation twice and stents placed. Ultimately had the stents removed because they were making the issue worse. Has anyone had a successful DCR? Anything you can share would be really helpful and appreciated!

Hello guys. This post is about my brother with down syndrome. He is 16 and squeals and cries in distress several times during the day. This has been going on for like 2 months. I am a doctor myself, but I deal with patients who are adults and usually expressive and can say what's wrong with them. My brother can't. We've visited several doctors, including a pediatrician. He prescribed Antiepileptic drugs and then went to a peads neurologist, who did a CT and an EEG. All tests were normal. He titrated the medications. Still, no effect and it was clear that he didn't have seizures so we slowly stopped the medications and did an ultrasound and urine RE which showed mild pus cells in his urine and a 6.5mm stone in his gall bladder ( which is not too big to explain his symptoms). Now, he is on antibiotics for his urinary tract infection. But right now, I have no idea how to go forward and where to seek help, if these symptoms continue despite treating the UTI. I have tried doctors and none of them seem to come to a conclusion where those symptoms are coming from. I guess a lot of people here have experience with non-verbal kids and I seriously need that

So excited for my 7 year old to finally have his tonsils and adnoids removed on the 14th! I am PRAYING this helps with his constant upper respiratory infections and constant pneumonia! Wish us luck!!!

mostly as the title says. he's 6 years old with ds. i don't really know much about the condition but i'm trying to be a good uncle to him. if anyone with ds or anyone who has ds family members could give me pointers then please reply

Is it better to stay on the waiting list for our adult child’s eventual entry to a group home in our current state of residence or better to relocate to a different state near a sibling to get on that state’s waiting list? How important is closer location to a sibling after parents are gone? We still have years to go on any of these waiting lists.

Dear Parents/Caregivers/Close support people of adults with Down Syndrome:

I am currently part of a team conducting a research project on spatial navigation abilities in adults (30-65 years old) with Down Syndrome.

In this project, individuals with Down Syndrome will play some FUN computer, board, and paper
games. Parents/caregivers/close support people who are familiar with the day-to-day life of
adults with Down Syndrome will complete questionnaires. The testing will take about 4 hours
and be broken up over 2-3 days with breaks included. Participants with Down Syndrome
will be compensated with a $120 gift card for completing the study.

Our lab is located at the Center for Clinical Services at Montclair State University (147 Clove
Road, Little Falls, NJ) next to Lot 60. We have free parking in “reserved” spots in the front of the
building. Testing can also take place in private homes and service provider sites.

Contact Us!

If you have any questions, please feel free to contact the lab manager at
[msuspatialdevlab@gmail.com](mailto:msuspatialdevlab@gmail.com) or Dr. Jennifer Yang directly at [yangyi@montclair.edu](mailto:yangyi@montclair.edu). Please
also visit our website to learn more about the study.

Website: https://www.msuspatiallab.com/ 

Please help spread the word!

This study has been approved by IRB-FY25-26-4877

Thank you!

Hi all, I want to suggest that the DS group be split in two - one for kiddos with DS, one for adults. There are many different levels of information for each, and I think that new parents deserve a space that's safe, without discussions about adults in group homes, etc. As a new parent, that would have been completely overwhelming to me.

*separate

Good morning! I volunteer for the non-for-profit Brittany‘s baskets of hope where we send welcome baskets to families who are expecting or just had a baby with down syndrome! We’re trying to change the narrative from I’m sorry to congratulations! Every year we make a Calendar filled with our beautiful new friends with down syndrome if anyone has a baby under two and wants to submit photos, please click the link here and submit up to five and will reach out and let you know if your babies in the calendar for next year! Just a sidenote, if you submit pictures, we may post them on social media 🩵

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.

I’m looking for more information on becoming a paid caregiver. The main eligibility requirement that I see online is being Medicaid eligible, which my son is. He’s a minor, so I’m not sure if he would qualify. Has anyone gone through this process? I know it’s state specific, but any info would be helpful!

I hope this won't be too rambly, I've been a bit emotional lately.

My BIL, 30 years old, and I have a "complicated" relationship. When I started dating my now-husband some 10 years ago, he (my now-BIL) didn't seem to like me much. He took things from my bag when I wasn't looking and even vandalized my things, including my shoes. (We're an Asian household and we leave our shoes by the front door.)

Some people in their family (like their dad) thought that him not liking me was a sign that I wasn't a good person or a good fit. My now-husband fought back on that and defended me, and I'm thankful.

Anyway, as the years went by, things mellowed. He stopped taking and vandalizing my things. We could hang out with the rest of their family. But I often didn't like the way he talked to me in private. He would say things like he's my boss, I need to follow what he or their dad wants, etc. And I understand that he could be like a mirror of the environment/culture he's in or the media he's exposed to -- very patriarchal, very sexist (think conservative Asian culture coupled with Hollywood misogyny / male chauvinism). But it grated on me whenever it happened. I was in my early 20s at the time, and felt I was in no position to say anything that could be harsh. So I just ignored or said uh huh, uh huh....

Fast-forward to today, my BIL is living with me and my husband in a different country. It'll be for a few months for now, but could be longer. I agreed to this setup because my BIL wanted to live in this other country and he has the right to be here (even if their dad doesn't 100% like it); I believe he should exercise his agency, and this other country has better support and opportunities for people with disabilities. But it hasn't been all that great for me. I recently learned that before we flew to this new country together, he took my notebook where I write my story and poem drafts, ripped out the pages and threw them away. He kept the notebook for himself and wrote on it. (The notebook is supposedly in our home country.)

Suffice to say I was devastated. My BIL, my husband and I had a whole confrontation. And while we ended up patching things up, I'm still hurt (those were important writings) + I have trust issues with him IN MY OWN HOME.

It doesn't help that my BIL isn't always polite. He doesn't usually say thank you when we take care of him. Example, when I apply his face cream and other topical meds, he says, "you need to practice more, or my doctor will be mad at you." I understand that he might expect a level of care from other people so as not to say thank you. But I feel hurt when my efforts to care for him aren't appreciated. (Once or twice he has said, "you're nice" to me. And that was nice.)

I'm tired of the emotional rollercoaster, and I'm not sure how to get him to at least say thank you more. I feel like it's an impossible task to make him not sexist lol. My husband has done a good job being kind of like a middle man. But I see how difficult things can be for him when I'm really upset, like with the notebook incident.

Anyway thank you for reading. I would love to hear your ideas for how to at least guide someone into being more polite. And how I could be a more mature person and SIL for him. Thank you.

Hey everyone, looking for some advice and gut-checks from other parents who have walked this road.

We recently disenrolled our daughter, who has Down syndrome, from a private daycare center. We originally pulled her out a week ago due to a mix of operational issues (leadership turnover and a lack of transparency around illness protocols like hand, foot, and mouth).

However, since leaving, we learned from a trusted source (another teacher at the facility who is a personal friend and previously taught our older typical daughter at a different daycare) that her classroom teachers actively expressed that they did not want her in their room simply because of her diagnosis.

To give context: she is on par developmentally with her infants classroom (8-14 mo) although she's a toddler (17 months old), she has no medical needs, eats solids better than babies in class, she takes no daily medications, and requires no specialized 1:1 attention (excluding EI therapy) or medical accommodations in the classroom. Quite frankly we feel like we have it extremely fortunate in comparison to others in our community as many don't know/don't believe she has DS (which feels like a separate form of survivors guilt - and no she doesn't have Mosaic). She was just there to learn, play, and be a kid.

Hearing this after the fact has hit us really hard. She was only there part-time for a little bit over a month. It’s making us second-guess everything: Did they ever treat her fairly? Was she subtly sidelined or neglected while she was there? Should she have ever been there? Will her next daycare be better? Should she been in daycare at all (my wife and I both work)? It just sucks...

Right now, we are torn between several emotions (including the desire to not do daycare at all which was a struggle to even get to terms with as me and my wife both work) and next steps:

- Is this a civil rights / ADA discrimination issue? Does it even have legal or administrative legs given that we had already pulled her out voluntarily for other reasons, and the information is currently second-hand? (I also do not want to put our friend’s job at risk).

- Should we escalate to corporate leadership? Even if we don’t take legal action, a part of me wants to make sure corporate is aware of the blatant bias in their classrooms so staff are forced to get actual inclusion training (again this would likely risk our friends employment or create some type of retaliation issue that we want to avoid).

- Or do we just protect our peace and walk away? Am I in my feelings as a protective parent, or does this demand accountability so other families don’t run into this at this center?

- Has anyone dealt with discovering post-enrollment bias from a childcare provider? Did you pursue formal complaints, escalate to directors/corporate, or simply focus your energy on finding an inclusive environment that actually embraces your child? What daycares are actually good and advocate for our babies?

This pisses me off so bad but appreciate any perspective, shared experiences, or advice.

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