r/downsyndrome

Hi all,

I'm new to this topic and I am interested seeing people's stories on this subreddit. I would like to ask some questions with genuine curiosity.

Did you get a Down syndrome diagnosis (or high risk of) during pregnancy rather than at birth? How did you decide what to do next? Do you have regrets or unexpected feelings later on? What was most helpful in navigating it?

I'm asking with no judgement at all, just interested to learn about different experiences.

Since hearing loss or auditory issues are common with down syndrome, sharing this information: On July 1, a new law started in Virginia for open captions (on-screen subtitles) in movie theaters. Theaters with five or more locations must offer limited, regular open caption screenings. Theaters with less than five must offer an open caption screening within eight days of getting a request.

(other places with similar laws: Hawaii, NYC, DC, MD, and WA)

Edit: we hope a reporter will see this and decide this new law is worth writing about. There has been no media coverage.

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My son is 3 , soon to be 4. He absolutely hates haircuts. We take him to a barber and he can only do so much before we have to end the session, we try fixing his hair at home but he just absolutely hates it. We are looking into taking him to a barber that deals with special needs, and also maybe taking him to OT and see if that will help him. It breaks my heart to see him get all flustered. He gets red, screams, cries, shakes, and I just want to cry. I didn’t expect haircuts to be so painful for him. This is so hard sometimes. If anyone has any tips or tricks please let me know. We allow him to watch his favorite show, Daniel tiger, listen to music, and give him breaks in between but he absolutely hates it

Hello! Going to spread some love today <3

So my younger brother has downs, he’s 18 and I’m 22F. When I was growing up a lot of the time I’d feel a bit pushed aside from both my parents, they split when I was five. It was most of the time all about my brother, that wasn’t to say that they neglected me, I just didn’t understand why he needed more attention than I did.

This came with a lot of resentment for my brother, especially in my teen years going into high school when I was getting more self sufficient and also much more hormonal. I was fighting and arguing with both of my parents quite often just in general and didn’t have the maturity to understand why I just could not connect with them that well.

My brother had a great relationship with both of my parents, specifically our dad, he absolutely loved him. Unfortunately my dad passed away when I was 17, and my brother regressed a bit after it happened. At his funeral, it was the first time I ever saw my brother cry over something as deeply painful as grief, and it honestly wrecked me, my mum, my friends, everyone that was there.

I grew up real quick after that, loss changes you, but I also realised that I hadn’t been a great person so far in my life. I sorted my shit out and started having a better relationship with my mum as well as my brother.

I realised how damn hard it is for my mum, as the sole parent to navigate life with a child who has special needs, why she gets so stressed and upset because there’s not a lot people there to support her. Having children is always going to be a lifelong commitment, but it’s entirely different when they need such deep care and support as a special needs person does. I’m building myself up to be the best sister ever to him when my mum does pass, because it’ll be me and my older brother taking care of him.

So all of that said, thank you to the parents of these wonderful beautiful souls, thank you for cherishing them despite the struggles and hard nights. You guys are loved and are badasses for doing what a lot of people wouldn’t be able to. I appreciate and love anyone who treats my little bro with the same respect and kindness as anyone else, especially more with my mum, who’s done the best job at raising him and has kept on going. So if anyone hasn’t said it to you guys lately, I will. Thank you, and I love and appreciate you <33

I’m hoping to hear from others for guidance and perspective.

I am 37 my wife is 39. My wife is 13 weeks and our baby was diagnosed with Trisomy 21. We are devastated. I told her we should TFMR but she does not know if she could go through with it. I also told her I will absolutely love the baby with all my heart and told her that I would never have any resentment towards her if we have the baby. I’m not scared of raising a child with a disability, I’m scared of caring for an adult with a disability. We have a healthy 3 year old, and I also do not want to put the burden on him of caring for a disabled sibling when we are gone.

As the father, I feel like I’m looking at the situation in a cold and calculated way. In my head, I want her to move on from this pregnancy so we can start planning for the next one. We have a healthy embryo we could transfer from a round of IVF (this baby with 
Trisomy 21 was conceived naturally).

However, I realize how selfish that is on my end. She will have to deal with the procedure and the physical and emotional toll to a much greater extent than me. 

Regardless what we do, I will support her decision. Im just hoping to hear from both people who decided to TFMR and also people who have children with 
Trisomy 21.

Thanks

Does anyone have any recommendations for a phone that's not too expensive for a Downs person she has a tablet so it doesn't need to be a smartphone it would need to have GPS text and call. A phone where she could not download apps on would be better for safety. She is amazing with technology but doesn't always understand the safety behind just downloading any app

Hi everyone.

Just had the call to say my baby is high risk on the NIPT and I’m feeling really overwhelmed.

I spose I’m just looking for some support and guidence on what life will look like supporting a child with Down syndrome.

It’s my first child, after years of infertility and failed IVF, and I’m completly stunned.

Any advice or reassurance welcome. My whole idea of what being a mum would look like had been flipped on its head.

So i have an uncle with downs syndrome, he is 47 and within the past year maybe 2 he has been developing these mood switches that have resulted in slapping, hitting, shoving, and this sort of oddness in him. Normally he will talk to the characters on the tv and smile and laugh but he is non-verbal so its more of a mutter but you can tell what he is talking to. But he will also randomly get into this state where he stops all of it (talking, looking at things, listening, etc) and will just stare off into space almost or put his hand over his mouth and thats when you dont want to get near him becuse it normally ends up in disaster. Im wondering what causes this in him because it pains to see him like this because he is the jollyest and happiest downs adult ive seen. An example for today is that he had a good day at work and was happy all day. Came home arround 4 and watched tv and talked to the characters and looked out the windows and stuff like that. At about 6 ish he was in the same spot but now he had his headphones all the way up and was just rambling about nothing to himself. So i go over to turn them down a bit and he just groans and shoos me away like normal and most of the time he keeps the headphones down but then he really got into his trance where he cranked his headphones again and stopped everything to sort of stare off into space and thats when a family member went over to turn his headphones down again and i could tell something was off because his hand was over his mouth and the facial expression on him he almost looked terrified. Thats when he whipped arround and whap right in the chest. After that we backed off and he sort of stayed in this trance for another 45 minutes doing stuff like putting sunglasses on and pulling his hood over his head until he snapped out of it and got up, said sorry a bunch, and went to bed. And the next morning he wakes up saying he is sorry over and over so its almost like he isnt in his right mind when he is in this state. Anyone have any idea what is happening because it pains me, it really does to see him like this

Last week, I picked up my neurotypical son (he does have ADHD) from a three-night overnight soccer camp, his first. When I picked him up, a mother was picking up her child, while also having her son with Down syndrome waiting. My guess is that he was eight or nine, he wore glasses, and seemed to be, well, bright and independent.

Is it naive to think a child with DS could attend an overnight camp? I'd like all kids, of all abilities, to have similar opportunities. This camp did have counselors, but the campers were staying in college dorms with a roommate -- largely by themselves. Are camps available for kids with special needs? Thanks.

What's been everyone's experience aging through car seats for your littles? My son with DS is only 18mo and is still in his infant Graco Click Connect rear facing seat, although he's starting to get a little big for it so we're considering getting an alternative. We have the Graco Extend2Fit for our 4.5yo daughter and that worked well so will probably get another of those. Are there any other models that you all have tried that work well for our kiddos as they age? In general what was your experience been in terms of continued harness/booster transitions as your kids get older? Did you find they required additional harness/booster support past when your typical kids needed it? This is something I haven't yet researched, and obviously it is incredibly dependent on the individual child and their abilities, but was still curious what experiences other families had with these transitions.

Edit: I should add, I definitely have "grass is greener" syndrome when I compare our US car-based culture with our European friends whose trams/public transit is phenomenal lol.

My niece has DS, and she talks to herself a lot, I mean a ton not just little conversations but long ones. She’s also really really mean. She can’t read or write her name either, she barely counts to 10 and doesn’t know her ABCs, is this normal? I’m a bit concerned because she’s 19, she’s not a baby anymore and as she gotten older things get worse. She’s also really sexual, as in she’s always thinking about it and calls every male her boyfriend.

I had a baby with down syndrome 2.5 months ago. I was devastated for the first month. Slowly I have felt myself change my thought process on it and accept it. He is so precious to us, so snuggly, always looking at us and giving the best smiles. He feels so personable already. The love I have for him has crowded out the sadness and I hardly feel sad anymore. Here is my question - will this change as he grows? I obviously know there will be hard moments and a lot of work. And I know each person with down syndrome will be different, but I am just wondering if there's a certain point when this feels significantly sadder of if my love for him will always make this feel manageable. I see a lot of posts on social media of people talking about how amazing their down syndrome baby is, but you don't see it near as much as they grow. Hope this makes sense.

We want to get into biking as a family, but our 10 year old (she's little, <50 lbs) is not developmentally able to bike on her own and I am looking for options. Obviously we could do a trailer, but are there some other interesting options out there for co-riding or... ?

thanks for the help!

My son is 22 with DS. He was doing great until about age 7 when he caught an auto immune infection which pretty much zapped his head clean and left him with tons of ticks… among other things he is stubborn as hell.
He’s been on meds for years and did get better but started regressing again about 3 yrs ago to the point we cant send him to adult day services.
Anyway… his main thing is his iPad and staying in his room. Thats where he is happy- tho I take him swimming 3-4 days a week which he loves.
So we live in the Cincinnati area and we get tornado emergencies a few times a year.
We can’t get him into the basement when the sirens sound… it’s maddening he won’t budge. He’s 300 lbs and strong as an ox.
Last week the sirens went off late and even tho he was awake he wouldn’t leave his room… I pleaded with him, threatened and begged…nothing works.
It’s so stressful.. this has been going on since last summer and we are at our wits end.
I was considering building him a shelter in his closet but I doubt he’d even get out of bed to get in there.
If he doesn’t want to do something it’s not happening.
He is under treatment for OCD now but 6 months in and the meds haven’t done a thing. So likely moving on and trying another diagnosis/treatment soon. There is a lot more to it but that’s the gist.
So- any ideas?
How can we get him to the basement??
I see “Weather Alert” on the tv and I start sweating.

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I noticed that the Down syndrome community doesn't have a flag unlike the ADHD and Autism communities respectively, so I decided to design one myself, my sister with Down syndrome really liked it so I thought I might share it with the world! Love, :)

According to the geneticist, baby has about a 90% chance of having Down Syndrome. So, I thought I'd say hello to the community. I'm sure I'll be around. :)

Hi. I want to make sure I am being respectful. I am working on a book. In it, there is a section that shows how only people with Down's syndrome can create the emotional cadence to learn this specific alien language, so he people working with these aliens are all people with down's syndrome.

For the purposes of reality, I want to realistically depict how a bunch of people with Down's syndrome living and working together might interact, hobbies, activities, etc. Everyone I know with Down's syndrome has not spent a lot of time around other people with that condition (they were all mainstreamed.) If anyone here has any tiny bit of insight, I woudl love to read it.

My two months daughter doesn't make any sound but a very short ( eeeh sound) instead of crying.

What worries me more is that she doesn't react to any sound. Wecal her, make noise and different sounds, but she never moves or move her eyes.

Is this normal? I feel that something is wrong with her hearing.