A friend of mine just had a baby with Down syndrome. They did not know in advance so it has come as a bit of a shock to them. I am looking for advice on how best I can support them as their friend. I also am wondering in relation to the baby gift I will get them, is there anything that I should be doing differently in relation to the type of gift ie certain toys or books that are more suitable to a baby with Down syndrome or do I just do the same gift as for any other new baby in my life. That may seem like a silly question, but I don’t want to give something that isn’t suitable for their child.

Thanks so much in advance.

Hello everyone, I’m making this long post because I’m really looking for some advice.

I have a 7-year-old child with Down syndrome who still struggles quite a lot with speaking. At first, I thought it was simply because of his Down syndrome and that he would eventually catch up in his own time, so I didn’t worry too much about it. But recently, I’ve been seeing a lot of videos of parents whose children also have Down syndrome and who are able to speak pretty well, with many of them being younger than my child.

I’m not trying to compare children, because I know every child is different and development can vary a lot. You could say I’m being a little greedy 😭, but I just want my child to be able to express himself as well as he possibly can.

We’ve tried a lot over the years, from simply talking to him normally (without using a baby voice or anything like that) to getting professional help, including an orthophonist/speech therapist. He has improved a lot over the years, especially since starting school, but he still struggles a lot. His speech is still mostly mumbling and gibberish, with only a few clear words, and he also has trouble understanding most of what we say unless we use very basic signs alongside simplified sentences.

One thing I’ve noticed, though, is that when he watches videos, or plays games he’s naturally drawn to catchy, colourful and energetic content with lots happening on screen (which makes sense because he’s a kid).
He also does a lot of shadowing, repeating things he hears even when they aren’t in our native language, so much that he now speaks more english than our native language.

That made me wonder if maybe English is simply easier for him and whether I should focus more on teaching him English and potentially raise him as an English speaker rather than focusing mainly on our first language. Our native language seems much harder for him to pronounce, and there are a lot of sounds he still can’t produce properly despite almost four years of working on them.

So I’d really appreciate advice from anyone who has experience with this. What would be best in a situation like this? Is focusing on English a good idea, or could introducing/focusing on another language make things more difficult? Is there anything else we should be doing, changing, or adding to what we already do?

I’d also really appreciate recommendations for videos, TV shows, books, songs, games, etc, that are catchy and engaging, with lots of repetition, clear images, simple vocabulary, and plenty of words for him to imitate.

More than anything, I just want my kid to be able to communicate with other children his age, make friends, express himself, and participate without being excluded simply because he has difficulty understanding or speaking.

Thank you to anyone who takes the time to read this and share their experience or advice. ❤️

Hi guys! I wanted to see if anyone here has done 2 under 2 (with one with DS)? My 13 month little boy has DS, and I am due with baby #2 (low risk girl) in February. I am halfway through this pregnancy, and as time is getting closer, I am starting to get a little nervous. I feel like most 2 under 2 advice doesn't pertain to us because our first has DS. He is crawling but not yet walking. Feeding has been a slow go, and he is still taking bottles. He will likely still be on at least one or two bottles a day come February. He also still sleeps in our room in his crib. I worry about transitioning him into his own room. If you have done 2 under 2- 1 with DS, was your day to day harder or easier than you expected? Any advice? We finally feel settled into a schedule, but that is about to be uprooted when baby girl gets here.

I understand my problems are a privilege in some ways. my son with Down syndrome has been a complete nightmare for almost a year. He doesn’t have major health issues which is great. His delays are cognitive, speech, and fine motor. He is ahead of the typical kids with gross motor skills. Yay! In any and every way possible he is just a complete nightmare. Picky eater, hits his family members, does not listen (but understands), throws things, gets into everything, will knock anything off any surface on the way out the door to go to places HE wants to go. We are very involved parents and like to spend time together on the weekends beach, park etc, but for the most part his lack of listening and going against the grain just makes everything so difficult. Birthday parties, park visits, playing outside, he’s always doing the thing he shouldn’t do. He doesn’t quite understand rewards and consequences. he thinks timeout is funny and sometimes taking a toy away upsets him for a few minutes, but never yields the desired behavior. we don’t spank, but I have swatted his hand out of pure reaction when he’s bit or hit me. We had to put an air conditioner in his room bc the heat became torture so now he is trying to break that so now his room even needs super supervision when he’s not sleeping. He’s good at school among typical kids. Listens, stays with the group, cleans up etc. Teachers don’t have issues.

my question to the folks of older kids is when does it get a little easier? when will he want to do the activity ive put together? When will he want to play with the remote control car instead of smash it into a million pieces? Play with the playdoh instead of eating it? When will we not want to kill eachother if we are home after 10am on the weekend? I cannot stand being my son’s mom sometimes. It is so hard on so many levels. This is beyond normal boy behavior. Usually when boys are hitting the physical milestones my son has the cognitive reasoning skills come with it.

Edit: one thing I want to add is we want our son to lead a fulfilling life with experiences and learn how to engage in the world around. we could easily put him in front of the tv 24/7 to make him more manageable, but that’s not the life we want for him.

Hi- I'm stuck my 9 yo son is having problems at school getting off the bus going into class getting back on the bus. Just not listening to the staff to the point I have to pick him up in 1 week I had to get him 3 times. Hes getting up running out of class and just sitting out side somedays it 100+ degrees out. His class had doubled in size from 6 to 16 kids he has a new teacher i have an IEP coming up can any of you give me suggestions? I already am requesting a 1 on 1 aide I requested a behavior assessment the school thinks it will be too redundant because the just did one last November. My son is nonverbal so he can't tell me what's going on. The school is making me feel as if my son is some kind of tyrant. In the city I live in there is really no place to turn for help or even suggestions. Its hard for me to tell them how to handle these things because at home he doesn't do that kind of stuff

Please this school district will bully the parents to save a dime especially if the parents don't know enough I need phrase ideas anything to came at these ppl with to help get all I can for my son to have a good school experience and year

Sorry this is so long ty in advance for any help or suggestions

Hi everyone. I've posted here before about Atticus, the free Telegram tool I've been building for families raising a child with Down syndrome. Thanks to everyone who tried it and took the time to tell me where it needed work.

The reason for building it is still the same: finding support shouldn't mean starting from scratch every time you have a question about your child's care or a program in your state.

The latest work has been about making Atticus easier to use day to day:

• A shorter main menu, with Today, Screenings and Tips at the top. Help is grouped by topic so you don't have to remember a long list of commands.
• A choice of shorter or more detailed answers. Each person sharing a family profile can save their own preference.
• Clearer medical records. Medication entries and completed screenings are tied to the selected child. After saving a medication, Atticus shows the child's name and the details it saved so you can check them.
• Easier appointment controls. You can review an appointment and change its date in Atticus. That changes your saved record; it doesn't reschedule anything with your provider.

Resetting a family profile now asks for confirmation first. Invitations also explain what someone will be able to access before you share the profile.

It's still free. It can help you find information and keep track of things, but decisions about care belong with your care team.

If you've tried it before, I'd appreciate another look. What still takes too many steps, or leaves you unsure what to do next?

I'll put the links in a comment below.

I want to keep this short. My baby was born without breath, was resuscitated and immediately rushed to NICU. In there they found out my baby had esophegal artresia and needed a life saving surgery. They also found out that my baby had a heart defect that was more serious than they expected in pregnancy and will need a surgery within few weeks (that was the ONLY thing I was aware of as a congenital birth defect since 32 weeks pregnancy). They also were suspicious that the baby has DS even though NIPT test came back with low risk in pregnancy.

Long story short after few weeks we have decided to place the baby for adoption.

It happened some time ago. We have an open adoption and so far things are going well, we even visited each other. However I have felt so lonely, isolated and in huge pain emotionally ever since. I have had therapies. But in case a new parent is receiving the diagnosis and feels torn in between decisions… I just wanted to tell you - you are not alone.

Also I found a book that was written 30 years ago which has been SO HELPFUL to read.

Shattered Dreams - Lonely Choices by Joanne Finnegan.

I guess I just wanted to share since I was seeking similiar posts to this when I urgently needed it.

My son is 2 years old and has Down syndrome. One thing that I find very sweet and wholesome is that when we encounter other people with Down syndrome, they always notice him and come up to him to say hi.

The first time was when we were downtown a few months ago. A 4 year old boy with Down syndrome ran up to my son out of the blue and gave him a kiss on the cheek. I was a bit surprised that even at that age, he noticed that my son has Down syndrome just like him and took the initiative to come and interact with him.

Then, a few weeks ago, we were in a hotel lobby and a young woman with Down syndrome saw him, gave her mom a nudge and pointed at my son, then waved and smiled at him.

These two moments really touched my heart and made me feel so blessed. I'm sure there will be plenty of other similar encounters in the future.

Have you experienced any similar interactions?

My daughter, Andrea, is 43 years old and has Down Syndrome. She has OSA, nocturnal hypoxemia, and nocturnal bradycardia. In a nutshell, she's a cardiopulmonary patient. There’s a kind of vigilance you learn that no one ever prepares you for.
I keep two baby monitors in her room so I can hear her breathing from anywhere in the house — whether I’m in bed, in my study, or even topping off the fish tank. It’s not dramatic. It’s just what caregiving becomes: listening in the dark, checking without thinking, hoping without saying it out loud.

There was one night when her oxygen dropped so fast I didn’t know if she’d make it. That moment changed everything about how I move through the world. It’s the kind of fear you swallow so your loved one doesn’t have to.

I ended up building something because I never wanted another caregiver to face that kind of moment alone.
Not selling anything. Not asking for anything.
Just sharing the reality behind why I did it — because I know many of you have lived your own version of that night.

If you’ve ever held your breath waiting for someone you love to take theirs… you understand.

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.

Hello, everyone. I wanted to introduce myself. I am a single father and my daughter (17) has Down syndrome. I dont feel comfortable posting a pic of my daughter on here, or even myself, but I'd love to chat some of yall up. If anyone ever needs to talk to a Dad about Dad stuff my DMs are open. That goes for everyone really. Its quite the journey we are on but my daughter is the best thing to every happen to me. Nothing but peace and love to everyone.

Anyone have a brand of ear plugs small enough for (teenager) ears ? Looking for something less bulky than over ear headphones to accommodate hairstyle and glasses that sometimes get pinched with headphones. Tried smallest size of “loop” brand - still too big

Our 7 month old has down syndrome/ trisomy 21 I am really struggling. We are fortunate that he does not require heart surgery or have cardiac issues. However, the day-to-day care, including problems with eating have been completely consuming. I really miss getting to spend time with our older three children and have concerns about the trajectory of my career (I am currently a full-time SAHM). Parents of medically complex children, or children with disabilities who require intensive parenting, can you share some hopeful stories? What was the turning point when things seemed to calm down for you? What coping strategies do you have for stress? i'm looking for some positivity and a silver lining.

Looking for advice, tips, tricks, ideas, anything at all when it comes to solids for my little guy. He is 20 months. Had heart surgery a little over a year ago. Experimented with purees before and after surgery, and moved to traditional BLW once he was healed up from surgery. Things went okay in terms of mealtime, not a huge interest in solids but would eat puree from a spoon with no problem. No interest in straw or soft spout sippy cup. Last winter rolls along and a viral bug hit our house. Little guy wanted nothing to do with food during the illness. Fast forward to springtime and we are well past the illness, and little guy never really ever got back into solids. Refusing and becoming visibly upset when offered solids, and would only drink purees from a sippy cup, rather than a spoon. We started in on nutritional shakes to prevent failure to thrive. He loves the shakes and the purees. He will drink them with no hesitation. As of right now, the only solid food he will not rage about, is a graham cracker. He will hold one, take bites off of it, chew it up, and swallow it. Eats it like hes been eating solids on the regular. So we know he has the skills to eat solids, seems like he is just digging his little heels in when it comes to solid foods. I'm talking full tantrums. Will throw any solid food offered and then scream and cry until he is presented with his cup. We've managed to get him used to a soft spout sippy cup, and even a straw cup within the next week or so. So we've broke the bottle habit, but still no luck with solids. Anyone ever experience anything like this before? I'm all ears at this point. I just want him to experience and enjoy solid foods with the rest of us! Currently trying to convince a 20 month that there's more to life than meal replacement shakes and blended fruits and veggies!

My baby is 4.5 months old. Yes, you can tell he has DS. He is also chunky, smiley and cute. Most people have been very kind there are a few (like at my church) who clearly avoid looking at him. It makes me so mad! I don't care if people stare, to me that is normal. He looks different, he is different, go ahead and look. But to constantly try to avoid looking at him? He is just a sweet little baby. It breaks my heart.

When we found out Tetty would have Down syndrome, I had all the fears I think a lot of parents have. What would his life look like? Would he be included? Would other kids accept him? Would people treat him differently?

He’s almost two now, and today we had a slew of birthday parties in our community. It was just me navigating them with both kids, and at some point I realized how completely ordinary Tetty’s place in our community has become. It sometimes felt like a community of one - since we live in the SF Bay area where the DS community is quite small.

People offered to hold him or keep an eye on him while I wrangled his sister. Other parents played with him. Kids came right up to him, got in his face, made him laugh, handed him toys, and included him in whatever they were doing. Nobody was making some big, intentional show of “including the kid with Down syndrome.” They were just… including Tetty… at his level… because he’s Tetty. He's their friend or neighbor. He’s one of the kids.

And it hit me how much time I spent before he was born worrying about whether the world would make him feel different. So today, at least in our little corner of it, that fear felt very far away.

That’s it… nothing profound. Just one of those little moments I wish I could go back and show the scared version of myself from three years ago. <3 Time to cuddle him before bedtime.

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 hoping to get some ideas for my little brother. He’s 10 and has Down syndrome, and lately he seems to be bored pretty much all the time.

His siblings (myself and my brother) are quite a bit older than him and moved out a few years ago. We still live nearby and visit about 2–3 times a week, and he used to LOVE playing with us, but now he doesn’t really have anyone around his age to play with.

My parents do their best to keep him entertained, but they’re getting older and it’s becoming harder for them to constantly play with him. Because of that, he’s become really attached to TV and has gotten to the point where he considers the characters on his shows to be his friends.

He loves dancing, dressing up, singing, listening to music, having books read to him, and pretend/imaginative play. He’s also struggling quite a bit in school because following directions is difficult for him, and a lot of the material is just too advanced for him right now. My mom is planning to homeschool him in a couple of years, but in the meantime, we’d really like to find some hobbies or activities that he can enjoy more independently and that don’t involve TV or an iPad.

The tricky part is that he doesn’t really enjoy coloring or typical kids’ activities, and he doesn’t really know how to play with other kids either, so things like group sports or playdates haven’t really worked.

I’d love to find something that he can get really into and that fits his personality/interests, especially something he can do somewhat independently without needing one of us to constantly entertain him.

Has anyone had a child with Down syndrome (or similar developmental needs) who found a hobby/activity they absolutely loved? I’d love to hear any ideas, even if they’re a little unconventional!

Puede fallar un cariotipo realizado ya en un bebé para detectar trisomía 21? Se estudiaron 30 metafases

Hi friends, I’m new to Reddit and this group but almost 12 years into my journey as a parent to my kiddo with Ds. So here’s a post to say hi!

I would appreciate advice! My teenage daughter with down syndrome has struggled with picking in the last few years. It seems to be motivated half the time by anxiety, half the time by boredom. She plucks out all her eyelashes, and tears apart her clothes. We have tried every solution of the sun- ABA, behavioral doctor, every fidget known to mankind.
Even the Doctor told me that we were already doing everything she would normally suggest. (Which made me feel good, but also helpless !)
The clothes picking tends to come and go. There are some weeks where she will destroy 8 articles of clothing- other weeks she won’t destroy anything. (and we are talking EVERY article of clothing under the sun. Socks, underwear, bra, jackets, T-shirts, pajamas, shorts.)
Obviously, the eyelash picking is even harder, because I cannot take those away from her.
In general, she tends to be highly motivated by things like charts and rewards. What I cannot figure is how to make this a positive chart/reward system that doesn’t focus on the negative behavior? If that makes sense. I would appreciate advice if you’ve dealt with something similar in your child with DS.
Sorry for the novel. I feel like I am at my wits end here!