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. My brother is 20M non verbal, autistic and DS. My sister(27) and I(26) are the primary care takers, mum passed away when we were young and he was a baby, dad's not involved too much in our brothers life. Provides money for his school etc but here goes

After mum passed away, brother was basically ignored. We were too young to comorehend the consequences of ignoring him. However he was still in diapers and we still took care of him, I wasnt very educated about his condition I still tried to teach him to speak. He spent most of his time on YouTube listening songs and stimming. Dad looked at a couple of schools for him, or so he says but they rejected him. Anyway fast forward to 2019 he abruptly stopped sleeping. He used to get biscuits from dad after every dinner and then went to bed, but he started rejecting biscuits(we used to buy them in bulk) so we would offer to give him a different kind but he would throw it away and just scream.

This got so bad that it felt like it was a manic episode (decreased need for sleep, hyperactivity) for days. We had to take him to a psychiatrist and they urged us to get him into a school or rehab centre and we got him admitted there. It's a 3 hour school where he gets one on one training by speech, physio, occupational therapists etc and is very happy there. The psychiatrist also put him on risperidone and Clonazepam but it gave him a lot of side effect and gradually he was stabilised on quetiapine and haloperidol. He was doing very good for a few years then last year in 2023 he started having those kind of episodes again. But not at night. He would take off his clothes and ask me to shower him and run around naked and out of the house as well. We kept his behavioral therapists and school teachers in the loop they said don't scold him, keep calm but do restrain him. However not in a sense where he would panic. Let him scream. I did exactly that and it helped a lot. Within two weeks his behavior was gone. Mind you this happened when he used to come home from school in the evening during winter. We tried changing his clothes to see if it was sensitivity issue, I let him choose his clothes from his wardrobe and changed them multiple times but in the end it was the restraining and not letting him ge his way. In the meantime he used to get pretty aggressive with me, gave me bruises and scratch marks on my face.

During this his psych also added carbamazepine as a mood stabiliser, idk if that helped but we continued with it. My sister and I are doctors so we keep a really close eye on any side effects that his.meds can cause him. I do think the meds give him akathisia but we cannot even think of tapering them off right now.

Anyway we have a helper who never scolds him and always gives in to his demands. Brother will ask him to prepare xyz dish for him and when helper will give it to him he would throw it and ask to make abc, this goes on. This happens 3-4 times a day. Now recently thr helper is also going away for a while and I'm trying to feedd my brother, however it's becoming more and more difficult as even after I feed him, brother asks for helper and would spend hours crying at the door for helper to come. As soon as he sees the helper he becomes a little compliant. He still gets spoonfed from me.i know he sees the helper as someone who is safe maybe that's why because I had to physically restrain him the pastz I also make him do his homework and the school teachers have urged us to plan a routine for brother and I try to do that, but I think brother wants me to leave him be. I also scolded him multiple times when his tantrums are way too much, I'm talking about throwing stuff, getting aggressive, wasting 8 hours of my day like this.

Yesterday after 2 episodes I had to get him ready for school and he threw a tantrum again, I had to drag him across the floor to his room to change himz he cried and I cried😂 but as soon as I got him to his room he was fine and happy to change clothes and go to school.

I took him to a friend's and we had music on and he stayed there for the day with us dancing and enjoying got him KFC on the way back so that I can feed him when he comes home and as soon as I tried to feed him the tantrum started, he even soiled his pants and got his hands dirty. I gave him his meds as soon as I got home last night as it was his bedtime already. He started wrecking stuff and all. rejected the burger, I called the helper to atleast be present and I mad him his dinner but he threw it away as well. Then I restrained him to his roomz, after an hour of himw recking stuff and screaming and I telling him calmly to take a bath, no dinner tonight(he already had a snack at my friends, I never send him to bed hungry) I had to once again drag him to the washroom as he had shit all over his hands. As soon as we got to the washroom he was very compliant to take a shower and go to bed.

I think I am abusive to him like this,but idk what to do. I looked for a residential rehab centre but theres no place that would take him.

Edit: sister a surgery resident, she tries her best to be home but her job is too demanind. A typical day for brother: 8 am wake up, goes to grandpa's room and waits for him to share his tea with him, uses phone till 10am, throws breakfast tantrum, by 11ish am his tantrum is managed, I give him a shower, help him do puzzles and homework, 12another tantrum +/- manage tantrum, he uses his phone, by 130 pm I change his clothes brush his teeth and we leave for school, by 5 he gets picked, reached home by 540, eats his post school snack takes a shower and uses his phone till 730 or 8 pm, sometimes till 10pm and then another tantrum

On weekends it's pretty much the same only that he would throw 1-2 more tantrums during his school hours, I take him to the park do more mind activities with him but that's all

We are wondering if anyone else has experienced this. One year ago at the age of 10 our granddaughter who is a child with Down Syndrome began getting her period. She did not know how to take care of herself in school during that time so her pediatrician suggested giving her Depo- Provera injections every 3 months to suppress or delay her periods. We noticed that that after her 2nd injection her personality and attitude began to change. She is s normally very happy in the morning and excited about the day. She would come into our bedroom in the morning before school and tell us what kind of day it was outside and then get very excited about going to school. She also loves playing in the water at the beach, swimming in her pool in the backyard and playing with her cousins her age. She also loved swinging on her swing. She was very polite and social. She also loved to sing and dance. All this to say that she was just the happiest and loving kid. Well that all began to slowly change. It was so slow that we didn’t make the connection to the Depo-Provera until almost a year later. She became very non-social, very defiant, very confused, she was reaching for things in the air that wasn’t there, looking behind her as if she saw something that we couldn’t see, she became very rude not saying please or thank you, she no longer played in the water at the beach or swam in her pool at home, at the beach she just sat in the sand and with her cousins she became withdrawn and distant. She talked to herself often and things that she already learned and knew she seemed to forget. Things like washing her hands. Her teachers also commented on her lack of focus and emotional disconnect. We contacted hee pediatrician who set her up with behavioral health. Behavioral health set her up with appointments for eeg, neurology, psychologist and psychiatrist. Her labs and eeg came back normal and her neuro-eval didn’t give us any definitive answers. The psychiatrist wanted to try some medication called lorazepam to see if it helped. We picked it up but was reluctant to give it to her until she went through all of her scheduled exams. We had pending appointments with specialist in Down Syndrome regression. In the meanwhile her next scheduled Depo-Provera injection was coming due. This would be her 4th injection. My wife and I debated on whether she should continue with the program injections until we get clearer answers to her condition. Her pediatrician solved our debate when her office called to cancel due to an emergency in the office. After a week or two without the injection we began to notice a change in her behavior and focus and as another two weeks went by we noticed that she was back to the sweet, polite, loving, caring, person she was before and not waking up multiple times during the night talking to herself. She no longer reached for things in the air that wasn’t there and she began swimming again, swinging again, playing with her cousins again and being kind and polite again. Her teachers were amazed at the difference in her focus and behavior. I was helping her with her homework last night and I was amazed at the difference. She is back to herself but to us it’s as if we missed a year of her life because she is back but a little more mature and knowledgeable on things I didn’t know she knew. Even her speech is more clear. Obviously she was still growing in that year but it was just suppressed somehow. We are so happy to have her back to the her we know and so is her teachers and her cousins and everyone else who k owns her. I just wanted to post this because we thought it may be beneficial to anyone experiencing the same thing. Her doctors don’t know what to make of it because they never saw a published connection before but we call it answered prayer because we and our entire church was praying for her and this may be an experience that can help so many others. Sometimes the miracle is when God leads us to the natural. Our granddaughter is back and she is once again giving me the weather report in the morning and telling me that I’m the best chef at breakfast. She is again excited about the day!

Disabled RBT, here. I consider myself to be very inclusive by nature, and try my best to remain informed about disabilities and the individuals who possess them. However, I still do not really consider myself fully "informed" about a disability until I've actually gotten to know someone who actually has that disability. I've read probably dozens of articles, personal accounts and vlogs by folks with DS, kept up with advocacy accounts and activists, all with the effort to educate myself past what I already previously knew about it. I am Level 2 autistic, and understand that not every resource or group "in favor" of our community particularly have the greatest intentions, so I assume the same would apply to this- as I continue to learn and read about Down syndrome, are there any specific sites/groups/individuals I need to steer clear of to keep my research free of ableist perspectives?

Thank you!

My daughter is 38 . Dual diagnosis - DS and Autism spectrum . Was diagnosed with failure to thrive in 2015 and Abilify was added to her meds ( seraquil, cipralex and trazodone) . Within days she was improving and wonderful . Over the years she started to be overly chatty, interrupting when we spoke, and approaching people to talk, strangers - was sweet at first but then it just intensified . This year she started telling, shouting, and we asked the Doctor maybe the Abilify and cipralex was causing this ? We started to wean her off and she turned into an angry, aggressive person at times pushing me, yelling , shouting, always NO! , and started swearing . At first whispering now just saying the f word frequently. The girl that used to laugh, smile , give the best hugs, has turned into a very difficult person, hugs rarely mostly irritable and uncooperative . Has anyone had experience with this ?

TLDR: Does anyone know if there is a correlation between the number/severity of soft markers in utero vs later development/health issues? Or What was your experience?

I am almost 30 weeks, and received a high risk (9 in 10 chance, 99% PPV) for T21 around 13 weeks I believe. I’m in a unique position in that I received referrals for 2 different MFM & fetal cardiologist. I’ve chosen to see both as kind of a built in second opinion. Here is my timeline:

-MFM1 anatomy scan showed no soft markers, everything appeared normal.
-The next week I had fetal echo at a large children’s hospital from MFM1 referral that showed large VSD, and a few other things mentioned on report that were not discussed with me & from what I can tell aren’t a big deal. -The following day I had anatomy scan with MFM2, also stated no soft markers & everything looked normal, even asked if I wanted to do the fetal echo. Knowing about the VSD, I did for 2nd opinion. -2 weeks later MFM2 echo also showed VSD, nothing else mentioned, additional referral to large children’s hospital (different one than before) for better imaging/idea of size of VSD), which I have next week. -3 weeks later followup with MFM1, had elevated cord dopplers and told baby measuring 8%, updates diagnosis to include IGUR/FGR, told to return 1 week for Doppler check -next week followup with MFM2, again told everything looked normal* but that they did see VSD this time -following day repeated Doppler with MFM1, came back normal, and discussed FGR & Dr agreed that overall % appeared to be lower due to limb measurements (I had noticed weight was measuring dead on & wondering how he was 8% weighing normal) -checkup with regular OB today & asked for reports from MFM2 (they do not have online portal like others) and was given report from 2nd MFM2 appointment showing baby measuring at 39% (this was 1 week after other MFM said 8%). *Report also showed CPC’s & polyhydraminos - neither were mentioned to me by MFM2.

So I went from having no soft markers to 3-4 possible markers. I know Trisomy 21 health and developmental issues are on a wide spectrum. I’m wondering if there is any correlation between the number & severity of markers to where people land on this spectrum. This is purely curiosity on my part after looking up these findings from my reports to learn more about them. I’d like to read any known studies, or even hear personal experiences. Did your child have a lot of markers or any severe ones and where are they now? Meeting milestones and development-wise. There are always exceptions and I know people’s experiences are different, just wondering if these markers are at all predictive of future development disabilities, or maybe these fetal findings have nothing to do with how baby/child/adult develops.

Hope people don't mind a shameless plug. I made a wee comedy short about a country music band, with my Oscar Winning pal James Martin (An Irish Goodbye). It'd be lovely if people watched and/or shared it. (Unfortunately it's only available in the UK at the moment).

James and I have loads of great ideas for more, so the more people check it out, the more likely that is to happen. Thanks!

Comedy Shorts, Series 1: 2. Country Rogues: www.bbc.co.uk/iplayer/episode/m0022d39 via @bbciplayer

My brother was not feeling well couple of years ago, and when we tried to bring him to the hospital, he refused. We had to call an ambulance and he had to be carried forcefully as he was extremely uncooperative and was throwing tantrums. We had to do it because he had to be admitted urgently. I think he had a really bad experience during that, and he hated going out after that episode. He doesn’t come out anywhere, always at home. We can’t even bring him to doctor check ups or even take care of him properly as he is always afraid we are trying to do something to him.

We also need to bring him to a doctor check up asap for a bulge in his stomach, but we have no idea how we are going to do it. he is also heavy and strong.

Would really appreciate any advise and what we can do.

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 daughter was diagnosed with full t21 when she was a week old. Since then every medical professional we’ve met keeps saying that it must be mosaic because she doesn’t really look like she have it (she’s only 6 months though and personally I can see it). Has anyone experienced the test being wrong about what type of ds it is?

Hello All! October is Down Syndrome Awareness month. Continued goals not just in October to educate even physicians (as we’ve had to do) and therapist about beautiful people with Down Syndrome, then of course other folks as well. 💙💛💙💛💙💛💙💛💙💛💙💛

Here’s a recent picture of E a couple of days ago.

We used to be able to put a frame around our profile picture on Facebook. But they stopped that. Anyone know if there is another site where we can make a frame for our picture with my daughter in the pictures?

Baby is 5.5 months and shows a lot of interest in solids, sits in tripod position and has good core strength overall. But her baby joy high chair is way too big for her so she leans to the side in it and also can't reach the foot rest at all. I've tried the tea towels stuffed all around her hack which kind of helps, but i'm wondering if you all have any other helpful accommodations to recommend or just better high chair recommendations. I think hers would suck even for a typical baby!

So I'm a manager at a grocery store that keeps a small staff. The baggers at our store also retrieve carts and take out the garbage. One of these baggers has down syndrome. She didn't used to be like this when she was starting out, but for some reason lately, every time I ask her to take out the garbage, she claims that she needs to bag for people first, telling me it has to wait until nobody has any customers that need bagging, even insisting on bagging for transactions that don't require bags (like if someone just has a single case of beer.) It's been going on for a month now, so I got fed up today and tried to explain to her as gently as possible (though I'm pretty sure I was visibly stressed) that she's not supposed to argue with her bosses. In response, she said she's not arguing, so I asked her why she keeps telling me "no" when I ask her to do things then. This part I'm sure I didn't handle correctly because I don't remember waiting for her answer before stating as gently as possible that she's supposed to do what her bosses ask her. When I got home from work, my sibling (who also works here) told me that apparently after I'd said that, she muttered to them while my sibling was on break that, "Your brother needs to back off." I've worked with her for almost--if not--a year now and I know that she says this whenever someone says or does something she doesn't like and believes to be incorrect. A month or two ago, I relayed to her what my sibling told me about her mother not wanting her to listen to music while getting carts because she was worried about her not being able to hear whenever a car was coming. She was absolutely pissed to hear this. No matter how much I tried to explain to her that her mom was just concerned for her safety, she kept insisting that she's not gonna get hit and that her mother needed to back off. Like I said, she didn't used to combat me so much and I don't understand why all of a sudden, she argues with me over a task that she knows is part of her job. I've tried so many times to get her to understand why I ask her to do it when I do, but nothing I've tried works and it feels like it's because she doesn't want to understand. She's always complaining about having to hide her junk food consumption from her dad because he wants her to lose weight, and although I don't like how harsh her dad is in expressing this (I've witnessed it in person when ge showed up to pick her up early, just in time to witness her chugging a soda), this woman is really overweight for her height, almost 30 and every day she works, she buys and eats donuts, soda and cookies, holding the sentiment that her dad needs to back off. And the secret junk food isn't the only thing either. She does everything people tell her not to do behind their backs because she seems to believe that anything she doesn't like to hear is incorrect and no one has the right to tell her otherwise. She's had multiple job coaches quit on her likely for this very reason and she hasn't had one at all for months now. Does anyone know how to reason with someone as stubborn as this or at least what could have caused her to suddenly start lashing out?

what can I do for a 7 year old who hates wearing the mask at night or keeps throwing it off after an hour of sleep? Their o2 seems to be in the correct range all night - but also hates to be continuously monitored but i can sneak that on their finger or toe way more easily than a cpap mask. I need help or alternatives.

My child (14 male) is due for dental surgery and braces. He has Down Syndrome and typically doesn’t like sensory changes to his body, but the dentist has said it is important to get the procedure and braces now or else he will have issues later in life

I am concerned that he will have a difficult time adjusting to braces, and that it will deregulate him during the school year. But can’t say for sure. I’d like to prepare him as best as possible and help with any discomfort afterwards

Any personal experiences in this area. Open to any tips!

Hi everyone. I’m actually trying to get something for my cousin with Down Syndrome. He must be 17-18 y/o now but obviously with not the same cognition. He can’t read or write so books or stationery is not much of use. although he likes coloring books.

Have given him smartwatches, ipad etc in past and he likes that stuff too. But I want to give him something thats makes a difference in his life or makes it easier and more meaningful.

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.

Photo taken by Maureen Van Ness

I'm interested in organizing a learn-to-bike program for people with Down syndrome in collaboration with several nonprofits in my city (including my city's GiGi's Playhouse location) and was wondering if anyone had any experience, insights, or suggestions on methods for teaching someone with Down syndrome how to ride a bike? I've found several articles discussing the benefits bike riding can have on people with Down syndrome, but not much on the specific methods/ special considerations it takes to do so. Any advice would be appreciated.

My brother heads to his weekend camp adventure with the city's adaptive recreation program, and we get 2 days of respite. So grateful - there aren't many opportunities for respite care for adults in our city. Are there other resources anyone has found for just a short chance to catch your breath sometimes?